tag:blogger.com,1999:blog-8367929943995678112024-03-26T14:54:26.912-07:00Ordinary MiraclesKimi Sorensenhttp://www.blogger.com/profile/14667958984106551484noreply@blogger.comBlogger44125tag:blogger.com,1999:blog-836792994399567811.post-49051329887397268762023-04-07T06:22:00.003-07:002023-04-08T08:39:21.180-07:0017 years out. 17 years in<p>Where do I even begin? Well, the good news is that most of you know the story already. So, anyone new reading this, sorry but you're going to get the abridged version. So, I had the surgery 4/6/2006. and you would think that after a couple days lying flat, I would be all good to go home. But unfortunately, that's not how it worked out. About 15 hours after they put the new shunt in my spine, the one in my spinal canal, that they just freshly put in. Toast. The one in my skull? See ya later, both of them had malfunctioned. Sending me into a major pain crisis. Vents huge, projectile vomiting, screaming, you know how it goes. Dr. C comes in and says, this is it. This is what I've been waiting for. Remember when I told you if her vents become huge accidentally, I wanted to try the third ventriculostomy? Well, this is my chance. He even tilted the head of my bed backwards, so my ventricles would get even bigger faster. He said, she's not going to have a life unless we do something now. Meaning unless he decided the 3VC and only the 3VC, I wasn't going to make it in his eyes. So, what was my mom supposed to do? He gave her an ultimatum. Except the consequence was going to be far greater, if she didn't say yes. And the last thing he said was this is probably going to be a 10-hour surgery, so get comfortable (which idk why he said that I've looked it up it takes 1-2 hours max). When he was telling my mom this, it was around midnight. So, when she saw him coming through those doors at 6am, she knew something was wrong. He proceeded to tell my mom, that I had a hemorrhagic stroke during the surgery, and they were unable to finish. He said we were able to make the bypass in the 3rd ventricle, but they weren't able to make it was big as they wanted, so I did still need a shunt, which if anyone is unfamiliar with third vetriculostomies, they are a treatment that will hopefully be able to let you avoid the shunt. Which most doctors want to do these days, if you are a candidate, because shunts obviously have their own problems. Then he said, I'm not sure if she can speak or not, when she was waking up, I tried talking to her, but she didn't answer me. Her speech is most likely affected, her right side is affected, fine motor skills will be greatly affected, but she has her age on her side, she's so young, she will be able to gain everything back in a year tops (spoiler alert, didn't happen)</p><p>I have been imagining this day since the stroke first happened. And I can't believe the day is actually here. That sounds weird, if you just read it with an upbeat connotation like I do, so let me explain. In years past, I would think to myself, am I ever going to get to a day, where I don't notice that my fingers don't really work anymore? Will I ever wake up and not notice that my hand is in a tight fist? And to be honest, I still think that from time to time. April, and the days and weeks after it have literally silenced me. Thinking back over the past 17 years, it has not gone as planned. And anyone who knows me knows that I can't do anything without a plan. But in reality, does anything go as planned? My life was forever changed on April 7, 2006. And I don't want that to be automatically construed as a negative statement, but I also don't want it to be automatically interpreted as a positive statement. It's more of an in-the-middle statement. Not exactly knowing which way to lean. Knowing I can't truthfully lean completely in one direction or the other. So, in a way that's good right? But the question remains. Do I feel as though my body is still foreign to me? Or have I gotten used to it? Something I promised myself would NEVER happen. I remember who I was, and I miss her. If I think hard enough, I can be back there, but then when I just try to grasp that feeling, right when it becomes tangible, it's like it's blown just out of my reach. Every time. But I will say, I LOVE the adult that being sick has turned me into. It's a strange paradox. It's like you're straddling a line with fire on one side, and terrifying angry tigers on the other. </p><p>If I were only able to think of one word to describe this time in my life, I think it would be continue. Because that is literally the only thing, I could do by myself. I couldn't walk unaided, I couldn't speak. It was as though I was locked in a prison. I could absorb everything, but I couldn't verbally react unless you count crying. I was the only person who could make the decision to continue. I never really considered myself to be a extremely independent person, but in this recovery process, I had to be. No one could make me better but myself. I was the only person who could decide to do the therapy, I was the only person who could decide to decide to speak; to take another lap around comer CICU, with the walker. </p><p>So, 17 years later. Where am I? Keep reading and you will find out! I always say when it comes to my being sick, if I had to do it again, just to keep everything I've learned and the outlook I gained, the wonderful friends I've made etc. that I would without a doubt. But I've recently had a revelation: you know how it's going to end (and not to mention that could never happen🙄). If you were to do it again, you know everything that's going to happen. I know every horrible step, but I also know that every horrible thing that happens is going to have a happy ending. So, I think I will change my answer for the first time in 17 years, just a little. Yes, I would go through it all again. BUT if and only if I were able to see what my life would eventually look like. I just finished a post baccalaureate program at my alma mater, Dominican University. I brought my GPA up literally a point and a half. I'm applying for jobs at University of Chicago. Once a patient, then a volunteer/intern, maybe an employee in the future. So happy that 17 years ago I made the decision to continue, and as my dad says Never Give Up. Next 17 years, I hope you're a little kinder to me, but whatever you have in store, I'm ready for ya.</p><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj6o2BantATgbdViGpMfgPaH_GLX_ebPCb4DDt_aB_UnhhSfUrbELh5DaQNvW90nC079XvvA5BmyyKyOuj_uoGSW4lOBQhZjQK0QOhLoyun9V04l-LxAEAr88pK1dd-5jvPrQUkReWgJyDoH8P5sEskNhY91XrvKJBpDT0KPM3-4tc5ln53fM1mPOMTMg/s674/quote.jpg" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="674" data-original-width="450" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj6o2BantATgbdViGpMfgPaH_GLX_ebPCb4DDt_aB_UnhhSfUrbELh5DaQNvW90nC079XvvA5BmyyKyOuj_uoGSW4lOBQhZjQK0QOhLoyun9V04l-LxAEAr88pK1dd-5jvPrQUkReWgJyDoH8P5sEskNhY91XrvKJBpDT0KPM3-4tc5ln53fM1mPOMTMg/s320/quote.jpg" width="214" /></a></div><br />. <p></p><p><br /></p>Kimi Sorensenhttp://www.blogger.com/profile/14667958984106551484noreply@blogger.com0tag:blogger.com,1999:blog-836792994399567811.post-43338293877711075512022-04-11T05:47:00.005-07:002022-04-11T09:25:32.957-07:00April 11, 2006<p class="MsoNormal" style="line-height: normal; mso-margin-bottom-alt: auto; mso-margin-top-alt: auto;"><span style="background: white; color: #1d2228; font-family: "Times New Roman",serif; font-size: 12.0pt; mso-fareast-font-family: "Times New Roman";">This
is something I never really elaborated on. I just always included it as a
little blurb after my April 7th post as maybe the last paragraph. But 4 days
after I had the stroke, I was in PCICU, my mom was literally sleeping in a
chair because in PCICU there aren’t even rooms really, but I remember just
staring at the ceiling. It was dark, and I was just staring into this
never-ending abyss of black. Wondering, where do I go from here, will I
ever be the same again, but at the same time, realizing that I wasn’t saying
any of this. I was just thinking it. I think it was in that moment that I
completely grasped the enormity of what it was to be unable to communicate. And
as I lay there trying to wrap my head around the fact that I can hear myself,
but literally no one else can, I realize that actual sound is coming out of my
mouth. At first, I was so excited because I thought omg maybe they were
wrong I’m going to be fine, I’ll show them etc. But then I realized that
everything that I was “trying to say”, was NOT coming out correctly. I like to
compare it to the way a 6-month-old baby babbles. But no matter how much I
tried I couldn’t say these words in the way I wanted to. Suddenly, then I see
my mom. Standing above me, and I look into her eyes with this feverish omg HELP
ME look. She knew something was going on, and she needed the Dr. K ASAP. The
long and the short of it was the doctor, after being interrupted in her social
conversation multiple times, came over to me and looked at me for approximately
2 seconds. Then she turned white as a ghost, and yelled something to the
on-call nurse, and she got me down to CT scan I think the fastest I've
ever gotten down to CT scan. It was absolutely crazy. </span><span style="font-family: "Times New Roman",serif; font-size: 12.0pt; mso-fareast-font-family: "Times New Roman";"><o:p></o:p></span></p>
<p class="MsoNormal" style="line-height: normal; mso-margin-bottom-alt: auto; mso-margin-top-alt: auto;"><span style="background: white; color: #1d2228; font-family: "Helvetica",sans-serif; font-size: 12.0pt; mso-fareast-font-family: "Times New Roman";">Then
as they're doing the CT scan, I feel as though I'm about to get sick, but as
I'm watching the film spin around and around, I keep telling myself,
"don't worry, you will be out of this, in a mere 20 seconds. Just keep
breathing slowly, and you will be fine. But I couldn't do that. All of a
sudden, the CT tech, Dr, K, and my mom see projectile vomit coming out of the
CT scanner. Everyone runs in, and all I hear is, "Sit her up, sit her
up," I remember trying to help them, but then realizing I had absolutely
zero trunk control. I couldn't sit up on my own, I couldn't really lift my head
on my own, I couldn't do anything. Then when they felt they got me stable
enough to move, we went back up to the PCICU, Dr. K told my nurse who was in
charge of me and another patient that night, that she had assigned another
nurse for her other patient, and that I "needed a lot of attention".
She also asked her to go to the supply closet to grab her some chucks and a few
other things, that she wanted to do a bedside LP. She was suspicious that the
blood that was in my brain, was causing some if not all of my issues. Sure
enough, she did the LP, and the first drop of CSF, came out pink. </span><span style="font-family: "Helvetica",sans-serif; font-size: 12.0pt; mso-fareast-font-family: "Times New Roman";"><o:p></o:p></span></p>
<p class="MsoNormal" style="line-height: normal; mso-margin-bottom-alt: auto; mso-margin-top-alt: auto;"><span style="font-family: "Helvetica",sans-serif; font-size: 12.0pt; mso-fareast-font-family: "Times New Roman";">Dr. K was finally able to put all of
the pieces together. She also realized through doing this LP, that my pressure
was a lot higher than it should have been, that the blood got itself clogged in
the shunt, and broke my shunt. So neurosurg was called, and emergency surgery
was done that night actually. So that took going to RIC downtown, in 2 days off
the table. But as I was able to recover more from that surgery, it became
clearer and clearer to me that I didn't feel like the same person who walked
into Comer Children's hospital, just 2 weeks ago. When I looked in the mirror,
I just saw a shell of myself. I didn't know how to get me back; I wasn't even sure
if I cared enough to get me back. At this point, I was in my own little world,
that I had created for myself. It's like that peaceful, drama free bubble
everyone talks about wanting to be in. Well, I created as close to the real
thing as is humanly possible. I wasn't talking to anybody. Not even the speech
therapists, and they knew I understood them. They told my mom that this
was all completely normal, but nothing about your 17-year-old having a stroke,
and literally having to start again at literally square 1, is normal. <o:p></o:p></span></p>
<p class="MsoNormal" style="line-height: normal; mso-margin-bottom-alt: auto; mso-margin-top-alt: auto;"><span style="font-family: "Helvetica",sans-serif; font-size: 12.0pt; mso-fareast-font-family: "Times New Roman";">I remember when the speech
therapists would come to my "area." They would bring communication
boards, and flashcards, and everything possible to get me to start talking
again. I remember, one of them asking me how I felt that day, and I just looked
into her eyes for seemingly forever, and then I stared at the many
communication boards that were sitting before me. I finally found a word that
described what I was feeling. But I didn't want to point to it, because I
thought I would get in trouble. The word was afraid. I was so afraid of anyone
reading my chart, any doctor or nurse coming into my room, because I equated
them with bad news. And as if getting your life taken just out of your reach,
wasn't scary enough, I didn't want any more bad news, which was the only thing
on my mind at that point. I felt like if I was expecting bad news, it wouldn't
be such a blow if I got bad news because I was emotionally prepared for
it. <o:p></o:p></span></p>
<p class="MsoNormal" style="line-height: normal; mso-margin-bottom-alt: auto; mso-margin-top-alt: auto;"><span style="font-family: "Helvetica",sans-serif; font-size: 12.0pt; mso-fareast-font-family: "Times New Roman";">About 3 days later, a physical
therapist walked in. With a walker, and one of those PT belts. And she said, in
the most high-pitched annoying voice you can ever imagine, "Hi Kimi! We
are going to try walking today! My face? Imagine the best resting bitch face
you can. She tied the band around my waist, and put the walker at my bed. I
remember feeling so worn out just after literally sitting up. I finally had the
courage to stand up. My legs literally felt like jello. Not walking on them for
10+ days and a stroke will do that to you. my right leg felt so heavy. Like it
had a weight on it. She said, "Ok we are going to try and walk half way
around the floor. But your mom is behind me with the wheelchair if you get
tired. I wasn't talking at all. To this day, I'm not really sure if I couldn't
talk, or just didn't want to. But I made it to the halfway point! And then she
asked me if I wanted to get in the wheelchair, or walk back to my bed. I just
started walking. Apparently anything to avoid talking. <o:p></o:p></span></p>
<p class="MsoNormal" style="line-height: normal; mso-margin-bottom-alt: auto; mso-margin-top-alt: auto;"><span style="font-family: "Helvetica",sans-serif; font-size: 12.0pt; mso-fareast-font-family: "Times New Roman";">Today? If I know you, I will talk
your ear off if there's something I really want to tell you. If I don't know
you as well, and/or you don't have a clue about my medical history, I may
appear a little standoffish. But once you have gained my trust, it's like we've
been besties forever. But here’s a warning, if you ever do anything bad
enough to break that trust, good luck at getting it back. It rarely happens. I
love hard, and try even harder. I don't know what tomorrow will bring, but
whatever it is I'm ready for it. <o:p></o:p></span></p>Kimi Sorensenhttp://www.blogger.com/profile/14667958984106551484noreply@blogger.com0tag:blogger.com,1999:blog-836792994399567811.post-43435858464166447522022-04-07T06:54:00.000-07:002022-04-07T06:54:08.809-07:00If I Could Go Back and give myself a Roadmap for the next 16 years<p></p><p></p><p></p><p><span style="color: black; font-size: 13.5pt;">OMG! It's that time of year
again! As I get older these things come around more and more quickly. I can see
that doe eyed "little" girl lying in that bed. Sleeping Sleeping all
the time, just to escape the pain. When she is awake, she is just staring at
what had become her world now trying to decipher how she could have let this
happen, or was this all her fault? How could it come to this? How
could he let this happen? OMG I can't speak or move my right side, is this what
a stroke is!? What is happening!? I know all of your questions. I wanted to
give you a roadmap of sorts.<u1:p></u1:p><o:p></o:p></span></p>
<p style="-webkit-text-stroke-width: 0px; font-variant-caps: normal; font-variant-ligatures: normal; orphans: 2; text-decoration-color: initial; text-decoration-style: initial; text-decoration-thickness: initial; widows: 2; word-spacing: 0px;"><span style="color: black; font-size: 13.5pt;">For those of you who don't
know, which I don't think there aren't many of you at this point, but I had a
hemorrhagic stroke on April 7, 2006, as a result of a failed 3rd
Ventriculostomy (3VC, ETV, idk there are a lot of names for it). That stroke
took away my ability to talk, walk, and pretty much do anything with my right
arm and hand. The first few days were pretty rough, as I'm sure you can
imagine. Not being able to communicate at all, really is annoying. No matter
how much I ever say, "Oh I hate people, or oh I hate working in groups or
talking with people, I will never hate it enough to go back to that (If it were
even possible)<u1:p></u1:p><o:p></o:p></span></p>
<p style="-webkit-text-stroke-width: 0px; font-variant-caps: normal; font-variant-ligatures: normal; orphans: 2; text-decoration-color: initial; text-decoration-style: initial; text-decoration-thickness: initial; widows: 2; word-spacing: 0px;"><span style="color: black; font-size: 13.5pt;">A lot of people ask me what I
would say to that 17-year-old little girl. It would be this. I want you to
know, sweet one, that any emotions you feel are okay and valid. There are no
such thing as good and bad emotions. There are just emotions. Emotions come and
go just like passing clouds. They don't need to be judged. You just need to
compassionately gently take care of yourself while the emotional storm hits.
You deserve to find the best way possible for you to cope in this moment.
There's no right and no wrong. This is new territory for everyone. So, you
write your own rules for this. Whatever feels right. It’s completely normal to
think you had an awesome day in therapy, think you rocked it and then to come
back to it the next day feeling you made absolutely no progress at all, and
feeling absolutely defeated.<o:p></o:p></span><u1:p></u1:p></p>
<p style="-webkit-text-stroke-width: 0px; font-variant-caps: normal; font-variant-ligatures: normal; orphans: 2; text-decoration-color: initial; text-decoration-style: initial; text-decoration-thickness: initial; widows: 2; word-spacing: 0px;"><span style="color: black; font-size: 13.5pt;">Lean on those around you. This
is too much to have to handle by yourself. I know you have always done things
on your own, but bearing this huge burden all by yourself, is so much for you
to take on with trying to recover and trying to do schoolwork.
Feeling overwhelmed, frightened, doubt, and despair are all normal. Don't fret,
they won’t last; they're like passing rain clouds, they come, stay for a little
while, unfortunately make your life a little more difficult, and then they're
gone. Then you move onto the next hurdle. Trust me. Nothing comes with no
reward; it will take you a while to see it, but once you realize it’s there,
you will never let it go.<o:p></o:p></span><u1:p></u1:p></p>
<p style="-webkit-text-stroke-width: 0px; font-variant-caps: normal; font-variant-ligatures: normal; orphans: 2; text-decoration-color: initial; text-decoration-style: initial; text-decoration-thickness: initial; widows: 2; word-spacing: 0px;"><span style="color: black; font-size: 13.5pt;">You will have doubts, everyone
does. You will wonder is this all worth it, you will wonder where “yourself”
is, you will wonder if she will ever come back. But your eyes stay fixed on the
one person who has remained constant through this entire thing. The man that
“did this to you”. The same man who brought your story to all the neurosurg
conferences in the country. The same man who said, I was supposed to be in
Texas a month ago, but I couldn’t leave until I knew you were with someone I
trusted. If you’re reading this Dr. C, just know this, you never had to prove
anything to me. The phrase actions speak louder than words, exemplifies your
dedication to my complicated case.<u1:p></u1:p><o:p></o:p></span></p>
<p style="-webkit-text-stroke-width: 0px; font-variant-caps: normal; font-variant-ligatures: normal; orphans: 2; text-decoration-color: initial; text-decoration-style: initial; text-decoration-thickness: initial; widows: 2; word-spacing: 0px;"><span style="color: black; font-size: 13.5pt;">Kimi, I know every year, on one
hand you can’t believe another year has gone by but at the same time, it has
taken forever, you’ve almost been “disabled” as long as you were not. You can
say you’re used to it, but I know that no part of you is. I know every fear you
have, and every fear you will have. And I can tell you every single one of them
is justified.<u1:p></u1:p><o:p></o:p></span></p>
<p style="-webkit-text-stroke-width: 0px; font-variant-caps: normal; font-variant-ligatures: normal; orphans: 2; text-decoration-color: initial; text-decoration-style: initial; text-decoration-thickness: initial; widows: 2; word-spacing: 0px;"><span style="color: black; font-size: 13.5pt;">So what am I up to now? I’m
just finishing up the second semester of my post bacc program. Hopefully
working this summer in an unnamed (by choice) research facility as an intern,
and then going into my last semester. What am I going to do with this degree?
Get a job in research and organizing clinical trials. I’ve made it my mission
to not let any child go through what I have. <o:p></o:p></span></p>
<p style="-webkit-text-stroke-width: 0px; font-variant-caps: normal; font-variant-ligatures: normal; orphans: 2; text-decoration-color: initial; text-decoration-style: initial; text-decoration-thickness: initial; widows: 2; word-spacing: 0px;"><span style="color: black; font-size: 13.5pt;">My scars are many. I used to be
so embarrassed by them. I remember when I had a long, red scar on my neck,
and I had to go to a formal dinner, a month after surgery, I told my mom I
wasn't going unless I could find a necklace that would cover my scar. But now I
get it. My scars tell a story all by themselves. They tell a story that I would
never be brave enough to tell on my own; A story that says I survived.<o:p></o:p></span></p>
<p style="-webkit-text-stroke-width: 0px; font-variant-caps: normal; font-variant-ligatures: normal; orphans: 2; text-decoration-color: initial; text-decoration-style: initial; text-decoration-thickness: initial; widows: 2; word-spacing: 0px;"><u1:p></u1:p><span style="color: black;"><span style="mso-spacerun: yes;"> </span><o:p></o:p></span></p><br /><p></p><p></p><p></p>Kimi Sorensenhttp://www.blogger.com/profile/14667958984106551484noreply@blogger.com0tag:blogger.com,1999:blog-836792994399567811.post-81033226092968597832021-04-06T22:00:00.055-07:002021-04-29T15:13:03.138-07:00What My Stroke Forced Me to Do, and Why I’m not the Slightest Bit Sorry<p><span style="font-family: inherit;">Hi folks, it's that time of year again! Wow! In some ways I can't believe it, and in other ways it feels as though the past couple of years have just been scraping by for different reasons of course. But I had mentioned right after quarantine started, that it wasn't a huge deal for me, the safety measures that were being taken, quarantine etc, and at the time it was 110 % true. But I will admit as the days have gone on and Corona has clearly shown us that it isn't going anywhere, it has gotten to be a little much. When Corona first started, and everyone was going crazy, buying toilet paper (really guys) and stock piling foods, I didn't take it seriously. it wasn't until I got Corona and had to really go into quarantine, in my own apartment, (literally couldn't leave my room) that I realized why everyone was so afraid of this virus. but anyway, that's not what this post is about; well it sort of is...…</span></p><p><span style="font-family: inherit;">I can't believe it's been so long. I've been writing about for an eternity it feels like(wow the past 5 years, that's meant to be a facetious comment haha). Last year I did 14 things I've learned for 14 years. And no lie I was amazed that I came up with all 14. As I look back on these past 15 years, a flood of emotions hit me like a tidal wave on Lake Michigan. Cold, and unexpected.(well sort of) In very recent years it's not sadness the feeling that automatically came with this date for so long. So many people in the medical community said it would be a miracle if I ever did X, whether that was graduating from high school, going to a four year university, and graduating that university. I felt like their inability to see what I saw that I was capable of sort of pushed me forward in a way.</span></p><div dir="ltr" style="background-color: white;"><span style="font-family: inherit;">I was on the youngish side when I got sick. And so quite honestly I didn’t really know how to “give up” especially on myself, it just never really crossed my mind. I think that giving up is very much a learned quality that is built on many years of hardship that unfortunately, we all have to go through at some point in our lives. But as kids, young teenagers I didn’t really want to give in and with all the professionals all around me telling me that it was possible to get back to where I was pre-stroke just made me try even harder. I didn’t want to say ok you win. I couldn’t; not if I was going to achieve my dream of graduating with my class. Giving up, or giving in was something I had never done before, and for that reason I’m so glad that I got sick/had the stroke when I did. I wouldn’t say no to my physical therapist when she asked me to do a complete set of </span>bicep<span style="font-family: inherit;"> curls, or shoulder squeezes, all I knew was what I was constantly being told. </span>That<span style="font-family: inherit;"> if I did the therapy religiously I would be better, in a year, so I think you can understand how crushed I was when it didn’t turn out </span>that<span style="font-family: inherit;"> way. Honestly I didn’t </span>know<span style="font-family: inherit;"> what I was thinking. You’re not suddenly 100% a year later no matter how much therapy you do(especially if you have as many complications as I had).</span></div><div dir="ltr" style="background-color: white;"><br></div><div dir="ltr" style="background-color: white;">A majority of the people who have strokes in their lives, are up there in age. That's no secret. But what if I told you that behind that tear stained face there was a silver lining? I can't imagine the person I would be today if the past 15 years didn't happen the way they did. But I don't always want that to be a 100% positive statement either. Yes I have a good attitude about this now, but yes there are also certain things that I wish didn't happen, or happened differently. </div><div dir="ltr" style="background-color: white;"><br></div><div dir="ltr" style="background-color: white;">I literally feel cliché saying this, but having a stroke changed my life. Clearly; waking up and not being able to communicate and/or use the entire right side of your body will change your life in more ways than one, but you decide if that change is going to be positive or negative. Having the stroke when I did, made me step back and almost look at my life with a birds eye view. It was literally almost like I was watching myself do everything. You would be surprised what happens when you step back and are able to visualize your own life. I wouldn't exactly say I recommend it, but sometimes you have to do it, for your own sake. For me it only happened after that tragic event, so in that way I don't recommend. I saw the new way I had to do things, and almost gave myself permission to do it in that way. And it was so incredibly freeing, but that doesn't mean I wasn't bending over backwards to get myself to where I was on April 6 2006. But by giving myself "permission" to change the way I did basically everything, was so much more liberating than I thought it would be. </div><div dir="ltr" style="background-color: white;"><br></div><div dir="ltr" style="background-color: white;">Having a stroke and having so many things taken away from you that once you were able to do seemingly effortlessly, definitely humbles you. I used to do pretty much everything by myself, and suddenly l couldn't even go to the bathroom by myself. I could barely say a sentence without practicing it in my head for 5 minutes; and then it still would come out only half right. It wasn't until this point in my life that I had a real "life challenge". And suddenly I was literally locked in. I could talk; yes, but I was so afraid because I didn't even know what a stroke was really. I didn't realize that it could disrupt your life this much, and take this much of your world away from you. But it was during this time, that I was able to discern what was really important in my life. It unknowingly forced me to slow down and enjoy my life and the things I could still do. After I learned that people die from strokes, are never able to walk or talk again, or are left permanently disabled, made me so unbelievably humbled and grateful. In those two weeks I was in the hospital after I had the stroke and another shunt revision, I learned how to walk again, and regulate my breathing enough that I could speak; and I was so close to being able to open my hand unassisted. For anyone who doesn't know, I'm in physical therapy right now for an injury that my PT thinks stemmed from the stroke and thus my poor posture. When I walked in there for the first time I felt a flood of emotions. I told myself, I was never going to see the inside of a PT studio again, and yet here I was. But hopefully I won't be there too much longer fingers crossed.</div><div dir="ltr" style="background-color: white;"><br></div><div dir="ltr" style="background-color: white;">So today I challenge you, to notice the beautiful simplicities of life. How your hand just falls at your side, after you scratch an itch on your face, how you can have a conversation and your words just flow freely without even thinking about them, or even how you can walk across a room without even comprehending what muscles in your body just enabled it to do. The stroke forced me to live life this way, and notice all of these things, especially when I couldn't do them anymore; and I'm so happy I did. Try it. You won't regret it. I'm so happy to say I can finally look at the date April 7 and not think oh but what if, things were supposed to be different. I just think about the wonderful things I'm going to discover today. </div>Kimi Sorensenhttp://www.blogger.com/profile/14667958984106551484noreply@blogger.com0tag:blogger.com,1999:blog-836792994399567811.post-73166965783323516532020-04-07T05:10:00.001-07:002020-04-07T13:12:13.010-07:0014 Things For 14 Years I Can’t Believe It<span style="-webkit-text-size-adjust: auto;">Wow! It's that time of year again. It's funny how I used to think that time went to slow, and now it feels like it flies by. Maybe I'm just getting old haha.</span><em style="-webkit-text-size-adjust: auto;"> </em><span style="-webkit-text-size-adjust: auto;">Not that I ever meant for the significance of today to have this sort of connotation, but I felt like whenever I talked about this day it was always negative. So that's why I thought I would write 14 things that I've experienced in the past 14 years, that have either taught me something about myself, or 14 things I have discovered about myself etc. BUT first I would like to start out with a quote that I think fits perfectly. </span><br />
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<span style="-webkit-text-size-adjust: auto;">I hope no matter what darkness you're dragged through, you never loose sight of your brilliance. Because even if you don't see your light, it's there. Even if you don't feel your heartbeat, it's drumming in your chest. Even if you don't think you can push through, you can one step one breath at a time. </span><br />
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<span style="-webkit-text-size-adjust: auto;">The reason I put this particular quote down, was because that is the number one thing I've struggled with for the past 14 years. That light went dim for many years, but now, I'm trying to light up the world with the things I've learned. So let's get started. And by the way, this list is just a summary, I can't even begin to imagine what I will learn in years to come. For probably the first time in 14 years, I'm excited for what the future holds. </span><br />
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<strong><u>14 Things I have Learned Through having a stroke at age 17 and being a chronically ill teen.</u></strong></div>
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<span style="-webkit-text-size-adjust: auto;">1.NEVER EVER EVER EVER take your health for granted. From a person who's never going to have complete health back in her life anytime soon, just please don't.</span><br />
<span style="-webkit-text-size-adjust: auto;">2. Just because you feel like the old you is gone, doesn't mean you can't try to create a new you.</span><br />
<span style="-webkit-text-size-adjust: auto;">3. Life doesn't always go as planned and that’s OK! Sometimes it’s more than ok!!</span><br />
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4. Life is literally and figuratively like a bowl in a china shop. Oh yeah with 30 toddlers running around. They can break. And yes they can sometimes be put back together but you will constantly have that “scar on the bowl to tell you something happened to me...<br />
5. Forgiveness is more healing than you will EVER be able to comprehend, for both the giver and receiver.<br />
6. There is no definition of the word perfect- you as a person (in how you act towards others and how you present yourself) define perfect for yourself-that's what makes you unique.<br />
7. Instead of letting your illness define you, let yourself define your illness. Don't become just a stereotypical "chronic person," after all you do have a reputation to uphold.<br />
8 .My ability to accept things that can go wrong, both openly and graciously, defies all human understanding (Or so I’m told...).<br />
9. Sometimes admitting you're sad is the most freeing thing you will ever do for yourself, and you'll thank yourself for it later, even though it feels like defeat at that moment.<br />
10. I've become inspired to be something I didn't have. I want to be a light in someone's darkness.<br />
11. That there is a huge difference between being conceited and actually practicing self love, and it's time that more people know the difference.<br />
12. Creating a second "version" of yourself, isn't failure. It's creativity at it's finest.<br />
13.DO NOT under ANY CIRCUMSTANCES USE WebMD. Just don't do it. You'll thank me later.<br />
14. JUST BE THANKFUL EVERYDAY. Just be thankful for your life, be thankful that your muscles can do what you want them to do, just don't waste a day.<br />
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To be honest, I could write probably for the next two days about different things I've noticed and learned throughout the past 14 years, but that would take forever. So I will end with this. No matter what you go through in life there's always another side that everybody is envious of. Everything in life comes from perspective. This experience has definitely changed my perspective. I may say I hate what the past 16 years have done to my body, but I love the adult I have turned into and would never give that up! And in terms of Corona(that I've managed to not talk about for this entire blog post even though the entire world has been immersed in the quick sand of COVID-19, don't fret friends. Everything has a beginning and an end. This too will end and we will be stronger when it does!</div>
Kimi Sorensenhttp://www.blogger.com/profile/14667958984106551484noreply@blogger.com0tag:blogger.com,1999:blog-836792994399567811.post-55879122349969494892019-12-20T06:39:00.003-08:002022-03-30T12:19:36.539-07:00How Being Chronically Ill During the Holidays has Taught Me About the Real Meaning to ChristmasI've been posting on facebook for the past couple of years everything that happened on that certain day when I was in the hospital fighting a deadly spinal fluid staph infection in 2005. I never realized I would still be talking about it 14 years later. But that's when I realized all of the lessons that I learned during that 4 week stay. It's really true that the important lessons you learn in life stay with you always, and as I'm getting older I'm realizing that's true.<br />
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If we aren't friends on facebook, let me give you a little bit of background. I had a shunt revision in November of 2005. and I was in the hospital for 3 days, went home, got all my makeup work done, thought things were going great. But then on the 13th of FDecember, I went from going to school, carrying a 15(let's face it it was probably more 20) lb backpack, to not being able to stand up straight AT ALL. So my mom took me to the pediatrician. We were still newbies in the neurosurg world, we never thought that oh the shunt drains into the stomach, this is probably a shunt problem. Never crossed our minds, until we were in the ER at Evanston hospital. My mom had been keeping my surgeon's nurse updated, and my mom knew when she was talking to her on the phone and suddenly her demeanor changed, and she said in a somewhat chilling voice, please get her out of there and down here as fast as you can." After 3 hours of pleading with the doctors, I was in an ambulance headed for U of C. You may think that's where the action ends, but oh how wrong you are. When I got there, they were expecting me to have all of the traditional shunt infection symptoms, but I didn't. No elevated white count, no fever, just a stomach ache that wouldn't quit. So they couldn't take me to surgery for no reason. And they didn't want to test my fluid because that could be potentially introducing more infection. And so I'll never forget my doctors words, he said, "well then we will just wait, because if this is an infection, it will make itself known within a couple days of absolutely 0 antibiotics. He was right. 3 days later, screaming and almost going into sepsis, I was rushed to the OR, to get my shunt externalized.<br />
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I was then put into the PICU and was put on bed rest. Other than my once daily walk. This probably brings us to about the 17th of December. I was thinking a lot, because there was not much to do when you were on 24 hours a day bed rest, with 1 daily walk. But it was during that once daily walk that my eyes were truly opened. I saw all these rooms with children in them but no adults, and I had my mom with me 24/7; I asked my mom where their parents were, and she said that a lot of them had to work, or maybe they were single parents, etc. That's when I said well we have to pray for them, so they can go home soon and be with their parents soon!<br />
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My mom I think knew I would be in the hospital for Christmas, but she chose not to tell me because she knew it would mean breaking to me that I would also be missing my trip to Disneyworld. But I think in my heart I knew. I would indirectly ask my nurses questions that translated into how long will I be here. But when my mom brought in my American Girl doll Christmas Tree, and a bunch of ornaments from home to decorate my IV pole my heart more or less sank. But I will never forget what my mom said, she looked me in the eyes and said, "this will be the best Christmas of your entire life." Looking back on it I know 100% I probably rolled my eyes, but in hindsight it was the best Christmas of my entire life. As you get older, you realize Christmas is less about what you will be getting, and more about who you are spending it with. My family was with me, no I wasn't home, but I was in a place where I would get better, with all the best minds I could find on my case.<br />
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So fast forward to 14 years later. How have my holidays changed? My holidays for the past 13 years have been spent at home which I'm so grateful for. But that doesn't mean by any stretch of the imagination that I forgot what happened in room 428-C in 2005. I have learned that the real magic to Christmas, isn't what's under the tree Christmas morning, it's who's around you, every other day of the year. I have also learned that health isn't an automatic, but a gift to be cherished. I'll never be considered healthy again, so now my view of health has changed, I've redefined what health is, because that's what you have to do when you're chronic. Merry Christmas everybody. And always remember the kids in Comer on December 25. I know I will. Because I was one of them.<br />
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Kimi Sorensenhttp://www.blogger.com/profile/14667958984106551484noreply@blogger.com0tag:blogger.com,1999:blog-836792994399567811.post-89691274560729232562019-06-07T06:25:00.000-07:002019-06-07T06:26:41.661-07:00To the Girl Who Was Just Diagnosed with A Chronic Illness I Say this: Life is Still Beautiful<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<span style="font-family: "calibri light" , sans-serif;">Originally I got this idea to write this, after reading something else, then it turned into a project for a friend, which made her so happy, and then I decided to send it to the Mighty, and then knowing I probably wouldn't hear anything for a little while, I got impatient, and decided to publish it on my blog. So enjoy, and to the girl this was written for: I will always be here..<3 font=""></3></span></div>
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<span style="font-family: "calibri light" , sans-serif; font-size: 12.0pt;">Dear You,</span><span style="font-family: "times new roman" , serif; font-size: 12.0pt;"><o:p></o:p></span></div>
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<span style="font-family: "calibri light" , sans-serif; font-size: 12pt;"> I
know your feelings. You feel as though you’ve stepped into a world of unknowns,
and unfinished sentences. You may feel all alone but know this: You are thought
of often, by people you thought didn’t even notice you. You will be thought of
when you go for your first test, a CT scan. You will be thought of when your
heart is racing as you watch the film go round and round. You will be thought
of when your head is in your hands, wondering how did I end up here? There are
no words that I can say that will make you feel better at this point, nothing I
can do that will make you feel at ease about your diagnosis. All you can see
are stats and percentages that make it look like this will be an uphill battle.
And it will be. But I’m here to tell you that you can win this battle, and have
fun doing it.</span><span style="font-family: "times new roman" , serif; font-size: 13.5pt;"><o:p></o:p></span></div>
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<span style="font-family: "calibri light" , sans-serif; font-size: 12pt;"> Your
fears were once my fears, and my accomplishments can soon be yours. You don’t
know it now, nor will you know it tomorrow, but you will feel whole again. That
half a person you see in the mirror will find her other half. At this point living until tomorrow becomes
your only goal each and every day. Like your doctor says, you have to keep
yourself alive and healthy enough until modern medicine catches up to you. The
guilt that you feel is going to swallow you up, will gradually become lighter,
as you accomplish things doctors never thought you would, and as you gain
understanding about how the preceding events happened and why. Your numb walk
through life, I’ve walked your path. I’ve felt your numbness, that numbness
that has made you so cold, because you don’t want to be hurt again, don’t want
your life ripped apart again by one more diagnosis, I can still feel it at
times. Hearing the words, you have X illness, and medicine hasn’t caught up to
you yet, can be earth shattering. But you will learn to make lemonade out of
lemons. You must. But know this: your world, no matter how small it feels like
it’s just gotten, how blurry your future seems even though before it was in
perfect focus: Is beautiful.</span><span style="font-family: "times new roman" , serif; font-size: 13.5pt;"><o:p></o:p></span></div>
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<span style="font-family: "calibri light" , sans-serif; font-size: 12pt;"> You
will know your world is beautiful when your doctor is amazed by your recovery from
a 30 days hospitalization that only took two days at home.</span><span style="font-family: "times new roman" , serif; font-size: 13.5pt;"><o:p></o:p></span></div>
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<span style="font-family: "calibri light" , sans-serif; font-size: 12pt;"> You
will know your world is beautiful when you see the smiles on kids’ faces in the
hospital when you do a toy drive for them for Christmas.</span><span style="font-family: "times new roman" , serif; font-size: 13.5pt;"><o:p></o:p></span></div>
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<span style="font-family: "calibri light" , sans-serif; font-size: 12pt;"> Your
world will get infinitely bigger when you realize the power of forgiveness, and
you will learn the true meaning of humility, when you have to forgive the man
who almost took your life, but at the same time saved it.</span><span style="font-family: "times new roman" , serif; font-size: 13.5pt;"><o:p></o:p></span></div>
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</span><span style="font-family: "times new roman" , serif; font-size: 13.5pt;"><o:p></o:p></span></div>
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<span style="font-family: "calibri light" , sans-serif; font-size: 12pt;">I know you’re scared.
Every statistic you read makes you more afraid of the unknown than you ever
thought possible. 50% of shunts don’t last more than 2 years. Sometimes in
order to face the fear you have to “go there”. You have to let yourself be
afraid to realize that you have the strength to make it through. And sometimes
knowing you have the strength to get through whatever it is; is all you need.
You don’t need to go through the experience, but just knowing you will be able
to get through it, should it ever happen, can allow you to feel like you at
least have a little bit of control over your life, even when everything seems
just one tiptoe too far. I know the burden of carrying a chronic illness
sometimes feels unbearable. And the uncertainties make you feel like there’s no
end to all of this effort you’re seemingly putting forth.</span><span style="font-family: "times new roman" , serif; font-size: 13.5pt;"><o:p></o:p></span></div>
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<span style="font-family: "calibri light" , sans-serif; font-size: 12pt;"> I
know that at your dr’s appointment where you got this heartbreaking diagnosis,
suddenly that small hospital room feels even smaller, suddenly the temperature
in that room went up 20 degrees. You feel like the entire world can hear your
heartbeat, when in reality it’s just you. You feel like as you walk through
this illness, you’re always going to feel this alone, always going to feel like
no one gets it except you. You’ve heard the words snowflake illness so many
times in that one appointment, that you are unsure of what the words even mean
at this point. But I’m here to tell you it will get better.</span><span style="font-family: "times new roman" , serif; font-size: 13.5pt;"><o:p></o:p></span></div>
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<span style="font-family: "calibri light" , sans-serif; font-size: 12pt;"> Words
can’t help you right now. No number of hugs can help you right now. And God
knows more facts definitely will NOT help. But remember this, as the clouds
start to scatter and you can see the sun peeking through, Life doesn’t end with
diagnosis. A new life is just beginning, and you will learn to live with your
new life, you will learn how to take the broken pieces of your old life and
meld them into your new life, and while for now you’re making them fit together
with tons of tape and Band-Aids, soon you won’t need them. Soon your life will
heal, and you will have a scar, but that scar will represent what tried to beat
you but failed. This new life is hard, insanely emotional, lots of ups and
downs, but nevertheless beautiful, unique, emotional, and definitely a crazy
life. You only get one. So enjoy it.</span><span style="font-family: "times new roman" , serif; font-size: 13.5pt;"><o:p></o:p></span></div>
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<span style="font-family: "calibri light" , sans-serif; font-size: 12pt;">Love,</span><span style="font-family: "times new roman" , serif; font-size: 13.5pt;"><o:p></o:p></span></div>
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<span style="font-family: "calibri light" , sans-serif; font-size: 12pt;">Experience<o:p></o:p></span></div>
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Kimi Sorensenhttp://www.blogger.com/profile/14667958984106551484noreply@blogger.com0tag:blogger.com,1999:blog-836792994399567811.post-2781050900103701662019-04-07T07:21:00.000-07:002019-04-07T09:40:45.920-07:0013 Years "post op"; and Some Good News!I've been thinking about how I'm going to write this for literally MONTHS, because you have all heard what happened, probably multiple times before, so it feels very monotonous writing this every year, even though the general feel and point of each post is different (at least I think). I'm guessing after reading last years entry, which I was quite proud of no lie, some of you (or maybe none I don’t know) are wondering if I actually sent that to him. And to be honest(man I use that word a lot in my blogs lol), I wasn't going to send it, but then I thought, why did I write it if I wasn't going to send it? I thought I had an answer to that question, but as I thought it through they were just excuses. So I swallowed hard and sent it. I thought about it every once and a while; just oh I wonder if he got it? and I hope he's not mad at me, because when I say I never talked with him, I seriously mean, I NEVER talked with him, ESPECIALLY not about my feelings on what happened during this particular hospitalization. I would literally give him one word answers to all of his questions, or yes or no shakes of my head, and the only reason I can think of was because most of the time I saw him during those 2-4 years, I was SO SICK, that I just wanted him to help me. He knew why I was there so I almost didn’t really have to say anything. But ironically, I never really realized I didn't really say anything to him, until my mom told me.<br />
<br />
One night about 2 months ago, I was just playing candy crush on my phone (I cannot believe how invested I am in that game, it's so sad lol), and looked at my email icon on my phone, that had about 30,000 unread emails, (no joke, however the majority of them are from fb and I don't have the energy to go through them all), and I went into my email and just glanced at all the 450 unread emails that were before me on that particular account, and I just slid my finger up and down the page, and then something caught my eye. It was my previous doctor's name. At first, I looked at it sort of confused. Ironically, it was not my first instinct to think of the letter I had sent him almost a year before and it definitely was not an email I would immediately rush to open either. But then when I realized it, and put the pieces together, I was so excited, my heart racing, every thought I've ever thought in my entire life going through my head. I can't really explain it. I was terrified to read it, but so excited at the same time. I swallowed hard, opened it and began reading.<br />
<br />
I sort of glanced over the entirety of the letter first, just preparing myself for how long or short it would be. I can't really tell you what I thought it would say, because I literally had NO CLUE how he would respond.. So I know your next question would most probably be, "Then what were you afraid of?" and I can't answer that either, all that was running through my head at that point, was your letter was very direct, so be prepared for him to feel bad. I'm the sort of person, who psychs herself out about ANYTHING AND EVERYTHING. I used to think I would prepare for the worst, and then hopefully if it didn't happen, I could be happy about it. The way the past has gone, it has just been easier if the end result was going to be bad. But he told me he was glad I wrote my letter the way I did because very rarely is he able to see the view of a child, recollected in adulthood, especially when things don't go as planned and I thought to myself, Gee is that what I did? Yeah I guess so. He also said that he too wished that the night of the stroke had a different outcome. He also said, he wished we were able to talk about things, but that this letter communicated what was most important. Because of the fact that I had always been so quiet he had always wondered, whether I had feelings about my general health and the goings on of the years he was my doctor. After I read the fact that he was happy I wrote the letter, it was like I could finally breathe, in my mind that meant he wasn't upset by it, and in fact he was very receptive of the letter as a whole.<br />
<br />
Compared to my letter, his was short and sweet. Just like the way he's always been. He said the letter showed him what a kind, quietly thoughtful, articulate adult I have become. I was so happy when I read that. And I guess that's true, at least for a guy who never really heard me say anything. It was in that moment, I realized I was never "mad at him." and I told him that in the letter, I was just so confused that I looked for someone to blame and he was the easiest person to blame, unfortunately, to take responsibility for what happened, he was the attending at that surgery, so everyone assisting in that surgery had to do what he told them to do, did he tell them to do something that gave me a stroke? I don't think I will ever have that answer. I was just so confused and lost for such a long time, that I thought blaming someone would make me feel better. But I was realizing over time that not only did it not make me feel any better, that it also just made me more confused, because I didn't then nor do I now have all the information from that night, and I probably will never have all the information, so I had to make a choice. I was tired of looking for someone to blame. I was tired of taking the "scapegoat way out of things by blaming someone, when in reality it probably wasn't his fault at all and I was realizing that blaming someone didn't erase the fact that it happened.<br />
<br />
So how am I doing today? I'm doing great! Well comparatively. I will always have chronic pain, and a some degree of hemi-paresis, and I've accepted that, it's my life and I have to make things happen or else nothing will happen. and I know that for the most part, things aren't going to get better or easier, and so if I do nothing, I won't accomplish anything. So it would be better, if I learned to do things with chronic pain, because chronic pain is just that, it's unpredictable, and it's chronic, so I have absolutely no clue how long it will last or how I will feel in ten minutes. I could feel exactly the same, or I could be 100x worse, or 100x better. You just never know, and so I've learned to have some degree of flexibility with chronic pain.<br />
<br />
I am going to put the link to my letter to him at the bottom of this, because there's bound to be one person who reads this who hasn't read the letter I sent to him and this entry is going to sound a little strange if you have absolutely zero clue as to what I'm talking about. So in finishing this, I'm glad I sent it to him. I'm glad he's happy. I'm glad he's doing what he loves in a place he loves. If he's happy, I'm happy for him. That's what you do for friends right? It's really weird calling him one of my friends now, but he's not my doctor anymore, he's my friend. And if you read this, You will always be my favorite cowboy boot wearing, Elvis lookalike. And thank you. I know I will never be able to say that enough, but thank you for everything you did for me, after that night, because that was where I saw your true colors. You took my story everywhere you went, trying to get the best minds in the world on my case. You may have felt like you needed to prove something to me but you never did. That was just an added bonus.<br />
<br />
http://blessingsinhydro.blogspot.com/2018/04/i-forgive-you.html<br />
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<br />Kimi Sorensenhttp://www.blogger.com/profile/14667958984106551484noreply@blogger.com0tag:blogger.com,1999:blog-836792994399567811.post-1305254940903507582019-01-28T12:21:00.000-08:002019-02-04T08:52:20.211-08:00A Letter To Myself 15 years agoI did one of these three years ago. But since I just turned 30 and that seems like a huge deal to me I thought I would write another one and sort of compare them, to see if I truly have grown or whether or not that was just a lie that my parents told me for years; that with age comes wisdom.<br />
<br />
Dear 15 year old Kimi,<br />
It's your sophomore year of high school. This means you will be able to get your licence in just a few months! But you have no idea what this year will bring you. In a mere few months the idea of getting a licence is tossed aside, and your only focus becomes living. In terms of life, loss and every step in between. You've been trying to become your own person this year, trying to step out of the shadow of your extroverted big sister, but nevertheless getting asked whenever you say your last name is Sorensen, Oh are you Christina's sister?" But you will be asked many questions throughout the next few years, and I hate to break it to you, but none of them have very uplifting answers. But you will stand despite all the hardship you face. Because living becomes your only goal, and you will learn the true meaning of the word. You will realize that it doesn't simply mean breathing; that it doesn't simply mean the monotonous day to day everyone complains about. Over the next 15 years, you will spend more days in the hospital than at home. You will have to relearn things you never thought about, such as talking, walking, and writing your name. But you will wear every hardship you encounter as a chain of diamonds. You will just add to them with each experience you encounter. Every scar another story.<br />
<br />
This may sound strange, but relish in the horrible times. Because it's during these horrible things that happen to you---they will force you to see how good you had it. You will miss out on a lot, but don't worry, you will make up for it. The toll that the next 15 years will take on your entire family is immeasurable. Whenever your mom says, "yeah but you were sick", as almost an excuse, again and again, in measuring how sick you were before, you will wonder, will I ever not be sick? You've stepped into unknown territory. Territory with fire around it, but a pot of gold in the center, and you will spend the rest of your life chasing that pot of gold while trying not to be burned in the process. Yes the fire leaves its scars; but somehow you learn to live with the pain that the fire brings to your life. You will learn how to hide the pain from nearly everybody. But in the midst of the fire around you, you lose yourself, find yourself, again, recreate yourself, and learn some pretty amazing lessons in the meantime. You will do things you never would have done had you not gotten sick. Such as having a toy drive for the child life department at Comer, because you want other kids to feel that joy you felt, at Christmas 2005, when you opened your eyes in the morning and there were presents all over your bed. You were always curious about how celebrities felt, and you will get a tiny taste of this yourself, when your Thank you party for the nurses is heard about by the University of Chicago press, and your story is featured in their paper, however even the good things in life come with a cost. Your hard times, will continue to be a bit of a precursor to everything you do in life. People will always say, "Oh if I was sick, XXX, oh my gosh I can't believe how she does it. All while you're just wanting to be treated like a normal young adult.<br />
<br />
You help people in your own small way, and the words of hundreds of friends, help you even more. I know carrying the burden of chronic pain, as well as the uncertainty of your illness, seems impossible at times, but if you look to the people who are around you, you will gain strength from them, and you will realize you have to keep going. You have to keep doing what Dr. Curry said, and staying alive so that technology can catch up to you. Just remember Kimi, don't take life to seriously, slow down, that's what your illness forced you to do, remember? It caused you to look at your life like it could be taken away at any point. You just celebrated your 30th birthday three days ago, something that 13 years ago, Dr. Curry was unsure if you would ever see. And yes, you've made the most of every additional day you have gotten. But just do me a favor. Don't stop.<br />
<br />
Love Always,<br />
Birdie<br />
<br />
<br />Kimi Sorensenhttp://www.blogger.com/profile/14667958984106551484noreply@blogger.com0tag:blogger.com,1999:blog-836792994399567811.post-38183343505192023652018-12-12T06:55:00.000-08:002018-12-12T06:55:41.651-08:00Making a Deal with the Devil<h4>
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<b><span style="font-family: "Calibri Light", sans-serif; font-size: 13.5pt;">I was chatting with some friends
the other day, and they of course had to say the chorus phrase that a lot of
people say to all chronic pain/illness patients, "I don't know how you do
it." I had decided a while ago, I wasn't just going to take that and say
thank you and then be done with it. I wanted them to realize that I had no
choice. So I of course said thank you, but you don't really understand how
chronic illness works do you? They sort of looked at me funny, and said,
"I must not." I said I like to compare it to making a deal with the
devil. You say I don't like this, in fact I may hate you X illness and
everything you're doing to me, but I don't really have a choice(assuming your
illness is incurable and fluctuates like mine does) I'm stuck with you, so I
will live with you, but just so we're clear, I will never like you. You must in
order for your mind to gain peace. You must for your own sanity.<o:p></o:p></span></b></div>
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I remember having "the talk" with my doctor. It was right before he
left to go to Texas. He said you're moving too fast for technology, we just
have to hope technology catches up and you don't get worse in the process. Talk
about a punch in the gut. This was right after he told me he was moving to
Texas. And I've said this in past posts, that even after the stroke and knowing
that he did something he wasn't supposed to do, he was still so amazing to me.
He was the reason I was still here. I remember when I first started having
chronic malfunctions, he promised me he would figure it out, and just him
saying that, made me feel better, and it made me admire him more. So when he
told me A. that he was leaving, and B. that there was basically nothing left
that any neurosurgeon could do for me, I was pretty stuck. That was when the
thought came to me, "well I guess I need to make a deal with the devil."
Truthfully I probably didn't even know what I was making a deal about, but as
time went on it became clear to me, that in order to get anything done, I would
have to. Because for the moment I was just making excuses, and I knew that if I
ever wanted to do anything with the rest of my life, I would have to stop
feeling sorry for myself, and accept that I was in pain forever. I know it
sounds horrible and it was. But I knew that in order to get the mountain
that was in front of me moved out of the way and making my biggest goal come
true that was what I would have to do. So, I chose to not really tell anyone
what I was doing, and just try and make that deal silently. No one would know
about it, but me.</span></b></div>
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It worked for a while, because I just kept brain-washing myself into thinking
this is what I have to do in order to graduate with my class, which was my
biggest wish so whenever feelings of sadness or loss came up, I would just push
them to the side, telling myself that my wish for that year was more important.
I had quite a few hospital trips that senior year, but I was getting so used to
going to the hospital that it actually turned into my safe place. It was the
one place I wanted to go when I felt bad because I knew they would try help me
even though my doctor said there was nothing surgically they could really do
for me anymore. I think for a lot of chronic kids, even though they hate the
hospital secretly there is a love for it. It's the one place they can be and
have complete 100% trust in the people that are there, and hopefully they will
end up walking out of that place in better shape than they did when they walked
in. That was how I had to treat the hospital, because I was going so
much. I knew if I hated it, that I would have closed myself off to ever
getting better, which was what I desperately wanted. After my doctor confirmed
that I was just exquisitely sensitive to pressures and that the amount of
surgeries that they had done in the amount of time they had done them had done
more harm than good to my overall nervous system health, he told me that we
needed to keep me out of the OR as much as humanly possible. Little did he
know, that in the 10 years since he said that, I would have 8 more brain
surgeries, as well as 4 more lab confirmed staph infections.<o:p></o:p></span></b></div>
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<b><span style="font-family: "Calibri Light", sans-serif; font-size: 13.5pt;">Having
to live your life playing Russian Roulette with a drug cocktail is so beyond words not what I expected I can't even tell you. My entire adult life has
been surrounded by decisions being made because of my illness, whether I was
consciously aware of it or not. From where to work, to where to live, to what
time I go out at night. Every decision I make is walking that invisible line
of a tightrope. It's flirting with both sides, worrying about and not wanting
yourself to show too much of either side, and I mean I hope I'm doing a good job? We thankfully don't really have any mentors to look up to, unfortunately not because there aren't any, but because none of us talk about it. We either write like I'm doing, or just make ourselves known within the charity that sponsors research for our illness, but we do it silently. We fight. We fight silently,
while tears bathe our pillows at night, we don't sleep because we are wracking
our brains with "what if’s" or "could have been's."
Every second of every day we are witnessing the ever-present betrayal of our
bodies. We aren't strong because we woke up and chose to be strong. We are strong
because we woke up realized that we have no choice in this matter, we have to
keep going, there is no alternative. But in reality, none of that matters
at all. All that matters is how you view yourself. Yes, others having a semi
nice view of you is always a plus but it's really not what you need. You
weren't put on this earth to please people, but if you do hey bonus! So just
stay with us, be with us. I can't promise you it will be fun, all I can promise
you is that it will be worth it. Maybe not today; maybe not tomorrow but
someday, it will all be worth it. So, what about you? Would you make a
deal with the devil? In order to survive?</span></b><b><span style="font-family: "Calibri Light", sans-serif; font-size: 12pt;"><o:p></o:p></span></b></div>
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Kimi Sorensenhttp://www.blogger.com/profile/14667958984106551484noreply@blogger.com0tag:blogger.com,1999:blog-836792994399567811.post-88074897524715538602018-10-08T12:09:00.002-07:002018-10-08T12:12:45.052-07:00Living a Life With New Lyrics.<br />
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<span style="color: black; font-family: "calibri" , sans-serif; font-size: 11.0pt;">How do you go on when
it feels like everything that made you- you is taken away? How do you begin to
rebuild yourself? Not really knowing if you like the same things, or even if
you're able to do the same things anymore? Well number one is, if you're
stubborn, you learn very quickly that being stubborn isn't allowed. Or else
you'll never get anything done. Number two is you HAVE TO be flexible, and
forgiving. You're not going to be able to do the exact same things you did
before the same way you used to, and the sooner you accept that, the easier recovery
is going to be for you.<o:p></o:p></span></div>
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<span style="color: black; font-family: "calibri" , sans-serif; font-size: 11.0pt;">The way I had been living my life up until this point, usually I
don't talk about because even though I was living it the same way as any normal
teenager, I don't always like to admit what that entails, because a lot of the
times it includes a couple of somewhat negative adjectives; engrossed in
yourself; only worrying about yourself, it's basically all me, me, me and if I
help someone on the way, that's another point for me as well. Now, I want to
say up front, that I wasn't always like this, but even when you make a
conscious effort to not be like that, you're a teenager, there are bound to be
slip ups. Right after everything happened, I don't really know if I even
realized the enormity of it. Or maybe I did, but I refused to acknowledge
it, because it felt like all my dreams were out the window. I think this was
part of the reason, so many people saw my personality sort of retract. I was so
confused. I felt the "same" on the inside, but I felt like every time
I looked in the mirror, no matter how much I squinted, I could never completely
see, but another thing that I think drastically impacted the way I recovered,
was the fact that I never really struggled with anything before, to the point
where I couldn't do it. Usually if something was hard, I would just do it a
couple of times and then it would be easy. But after everything happened,
everything seemed like it was a thousand miles away, and I was on foot. So it
always seemed impossibly far to get to, if I was even going to be able to do if
I got there anyway.<o:p></o:p></span></div>
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<span style="color: black; font-family: "calibri" , sans-serif; font-size: 11.0pt;">Some people don't know this about me, but when it comes to certain
things, I'm extremely stubborn. And this was even before my brain injury. But I
think when you have a brain injury no matter how severe it is, you almost have
to be stubborn. Because your therapists are going to use that to your
advantage, whether you realize it or not. And trust me, it drives you crazy. I
remember in OT, my therapist would dump out a bucket of coins, and say pick
them all up with your right hand. I would pick them up with my right hand while
she was looking at me, but as soon as she got up or looked the other way, I
would pick up a handful with my left hand. I knew I would gain nothing from
doing that, but I wanted to be done with it, partially because my hand was
getting really tired. I knew you could get by in life using one hand. It wasn't
ideal by any stretch of the imagination, but it was possible. You couldn't get
by not talking, or only walking on one leg. So I knew those would come in time.
Maybe it was my way of telling myself I had control over my situation? I'm not
really sure.<o:p></o:p></span></div>
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<span style="color: black; font-family: "calibri" , sans-serif; font-size: 11.0pt;">When I got back into my "once normal" routine, I tried
going back to the way I lived before. I very quickly realized that if I did
that, I would end up mercilessly disappointed. But I couldn't begin to imagine how
I could rebuild my life that had just crumbled before my eyes. I had no
idea where to start. I didn't even know how to describe my personality, so
where would I start in rebuilding it? It was like I was straddling an invisible
line, but instead, of choosing one side of it, I tried to walk it like a
tightrope. and Yes, I did figuratively fall a lot. Because of one mistake,
every monumental decision in my life was morphed into a metaphorical version of
Russian Roulette, or at least that was what it felt like. I never realized how
hard it would be to essentially "become someone else," or at least
that's what it felt like. It felt as if I was just limping through life, with
no rule book, trying to become George Washington if I had never heard of him,
or anything he did in his life. It's like a theme song for a television show
that you've been watching your entire life, you finally know all the words, all
the pictures on the tv that goes with each of the words, and suddenly they
decide to change the theme song 6 seasons in, AND THE PICTURES. You just think,
"is this right, because it feels wrong."<o:p></o:p></span></div>
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<span style="color: black; font-family: "calibri" , sans-serif; font-size: 11.0pt;">You have to change your ideals, and what you deem as
"normal" and not normal. But it's so hard, when you've been doing
something one way, for so long and now you have to change every bit of your
life, seemingly. You don't want to change what you 're doing when you know that
changing what you're doing means that something bad happened to you. It's like every
step you take, every word you say, is like reminding you of that horrible
night. But you have to turn it into something good.<o:p></o:p></span></div>
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<span style="color: black; font-family: "calibri" , sans-serif; font-size: 11.0pt;">Just because I had to change the song of my life, doesn't mean I
like either life more. And I have said this in other entries, if I had my
ultimate wish, I wish I could put my sick life together in a bag with my once
healthy life, and shake it up and take what is mixed, but I can't. I'm
thankful for my sick life for the things I was taught, forcibly, but never the
less, learned and now I love that I know the things I know. Some of those
decisions, were snap, decisions, because we didn't have time, because my life
was in danger, some things, I had a week plus to discuss with myself, over what
is the right decision. Yes, the lyrics to my song look a little different than
they used to, but isn't that what is supposed to happen? I don't look the same
as I did when I was five for a reason. Because I'm older and I've been through
a lot. <o:p></o:p></span></div>
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<span style="background: #ffffe5; color: #333333; font-family: "calibri" , sans-serif; font-size: 11.0pt;"> But after years of seeing a stranger
when I looked in the mirror, I’m finally beginning to see it was ME all along.
My illness may be invisible, but I can assure you I am not. I’m not healthy,
but I’m living in spite of it. I’m the girl who chose to LIVE life in every
sense of the word, with these life altering illnesses. People need to know that
I’m not upset, I’m not bitter about what these illnesses have done to my body.
Have they changed me? Yes. Have they taken things away from me? Yes, but I’m
not going to snap my fingers and have them all come back. And I slowly realized
that I’m not upset about having these illnesses, was I upset because of what
they did to me? At first yes. But as time has gone on, I’ve opened up my heart
more and realized when I did that, I opened everything. And became so much
happier. I can finally say, I can look in the mirror, and not only do I
recognize who I see now, I’m proud of her. And my new life song is
better than the old one! #IChooseLife #WillisClan #CheckItOutIfYouHavent</span><span style="color: black; font-family: "calibri" , sans-serif; font-size: 11.0pt;"><o:p></o:p></span></div>
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<br />Kimi Sorensenhttp://www.blogger.com/profile/14667958984106551484noreply@blogger.com0tag:blogger.com,1999:blog-836792994399567811.post-48406281392295656342018-04-07T07:14:00.003-07:002022-01-23T13:29:53.908-08:00I Forgive You<div class="separator" style="-webkit-text-size-adjust: auto; font-family: "Times New Roman", serif; font-size: 12pt; margin: 0in 0in 0.0001pt; text-size-adjust: auto;">
<b>Healing doesn’t mean the damage never existed. It means the damage no longer controls our lives.</b><o:p></o:p></div>
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<b> –Shahkrukh Khan</b><o:p></o:p></div>
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<b>Sometimes closure arrives years later. Long after you’ve stopped searching for it. You’re just sitting there, laughing this laugh that is unapologetically yours. As it trails off, the corners of your mouth hug your face and it just hits you, “I’m Happy”. It’s just like that. With no fanfare or epiphany. Suddenly you are grateful for goodbyes that carried you to this moment; to the space you are now holding. </b><o:p></o:p></div>
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<b>-word.honey</b><o:p></o:p></div>
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<b>This is long overdue, I’m so sorry this took so long but I needed time… time to sort out my feelings, time to heal. Just time… I sincerely hope that wherever you are, whatever you’re doing Dr. XXXXX you are happy and doing well, and know that I am going to be forever grateful for EVERYTHING you did for me.</b><o:p></o:p></div>
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<b>Dear Dr. XXXXX-</b><o:p></o:p></div>
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<b>I’m sure you never knew I had feelings about what happened on April 7, 2006. I know I never said anything about it to you. Were you thinking of my best interest when you made that fateful decision? I honestly can’t really think of any other option besides yes, because of how fully devoted you were to my case. Every surgery has risks. No matter what surgery you’re having, there are always risks; but should that stop you from doing it? I don’t think so, because if it is supposedly supposed to make the patient’s life better you have to take that gamble. Were you really out of options? Did you have time to consider the possible consequences of doing that particular surgery? I’ll never know, everything happened so fast, from what my mom tells me. All I know was that you had done surgery upon surgery, revision after revision and absolutely NOTHING was working, nothing kept the pain to a minimum, nothing kept the shunts from malfunctioning. So did I just answer my own question? Were you REALLY out of options? Probably. Was what you did even bad enough to warrant forgiveness if it wasn’t intentional? I didn’t know. Did it ever cross your mind that as my doctor you needed forgiveness because of what happened? Probably not, because I never expressed any opinion about it, but what I know for a fact, was that you would have done anything to see me get better, and to have that night end differently. I will never be able to thank you enough for that. I also know that it absolutely broke your heart to have that surgery come to a screeching halt the way it did. I came to the conclusion that there are too many parts of this entire story that I simply will never know the answers to and I had to make peace with that before I could go any further. There is one thing, however that I do know despite all these unknowns and I’m finally ready to talk about it after twelve long years.</b><o:p></o:p></div>
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<b>Despite the fact that you took what I then perceived to be my entire future away from me, I’m done fighting with the confusion, and all the unknowns that I believe will always be parts of my story. Was I mad at the time? I honestly don’t think I was, but was I confused? HECK YES, I had different opinions coming at me from every possible angle for a long time, and I honestly think those conflicting ideas are what formed my original opinion about this entire thing.</b><o:p></o:p></div>
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<b>What is forgiveness? The Merriam Webster dictionary will tell you that it is to stop feeling anger toward ----- (someone who has done something wrong): to stop blaming (someone): to stop feeling anger about (something). I had to truly understand what the act of forgiveness included before I was able to perform the action of forgiving you. I had to understand what you did, the true reason why you did it as well as the most important part, what I was even forgiving you for. But there’s only so much you can gather from reading OP reports. On paper, it looked like I must have needed that surgery, it truly did seem as though you were out of options, and I know you. You would never do a surgery, unless you felt that it was absolutely necessary, and then even when you felt that it was, you would take extra time running every noninvasive test possible to try and get around it, you were just that careful of a person. Those were actually the first words that ever came out of your mouth to me, “You know I am a very conservative guy.” These were all actions, and statements that I had to decipher the meaning of when I was pondering what it would mean to forgive you. So why was this so difficult? It was a few different things. Was it because I was never going to have an objective opinion on the events that led up to that decision? Yes, I think this was my number one problem (even this letter I don’t feel is fully objective even though I tried desperately hard to make it so). Was it because I was never going to know the TRUTH behind why you HAD to do it? Sort of. And one thing that always was just sort of in the back of my head I can’t really tell you whether it truly “bothered” me or not, but it was always just “there” was the fact that I never recovered the way you said I would, and my age wasn’t really on my side the way you had predicted. And one other thing that I never really realized and I'm sure we all have done this, but when you say, "oh I forgive you" it's usually a quick thing because it was something you want to get your mind off of, but I didn't want to do that. I knew this was going to be something that was going to be with me for the rest of my life. So I wanted it to be meaningful. People say those three words every day, and it's almost like they're a piece of gold that keeps getting used over and over again. They slowly become tarnished and old looking the more they're used, but I didn't want this to end up like that piece of gold. I wanted this to be special, but I was still so confused. Then I started coming at this from a completely different angle which I thought would be easier, and would lead me in other directions and hopefully I would end up where I wanted to be at the end. I had an idea to examine our relationship- as a doctor and his patient. I think we can both agree it was so much more than a typical doctor patient relationship, even though I never really said much, I could just tell that I was important to you. You told me multiple times that there was just something about me that made me special.</b><o:p></o:p></div>
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<b>In the 4,015 days (yes I’ve been counting-4,015 as of April 7, 2018) since that night, I have had more than my share of bad days, more surgeries, more infections, but I like to think I’ve had thousands of good days. Yes, I admit it, I said that you ruined my life, totally crushed all of my plans. But that was because I refused to see the great opportunities that were sitting right in front of me, and that they were the same opportunities that were there on April 6<sup>th</sup> 2006, except I now saw them with brand new eyes. Looking back on it now, it was exciting, but I was scared to death, at the time. It was like looking through a foggy pair of glasses, when the future you saw before was in perfect focus, and now no matter how much you squinted or contorted your vision, or tried to clean the “glasses” you could never bring it completely into focus, you just had to blindly walk to an amorphous future that you now knew very little about. It felt like everything that was an absolute in my future had been transformed into an “if then” statement. I didn’t like unfamiliar things, and to think I was going to have to do EVERYTHING differently for an indefinite period of time absolutely terrified me. I was so confused, that all I could think to do was blame someone and the easiest person to blame was unfortunately you. I blamed you for tearing my life into hundreds of pieces, for messing up all of my plans, but as time went on, I realized that things could have gone in the opposite direction that night and I could have lost my life. I recognized my life was already full of small miracles, and not just big tragedies. I had the revelation that the broken pieces of my life could be recycled and turned into an abstract metaphorical painting that could end up more beautiful than the original. I saw that “ruining” something and “losing” something have more differences than they do similarities.</b><o:p></o:p></div>
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<b> Like every teenage girl, I wondered what my purpose was in life, why I was put on this Earth, and this experience showed me that even though I wasn’t sure what my purpose was yet, there was a definite reason why I was still here; I was born to be a fighter. You told me that I was one of your favorite patients. That I was the ONE PATIENT out of hundreds that you were going crazy about, and couldn’t transfer hospitals and go over a thousand miles away until I was with someone you trusted. You will never know what that meant to me.</b><o:p></o:p></div>
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<b>What happened forced me to look at life in a completely different way. Yes, having a stroke changed my life, I think it alters everyone’s life in however much a way as you let it. But not everybody is a scared 17-year-old just growing into her own skin when they have it. I think that worked for me, but also against me. Because I was so young, I realized that I had so much of my life left to live, and so that should have been a catalyst to do well in therapy, and for a little while it was, but I admit I was sort of spoiled, I never really knew what it was like to struggle at something so much to the point where I had to repetitively do it for DAYS, WEEKS, even YEARS seemingly with no improvement, and it made me very discouraged, especially when everyone around me was saying that things were getting better but I couldn’t see them. It just felt like I was going to be stuck in this position for the rest of my life. Not being able to voice my wants and needs, made it very clear to me that unspoken words and actions were forever going to speak louder than spoken ones. I got to sit back and observe, and to be honest, I learned more doing that than I ever did participating. </b><o:p></o:p></div>
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<b>I hope you know that I will forever appreciate everything you did for me, both as a person and as my former doctor. I think it was because of this silent admiration that it was absolutely incomprehensible for me to think you could have overlooked something that seemed so important. I think that was part of the reason why it was so hard for me to make sense of it all. It was almost as if I unconsciously glossed over the part that would have been considered to be “your mistake” because I refused to believe that it happened. My parents were upset, but I think most of the reason for their anger, was they didn’t know the entire story either, it’s like trying to put a story together, that you only have 3 out of 7 pieces to and the three pieces you did have, you weren’t even 100% sure if those were correct. It was like the two hemispheres of my brain were constantly battling each other because neither side knew the entire story, I’m still not sure that I do. It was like one side said one thing but the other side said the opposite. I knew what I wanted to believe, but I had no clue if what I believed was what really happened. My mom asked you, “How is she supposed to rebuild her life,” and at the time I would say your answer was flippant, but now I look back on it and call it not exactly flippant, but extremely revealing. I’m glad you said it this way because it gave me a window to look through to your life and see how unbelievably hard it was and how much you had to sacrifice in order to do your dream job. You said, “I can’t even figure out my own life, I don’t want to be responsible for telling you how she lives hers.” Right after I heard that you said that, I thought, “No, I’m important to him, he wouldn’t ever say that,” but I now realize the pain you were going through. Spending sometimes eighteen hours a day at the hospital. It was really true what they said in medical school, you have to give your entire life to this job, and you did just that. I always felt like in your mind, it didn’t matter how long it took, you were going to make me feel better, you were going to figure it out. And you weren’t going to stop until you had done just that. You didn’t have to prove anything to me Dr. XXXXX. They always say actions speak louder than words, and in those four years, you embodied that statement to a T. </b><o:p></o:p></div>
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<b>My mom told me that night <a dir="ltr" href="x-apple-data-detectors://3" style="-webkit-text-decoration-color: rgba(0, 0, 0, 0.258824); color: black;" x-apple-data-detectors-result="3" x-apple-data-detectors-type="calendar-event" x-apple-data-detectors="true">at about 3am</a>, you simply came out of the OR tired as can be, you sat down next to my parents, and told them, the surgery was semi-successful BUT. No one likes it when there’s a BUT, especially when you’re telling them how their child is doing after surgery. You said you talked to me after surgery, I wish I could remember it, but unfortunately I don’t. I was really depressed for a long time, because as I said I had been lucky and never really knew what it was like to struggle, but this has been the most painful, supremely beautiful journey of my entire life. I may not know where I’m going, and twelve years ago, that would have made me crazy, but now it’s what makes life fun. I never could have developed the attributes that people say I now have unless I went through something this life changing. </b><o:p></o:p></div>
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<b>I’m telling you that regardless of how the past twelve years have gone for me, I’m finally at a place where I am happy with who I see looking back at me when I look in the mirror, and more importantly, I recognize her. I couldn’t recognize who I saw staring back at me for the longest time; it was like looking into one of those mirrors at the carnival, and it absolutely petrified me. Yes, you made a mistake, but you helped me in so many other ways, in the two years after that fateful night. In those two years, you did everything possible to figure out the genesis of my now constant pain. You treated me like your own daughter, you took my story to every neurosurgery conference you went to, you even gave me a copy of the PowerPoint that you showed doctors from all over the world. I still have it. When you went to conferences, you weren’t worried about people judging you for your actions, all you cared about was putting the best minds in the world on my case. I will never be able to thank you enough for this. You may think that because you weren’t able to figure it out you failed. You didn’t fail. You kept me alive for the five years I was in your care. You will always be my favorite cowboy boot wearing Elvis look-alike. Does this mean I would change the way my life has been? That’s been hard question to answer, because I’ll admit I was angry and confused for a very long time, and yes are times where I want my leg, hand, and arm to “work the way they used to,” but I think the ultimate answer despite all of that is No. I’ve learned way too much. Do I think this 100% of the time without fail? No, I don’t, but I needed to ask myself some questions, number one being was it hard? God yes, this has been the hardest never-ending test of my entire life. Question number two would be is anything that’s worth it easy to accomplish? In most cases no. There must be more good things I’m going to gain from this, or else I would be 100% by now. That’s the way I see it. The way I’m feeling now is that even though a stroke is obviously devastating, it was the wake up I needed to realize that life is hard. It took me every bit of strength I had to take a deep breath to say a sentence. I realized that in order to achieve things, you must try your absolute hardest, and put 150% in everything you do and to never give up. I fully believe I will be recovering every day for the rest of my life, April 8, 2006 was just day 1 of this incredible adventure. And so back to that question, would I take it back? No.</b><o:p></o:p></div>
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<b>I’m infinitely positive you would never purposely hurt me, that’s the reason I put all my trust in you. You know I loved you like my own father. Heck I probably spent more time with you than with my own father during those two years that I was my sickest, I probably saw you more than anybody. The thing I discovered about myself is bigger than you will ever know, and without the terrible events of April 7, 2006, I don’t think I would have ever discovered it. It seems so simple and I think that is the reason it’s so very often overlooked. I discovered that I had the power to forgive you. No one else has the power to forgive you for the tragic events of that night except me; no one can take it away from me, I have the power to use it in any way I want. Why does this seemingly effortless action have so much power? I’ve been asking myself that question for twelve long years and this is the answer I came up with. Forgiveness is as much for the giver as it is for the receiver. It allows you to acknowledge that the action happened, but it also enables you to say, yes this happened, but I’m not going to let it have complete power over my life. I never really realized how much this was weighing on my heart, until I came to the conclusion that I wanted to forgive you. Just then I felt this 1,000 lb weight was lifted off of my chest. But, the fact remained, that if I forgave you, it was all going to be permanent was looming over my head, and so I had to decide if I was truly ready to do this, especially since my complete opinion of this hadn’t really changed in 12 years. You can’t just take something of this caliber back after you say it (especially on a blog that everybody on earth has access to). This was something that I had to come to terms with. And after twelve years I am finally ready to say it. That in spite of everything I just mentioned, all the heartache, all the nights of crying in Comer, looking out the window of the 5<sup>th</sup> floor family room at a world that that looked so incredibly foreign to me; a world that I really didn’t feel a part of anymore, all of the weakness and everything that happened on April 7,2006-- -I forgive you.</b><o:p></o:p></div>
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<b>One mistake should NOT erase the six years of successful surgeries I had with you. Your job was to keep me alive for however long I was in your care and you succeeded, it wasn’t without bumps and bruises, but life isn’t meant to be easy. You and your former team have saved my life countless times, and that will never be forgotten. This experience helped me find myself- it helped me realize what true strength is, it helped me to see that just surviving until the next day, can make you feel strong even on your weakest days. As the years passed, I was slowly coming to terms with the fact that nothing I did; nothing I wished would ever make this go away. I had to turn it into a learning experience. I had to turn this into something “good.” Knowing you the way I came to know you in the six years you were my doctor, I know you would have never purposely put my life in danger. The last thing you ever said to me was the one thing I remember most about you. It was that if you ever had a daughter, you hoped she would be like me- petite with an aura of quiet confidence, then you said you were really going to miss me and Good Luck, and that was the biggest compliment I could have ever received. We never got to have a REAL chat, and for that I’m so sorry. I would have loved it; I honestly don’t think I ever said more than three words to you at a time. Forgiving you doesn’t erase the past, but it makes way for bigger and better things to happen in the future. I have you to thank for giving me a future to prepare for. I’m sorry you couldn’t fix me Dr. XXXXX. But know this- I will be forever indebted to you for everything you did do for me! <o:p></o:p></b></div>
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Kimi Sorensenhttp://www.blogger.com/profile/14667958984106551484noreply@blogger.com0tag:blogger.com,1999:blog-836792994399567811.post-81699447530666934102018-02-24T17:57:00.001-08:002018-02-24T19:45:06.110-08:00Why I wish I was Confirmed LaterIn the past few days I’ve heard of a lot of people’s children getting confirmed. That had me thinking. I wish I was confirmed later in life. I know that I had no idea what the magnitude of being confirmed was or even what it would bring to my life, and if you asked me how to pray I would probably stare at you stonefaced for about 30 seconds before awkwardly turning around and going the other way. I picked a saint (St. Cecilia)because I liked to play piano, not necessarily because of what she brought to the religious world and how she was martyred for it. Honestly I probably didn’t even know what a martyr was. <div><br></div><div>Right after I had the stroke I remember looking at my hand. Just staring at it for hours; trying to get it to open. I remember I would take a deep breath and just literally stare at my hand. I really don’t know what I expected to happen, because just because you want something to happen doesn’t necessarily mean it’s going to happen. So after staring at it for about 10 seconds I would take another deep breath and try with all the strength I had to make my hand open. I remember the muscular pain and how I could get some of my fingers up but not all. And then I would try wiggling my fingers. That didn’t happen at all.</div><div><br></div><div> Just then I thought about the piano. I never until that moment realized how strong my wish to try for Juliard was until it seemed impossible. I couldn’t even open my hand from a fist and forget moving any of your fingers independently. I felt as though trying for Juliard was impossible. And everytime I looked at a piano or a keyboard my heart sank to the floor. My mother had told the occupational therapists that I played and they all sang the song of, “Oh that would be awesome for OT.” But when they came into my room and I couldn’t even open my hand from a fist that was so tight my knuckles were white and I had bright pink nail marks in my palm, tears filled my eyes. And I decided then that I never wanted to play the piano again.</div><div><br></div><div>As the years passed and I was intensively doing occupational therapy to try and get some movement in my arm, wrist and hand/fingers back, I thought about the piano a lot. It was like my brain was two people. One side said try it but the other side said not a chance. I began thinking of St. Cecilia and her harp. I questioned things a lot. Why if I had all this talent would it be so savagely stripped from me? Why wasn’t Saint Cecilia helping me? She was a saint right? So she must have had some sort of super human ability... (not really) but I just very childishly thought that by my praying to her she would make my hand all better. Little did I know that everything that lead up to the stroke and the next 10 years would be the most painful years of my life. But I learned more about music during this time than I ever could. And I never sat down at the piano not even once. I would walk by it in my house, and stare at it. Almost like I was trying to telepathically speak to it. But it had turned itself into something I hated but at the same time, something I needed and loved with all my heart. </div><div><br></div><div>When I picked St. Cecilia as my saint for confirmation I had absolutely no idea that during my later high school and college years she would take a starring role in virtually everything I did. I thought about piano all the time. I told myself that I wanted to start again. But at the same time I was so afraid, because it wasn’t just my fingers that I couldn’t move anymore. I didn’t have the strength in my lower leg and foot to pedal anymore. My entire arm ached when I tried to play a scale. My entire view of music had been transformed from something I loved into something I loathed. And I was heartbroken. So I turned my sorrows into prayers. I asked God if he really wanted me to play the piano then have Saint Cecilia speak to me through music (not really knowing if this would happen or not). </div><div><br></div><div>I was in college and I suddenly figured out I needed a fine art to graduate. I was looking through at the classes that they had and thought, art? Nope can’t move your fingers. Piano 101. That should be easy considering you have about 16 years worth of piano theory stored in your head. No one needs to know you played and plus it was long enough ago that you can fake it. And who knows maybe this will be good for you. And so I signed up for piano 101. The first day of class came and the first words to come out of the teachers mouth were welcome to piano 101. Raise your hands how many people here have at least 3 years or more of piano experience as well as theory? And I thought don’t say anything don’t say anything, and then she said the one thing that always makes me feel horrible tell the truth lol. And so I raised my hand. She looked at me and simply said how long, and honestly at that very moment I was thinking lie through your teeth, but then I thought she’s a nun so I’ll probably go to Hell if I lie to a nun, and so I sort of rolled my eyes and said like 13 years but I very quickly followed that up with but I haven’t played in like 4 years I swear. And she literally said, “get out”. And I was just like,” what? Are you seriously kicking me out of this class”. She said I want you in piano 240. And I was just sort of looking at her with a sort of dumbfounded look on my face. Really I was thinking shit. You could have just kept your mouth shut and faked it... But piano 240 ended up being one of the best classes I took that semester. </div><div><br></div><div>I realized when I sat down at that piano and put my fingers on the cold keys I had this feeling. And the first couple of times I played I couldn’t exactly place that feeling, but I knew it felt familiar and I knew I liked it. As I moved on in that semester I realized that feeling was joy. I realized why I had felt so sad in the past few years. I remembered the joy music brought to my life. And even though my fingers were and still are pretty much paralyzed I’ve been able to play. And that semester I was able to play well enough to get a decent grade. I means she knew my story and so I think she was sort of lenient. But all through that semester when I would practice and my hands and fingers would ache with exhaustion I would look at the picture I printed out of Saint Cecilia. I would lock eyes with this picture and it was almost like she was speaking to me. Telling me she knew how hard this was but to just remember the joy music brought to my life and in that exact moment I realized it didn’t matter how well I played or if I could play an entire Bach invention with 0 mistakes. It was all about that intense joy I felt in my heart when I played. It wasn’t really about how good I was or how accomplished I could become. And only then (9 years after I was confirmed) did I realize the true reason I picked St. Cecilia as my patron saint for Confirmation.</div><img id="id_bfcc_5f4d_7853_5d92" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEimgQoR5pvnAQrb5JMR0c2y1e2Jw5_62AqAhgAFTiQRM9g2TbdRIL7c2eLITvH9B0fwpy6DaWXTwtsp01IKqUTVeHycsEgRTLt1UEO2Ghhatm69MK_emrl1NTv823_Sq4wRDrvqbU1GFJp_/s5000/%255BUNSET%255D" alt="" title="" tooltip="" style="width: 392px; height: auto;"><br>Kimi Sorensenhttp://www.blogger.com/profile/14667958984106551484noreply@blogger.com0tag:blogger.com,1999:blog-836792994399567811.post-39068859085067914742017-11-14T08:06:00.001-08:002017-11-14T12:06:19.427-08:00How the book Wonder Taught Me to Embrace my Scars<div class="MsoPlainText" style="-webkit-text-size-adjust: auto; font-family: Calibri, sans-serif; font-size: 11pt; margin: 0in 0in 0.0001pt;">
<span style="font-size: 12pt;">I was lying in a hospital bed 3 years ago, alone, the 25<sup>th</sup> day, on the verge of crying, when my phone pinged. I wiped my eyes and looked at my phone. It was a text from my friend Liz. It wasn't a grand 500-word text, it was just very simple, 10-word text that said, what can I send you, I feel so incredibly helpless. As I wiped my eyes, and attempted to put my thoughts together to answer her, I was thinking, what do I need? I need to get out of here but I know you probably couldn't do that. I sat there for a second thinking, and then it popped into my head, something to pass the time. I texted her back and said, something meaningful that will help me pass the time and forget where I am, I'm so sad when I look around and see these 4 encased walls of my CCD room. She said ok, I have some ideas. Four days later, my nurse came to my room with a package in hand, and said, "My dear you are getting popular what is this like 3 packages <a dir="ltr" href="x-apple-data-detectors://0" style="-webkit-text-decoration-color: rgba(0, 0, 0, 0.258824); color: black;" x-apple-data-detectors-result="0" x-apple-data-detectors-type="calendar-event" x-apple-data-detectors="true">in one week</a>?" and I just said, "No, it's just because I've been here too long." I opened the box, and this bright blue and yellow faced book with a huge eye in the middle was staring at me. And the title of the book illustrated perfectly what I was feeling at that very moment. Wonder. I wondered a lot. I wondered if I was ever going to get out of the hospital, I wondered if I was ever going to be considered healthy again, I wondered if my friends at Jewel even remembered me etc. Immediately I took a picture of the books and sent it to her with the biggest thank you I could find in my gif's, and about 20 heart emoji's. Then I asked her which one do I read first? She replied, "Whichever one you want."<o:p></o:p></span></div>
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<span style="font-size: 12pt;">As I was reading this book, I was absolutely awestruck at how pure Auggie's and Summer's friendship was. And then it hit me. Everyone is nice to start, it's the trials in life that either make them better or bitter. But it seems as though, all children are inherently nice, and undeniably innocent. And that is what I love about Auggie and Summer's relationship. When I first read this book, it obviously talked a lot about how Auggie looks different, but that doesn’t seem to matter to Summer. That seemed to me to be the premise of why the book read the way it did. And then I thought about my scars. And immediately, a thought engulfed my entire brain. It was a comment on an OP report from when I was only a few months old, and it more or less said, "This baby has hydrocephalus, the operations don't seem to be working, and so we have come to the conclusion that she won't live very long, and so we don't have to make the scar 'pretty' and trust me they sure did NOT make the scars ‘pretty’." There are those scars, that I call my Korea scars, and my newer scars, that I call my Chicago scars. I had the Korea scars my entire life why did they bother me so much? Just because something becomes a part of who you are, doesn’t necessarily mean you like it.<o:p></o:p></span></div>
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<span style="font-size: 12pt;">As I went on in the book, it amazed me at how strong Auggie was, amidst all the adversity he suffered. The entire book mirrored my life in so many extraordinary ways even though, I was an adult and he was a child. Every unsure feeling that he had, walked with me as I had that unsure feeling. Every doubt I had reflected back to every doubt Auggie had. I loved how the book had different chapters in the POV of the different characters. That was what made it seem more “real” to me. Because you were hearing all of these opinions from what seemed to be “actual people”. I also loved the way this book wasn’t so stereotypical. It chose to “go there” when no other book out there went there. It chose to dive into the subject of bullying in such a way that it grabs you as a reader, and you are almost forced to keep reading, it’s not the stereotypical the bully beats up on the little guy he gets punished the story is over. It chose to dissect every single character no matter how small, and tell you why they were the way they were. I also saw my family in Auggie’s family. I saw my sister in his sister, in the ways her needs and wants were sort of tossed to the side, and seen as not as emergent as my needs were at that very moment. I saw my mom in his mom, and how she fought for me, and how she asked so many questions, not because she was deliberately trying to be annoying, but because she wanted me to go through the least amount of pain possible. And I saw my dad in his dad. The quiet, sort of by his mother parent, who didn’t say much, but what he did say stuck.<o:p></o:p></span></div>
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<span style="font-size: 12pt;">So many of the different things Auggie likes were things that I liked for the same reasons and that actually sort of surprised me, because even though I am an adult, I have both childish likes and adult likes. I love staying in on a <a dir="ltr" href="x-apple-data-detectors://1" style="-webkit-text-decoration-color: rgba(0, 0, 0, 0.258824); color: black;" x-apple-data-detectors-result="1" x-apple-data-detectors-type="calendar-event" x-apple-data-detectors="true">Friday night</a>, but I also love parties with my closest friends. I love puppies and I love candy. I love Halloween when it’s not too cold, which it always is. And so does Auggie. Why does Auggie love Halloween? Because he can pretend he's something other than himself. I feel like I play almost an adult version of "dress up" every day. I get to go out into the world, and "pretend" that I'm not as sick as I really am. When you think about it Auggie is really a simple character, trying to teach simple lessons. It’s the trials of life that make them difficult to learn. Nobody has an easy life. No matter how much money you have, or how good of a job you have, life’s always going to be hard in one way or another. It’s what you do with that difficulty that determines the type of person you are meant to be. Auggie sets out to prove that he’s exactly like everyone else, but what he proves is far beyond that. And then I realized what my mom had been telling me all along had been true. Just because someone says you can’t do something almost always means they want you to prove them wrong. When I got home from the hospital, I felt like a broken, tired, worn out version of myself. I didn’t recognize who I saw in the mirror anymore. This had been the most trying hospitalization that I legitimately remember every part of. I felt broken. The more broken I felt just seemed to be a catalyst to cause me to dive deeper into this book. This book was so healing to me in so many different ways. Auggie doesn’t realize it, but he’s teaching everyone how to be a better person just by being himself. Here he was thinking he was just going be a burden on everybody, at “normal school” and he’s teaching the other kids how to be good people. Even the mean kids. The kids who are the meanest to him, end up coming and defending him.<o:p></o:p></span></div>
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<span style="font-size: 12pt;">This book taught me that wounded healers are not born they are made. It’s their experiences through life that create themselves through conquering what they thought they couldn’t, or when they were too afraid to take another step. Yes my scars may not be the prettiest things you've ever seen. But they also tell a story that I would never be brave enough to tell on my own. Now when I look down and see my scars, I don’t think OMG they’re so ugly. I think they’re proof that hydrocephalus tried to kill me, and it failed. Now when I look in the mirror, and see my scars almost staring back at me, I don’t think they’re ugly. I think they’re proof of what I’ve been trying to prove my entire life. That I am brave, and I can get through something that seems infinitely hard—just like Auggie. <o:p></o:p></span></div>
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Kimi Sorensenhttp://www.blogger.com/profile/14667958984106551484noreply@blogger.com0tag:blogger.com,1999:blog-836792994399567811.post-45063341494974568602017-04-26T09:01:00.001-07:002017-04-27T04:26:46.493-07:00I'm Not Invisible: My Illness Is.<p class="MsoNormal" align="center" style="text-align: start; margin: 0in 0in 8pt; line-height: 15.546667098999023px;"><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);"> I never liked or understood the terms invisible illness. Maybe it’s because I’m a natural science major. I only like tangible things. Things you can prove. I was so confused, when I heard the terms invisible illness. How could something that is supremely real, and very visible to me, be invisible to everyone else? I was searching for an answer to this for a long time. A real answer, the sort of answer that doesn’t have a thousand different opinions, meaning thousands of potential different answers. I wanted there to be a concrete “this is THE ONE AND ONLY answer to your question” because to me that meant that was the right answer.</span></p><p class="MsoNormal" style="margin: 0in 0in 8pt; line-height: 15.546667098999023px;"><span style="line-height: 19.786666870117188px; -webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);"> I was looking at a friend’s blog page. She has a completely different unrelated illness than I do, but there was one way that connected the two of us. They’re both invisible illnesses. When we wake up every morning we both have the exact same thoughts running through our already overworked brains: “How are we going to have to validate our choices and decisions to people on ‘the outside’ who are judging us because they can’t see our illnesses.” Everyday we get up and we decide to LIVE. Is this living different than what you do every day? In some ways yes. Because we know what it’s like to get your entire life taken from you and what it feels like to have to fight for it to come back into your grasp, having it be just a little too far, to touch, but close enough to make you get that lump in your throat, when you see what you “could be, or should be doing” if only you were healthy.<o:p></o:p></span></p><p class="MsoNormal" style="margin: 0in 0in 8pt; line-height: 15.546667098999023px;"><span style="line-height: 19.786666870117188px; -webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);"> When I came back my senior year of high school, was the first time I realized I was “different.” I tried to ignore it for all of sophomore and junior year. But when I came back after a semester and a half long hiatus, I realized, that I didn’t really recognize anyone. I recognized them physically, but so much had happened since I saw them last, that I really didn’t recognize them. I tried to go back right where I left off, but it wasn’t working and I knew that. I had decided to just be that “healthy girl” that I was so good at playing 8 months ago. Before a life changing stroke, happened to me. Before I had to undergo 15+ surgeries in those 8 months. I tried to pretend that the girl I saw in the mirror everyday wasn’t as foreign to me as she truly was. I tried to suppress the fact that she existed, because I didn’t want to admit that yes those 8 months had changed me, profoundly. <o:p></o:p></span></p><p class="MsoNormal" style="margin: 0in 0in 8pt; line-height: 15.546667098999023px;"><span style="line-height: 19.786666870117188px; -webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);"> But after years of seeing a stranger when I looked in the mirror, I’m finally beginning to see it was ME all along. My illness may be invisible, but I can assure you I am not. I’m not healthy, but I’m living in spite of it. I’m the girl who chose to LIVE life in every sense of the word, with these life altering illnesses. People need to know that I’m not upset, I’m not bitter about what these illnesses have done to my body. Have they changed me? Yes. Have they taken things away from me? Yes, but I’m not going to snap my fingers and have them all come back. And I slowly realized that I’m not upset about having these illnesses, was I upset because of what they did to me? At first yes. But as time has gone on, I’ve opened up my heart more and realized when I did that, I opened everything. And became so much happier. I can finally say, I can look in the mirror, and not only do I recognize who I see now, I’m proud of her.<o:p></o:p></span></p><p class="MsoNormal" style="margin: 0in 0in 8pt; line-height: 15.546667098999023px;"><o:p style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);"> </o:p></p><p class="MsoNormal" style="margin: 0in 0in 8pt; line-height: 15.546667098999023px;"><o:p style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);"> </o:p></p>Kimi Sorensenhttp://www.blogger.com/profile/14667958984106551484noreply@blogger.com0tag:blogger.com,1999:blog-836792994399567811.post-72622789038246215982017-04-07T06:13:00.000-07:002017-04-07T06:13:18.508-07:00MY Account of what Happened 11 Years Ago Today April 7, 2006.<div class="separator" style="clear: both; text-align: center;">
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<span style="font-size: 14.0pt;">It doesn't take very much
to bring me back to April 2006. It could be a smell of a nice hot biscuit
absolutely drowning in butter and honey, the get well cards from complete
strangers that I keep in my ripped, taped over first hospital “treat” bag ever,
a beep from my watch, or even Purell hand sanitizer (the regular kind, not the
foamy kind). And suddenly with the snap
of your fingers, I'm back.<o:p></o:p></span></div>
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<span style="font-size: 14.0pt;">I am at home, just lying
on the couch. It's what I've been doing on and off for months. My mom knows
something has to be done but I think she has an inkling that my doctor has no
idea what to do. I beg her to go "in." Just for some pain relief.
That's all I want is pain medicine. At that very moment I didn't care about a
cure, I didn't care about the possibility of endless surgeries. All I want is
to be in my "safe place" with the security of knowing I’m getting
help. Which to me and a lot of chronic kids is Comer. It is the place we feel
safest. It's the place where everyone knows you by first name everywhere, and your
breakfast takes forever to get to you but you forgive them because their
biscuits are amazing!!<o:p></o:p></span></div>
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<span style="font-size: 14.0pt;">I get up off the couch.
Just doing this takes every tiny bit of strength I possess, just to keep myself
from crying. I walk to the kitchen like an old lady. Bent over and bones
creaking. My mom is on the phone with my doctor’s nurse. I wait until she gets
off, and then I just stare into her eyes. We do this for about a minute or so.
She tells me that I look exhausted. I tell her I feel exhausted. Chronic Pain
isn't for wusses. She tells me that she
just talked to Amy (name changed in case she goes nuts and wants revenge) and
she said we should come in through the Comer ER that she would tell the
residents to be expecting us later that afternoon. I go upstairs and pack the
"hospital essentials". Cute Jammie's are a MUST. Teddy bear slippers,
slipper socks. Blanket that the PICU gave me for Christmas. It seems like I
have everything.<o:p></o:p></span></div>
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<span style="font-size: 14.0pt;">When I get to the ER, so
many people are coming in and out of my sad excuse for a "room",
which wasn’t really a room at all. It was just a bed, a chair for someone else,
and lots of monitors, and needles and alcohol swabs. I could hear noises all
around me. Babies crying, people yelling, but there was that familiar hospital
aura that made me feel safe. That "hospital smell" no longer
existent, the beeps of the machines? They would lull me to sleep at night. We
finally see Dr. Collins(again name changed) and he says I'm on the OR schedule
for the next morning to get a lumbar drain put in. Honestly, I don’t even care
about what he’s doing or quite frankly why he’s doing it. I just figure he’s a
doctor there has to be some thought processes about what he’s doing and why
he’s doing it, and so I’ll be happy that he’s at least doing SOMETHING. <o:p></o:p></span></div>
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<span style="font-size: 14.0pt;">I stay in the ER until
later that afternoon. Then I’m up on the ever familiar Comer five. I’m still in a ton of pain, but just the
thought of them doing something about it the next day, makes me feel at least a
little bit better. For the next 24
hours, I had different pain medicines pumped into my tiny veins. Each time I
would get them, they would make my entire arm turn bright red, and burn, slowly
destroying the VERY few good veins I had left. Before I knew it, my hands were
swollen, and felt like they had acid going through them, but it made me feel
better just knowing we were in Dr. Collin’s care. I admit I saw him as a man
who could do no wrong, somebody perfect. I worshipped him and he knew it. Even
though I never said much to him he knew I adored him. <o:p></o:p></span></div>
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<span style="font-size: 14.0pt;">After two years of almost
nonstop hospital visits, you sort of get a shield on your soul, that doesn’t
allow you to feel the ups and downs of emotions of when you’re “in.” You’re not
“excited” in the exact sense of the word when they say they’re going to do
surgery, but you’re happy you will hopefully be feeling better when it’s all
done. You guard your heart like it’s
precious, you guard the hearts of those around you even closer. <o:p></o:p></span></div>
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<span style="font-size: 14.0pt;">That night, I get
basically no sleep. I know I should feel something about tomorrow, but I don’t
know what to feel. The past 6 months has disallowed me to feel hopeful about
anything, but it makes me feel better that they’re putting the lumbar drain in.
Even if it is just to buy them time while they think of something. The next
day, I am woken up early, by the fellows and residents. After they ask me their
typical 20 questions, I just close my eyes again, trying to forget where I am,
and forget what I’m about to go do, it. I said before I was excited, but to a
point, you’re never excited about surgery, even if it is just to put a drain
in. I hear the main fellow, an Indian woman named Dr. Patel (Name changed,
because I know if she ever read this she would want revenge and would track me
down) pulls my mom aside and starts whispering to her, I hear bits and pieces,
but mainly I heard that I should be heading down to Preop at about 7:30, that
they bumped the first surgery on schedule and put me in there. <o:p></o:p></span></div>
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<span style="font-size: 14.0pt;">Before I know it, my nurse
comes in and tells me that transport is here to bring me down to the OR, and
that she will see me after. They bring a wheelchair into my room but they tell
me I can either get in the wheelchair, or just stay in my bed. I decide to just
go in my bed. After the transport person ditches the chair, they bring me down
to preop. I’ve been on this familiar route so many times, that I think I can do
it with my eyes closed. Down the hall to where the hall splits into wings,
right by the nurses’ desk, take a left get in the elevators, down to floor
number 3. I mouth what the voice in the elevator says, even before she says it.
My eyes are closed, because it’s so unbelievably bright. I slide down
underneath my covers even further, because of the rush of cold air that hits me
as the elevator door opens on the third floor. I am wheeled to preop where
surprise surprise we get to wait more. I still have yet to realize why they
make you get there so early just to wait. <o:p></o:p></span></div>
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<span style="font-size: 14.0pt;">The usual suspects stroll
in, and explain what they’re going to do. The anesthesiologist, the
anesthesiology resident, the neurosurgery resident, the preop nurse, maybe if
you’re lucky and look young enough, a child life specialist. When I see all the
doctors come in at once, minus the neurosurgeon and the anesthesiologist, I
know everything’s ready. This is the cue for kisses, and the anesthesiologist’s
words that I’m told make most parents cry, “Ok mom and dad, we will take good
care of her, time to go.” Surgery is an
equal opportunity offender. No amount of money, or privilege can free you from
the grip of illness. But no one should
be forced to go through as many surgeries as I’ve been through, or my friends
have been through. We get well just in time to hear we are having another. When the chronic life chooses you, you’re
thrust into a club that you didn’t ask to join and you CAN’T leave. You’re thrown into battle with no training. <o:p></o:p></span></div>
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<span style="font-size: 14.0pt;">I wrap up in my blankets
like a burrito, tell my parents everything is going to be ok (not really
knowing myself), and give them a kiss. The look on their faces I’ve seen it so
many times before, it’s that look of desperation, a look that through the years
I’ve seen hundreds of times, whether it be my parents’ faces, or other parents’
faces. I can’t ever imagine what it’s like to hand your child over to doctors
and say, “fix her, I trust you and then sign your child away, with one
signature on a consent form.” I’ve seen this look in their eyes countless times
over the past two years, and I can’t tell you how much I admire them for
it. I head down the ever familiar
hallway, to the OR, the white, bright, clean OR. They pull my bed parallel to the OR bed, and
I slide over. I try to bring my blankets with me because I’m just so cold, but
then I hear, “Oh no sweetie, we will give you nice warm ones I promise.” I
leave them behind, and try to get comfortable for the next couple minutes that
I will remember. I see the mask coming close to my face. The mask comes closer
to my face and comes to rest on my mouth. I think I don’t want to breathe it
in, but then I think if I just breathe the sooner this will be all over. So I
start taking deep breaths. With every
breath I take, I can feel my body slowly not be able to move. I can hear the
anesthesiologist. She is saying, “Good girl, just keep taking deep breaths, and
this will all be over soon. The world
around me starts getting further away. Right before I fall asleep, a tear goes
down my face, and the last thing I hear is the anesthesiologist saying, “No
sweetheart don’t cry, everything will be ok… shhh……. Slowly I slip away into
another universe of nothing but black sky; no stars, no planets, just never-ending
jet black sky. <o:p></o:p></span></div>
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<br /></div>
<div class="MsoPlainText">
<span style="font-size: 14.0pt;">Before I know it I’m
awake. Surgery is over and I’m on my way to recovery. I realize I don’t have a
headache, my back is a little sore, but that’s a small price to pay. I think to
myself, “Oh My gosh! But how long is this going to last? I had been conditioned
in the past two and a half years to expect the unexpected around each and every
corner. <o:p></o:p></span></div>
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<br /></div>
<div class="MsoPlainText">
<span style="font-size: 14.0pt;">The rest of the day, and
the five that follow are spent sleeping off anesthesia, and just enjoying the
freedom that I had long forgotten about and had since become so incredibly
foreign. No PAIN! After about the fifth day, they decide that for infection
reasons they’re going to pull the Huber Needle and putting in an LP shunt in
addition to my VP. <o:p></o:p></span></div>
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<br /></div>
<div class="MsoPlainText">
<span style="font-size: 14.0pt;">My mom tells me that about
three days after my insertion of an LP shunt, in addition to my VP Shunt that
was already in my head, I am out of my mind with pain. They are pumping my
veins with every pain medicine they have as often as they can, my veins are as
red as a junkie’s and burn like fire. My dad and brother are on their way to
take me home, they are bringing dinner we are going to eat and then we are
going to head home. They walk into something no one ever expects to see. Both
of my shunts have malfunctioned at once, and I am lying there in a ball,
screaming in between bouts of throwing up (which is relatively uncommon, for
both to fail at once, especially at the exact same time.) My doctor is called, and rushes to my room,
all he says is, “This is it, her vents are huge, I think the Endoscopic Third
Ventriculostomy is her best chance.” He even plays with the controllers on my
bed, to make the head of my bed go back even further, so my vents would get
even bigger faster. He tells my parents
we have to go now. What were my parents going to say? He had given them an
ultimatum they couldn’t refuse, that is without surrendering my life or so they
were told. <o:p></o:p></span></div>
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<div class="MsoPlainText">
<span style="font-size: 14.0pt;">It is really late at night
when they start the surgery, my mom stares at the doors that she saw me go
through just hours earlier. A few hours later, she sees the door open and she
sees the man she’s been hoping to see for hours. He spots my parents. He goes
over to them, sits down in his scrubs and cowboy boots, and said, “We’re done,
um… we were able to make the bypass but we weren’t able to make it big enough…it
was close to her brainstem… but uh she hemorrhaged…. She’s ok, but she had a
stroke. Um, this specific part of the brain, mainly provides motor skills, and
controls a little bit of speech, as well as parts of memory. I tried talking
with her, and she can talk, but there is a significant delay, we replaced her
LP shunt.” <o:p></o:p></span></div>
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<div class="MsoPlainText">
<span style="font-size: 14.0pt;">For the next few days, the
only thing I can think about doing is sleeping. Therapists come in, but they
don’t stay long because none of them can keep me awake long enough to do
anything. I am just so tired. All these therapists keep coming into my room.
They keep waking me up taking me to radiology, to drink some weird thick drink
that they say tastes like a milkshake but trust me DOES NOT, in order to do
swallow studies, doing PT, and I just want to be left alone. When physical
therapists come into my room, they’re so happy, and I wonder, “Why are you in
such a great mood? Needless to say I am NOT in a good mood. The physical
therapist walks into my room carrying a huge belt and a walker. I can only
imagine what she’s going to do with them. And then she says the five words I
was least looking forward to, “Why don’t we try walking?” I just stare at her,
looking at her like, “Um are you kidding?” Then she says, “I promise it will be
fun.” “Um I doubt it”, I think, but just appease her. I sit up in bed. She comes over and puts the
belt around my waist. I tap her shoulder, and then point to the belt, and
shrug, and she tells me that it’s for her to hang onto in case I am unsteady. I
nod my head and then shrug, she says, “Honey you don’t remember? You had a
stroke.” <o:p></o:p></span></div>
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<div class="MsoPlainText">
<span style="font-size: 14.0pt;">My heart stops. My eyes
fill with water. My world stops. How can I go on I think? How can I rebuild my
life? Well one step at a time that’s how. <o:p></o:p></span></div>
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<br /></div>
<div class="MsoPlainText">
<span style="font-size: 14.0pt;">A few days later, I am
lying in my bed in the pediatric cardiac intensive care unit. (PCICU)Just
staring, wondering how my life could have changed so fast. Hearing the beeps
around me, but almost not caring. They
are part of the PCICU, even more than the normal neuro floor. All of a sudden, words start coming out of my
mouth, but they’re not words, they’re more like a lot of different sounds. My
mom is startled and so she rushes over to my bed. She starts screaming my name,
but it’s almost like I’m in an alternate reality, I can hear her, but she can’t
hear the words I’m trying to say to her. Suddenly, the doctor comes into my
room. I see her face turn white, I hear her screaming to the nurse, and suddenly,
I’m at radiology. Why am I here I think? The CT scan seems to be taking so much
longer this time, probably because of the pain I’m now in. Suddenly, I throw
up, but I’m lying down and don’t have the strength to get myself up. Before I
know it there are people all around me. They lift my head. It seems like
seconds pass before I’m back up on Floor 4, PCICU. I hear a nurse scream “She’s
critical, the doctor is doing a crash lumbar puncture.” Honestly I don’t even
have time to be afraid that this is my first time being awake for an LP, it’s
going so fast. And I’m in so much OTHER pain that the needle in my back is the
least of my worries. The next thing I
hear is, “it’s all pink it’s all pink, the hemorrhage has clogged the LPS, she’s
got chemical meningitis; she needs steroids and we’ve got to get her to the OR
for immediate replacement, call neurosurg!”<o:p></o:p></span></div>
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<br /></div>
<div class="MsoPlainText">
<span style="font-size: 14.0pt;">That’s the last thing I
remember until about two days later. My child life specialist Christine has
come back with an armload of stuff. I
just stare at her as she stands in the doorway. She says, “Hi Kimi, glad to see
you’re up, can I come in and do some stuff with you? I nod. As she comes
closer, I see that she has a desktop calendar, as well as a communication board
with a bunch of stickers on it. She sets them on my bed, and says, ok I’m going
to put two different colored balls on your bed, and we’re going to work with
those first.” She says, “Can you point to the one on the RIGHT for me with your
RIGHT hand?” I point to the one on the left, with my left hand. Then she says,
“Kimi which hand is your RIGHT hand? I look at my hands, then I pick up my left
hand. She shakes her head. She asks me, “Can you talk to me?” I just stare into her eyes. I’m trying to
tell her that I don’t understand why I can’t do all these things that I could
do effortlessly, just last week? I had
no idea what a stroke was, or what it could do to your body. I’m scared, I’m
confused, I want to know if it’s going to be like this forever…<o:p></o:p></span></div>
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<span style="font-size: 14.0pt;">She leaves and I cry
myself to sleep. Confused, sad, and angry can’t even begin to describe the
intense emotions I feel. I just cry until I fall asleep. I wake up a couple
hours later, but I hardly feel refreshed. I just feel empty. Like there’s
nothing left. Emotionless, in pain, and hollow, those are the only words I can
think of to describe myself. I am at my lowest point, I don’t think I can go
any lower. These events are the sequence of how the next few days go.<o:p></o:p></span></div>
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<div class="MsoPlainText">
<span style="font-size: 14.0pt;">I go home thinking this
disaster is over. But it’s unfortunately just beginning… During the next 11
years, I will have about 15 more surgeries, as well as 4 more life threatening
infections, <o:p></o:p></span></div>
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<br />
<div class="MsoPlainText">
<span style="font-size: 14pt;">Fast-forward 11
years. Life has tried to show me for the
past 14 years, that it has complete control, but I have a feeling I’m winning. The
way I’ve tried to rebuild my life after this </span><span style="font-size: 18.6667px;">life changing</span><span style="font-size: 14pt;"> experience, (honestly originally I had written horrible, but then I was thinking about it, was it horrible at the time? OF COURSE, was it horrible the past 11 years? There were times, but I
wouldn’t trade one second of what happened to me over the past 14 years because
of the adult I’ve turned into. I think it’s all worth it. It’s not fun, but
rarely are worth it things easy to attain. <o:p></o:p></span></div>
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Kimi Sorensenhttp://www.blogger.com/profile/14667958984106551484noreply@blogger.com0tag:blogger.com,1999:blog-836792994399567811.post-380567943393053532017-03-05T16:46:00.000-08:002017-03-05T16:46:14.854-08:00Why I Still Struggle to Talk About My DiagnosesThirteen years. To some it is a lifetime. To others it almost seems like a blink of an eye. To me? What if I told you it seemed like both a lifetime, and the blink of an eye? What if I told you that these thirteen years have been the most painful yet the most important years of my life? What if I told you that if I had the choice to go back and do everything differently, OR I could go back and do everything the exact same way it has happened, but that would make the pain 10x worse, that I would choose to do it all again? What would you say? Would you think I am crazy? Most would.<br />
<br />
Thirteen years ago, I went into the neurosurgeon. I was what I like to call a neurosurg virgin. I had no idea what was going to happen. When he told me I needed surgery, I had no idea what to think. I didn't really know if I should be upset, or sad, or happy we figured it out, I just sort of sat there emotionless. During these last 13 years, I've learned that reading other stories about your diagnoses, can be either your best friend, or your worst nightmare, because even people with the exact same diagnoses as you, could travel a path that's far different than what you go through yourself. I continue to seek answers, for this ever frustrating thing called chronic pain and it's sidekick hydrocephalus- a medical condition that I like to say it's common but not common. It's a snowflake illness, never are you going to have a patient that's exactly like you. I'm 28 years old and I've probably had over 40 surgeries, I know people who are half my age who have had over 200 and people who are double my age who have had two. You just don't know. I think that's the most frustrating part of this. No one can predict the future. Yes my parents can say oh you're past that "rocky time"(14-25) but does that mean nothing bad will ever happen to me again? No. It's evidence that it's hopefully unlikely that I will go through anything that horrible again, but no one can tell the future.<br />
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Thirteen years. You would think that after this long, and hundreds of doctors appointments, talking to residents, NP's I would become an expert at explaining my diagnoses to other people. What if I told you it was the opposite? There's an overwhelming sense of guilt that goes along with each explanation. It's as if I'm trying to validate myself and my choices. But I'm also trying to do it in a way that's not condescending. It's hard to talk about something that has become such a part of you. It becomes your normal. Because I never feel good, I never have a day where my head pain is zero, and my scars don't throb, where I can totally keep up with everyone, but that becomes your normal, and so you feel "fine" or my favorite, "I'm OK" anyway, and it takes having something really really bad happen to you to even notice that there's anything wrong. So then is it really a lie? If it has become so etched into your being that it's truly a part of you? That feeling awful has turned into a piece of you that makes you you?<br />
<br />
I remember two years ago, when I was in the hospital for a month, and I got back to work. Everyone was asking me, "Where were you? It was just like you were here and then you were gone and now you're back, did you go on vacation? Were you just taking a break?" I remember the possible answers I could have given them churning inside my head, just trying to put the words in order. Honestly I think I eventually just said, "Oh I was really sick". And they were satisfied with that, and so was I. I could hide behind my mask of a fake smile and laugh, and make them think I was fine and nothing was wrong with that right?<br />
<br />
Going to the neurosurgeon and waiting for four hours, is now normal. Do I ask questions when I'm there? Yes, but not for the reason you think. Not for answers, it's so he makes me write a paper on it so I can figure out the best treatment for me myself. When you're turned into a hospital kid your entire persona changes. You go from being a carefree person with no worries, to a freaked out hypochondriac in a matter of what seems to be 10 seconds. Does it scare you? Heck yeah it does. I remember not crying, not because I wasn't upset about what just happened, but because I was so upset about everything that happened, I didn't know what to cry about first!? I was just so overwhelmed with the entire situation, I was just frozen.<br />
<br />
Your pride gets put into check, being a patient is not always pretty, and hardly ever glamorous. Have you seen those oversized hospital gowns? Yeah not exactly what I would call appealing. The things that happen behind those closed doors, yeah something you choose to never talk about again because of how low your self esteem got. Life in the ICU has it's gross moments, but it also has ones that you will never forget. I remember, when my nurse in Neuro ICU told me, "OMG it's so nice to have a patient who's conscious, no hear me out, it's nice to have a patient talking to you." And later that week, that nurse did something I will never be able to forget or thank her enough for.<br />
<br />
To me it's turned into my normal. To not be able to write my name legibly anymore has become normal. Having a pain level of at least a four has become my normal. Going to the doctor once a month has become normal. Coloring in those pain sheets at the doctor the exact same way every time I go has become normal. I swore I would never let my worlds collide so that this would be the case, but it has. So why don't I talk about my diagnoses? Because it's my normal.<br />
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<br />Kimi Sorensenhttp://www.blogger.com/profile/14667958984106551484noreply@blogger.com2tag:blogger.com,1999:blog-836792994399567811.post-36315200170937430802016-11-30T08:50:00.001-08:002016-11-30T08:50:26.066-08:00The Beauty in Writing a Memoir<div align="center" class="MsoNormal" style="font-family: Calibri, sans-serif; font-size: 11pt; margin: 0in 0in 0.0001pt; text-align: center;">
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<b><span style="font-family: 'Arial Rounded MT Bold', sans-serif; font-size: 14pt;"> Honestly, like I said in my last post, people have been trying to get me to write a book for years, and I just thought why? You never think “Oh I’m being brave” when it’s about you. You just think, “My only choice is to go along with what they’re saying, because supposedly it’s going to make me feel better.” You learn to trust doctors, and then you sadly learn, how fast, that trust can turn to dust. Like a fire burning logs in your living room. The trust is there, but as the fire starts burning it destroys the logs, and slowly the logs turn to dust. That was what it was like to have a doctor who I thought was a God when I first met him, and the fire was burning inside me to have him be right; to fix me; and then the first and second time he was right, and then the fire slowly began to burn the insides of me, and it kept burning.<o:p></o:p></span></b></div>
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<b><span style="font-family: 'Arial Rounded MT Bold', sans-serif; font-size: 14pt;"> But the point I was getting at what is the beauty in writing a memoir? In my opinion the beauty in writing a memoir about something as personal as I did was the things I learned about myself in the process. I thought I had explored everything that came with the past 13 years. All the feelings, all the sadness, all the anger, all the happiness, I thought I had felt it all. And I did. To a point. But it wasn’t until I started my memoir that I realized I still had so much more left to explore. I didn’t realize that there was so much that I still didn’t know. And I didn’t know some of the feelings that I would feel going back and reliving all of this again. Was I taking a risk? Maybe, but it’s like jumping into a pool of sharks to save your life. You have to do it to save your life, but you don’t know what you’re in for after you jump. Well I did what Robin told me to do, I jumped. I wasn’t scared, I just said, “Whatever I find out, I probably was going to find out at some point.” <o:p></o:p></span></b></div>
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<b><span style="font-family: 'Arial Rounded MT Bold', sans-serif; font-size: 14pt;"> I never knew I was capable of doing something this great. That’s why this took me so long to do. People have been telling me for years to write a memoir, and I always said, “Oh yeah that would be cool,” but never in a serious way, I just sort of childishly thought, Oh yeah if the words just flow out of me one day, I’ll just write them down and it will all be perfect.” I never knew writing a book would be this hard. I had naively thought, “Oh since I know what I’m writing about this should be easy.” Boy was I wrong. This has turned into the hardest thing I’ve probably ever done. But it has definitely been the most healing. I never knew how many wounds I still had from this entire experience. I just said, before I started this, I thought I had felt everything I was going to feel, cried about everything I was going to cry about, and was mad about everything I was going to be mad about. But I wasn’t.<o:p></o:p></span></b></div>
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<b><span style="font-family: 'Arial Rounded MT Bold', sans-serif; font-size: 14pt;"> I never realized how much writing this book was going to cause me to grow up. I never realized how much writing this book was going to force me to forgive people. They say, you can forgive but you can never forget. And I think that’s true. IT’s sort of final in a way, like you’re saying “you did this and I’m forgiving you.” But at the same time, you’re saying, “yes I forgive you, but I will never forget what you did to me.” It’s like falling down and scraping your knee. The scar that it leaves, you can never forget. You may be upset, that heals, and you get over it. The wound may heal but the scar that it leaves, never lets you forget.<o:p></o:p></span></b></div>
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<b><span style="font-family: 'Arial Rounded MT Bold', sans-serif; font-size: 14pt;"> So to close out this post, let me just say, I never thought of myself as a fantastic writer. I liked to write on my own time, just to be creative I guess, but I never thought, that I would write a book or so anything this extravagant. But now that I’m “done” with my part of the book I can’t wait to send it off to my friend who is going to edit it for me, so I can see what another person thinks! And a look to the future, I hope to see all of you in line to get a copy of Kimi’s book! <3<o:p></o:p></span></b></div>
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Kimi Sorensenhttp://www.blogger.com/profile/14667958984106551484noreply@blogger.com0tag:blogger.com,1999:blog-836792994399567811.post-82729186934232485442016-11-06T09:23:00.000-08:002016-11-06T09:23:31.692-08:00Embarking on New Territory: But as My Book Says, It's BeautifulAs many of you know, I've finally taken my friends' advice and done something productive with it. I am attempting to write a book. I thought about this long and hard before I started. Am I emotionally ready? Is this going to make me feel awful reliving all of this again. And on and on and on with question after question after question. And you know what? I answered a total of zero of them. I'm doing what I first learned from my dear dear friend Robin 10 years ago, and that was to just jump in. Sometimes you never know until you do and it could end up being the best thing you've ever done.<br />
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I went back and read all of my mom's copious notes on when I was the sickest, and I will admit I stopped many times. I said, "Maybe you're not ready to do this." But then I heard Robin's voice in my ear; her crackly, high, ever so sweet voice. Telling me to go for it, that even though she wasn't with me physically she was with me in my heart, and she would help me through it. And I started writing and I wrote and I wrote and I wrote. And suddenly two months later I was on page 160. I read it all over again, and thought to myself, how do I remember all of this in such detail? I remember what my doctor's nurse said to me word for word after my first shunt tap, I remember who my very first nurse was at U of C, I know who came to my graduation party at U of C. I remembered everything. And when I felt like I had the shell of the book done, I just sat there literally in awe, of what I had just done. What I had remembered, when I had tried for the past ten years to block it out in any way I possibly could.<br />
<br />
As I was writing this, when I got about 20 pages into it, I stopped and thought to myself, how can this be a book? All I'm writing is tragedy after tragedy after tragedy. This doesn't even read like a book. How can I do this? But something told me to just keep going, to not worry about it right now, just to keep writing. I was finally happy that my work got rid of my Youtube privileges (You know all for "Professional reasons") lol. Because I was working on this all day rather than watching pointless videos. I thought to myself a lot while writing this book. Are people going to be able to relate to what I've been through? Are people ever going to "get it". And then suddenly I realized it doesn't matter; that they might not understand it, but that's OK. If they have empathy in their hearts they can just read it and say Wow that was a great book. Or not lol.<br />
<br />
Being sick has taught me so much more than I could have ever learned on my own. It has allowed me to see things with a different set of eyes. A more compassionate, empathetic set of eyes. And even though I'm in pain every second of every day, I can say now, that this really has turned into something beautiful. I've made friends I never thought I would have made, done things I never would have done. And I have being "sick" to thank for every single thing I've done. Every feeling I've felt for the past 12 years. I don't know how my life would have gone if I hadn't gotten sick. But I can definitely say with no doubt say it's been the scariest, darkest most beautiful walk I've ever been on.Kimi Sorensenhttp://www.blogger.com/profile/14667958984106551484noreply@blogger.com0tag:blogger.com,1999:blog-836792994399567811.post-64179167944385101892016-09-01T06:57:00.001-07:002016-09-01T19:30:57.430-07:00THIS is Why I Do Peer Wise<div style="margin-bottom: .0001pt; margin: 0in; text-indent: .5in;">
<span style="font-size: 13.5pt;">I just thought tonight was going to be
like every other Wednesday night; Hump Day, the seemingly longest day of the
week. Little did I know it would be the best night, in my entire life so far.
Tonight I got to witness the TRUE reason I do PeerWise; that lightbulb moment.
Peer Wise is a program run by Lurie Children's Hospital. It's where patients
and their parents, are "mentor volunteers" for kids with either the
same illness as they have, or an illness that's similar. And I knew it was
going to be rewarding, but I wasn't sure how. I had honestly spent the past 2
months mostly walking the halls, because I was too shy to just burst into
someone's room and tell them I was a PeerWise volunteer. Even kids with the
same diagnosis. It was just very intimidating. I thought of the way I was when
I was a patient, and I thought to myself, "honestly, whenever a volunteer
came to your room, you basically said thanks but no thanks. But I wanted to
make a difference for these kids. The kind of difference that I didn't have. So
today, I got to Lurie at about 5:30. My coordinator Amy(all names changed for
privacy reasons) told me to call her after I got there just to check in, make
sure I got my census, and everything. And I called her and she asked me if I
could come to room 18-107. She was doing a PeerWise Training session, and
wanted me to answer any questions they had.<o:p></o:p></span></div>
<div style="margin-bottom: .0001pt; margin: 0in;">
<br /></div>
<div style="margin-bottom: .0001pt; margin: 0in; text-indent: .5in;">
<span style="font-size: 13.5pt;"> After
visiting a little buddy I’ve made on the neurosurgery floor, I went into a baby’s
room. She was very young. Maybe 8 weeks old? And so obviously I was going to
talk to her parents. I walked into the room and typically as you are an unknown
person walking into a child’s room, (it doesn’t really matter that you have the
vest on, people don’t really notice it I’ve found haha) I told her parents, “My
name is Kimi, and I’m a volunteer at Lurie, I actually do a special kind of
volunteering called PeerWise. And I’m here because I have your daughter’s same
diagnosis.” Both of their eyes got really wide at the same time. It actually
sort of freaked me out at first. The mom gasped, she told me how her daughter
was diagnosed; that she had gotten meningitis, I said so did I. She said that
she had gotten her first shunt now when she was 2 months old, I said so did I. And
then the mom’s eyes got really watery, and I felt really bad, I started thinking,
“OMG is this too much for them? Are they overloaded with like 20000 things
right now? Maybe I should come back later?” Then all my thoughts flew out the
window when she said, “Um I’m sorry if this sounds weird, but can I give you a
hug? We’ve been waiting for a person like you to come in here. We were so
scared, we had never heard of hydrocephalus before, and we felt like we were
all alone; you can talk to the dr’s and nurses about it but they just tell you
all of the physical stuff about it, never the emotional baggage. And then they
asked me like 1000 questions. One of which is how are you doing now? I said I’m
doing great, but the first thing you need to realize with hydrocephalus kids,
is hydrocephalus is very much a snowflake illness, meaning every child with it
is different. I could tell you everything I’ve been through in my entire life
which I”ll spare you because it’s a lot, but your daughter may not go through
any of it. And then they told me, “The doctors said her shunt only has an
average lifespan of 2 years. How long did yours last?” I told them I had gotten
a lot of revisions in the past 12 years, but my first shunt that I received
when I got to America lasted me 14 years. Then they started crying again.
Another question that the dad had was were you in main stream school? And I told
him I went to Catholic grade school, was in the National Junior Honors Society,
went to College Prep High School, got 2<sup>nd</sup>, 1<sup>st</sup> and Loyola
Scholar honors all the way through, and then went to a university and received
a Bachelor’s degree. Another question
that they really wanted to know the answer to was how was my childhood? I told
them my childhood was absolutely wonderful! I never thought about the fact that
I was sick, I never really noticed that I was different from anyone else, I
almost never noticed the fact that I had a bump on my head. I was just a
typical kid, which I was unbelievably thankful for. <o:p></o:p></span></div>
<div style="margin-bottom: .0001pt; margin: 0in; text-indent: .5in;">
<br /></div>
<div style="margin-bottom: .0001pt; margin: 0in; text-indent: .5in;">
<span style="font-size: 13.5pt;">At the end of our conversation the dad
said, “So you’re everything our daughter can be? And I said, “Yes sir I am.
Nothing will stand in her way but
herself. And never let her think differently. My parents never let me thing I
was any different than any of my peers. She may have to go about things
differently, but there are a thousand ways to get there, it doesn’t really
matter in the end does it?” At the end of our conversation, the mom asked me a
question; she said, “I don’t want to sound weird, but can I touch your shunt?”
And I’ll be honest, at first I thought, “Oh geez, I’ve never been asked that
before, but then, I was thinking, well I can’t feel it anyway, so whatever if
it makes her happy just let her touch it lol. And so I did, and then of course
she started crying, she put her hand over her mouth and said, “OMG this is what
our daughter has in her head?!” <o:p></o:p></span></div>
<div style="margin-bottom: .0001pt; margin: 0in; text-indent: .5in;">
<br /></div>
<br />
<div style="margin-bottom: .0001pt; margin: 0in; text-indent: .5in;">
<span style="font-size: 13.5pt;">I can’t believe after that happened to me
last night that I was thinking of not going. Now I know what my purpose is.
This is just as rewarding as nursing, and maybe even more, because you don’t
need to talk about all the percentages, and odds, all you need to do is be
there. And it doesn’t matter what you went through, or how bad it was. The fact
that you know on a personal level what they went through means the world to
them. And I’m so glad I didn’t cancel last night! I made friends that I will
keep for a lifetime! </span><o:p></o:p></div>
Kimi Sorensenhttp://www.blogger.com/profile/14667958984106551484noreply@blogger.com2tag:blogger.com,1999:blog-836792994399567811.post-53288521368518500172016-07-19T08:49:00.002-07:002016-07-19T12:29:36.623-07:00When Chronic Pain Left Me With Nothing.........Or Did It?Chronic pain is sneaky. Chronic pain is relentless. Chronic pain is unforgiving. Chronic pain is isolating. I could go on and on with an entire list of adjectives that let's face it aren't the greatest. But just like a coin, just like a fight between two friends. There are two sides to every story. Even one's chronic pain story. Yes chronic pain sometimes never goes away. Yes a lot of the time chronic pain feels absolutely awful, but in my experience and maybe the experience of others, these are the times, your eyes are opened to the life you had before. The life where you worried about nothing. And however depressing that may be, it lets you feel an appreciation for that life that you've never had before. Sometimes you beat it for that day, sometimes you're ok for the rest of the week, but sometimes you're not. Sometimes you just have to throw in the towel, and say, I can't do this anymore. Not today. And it's the most vulnerable, courageous thing you could have ever done. Honestly, when I was told to start a blog about my health, after every single article I wrote, I felt like saying, well that was fun, I don't have anything else to write about. But chronic pain is a journey. I will always have something to write about.<br />
<br />
Living a life with chronic pain is a roller coaster; a complete and utter unpredictable, broken, dysfunctional, crazy roller coaster. Sometimes it feels like you're a ringmaster in a circus, trying to keep all of your plates spinning before they fall on the floor breaking into thousands of pieces. Sometimes your pain stays at a 4 all day, sometimes it stays at a 4 for 2 hours, maybe 3 if you're lucky, sometimes it jumps around all day, making it impossible to plan anything for that day, other than lie there. To some people, Oh the ideal day, doing nothing but lying there, but when lying there takes effort, just to be able to get into a position that you're not writhing in pain in? Yeah that takes skill. Sometimes all you can do while you're lying there is think of all the things you've lost. All the things you could once do that now you cannot.<br />
<br />
I used to lie awake every night, so upset, thinking, "Chronic pain is this all you're going to do? Eat away at my life until I'm left with nothing?" You've already taken my career, my social life, what else is there for a young adult? I literally thought my life was crumbling before my eyes. And then suddenly one night, while I was lying there crying, it was like my eyes were opened. "You don't have to stop living Kimi, you just have to live differently", my mind told me. You don't have to equate living differently with living less, or living not to the caliber you used to. And that was all it took. I created new standards for myself. I made new goals. It appeared that it all happened as easily as blinking, and deciding, but little did people know. This took a long time, because although I realized I had to create a new skill set for myself, I was very set in my ways. I didn't want to create something new. But I realized I had to if I ever wanted to be able to accomplish things successfully again. Don't get me wrong though, I would do anything to end the pain I go through on a daily basis, all the pills I need to take because of it. But what I will NOT give up is the woman I have become because of chronic pain. Perfection doesn't come from being perfect. Perfection is your own definition.<br />
<br />
When I realized I don't need to "get better" to be ok, it was like my world opened up. The floodgates were now open and the entire world was at my feet. This felt almost as good as beating the chronic pain; something I never thought I would be able to do. Little did I know, every day that I got up and went about my day, was beating it right there. So thank you chronic pain. Thank you for showing me that my life isn't perfect, but that's what makes it mine. Thank you for showing me that beautiful things can grow from the brokenness of someone's soul. And what I want to thank you for the MOST, is thank you for showing ME, that I could do it! <3 br=""></3><br />
<img height="180" src="https://quotefancy.com/media/wallpaper/3840x2160/30569-Anonymous-Quote-Everybody-wants-happiness-nobody-wants-pain-but.jpg" width="320" />Kimi Sorensenhttp://www.blogger.com/profile/14667958984106551484noreply@blogger.com0tag:blogger.com,1999:blog-836792994399567811.post-56152087023679348502016-04-07T05:53:00.001-07:002022-03-31T13:55:24.309-07:00A Letter to Myself Exactly 10 Years Ago April 7, 2006<div align="center" class="MsoNormal" style="text-align: center;">
<div style="text-align: left;">
Dear 17
year old Kimi,</div>
<div style="margin-bottom: .0001pt; margin: 0in;">
<div style="text-align: left;">
Where are you? Certainly not where you remember being 24 hours ago. You’ve
switched rooms and yes you are correct, time has definitely passed. I know you
have tons of questions. So I will try and go over the gist of it all. You are
now in the Pediatric Cardiac ICU. And the first thing I want you to embrace is
the fact that you’re alive, because unfortunately, you’re not going to like the
rest of this explanation. I know last time you checked you were on Comer 5, in
terrible pain screaming. Why did you move, you ask? Because when your shunt
malfunctioned yesterday, that’s A. why you were screaming, talk about
painful your ICP was probably approaching 35(Normal is around 15 but you
unfortunately can only handle a maximum of 10 so 35 is waaaaay too high; and
for those of you reading just imagine overfilling a water balloon), and B. that
Dr. that you admired, had to make a split second decision, one that you, one
day, months down the road, will say ruined your life, but I will lead you to
the light again, don’t worry, but that decision he made didn’t come without
consequences.<span style="font-size: 13.5pt;"><o:p></o:p></span></div>
</div>
<div style="margin-bottom: .0001pt; margin: 0in; text-indent: 0.5in;">
<div style="text-align: left;">
The reason you can’t speak and can barely walk, is because
you suffered a stroke during the surgery. I know, I just saw our eyes get wide,
too. But you will be ok! You’re going to have some rough days ahead as I’m sure
you guessed. The worst of them coming in 5 days. No one could have ever
guessed, but your shunt that was just placed in your lower spinal column, (I
know you’re thinking an LP shunt what!? They couldn’t put one in your
head right now, it would have been waaay too dangerous) will malfunction, you
will get chemical meningitis from the hemorrhage, and your mental status will
go down, down, down in literally a matter of 30 seconds, and it will take your
mom practically grabbing the PCICU Dr.’s arm to come in and see you. But just
keep your eyes on that corner of your room where your TV is, that’s where I’ll
be. When Dr. Morgan(name changed for confidentiality in case she ever finds my
blog and wants revenge) finally does come in, she will turn white as a ghost,
grab your bed, and get you down to CT, faster than you could have ever imagined
considering its 4 floors away. I know this sounds bad, and
trust me, you will have the doctors on the edge of their seats for a long time,
but you remember what I told you? Nothing comes with no reward; it will take a
while to see it’s there, but once you realize it is, you will never let it go.<span style="font-size: 13.5pt;"><o:p></o:p></span></div>
</div>
<div style="margin-bottom: .0001pt; margin: 0in;">
<div style="text-align: left;">
When you finally come home, some three and a half weeks from now, you will be
tired. No that’s an understatement, you basically will turn into a bear in the
wintertime. You will sleep literally probably 14-16 hours a day. That’s because
your brain is searching for a way to escape the pain of recovery, not to
mention trying to heal itself and the rest of your body that was paralyzed. You
will become depressed. You won’t know it, but you will become so obsessed with
getting “back to normal” you forget who you are in the process. You will become
like a robot. Just waking up, going to therapy, coming home, sleeping, eating
dinner, and going back to bed. You will have some nights where you cry yourself
to sleep.<span style="font-size: 13.5pt;"><o:p></o:p></span></div>
<div style="text-align: left;">
You will spend the next year, in and out of the hospital; literally every
month. The words “Weren’t you just here” mean nothing to you because you’ve
heard them too much. You will give your IV poles names, race them down the
halls with other kids, and make best friends with “the girls” (nurses) on Comer
5 and 6, friendships you keep even today. You will become a mystery to some of the
brightest minds in the country. You will know what the voice in the elevator is
going to say before she says it, you will know that when you get to the 5<sup>th</sup><span class="apple-converted-space"> </span>floor you will see Eleanor the
elephant with the pink polka dotted bathing suit and the ice cream sundae
umbrella. I know when you go to the 6<sup>th</sup><span class="apple-converted-space"> </span>floor you will see the Rube Goldberg
machine. And you will always always always remember to say goodbye to remoc in the lobby! You will know every inch of that hospital. You will even get the
nurses to turn off your “Hugs Tag” for 3 hours so your mom to take you on a
tour of U of C campuses. So it won’t be all bad.</div>
</div>
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But the most important things you will gain through all of this, are gratitude
and empathy. You will know truly what it means to say thank you because you
have to say it to the man who has saved your life more than once, but also you
will learn the power of forgiveness, because your faith in the man with whom
you entrusted your life, will diminish before your very eyes as you learn more
about that procedure he “just had to do” and how this “procedure” almost took
your life, while at the same time saved it. You will question everything you
stand for and believe in. I’m not lying this will bring you to your knees. But
don’t worry, everyone, even the bravest of people asks why once in their life.
And if they say they don’t they’re lying trust me. I know it sounds like
I’m giving you nothing but bad news, but remember, tough roads almost always
lead to beautiful destinations. All you need is a little patience.</div>
<div style="margin-bottom: .0001pt; margin: 0in;">
<o:p></o:p></div>
<o:p></o:p>
<br />
<div style="margin: 0in 0in 0.0001pt; text-align: left;">
When you go home, you will wonder, “What’s the point,” A LOT, while your
parents try to do therapeutic things with you before therapy starts. You
will wonder where’s the old me, but you will eventually tolerate the new me,
and eventually embrace it, I promise. You will feel like giving up. Until you
meet your angel. Her name is Robin and she is the best therapy anyone could
ever give you. She will be your saving grace. The angel you didn’t even know
you were begging God for. She will be the one to show you how lucky you are,
despite you devastating circumstances. She will be the one to make you look
around at your life and see how fortunate you have been, through her own
experiences. And she thought the exact same way about you. In fact she told you
one day she thought you were the angel that God sent to her at just the time
when she felt like her entire life was crumbling in around her.</div>
<div style="margin: 0in 0in 0.0001pt; text-align: left;">
As the days go past, it becomes clear to you that none of this is going to
change. You are forever going to have chronic pain, because of the surgeries
that have passed, and the surgeries yet to come. And yes you will have more
surprises. But the real beauty comes into the woman you will grow to be. You
will grow to be even more forgiving than you know, and more knowledgeable than
the residents working on you. What they say to you will have you rolling your
eyes. Especially when one of them says, “Oh I don’t know what they’re doing on
you today, I’m just watching, and maybe helping a little.” But you will enjoy
helping theses residents through their residency, and you will enjoy seeing the
lowly little residents, standing in back of the Big Bad senior resident in the morning,
grow into that role themselves. And you know exactly who I am talking about.
It’s the guy you continuously tell your mom you “don’t like.” It’s been an
amazing privilege to be his crash dummy and you know I’m right.</div>
<div style="margin: 0in 0in 0.0001pt; text-align: left;">
Kimi, I know like 10 years seems like forever, but in the same way feels like
it happened yesterday. I know better than anyone how your dreams for your
career were crushed. I know that you feel defeated each time you go “in” and
hear you have to have yet another surgery. I know it all. Just keep going.
You’re doing everything right. <3<o:p></o:p></div>
<o:p></o:p>
<br />
<div style="margin: 0in 0in 0.0001pt; text-align: left;">
<br /></div>
<div style="margin: 0in 0in 0.0001pt; text-align: left;">
<3
always,<o:p></o:p></div>
<o:p></o:p>
<br />
<div style="margin: 0in 0in 0.0001pt; text-align: left;">
<br /></div>
<div style="margin: 0in 0in 0.0001pt; text-align: left;">
Your
guardian angel<o:p></o:p></div>
<div class="MsoNormal" style="text-align: left;">
<br /></div>
</div>
</div>
Kimi Sorensenhttp://www.blogger.com/profile/14667958984106551484noreply@blogger.com4United States38.272688535980969 -87.89062512.750654035980968 -129.199219 63.794723035980965 -46.582031tag:blogger.com,1999:blog-836792994399567811.post-76607770931012575712016-03-24T09:51:00.001-07:002016-04-03T19:23:32.266-07:00The One Part of Hydrocephalus the Doctors Could Never Prepare Me ForWhen you receive a diagnosis of any kind, it is automatically followed up with a ton of facts. One of which is DON'T LOOK THIS UP ON THE INTERNET. I never understood this until I did just that breaking Rule #1. When you look up hydrocephalus on the internet, it's horrifying. You read that the prognosis is difficult to predict, there is a good chance of cognitive/physical impairment,oh yeah and shunts only have an average lifetime of 2 years. It's absolutely terrifying if you're a new parent, struggling with your child's diagnosis. It was beyond scary for my parents, who were thrown into this world, after 14 years with no problems. They were thrown problem after problem, having to "solve" every one, and keep my interest at heart as well.<br />
<div>
<br /></div>
<div>
Every child with hydrocephalus is different. I think that's almost a chorus sentence for every illness. In my world, that basically means we can't tell you anything because your kid is going to be different than every other kid. I like to compare it to that of a snowflake. That's why a lot of illnesses are called the snowflake illness. I never thought I was any different than anyone else. Why would I? I had been treated the same way my entire life so I knew no different. </div>
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<br /></div>
<div>
When I went to the neurosurgeons' office for the first time in 14 years, when I was 15, I was scared, but I didn't really know what I was scared about. It was almost like being excited for something that your mom tells you is going to happen, but she won't tell you what that something is. So you're excited but you have no idea what for. That was what it was, I was scared for something that could happen, or could not happen. But even after that appointment, and the next appointment, and the next appointment, my anticipation was building like bricklayers building a wall, but I still had no idea what I was afraid of. Was it the anticipation of surgery? Was it the unknown? I had absolutely no idea. THEN when they told me I needed surgery, I still literally had a stone face. I wasn't happy, or sad. I didn't know what I was. Because I can clearly remember, thinking to myself, "Kimi---Kimi??? Did you just hear what he just said!? Why aren't you freaking out!?" Which now looking back, having a completely dead pan face right after someone tells you something that was sort of expected but really unexpected, should scream holy Sh!+ I'm freaked out, but for some reason it didn't. </div>
<div>
<br /></div>
<div>
After that surgery and recovery, I got back to a semi normal life for the next year, then almost a year to the day later, I started on my looooooong joourney of problems which actually has yet to end. I had entered into the great abyss of unknown chronic illness. It's like diving into a freezing cold pool head first, oh yeah and you had forgotten to hold your breath, and so you have a nose full of water and you're coughing up a storm, all with your eyes shut. Was I scared? Maybe? Did I realize it? Of course not! But then I sort of just went along with it. What else was I supposed to do right? I didn't exactly have another option. But as days turned into weeks in the hospital, and explanations got shorter and shorter, I started to realize that I was becoming part of a very small subset of people with hydrocephalus. The subset that is so complicated and each with something different that not even the best doctor in the entire universe knows how to treat them. </div>
<div>
<br /></div>
<div>
Suddenly, hospitals, sleeping through blood draws, and waiting 4 hours to see the doctor become the norm. But it was during the most unpredictable scary part of my life that I would learn something beautiful. Sadly it took me almost losing my life to learn how to LIVE. But I'm so happy I did. I learned how to REALLY experience joy, I learned to recognize and appreciate beauty. I gained empathy, I learned to really enjoy life and everything in it. If there was one thing that I wish I knew pre-illness was how many things are taken for granted every day by each and every one of us. Unknowingly. We just know no different and that's really a shame. What it means if the sun is shining? What it means if it's raining. What it means if we're in a good mood and why!? Thanking God when our pain is at a 4 one day instead of a 6, not complaining that it's not at a 2. No matter how menial or boring life may seem, just embrace everything you do in this life. Because you never know when something is going to happen to take that ability away from you like it did with me. So now I challenge each and every one of you to go out there and live life like you never have before. Really LIVE. I guarantee it will amaze you. </div>
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Kimi Sorensenhttp://www.blogger.com/profile/14667958984106551484noreply@blogger.com1tag:blogger.com,1999:blog-836792994399567811.post-89499467922074495072016-03-07T08:06:00.001-08:002016-03-07T08:40:16.807-08:00A Letter to Myself 12 Years Ago <div class="MsoNormal">
<span style="font-size: 14.0pt; line-height: 107%;">Dear 15 year
old Kimi,<o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-size: 14.0pt; line-height: 107%;"> Today you entered into a world I had hoped you never would. I had hoped you would just go on blindly sailing through
life, never thinking about the illness that almost took your life, 14 years ago
when you were still in Korea. Unfortunately, every time you think it’s over, it’s
just beginning. You will be forced to face things, I never thought you would.
You will go through surgery after surgery never getting answers. I know this
sounds like a nightmare, and trust me it will be, but there’s a light at the
end of the tunnel for everyone including you! You will turn into the most
compassionate, forgiving person ever. <o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-size: 14.0pt; line-height: 107%;"> You will have “treatments” you never
dreamed of. Complications you never knew could happen. But you will in the
process of this entire nightmare, gain the most beautiful soul you could have
ever imagined. If you don’t believe me, I will give you a list of the wonderful
things you will gain through this nightmare.<o:p></o:p></span></div>
<div class="MsoListParagraphCxSpFirst" style="margin-left: 1.0in; mso-add-space: auto; mso-list: l0 level1 lfo1; text-indent: -.25in;">
<!--[if !supportLists]--><span style="font-family: "symbol"; font-size: 14.0pt; line-height: 107%;">·<span style="font-family: "times new roman"; font-size: 7pt; font-stretch: normal; line-height: normal;">
</span></span><!--[endif]--><span style="font-size: 14.0pt; line-height: 107%;">Understanding-You
will have many failed surgeries. That I will not lie about. But you will begin
to understand that all these surgeries were helping your doctor to figure out
what is wrong with you, and you will unfortunately learn that because of the
nature of your problem, surgery is the only option, and you will do so with
unfailing grace.<o:p></o:p></span></div>
<div class="MsoListParagraphCxSpMiddle" style="margin-left: 1.0in; mso-add-space: auto; mso-list: l0 level1 lfo1; text-indent: -.25in;">
<!--[if !supportLists]--><span style="font-family: "symbol"; font-size: 14.0pt; line-height: 107%;">·<span style="font-family: "times new roman"; font-size: 7pt; font-stretch: normal; line-height: normal;">
</span></span><!--[endif]--><span style="font-size: 14.0pt; line-height: 107%;">Your
doctor is explaining to you. Explaining, Explaining, and Explaining. Sometimes
you don’t even know what he is talking about. Sometimes you will just want to
tune him out. But you will learn even though you’re shy, you need to be a
proactive part of your health care. So much so that you will buy books on neurosurgery,
and watch TV shows. And your doctor will make you write papers for him to
understand your medical care better. So better just to figure it out for
yourself. ;)<o:p></o:p></span></div>
<div class="MsoListParagraphCxSpLast" style="margin-left: 1.0in; mso-add-space: auto; mso-list: l0 level1 lfo1; text-indent: -.25in;">
<!--[if !supportLists]--><span style="font-family: "symbol"; font-size: 14.0pt; line-height: 107%;">·<span style="font-family: "times new roman"; font-size: 7pt; font-stretch: normal; line-height: normal;">
</span></span><!--[endif]--><span style="font-size: 14.0pt; line-height: 107%;">He’s
telling you all the odds, and you always seem to be on the losing end of it.
But somehow you find through that infinite grace I talked about, how to be
thankful for everything you have, even if you are on the wrong side of the
odds. And you will be on the wrong side more times than the right side. <o:p></o:p></span></div>
<div class="MsoNormal" style="margin-left: .5in;">
<span style="font-size: 14.0pt; line-height: 107%;">Today is a turning point. You have jumped in. You can’t go
back. You are now in the line of fire. You have two choices though the last two
choices you will ever make regarding your illness. You can either give up, and
take the easy way out, OR fight with all your heart. You can embrace this
unpredictable illness, and show it that it will never define who you are. And
you will find yourself in the process. You will be glad you were made the way
you were…<o:p></o:p></span></div>
<div class="MsoNormal" style="margin-left: .5in;">
<span style="font-size: 14.0pt; line-height: 107%;">Sincerely,<o:p></o:p></span></div>
<br />
<div class="MsoNormal" style="margin-left: .5in;">
<span style="font-size: 14.0pt; line-height: 107%;">Still fighting<o:p></o:p></span></div>
Kimi Sorensenhttp://www.blogger.com/profile/14667958984106551484noreply@blogger.com0tag:blogger.com,1999:blog-836792994399567811.post-14410186853485441852016-02-03T08:28:00.000-08:002016-02-03T14:46:03.901-08:00What's Worse, Having an Illness or Having An Invisible IllnessI never understood the term invisible illness, in fact I never really understood the term invisible. For as long as I can remember, I've only liked concrete things, or things you can visualize being in a physical form. I've had hydrocephalus my entire life. But I never admitted I had it, until I was 13. In fact, I still remember, when my older sister was in 8th grade, she was doing a family tree for science class and she had to put all the diseases/medical conditions that everyone had. She had asked me if she could put mine on there. I quickly said, "Um.. NO," and we sort of left it at that. Then when I did my tree two years later, I decided to put it on there. I don't know why, but I just did. Then when I was sharing my tree, my teacher commented that I had an illness under my name. But that I looked totally healthy, and I tried to explain my illness. Which looking back on it, I did a horrible job, because I didn't even really know the science behind the illness, or even why it created all the problems it created. But after that, my teacher said to me, "Wow, but you look so healthy, I can't believe you have what could turn into a fatal illness, it's amazing." At that point in my life, I took that as a compliment. But now, I don't know, I can see why he said what he said, but now I don't think I would take it as a compliment. There are so many negative connotations that come with having an invisible illness, I can't even seem to count them all.<br />
<br />
The term invisible illness has always been sort of an anomaly for me. An anomaly that I could never understand. How could it be invisible if to me it was supremely real? But as I got older, and realized that when I get up and "put my face on" in the bathroom, and pick out what I'm going to wear for the day, that is no different than picking out a Halloween costume. What's the point of Halloween? Being something we're not. What was I doing? Being something I'm not. A healthy person. A perfectly healthy person. You may get used to the physical pain. But there's one thing that your body will NEVER get used to. And that is the sheer terror, the lump in your throat that you can't seem to swallow, no matter how hard you try. That looming black cloud that seems to follow you wherever you go, of IS THIS GOING TO GET WORSE, and then what am I supposed to do about it. You're a veteran of just taking care of the status quo, but every time it gets worse, it feels like a totally new experience because no two health crises are exactly the same.<br />
<br />
What's the worst part of all of this you ask? It's when your parents and all your visitors leave your hospital room, and you're left to just soak in the seriousness of your situation. Where no one can help you anymore. You're just here. Listening to your IV drip drip drip. Watching your nurse, infuse benadryl into your IV and counting the tears that fall because of how much it burns, it feels like your veins are on fire and your hand is bright red to prove it. Just wishing that it would knock you out like oral benadryl does so you could not feel the terrible pain of it infusing. I've heard this before, countless times actually, "Aren't you used to it by now?" How can you become used to the ever present betrayal of the one thing that you can say and prove is YOURS? How can your own body that you took such good care of for 27,28,30 or 50 years, suddenly just decide without any input from anybody, to just break down into a thousand little pieces after all of your hard work? And most importantly, how can you, the owner of your own body, the keeper of the keys, the lion tamer, the captain of your own ship, say, "I can't control any of this." I have no control and can't do anything about this..... It's hard, but we do it.<br />
<br />
From one sick person to another I'll tell your a secret: It's OK! Hold on Little Fighter, Soon It Will Be Brighter!<br />
<br />Kimi Sorensenhttp://www.blogger.com/profile/14667958984106551484noreply@blogger.com3