Friday, April 7, 2023

17 years out. 17 years in

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)

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. 

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. 

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.

Monday, April 11, 2022

April 11, 2006

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. 

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. 

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. 

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. 

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. 

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. 

Thursday, April 7, 2022

If I Could Go Back and give myself a Roadmap for the next 16 years

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.

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)

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.

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.

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.

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.

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. 

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.


Tuesday, April 6, 2021

What My Stroke Forced Me to Do, and Why I’m not the Slightest Bit Sorry

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...…

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.

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 bicep curls, or shoulder squeezes, all I knew was what I was constantly being told. That 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 that way. Honestly I didn’t know 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).

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. 

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. 

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.

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. 

Tuesday, April 7, 2020

14 Things For 14 Years I Can’t Believe It

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. 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. 

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. 

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. 

14 Things I have Learned Through having a stroke at age 17 and being a chronically ill teen.

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.
2. Just because you feel like the old you is gone, doesn't mean you can't try to create a new you.
3. Life doesn't always go as planned and that’s OK! Sometimes it’s more than ok!!
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...
5. Forgiveness is more healing than you will EVER be able to comprehend, for both the giver and receiver.
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.
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.
8 .My ability to accept things that can go wrong, both openly and graciously, defies all human understanding (Or so I’m told...).
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.
10. I've become inspired to be something I didn't have. I want to be a light in someone's darkness.
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.
12. Creating a second "version" of yourself, isn't failure. It's creativity at it's finest.
13.DO NOT under ANY CIRCUMSTANCES USE WebMD. Just don't do it. You'll thank me later.
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.

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!

Friday, December 20, 2019

How Being Chronically Ill During the Holidays has Taught Me About the Real Meaning to Christmas

I'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.

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.

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!

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.

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.

Friday, June 7, 2019

To the Girl Who Was Just Diagnosed with A Chronic Illness I Say this: Life is Still Beautiful

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="">

Dear You,
                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.

                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.

                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.

                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.

                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.
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.

                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.

                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.