Wednesday, April 26, 2017

I'm Not Invisible: My Illness Is.

            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.

            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.

            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.    

            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.

 

 

Friday, April 7, 2017

MY Account of what Happened 11 Years Ago Today April 7, 2006.


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.

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!!

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.

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.

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.  

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.

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.

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.

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.

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.

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.

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.

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.

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.”

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.”

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.

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!”

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…

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.

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,


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 life changing 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.  


Sunday, March 5, 2017

Why I Still Struggle to Talk About My Diagnoses

Thirteen 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.

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.

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?

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?

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.

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.

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.


Wednesday, November 30, 2016

The Beauty in Writing a Memoir


        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.
        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.” 
        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.
        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.
        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



Sunday, November 6, 2016

Embarking on New Territory: But as My Book Says, It's Beautiful

As 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.

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.

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.

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.

Thursday, September 1, 2016

THIS is Why I Do Peer Wise

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.

 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 2nd, 1st 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.

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?!” 


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! 

Tuesday, July 19, 2016

When 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.

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.

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.

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="">