Saturday, February 24, 2018

Why I wish I was Confirmed Later

In 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. 

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.

 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.

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. 

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). 

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. 

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.

Tuesday, November 14, 2017

How the book Wonder Taught Me to Embrace my Scars

I was lying in a hospital bed 3 years ago, alone, the 25th 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 in one week?" 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."

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.

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.

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 Friday night, 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.

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. 

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.