Saturday, February 24, 2018
Tuesday, November 14, 2017
Wednesday, April 26, 2017
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
Sunday, March 5, 2017
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
Sunday, November 6, 2016
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.