This is that story I was telling you about that my friend Sami wrote. She gave me permission to share it. She definatly has a way with words, and she's such an amazing person. I related with so much of what she wrote here, and it's so true. So this is what Sami wrote: hope you enjoy!
For me, the hardest part about having a chronic illness has not been the days at the hospital. Not the blood draws or the needles or the blood - they've never scared me. Even the things that do scare me - the discussions about the future, the last moments before the anesthesia kicks in - they don't top the list either. The hardest part is having to be Just Normal.
A lot of you know I've spent the last eight months of life living at a college twenty-two hours away from home. I'm lucky. I can do this because I'm in remission. I could lose this at any point. A few of my friends here know what I have, who I really am. But to most, I'm Just Normal.
I always wanted to be Just Normal. I really did. The night before I was admitted to the hospital for my first set of scopes and diagnosed with Inflammatory Bowel Disease, I thought I had cancer. My parents did too, but none of us admitted it. When I woke up in recovery after my scopes the next day and found out I had IBD, I was relieved. I wasn't at risk of dying. I thought that meant I could be Just Normal.
I didn't attend Camp Oasis because that would be accepting the fact that I was different. I waited three years to join Starbright World because to become a part of this community would mean "giving in" to my illness too. I had to hit rock bottom and realize I wasn't becoming the strong, confident leader of my dreams before I could change. In late 2010, that happened. In early 2011, I did something about it. I came here and met some of the most wonderful people I've ever met who've given me confidence and a change to use my experiences as motivation to do good. I've never been happier since I've made the decision to accept the fact that I am different, that I will always have a monster inside me that wants to destroy me. And even though I will need doctors and medications to control that monster for the rest of my life, I will do everything I can to not let that monster bring me down. Even when it lands me in a hospital bed, I will not become a whiner or pity myself. I have plenty of flaws, but my disease is not one of them.
College has been one of the most rewarding experiences of my life. But sometimes I feel like I'm living a kind of Hannah Montana double life. I have the group of friends I always wanted. I have the remission I wanted. I have the support I wanted, the support that's enabling me to do some of the incredible things I've spent the last four years dreaming up. In many ways and to many people, I am Just Normal. And then there are the few who know the truth: I am not normal. That beneath the Just Normal exterior, there is a monster that could steal away my remission at any time. A part of me that knows words - that has to know words - like Mean Corpuscular Volume and Fistula and Ileocecal Junction. There are so many days I walk around campus as my happy-go-lucky self - and I realize no one around me knows who Spencer is, or would understand what it's like to watch my friends suffer. I would give away days, even weeks and months, of my remission to my friends just so I wouldn't have to watch them go through the constant pain they go through. Why am I the only person I know in remission? Why am I the lucky one? I should be happy, I know. But it makes me sad. It makes me feel guilty. My stories are about college, while yours are about a mishap with your feeding tube, and we have the same disease. There's something not right here. Sometimes, I feel really alone - and that is why I need SBW the most when I am in remission, to remind me that I am not alone.
The point is I've learned to segregate my life into two halves - a la Hannah Montana. Normal college kid who goes to parties and watches Netflix and complains about Calculus test. And sick kid who has to find friends to drive her to her blood tests at the local hospital and who takes her iPhone to the bathroom just in case there's blood in the bowl. They come together rarely - when I'm trying to raise awareness (a few of you know about super huge awesome project I'm working on right now!) or when someone is right there willing to listen who is really interested and really cares about me. But usually, I'm Collegiate Just Normal Sami and, separately, The-Girl-With-The-IBD that I was in high school.
So today my friend Lizzie freaks out because my friend Lindsey's boyfriend called her a naughty word. And other ridiculous girl drama ensues. Now, I'e had my fair share of girl drama. I can't say I always keep out of it - sometimes it's even my fault. But today was not a day I could cope with it. While all this drama was breaking out with me in the middle, I found out that my friend's Lupus spread to her kidneys. She'll have to spend this summer on chemo. I thought about another friend of mine who's struggling to find any answers, and can barely make it through the day. I Skyped with another friend who's not doing so hot at the moment either. On one hand, I don't believe it would be right for me to expect my college friends to see life from my perspective. I've experienced things I hope they never experience. They are Just Normal, at least from the chronic illness perspective, so it would be wrong for me to become angry at them because they don't understand how petty their problems are in the scheme of things. I freak about unimportant things too. We all do, even when we're in the worst situations. But sometimes I wish my Just Normal friends - and the Just Normal side of myself - could take the time sometimes to consider how thankful we should be for everything we've got going for us in our lives. I know that some of my friends with chronic illnesses won't have the same opportunities I've had and am having and will have - and that hurts me so badly inside. I can't donate away my remission, so all I can do is appreciate it the very best I can. It would be wrong of me to expect my Just Normal friends - and even the Just Normal side of me - to think "I have two working kidneys, so none of my other problems really matter!" every time we're upset about something silly. But sometimes I wish I could give them a piece of my mind and tell them what it means to REALLY struggle. To be fighting not over who said what, but to LIVE.
All in all, it's been a rough day, and I'm waiting for all the conflict to blow through. I'm very lucky to have one really wonderful friend here who comes as close as possible to understanding. I'm going to go eat chocolate now.