Bonus Round Patient Pages
Encouraging patient/doctor/caregiver communications


Sunday, June 20, 1999: I Heard Of A Group...


Dear Sparky,

Well, I needed to take a break from the Letters and the Internet for a bit. So I did. I graduated from high school and it was anticlimactic--I'm glad to be free and I'm glad that it's all over. The week before I graduated I received my "Freshman Letter" from my freshman english teacher... on the first day of school she had every student write a letter to themselves which would be delivered upon graduation. The letter itself is rather boring but the last sentence resonated in me--"I hope that my high school years were fullfilling." And they were. I certainly don't want to relive them but I'll always look back on them fondly.

That's not what I want to talk about though. Thursday night was the first ever IBD (Irritable Bowel Disease) group at my children's hospital. I'd always been a bit trepidatious about attending support groups--mainly because none existed for kids with my disease and I didn't want to sit around and listen to a bunch of adults be depressing. This group was different. Not many patients showed up but that was alright--I actually preferred it that way, more intimate. I was the oldest and also the only "long term" patient there.

All of the doctors from the GI (gastroenterology) clinic had shown up, along with the nurses and the hospital pharmacist. The pharmacist gave a lecture about the drugs and I often interupted the lecture with questions and/or comments. What really struck a chord was the discussion following the lecture. One of the girls was only ten years old and she had undergone an ileostomy (it was reconstructive and her whole colon was removed and the small intestine was re-routed with a pouch in the middle to replace the missing intestine). The little girl looked so healthy and her mother was so happy and kept exclaiming over and over that she was "cured" (which is true--the only cure is removal of the diseased organ) and my heart lept for the girl. When I was her age I had to fight with the prospect of surgery and at that time reconstructive surgery was out of the question, I would have had to wear a pouch on my abdomen had I undergone the surgery. The fact that this little girl was given such a great chance at life, one that I never got, made me feel so happy and it gave me hope.

I agonized over the decision to forego surgery for years... I knew it was the only way I'd ever be really *healthy* but in the end I didn't want to go through with it. I had hope, even at that young age, that if I could find the courage to fight this disease it would not only make me stronger emotionally but that eventually perhaps a non-surgical cure would be discovered. I knew that the longer I stuck with this... the better chance I had at someday living a full, healthy life. And looking at that little girl and listening to her story made me feel that I hadn't spent the last ten years fighting for nothing.

That's only one piece of the story though, but I wanted to start off with the happy part before I depressed the hell out of myself... At one point in group a mother started talking about how hard it was on her daughter and is there anything at all they (they being the parents) could do for her to make it easier? All of the parents started talking to them and giving them advice and I sat in my chair, quietly gripping the sides of it wanting to disappear. Each parent sounded on the verge of tears as they recounted horrifying tales of pain and their inability to help... I wanted so badly to cry. I bit back the tears and finally the parents calmed down and the discussion moved forward.

Later in the evening I was talking to my Mom about group and I told her that at one point I wanted to cry. She didn't quite understand me because I failed to elaborate and she started talking about the sick kids and how hard it must be for me to see them and I stopped her with a look. She asked me why I felt like crying and I said simply "I wanted to cry for all of us". Again, she didn't quite know what I meant and I think she was talking because she felt like crying as well but didn't want to tell me... She told me about how we often make light of the disease and act like it's no big deal when in fact it's the opposite.

I didn't explain to her what I meant, I just nodded and picked up my book and pretended to read. But I thought about what she said... I wanted to tell her that I wanted to cry for every single person in that room--for the doctors who fight daily against stupefying odds to try to find a cure, for the caretakers who can do nothing more than hold us when we are in pain and pray that it gets easier and for the other sick kids because we know firsthand just how cruel life can be.

But I didn't want to cry for me... When I left group I felt confident with my abilities to handle this disease. I looked at those little kids and I listened to them talk and I helped them with my own stories of pain and triumph and I knew that, for whatever reason, I was strong. So were these kids. No, it's not easy living and growing up with a chronic disease but it's not impossible either and we were living proof that what doesn't kill you makes you stronger.

So that was group. I'll certainly be returning for the subsequent meetings--a few of the parents hadn't brought their kids because they didn't know what to expect and they asked me specifically if I was going to be returning because they wanted their kids to meet me. I told them of course I was and that I would be glad to meet and talk to their children.

I was talking to Karen the other day and she helped me realize that there isn't much info. on the web regarding this disease and coping with it. If it's alright with you Sparky I'd like to make a section detailing my specific battle with Ulcerative Colitis--providing information about the disease as well. I've always been adamantly against making anything that said so blatantly "Hi, I'm a Sick Kid" but for some reason group helped me truly realize that this disease is a major part of who I am, and that there was nothing wrong with that.

This disease doesn't mean that I'm weak and it doesn't mean I need to be a receptacle for pity--but I'm finally okay with people pitying me if that's what they want because *I* don't pity myself. I don't have to hide behind a mask of positivity to assert my courage... I don't have make light of this disease to hide my weakness... I know that by just being here to type these words that I am courageous.

And that, in spite of everything, I'm happy...

Love You Lots,

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