Bonus Round Patient Pages
Encouraging patient/doctor/caregiver communications


September 29, 1999: Remembering.


Dear Sparky,

I have three hospital bands hooked through a keychain on my backpack. I take my trusty black Jan-Sport with me everywhere and yet people never comment on the hospital bands, I doubt they really even see them.

Until yesterday.

Yesterday a boy in my english class took notice of the bands and started asking me about them--I talked a bit about where I got them and he asked how old they were. The first thought in my mind was that they were five or maybe even six years old, I told the boy this. Then I remembered that the bands list the date of admittance, or at least the year, so I looked on the bands. The first band I encountered was a year old, the next three years old and as I fumbled to look at the date on the third band my eyes finally focused and I saw it clearly.


I felt like crying. It's one thing to say it's been ten years, it's another thing entirely to see it in black and white on a hospital band and know it's been ten years. That little moment of time, narrowed down into four numbers, set my mind spinning.

One of my most frightening thoughts is that I won't remember what it's like to not be sick. I'm only 18 years old and yet, over half of my life has been spent battling this disease. As I get older, the years before this disease was discovered, the years I was healthy, take on a more dream-like quality and shatter into photographic fragments. Sometimes I lie awake at night and think to myself, "What is the earliest moment you can remember?" And as I get older, that earliest moment gets pushed back months and even years... and I know it's just a matter of time until my earliest memory is of surgery and hospitals and I don't even remember what life was like before all of that.

Then I wondered to myself why I keep these hospital bands and even go so far as to display them. Is my health really that important to me? Do I just want the other kids to know that I'm different and not like them? That thought pounded in and out of my head as I fingered the band--What was my motive for putting them there?

The obvious thought that comes to mind is that they represent my history--my past, present and future all rolled up into one--and that there's no reason for me to distance myself from that. My other possible motive was that I did want people to know that I was sick or at least spent time being sick, that way when it finally came time to tell people it wouldn't be a surprise.

And then I realized--that's who I am. For better or for worse this disease has shaped my life and turned me into the young woman I am today, and I can't run from that and I can't hide from that fact. So much of who I am has been built around my experiences in hospitals, sick beds and with pain. Sometimes I try to explain it to the older people I meet, the people who got sick past twenty, and they don't understand it. They can't understand it because who they are, their thoughts, hopes, dreams, beliefs and feelings had all been shaped before they got their disease. They went into the experience knowing who they were and I didn't. Kids like me don't get that luxury--we go into the experience knowing nothing about life and we learn about it from the disease. For better or for worse this disease shapes us and changes us from the people we could've been had we not been sick.

That sounds depressing but it's not, 'cause, as I've said--I wouldn't change it for the world. I like who I am, I like the person this disease has turned me into and I wouldn't want to change her for anything.

Love you lots,


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