Bonus Round Patient Pages
Encouraging patient/doctor/caregiver communications


February 15, 1999: Thinking Too Much

dear sparky,

i was thumbing through your site and i realized that i haven't written a letter in six days... so i guess i started to feel a little guilty and here i am.

i actually have umpteen letters in draft form in my inbox (i address the letters to myself and then send them... it's weird but it works) but none of them feel "real" enough--and i can't seem to tap into what i'm really feeling right now.

so i've been putting off writing this next letter.

it's mostly because i'm sick. no big surprise there... but i just feel miserable and i'm incredibly tired of feeling miserable. i see how easy is it to give up when you've almost won. you know--the guy who collapses on the ground and can't finish the race even though he only has three more steps to go?

even though i'm so close to the end of this sick period--i've still got the weight of months and years of sickness on me... and it's hard to not glance behind every now and then and see all of that. in fact--it's easier to see where i've been than where i'm going.

sometimes i get tired of seeing the past and worrying about the future--i was reading through your old diaries and i saw an entry in which you talked about "now" and "not now" and i thought about what those words meant to me as a sick kid. there was only "now"... but i'm getting older and digging into everything that's happening to me and trying to be responsible about this disease. "now" is becoming so much harder to find.

i was talking to my mom last night trying to work everything out and figure out why i'm so sick right now--if it's just going off the steroids and my body reacting intensely to that or if going off the steroids is triggering my disease and i'm having a relapse. mom was sitting there quietly listening to me worry about which it is and she finally stopped me and said "it was so much easier when you were a kid--you would ask what was wrong and i'd just tell you that you were sick and you'd take that at face value and make a bed for yourself on the couch and you wouldn't move until you weren't sick anymore."

she told me that how, on one hand, she's very proud of the role i've taken--she's proud of all of the research i've done and that i'm becoming very responsible about all of this. but how, on the other hand, she misses the katie that wouldn't worry about it all...

and i miss that katie too. but i can't *not* worry about it--it's not as easy to trust in doctors and parents to always make the right decision--and there are so many things to think about since i'm entering my eleventh year of being sick... officially becoming a "long term" case--so many new questions are opening up and i can't just brush them off and let someone else worry about them anymore.

mom told me to just say "i'm sick" and leave it at that for now. to not analyze it into a thousand pieces... to just say "i'm sick" and let it go.

so... i'm sick.

>and i'm going to go rest until i'm not sick.

love you lots,

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