Bonus Round Patient Pages
Encouraging patient/doctor/caregiver communications


Monday January 18, 1999: Superwoman

dear sparky,

so my entire world just basically collapsed and crumbled friday night--for no particular reason whatsoever, it wasn't a particularly bad day as far as myhealth was concerned... i was just overwhelmed by the enormity of this disease.  i was mostly succumbing to the pressures of feeling the need to be "the strong one"--you know, the reassuring one, the smiling one, the positive one... the one who can handle everything.

except i CAN'T handle everything, all joking about being a superperson aside--i'm just a kid and yeah, i can handle a lot--but a lot and everything are two drastically different things.  i don't mind having to pick myself up from rock bottom once or twice during an intense period of sickness, i've come to expect hitting the familiar bottom... but that doesn't mean it's easy for me--in fact, it seems to get harder and harder every time. 

that bottom is just a little bit further down than before and it takes a little bit more energy to climb out. but i guess since i'm writing this letter i've once again pulled myself out of the proverbial hole. 

i feel like i'm standing at the precipice of it, looking down upon all of that pain, all of that depression and most of all--all of that anger. 

the anger at this disease, for repeatedly placing me in situations that do nothing but cause me more pain.  for taking away the frivolousness of childhood--for thrusting me into a world of doctors, hospitals, surgical procedures, tests and pain when i was only seven.  when most little girls are playing with barbie and going to dance class--i was counting meds and going to the doctor. 

and a small part of me has always resented that... that this is the only world i'm ever going to know.  but on the other side--there's comfort in familiarity.  dickie and i were talking about it, and it's true.  as angry as i can get at this disease--i also have to remember that because it's all i've ever known... i'm able to deal with it in a way that other sick people can't. 

i don't have a lifetime of health to look back on and say "man, i wish i was that healthy again"--i can't wish for something i have no recollection of.  and that sounds depressing--but it's not, it's actually a comforting thought.

and besides--as much pain as this disease has caused me, it's taught me so many invaluable lessons.  a friend once asked me what i would wish for if i could have just one wish--and i said that i wanted a new hair color.  my friend was floored--"aren't you going to wish away your disease?"  well, no--wishing away the disease would be wishing away a lot that's good in my life.  just like everything else in life--my disease isn't all good and it isn't all bad.  i just sometimes loose sight of that and forget that for every door it closed on me (physical restrictions and whatnot), it opened up another, sometimes more exciting door. 

and as i said in my previous email about the little girl--it's given me an appreciation for life that most kids my age lack.  i don't take a good day for granted anymore and it's given me the perspective to realize that bad days are only temporary.  not that i'm perfect--far from it, my faults are innumerous and i still make a few of the same mistakes over and over.  but that's another letter for another time.

well, i have a friend coming over to "comfort me in my time of need" which serves to comfort her more than it does me--but she's my friend so i have to be hospitable.  remind me sometime to write about how insufferable it can be to have friends come over and being forced to see the pity in their eyes--i don't want or need their pity, thankyouverymuch.

love you lots,

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