Bonus Round Patient Pages
Encouraging patient/doctor/caregiver communications


Friday January 25, 1999: It Snowed!

dear sparky,

something astounding happened where i live today...

it snowed.

i woke up at five thirty this morning and it was coming down in huge, fluffly flakes.  i was astounded... it hasn't snowed in the central valley (central california--visalia to be exact) in over fifty years, and it might never have snowed quite like this before.  today, for the first time in my entire life, i played in a real snowfall.  i caught snowflakes on my tongue and in my hands--i got in a snowball fight and ate at least three snowballs (should i mention the huge welt i have on my cheek?)... my brother and i made a snowman, and my main contribution besides giving him a belly was painting him with glitter paint.

the only reason i stopped playing in the snow was because my arthritis got so bad that my knees kept buckling and i could barely stand up.  but i'll talk about that in a moment--right now i want to talk about how extraordinary today is.  how something as simple as a snowfall can make an entire town so happy... how happy people are, the fact that everyone is smiling at everyone and that kids are throwing snowballs at anything that moves.  it just makes me gape in awe at how astounding life can be sometimes.

i'm actually very lucky that i'm able to experience this amazing event from the comfort of my own home.  despite my ever-growing sickness, i spent all weekend working with the family moving out of our old house.  twelve grueling hours of packing boxes, moving boxes, moving filing cabinets and desks and most of it in the rain... and having to endure mom's inquires every five minutes "katie, are you okay? katie, do you need to lie down? katie, how are your knees? katie, are you okay?"  she was worried because i've not set foot out of the house in two and a half weeks and the first thing i should be doing is not hauling boxes... and i wasn't okay. and we all knew that.  last night i got home and i had to be carried into bed--i only escaped going into the hospital because my fever was very slight and i was just too tired to deal with it.

now i can almost hear you all saying to yourselves that such a sick girl should not be out in the snow having snowball fights with middle school boys at six in the morning--but i don't care.  i can't sit around and wait for my health to improve--i have a chronic disease that never goes away, i will never be fully healthy.  and sometimes i just have to push myself no matter how bad i feel--because life won't wait for me to catch up.  and sometimes i have to pay the consequences for my actions by getting trapped in some hospital bed--but it's never not been worth it.  this disease doesn't give me a reason to step out of the race and say "i can't do it"--it just makes me start ten steps behind everyone and give that much more energy to catch up...

but it makes crossing each finish line more enjoyable than most people could ever imagine.  i guess i'm just happy that i can look back on these past ten years of sickness and instead of seeing lots of hospital beds, doctors, surgeries and medicine--i see plays that i was in, friends that i made, mock trial championships that i won, vocal championships that i competed in, newspapers articles that i wrote... and i'm happy that i was able to accomplish so much with so many odds stacked against me. 

and on that note--i'm going to go outside and play in the snow with my little brother and his friends, as long as i can lace my shoes up over my swollen ankles i'm a happy camper...

lots of love,

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