4/03/2004

How pain can ruin your life

My youngest sister used to have these pains every now and then. She would complain to my mother, but by the time she had 5 kids, my mother stopped taking us all to the doctor regularly. She especially didn't take us to the E.R., because the doctors there had all kinds of questions for her, questions she did not want to answer.

But she didn't do anything about B.'s pain. She figured it was just growing pains, and she let it go.

When B. was about 17 years old, a senior in high school, she woke up one morning in so much pain that she couldn't move. Doctors were visited, tests were ordered, blood was taken. It turned out that B. had Rheumatoid Arthritis, a disease so rotten that if it were a person, I would gladly impale it in the gut, twist the knife, and mutilate the body afterwards.

Now, I know what it's like to live with pain. I was born with hip displaysia, a common birth defect that is very correctable when treated early. Mine wasn't treated early enough. I had an osteotomy when I was a little over a year old, followed by several months in a cast and brace from my waist to my ankles, then another one for several months from my waist to my knees. But I was a kid, and kids work around their problems. A kid who is born with no hands finds a way to do everything they want to do. And I did, too. My father made a cart for my legs to sit on, and I wheeled myself all over the place with my hands. I couldn't sit cross legged, but I could do cartwheels and handsprings, and because my arms were so strong after a year or so of dragging myself around, I was a pretty awesome shortstop when I was old enough to play softball.

But B. was contemplating graduation, college, what she was going to do with her life when RA hit. And the pain of RA has ruined her life. She still lives at home, where my mother, the queen of all enablers, waits on her hand and foot. She had a part time job for a year, and we were all so excited that she was finally getting out of the house and meeting other people. But she hated her job. She is quite shy, so she had trouble talking to people. And she hurt all day. Sitting hurt. Standing hurt. And her body would hurt so bad at the end of the day that she could barely move. So she quit. She lives in a basement bedroom at my parents house, obsessing over the UConn Huskies.

I alternate from feeling sorry for B. and being angry with B. for not having the strength to tell RA to go fuck itself, I'm still living my life. But I understand her surrender to pain. It's so easy to do. It's hard work to fight pain. (I'm not talking about taking narcotics to ease the pain. When I'm having a bad day, I take a Vicodin so I can sleep, otherwise the pain will keep me awake all night, unable to find a comfortable position. When you are suffering, pain medication is a good thing, and I'm a big believer in it - although I'm no Rush Limbaugh - it will take me 6 or 7 months to go through a bottle of 30 Vicodin). I'm talking about the mental battle to keep pain from ruling everything you do.

If the medical world doesn't make some more progress on treating RA, I really hope B. can find some strength in her to put up a fight. Life is too great to spend it sitting in a room watching TV.

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