I found this essay somewhere and I thought I'd post it. It was from my first few years in Fayetteville -- maybe 2004.
It is almost like grief. In my mind, there is another me, the healthy me. Not the me Before, but a me that I never was.
She plays on the graduate student flag football team. Her skill and agility astound. When the play gets too rough, She laughs, rolls up her sleeves, and gets bruised and dirty. When She walks to the bench, She doesn't limp. When the ball comes at her, she doesn’t cringe. Afterwards, She drinks a few beers because, hey, She's young and has a healthy liver. She goes to concerts and dances. And She comes home and grades papers instead of collapsing, exhausted, in a heap.
But She never existed, even before I got rheumatoid arthritis. I was always anemic, a condition very common in people with R.A. And, honestly, I was wimpy. Uncoordinated. Scared. Was that because of this disease that lay dormant in my T-cells, waiting to attack, or was it just me? Is there even a difference?
I want to be her very much. On my porch, there is a barely ridden Trek mountain bike. I bought it off of e-bay two summers ago. It stands, rusting, as a monument to her. There are other monuments – my backpack, an inflatable kayak, a pair of running shoes, and, most importantly, a T-shirt from a marathon She completed. This wasn't fantasy. This really happened. For 26.2 miles, She and I were the same girl. We share some race T-shirts, too, postcards from hard trails we’ve climbed. Those were golden moments, finishing the race on my feet, still running, hips sore, knees spongy, but still running. These were moments where she let me live inside her skin.
I miss her now, on nights like these. My left knee has started that persistent muscle ache. It seems funny that the muscle should hurt so much, when it is actually something happening deep beneath it causing the pain. For some reason, my own immune system cells are hungry. Instead of viruses or bacteria, they have turned to the synovial fluid inside my joints. The left knee is the main course tonight. Any tensing of the muscle around the knee pulls at the tender joint and makes me think I’m going to collapse in a heap. I look for her, but She has fled.
She belongs to the joy, the triumph. She won't sit with me while I type at 4 a.m., knowing that the pain will keep me from sleeping, so I might as well compose an ode to her. She won't sit there in the doctor's office with me as I try to tell him about this nagging pain in my lungs, secretly fearing the possibly-fatal lung and heart complication that some people with R.A. get. She isn't there where I put off the weekly dose of pills one day longer because I can taste them rising the back of my throat when I look at the bottle.
No. I've learned that pain is like grief and you really have to face the void alone. Others can help. I remember one long night when I was in San Diego and my fiance, teaching in Missouri, stayed awake for four hours, talking to me through the pay phone in the dorms, while I cried against a yellow cinder-block wall, unable to stand back up and get to my bed. It helps, but only in the way that a neighbor bringing over a chocolate cake after a funeral helps. Sooner or later, you gotta stand up, let the wave hit, and see if you're still standing.
But I don't blame her for fleeing now. It's hard to be around me when I'm like this. Last week, confused by the dizziness of a swollen knee, I ran smack into a wall before passing out. Then I threw up all over the fiance. My fictional counterpart never would have done that.
Maybe I should get rid of her. She's sort of a pain in the ass. She doesn't understand when I am taking the bus instead of walking. She's always questioning, "Are you hurt or just being a wimp?" She doesn't understand how this constant war waged against my body by my immune system can turn me into a walking zombie. Some days, I'm a sleep addict – all I want is sleep, all I think about is getting more sleep. She bounces a few steps behind me and says, "Speed up, you slow poke! What is WRONG with you, lazybutt? Shouldn't you be grading papers?"
To get rid of her, though, would be a loss I have no words for. Sometimes, I see her in my mind's eye, dancing somewhere, because she can dance, or pedaling away, and I smile. To leave her now would be to leave the idea that one day, on some days, when the combination of elements and medication and mood works for me, I can dance with her. This is why I haven’t dumped her yet, why I am learning to tune out the insults she hurls at me when I take the bus.
After almost 14 years of this, about half of my life, I can see that the pain isn't the challenge anymore. She is my challenge. To reign her in, to not have her dance so far ahead, not to run wild on the football field, but to be happy sitting with me at the sidelines. To have her push but not insult. She is my disease and therefore the dancing partner I never wanted, but she makes me dance all the same.