Winning.

18 May

“You’ve got to work though, right? Or else the disease wins.”

I can’t find the words to express the rage, indignation, frustration, and helplessness I felt when my beloved doctor said those words to me about a year ago. I went into his office that day begging, pleading to write me off for disability. I was just sure I’d never feel well enough to work again. I was still working full-time, limping-along, really. As far as I was concerned, the disease had already won. I was so incredibly angry with him. I thought bitterly of the summer house I was sure he was paying for with my repeated visits and unrelenting suffering. Fuck him, I thought.

I found myself having to make the choices that are common for people with chronic disease. Do I make dinner or bathe the baby? Do I fold towels, or do I wash my hair? Do I play with the baby and hold off on taking the drugs that will alleviate the pain but leave me an unsafe solo caretaker, or do I get relief and hand her off to her dad for the night? My dressing is leaking, how do I take care of it at work? Where is that extra pair of pants I tote around?

Most of last year seems locked away in a very fuzzy place. Most of the time I’m still surprised it’s 2011.

You know what, though? He was right. He’s always been right.

Soon after that desperate visit, one of many I had between October and July, my second surgery was scheduled to close the fistula that had formed at the incision site. They would also go in and remove the ovary that had gone AWOL and “clean up.” At the time, it was an incredible relief, and I didn’t really appreciate the gravity of what exactly would be going on. Having to coordinate between several doctors, I should have. That was not a routine operation.

I was in so much pain by surgery day that I was taking the maximum possible doses of prescription painkillers, and they still barely touched it. I was seeing ostomy nurses at the hospital a few times a week to get the skin breakdown under control so that the surgeon could get a good closure. I think that was a low point, I would cry at the pain and the humiliation of having to drop trou in front of them without even the benefit of a gown and the pain of dressing and washing, because everyone has a breaking point. They chided me, telling me that people lived with ostomies their entire lives. I didn’t have an ostomy, I reminded them. It’s different when the body creates one on it’s own. In an incision. That sort of folded in on itself. In an awkward place to dress.

I was happy when surgery day came, and didn’t have the sense to be too scared. It took them around six hours to fix me. The ovary, fistula tract mess, and sigmoid colon had all stuck to my duodenum. If my abdomen was a map of the United States, Florida Nebraska, and Arizona were stuck to Oregon. I lost the ovary, of course. I also lost another six inches of small bowel, along with my sigmoid colon (I was told I wouldn’t even miss it – LIES). I got lucky he was able to keep the duodenum intact. He stitched in the staples on my intestine. My skin was closed with countless internal stitches and fifty-four staples.

Another nine days in the hospital. Better pain management, and when I went home, I felt better in those nine days than I had felt in the nine previous months. Not to say the road wasn’t hard, it was. Not to say I don’t have lasting daily inconveniences, I do. Not to say I don’t have periods where it becomes REALLY inconvenient and hopeless, I do. Not to say I’m not in remission in spite of all of that, I am.

After nine months at home with the baby, recovering fully, I went back to work. Petit Four and I were both pretty ready. It was to a point where I was no longer enough stimulation or entertainment enough for her during the day. I was starting to go nuts.

So with fresh terror and enthusiasm, I’m back in the work force. I do what I did before, for another great organization exactly aligned with my beliefs and interests, only on a larger scale. The adjustment has been rough, but I once again feel human and whole. The disease part is what it is.

I can’t wait to go back to my doctor that wouldn’t let me quit and tell him he was absolutely right. As long as I’m working, there is no way for the disease to win.

And to tell him to enjoy that summer house, because he’s earned it.

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