I’ll Stop Counting Surgeries When They Stop Counting

I am having surgery in a few weeks.

Again. It will be my third surgery in roughly eight months’ time, though I don’t know why I’m counting. I dislike people who count these things. Are we bragging? Am I bragging? Sort of.

I tend to say “I average about three surgeries a year” when telling people, even doctors, about the way atypical cystic fibrosis impacts my life. I feel like they need the specifics to “get it.” And sometimes it helps. Their eyes get wide, and they probably think, “Oh, OK, so it’s not just coughing.” But no one really gets it. Not even me.

I am having new issues with my hands that have spiraled out of control, but that’s not why I’m getting surgery. Or where. That’s later. But the hands are still a thing. A big thing. It’s hard to type this column. It’s hard to do the nearly nonstop marketing and promotion that’s required for all my lines of work (my dance company, this column, repeat). It’s hard to reply via text to my family (whom I can’t verbally call on the phone), or sign to an interpreter at the doctor’s office, or drive a car without wincing.

And it’s not going to kill me. “How long has this been going on?” they say.

“A few years,” I reply. “But it was lowest on the list.”

It comes and goes in waves, like a Greg Laswell song. But lately, it’s been worse. “Maybe it’s double crush syndrome,” the doctor said, which brings to mind visions of frat boys playing a drinking game with orange soda. “But it could be the herniated cervical disc.”

I’ve had my lower discs fixed twice in the last six months. And all along, I’ve known that my upper back wasn’t doing great, either; in fact, it’s getting worse. It has not healed itself. My life is physical therapy; posture my job. And all the other conservative measures have backfired or played themselves out.

The writer, Bailey, in her body. (Courtesy of Bailey Anne Vincent)

But I don’t want to deal with it. “It’s lowest on the list,” we say, and move forward, not counting. Now, the crushed nerve is leading to hand weakness on a larger scale, and my jobs suddenly feel like work.

“How do you handle it?” I ask one of my bosses. (It was only a matter of time before you wound up in a column, Kevin.) He lives with SMA, and (not but) is a prolific writer, businessman, colleague, super nerd, and friend. The little bit of pain and weirdness in my hands is nothing compared to his loss of hand agility, and it’s weird to complain about an issue that doesn’t really compare with someone else’s, when I want to be a lot more like that someone else. I want to handle hands better.

“I’m proud of you,” the orthopedist said before I left the room. He said he had imagined someone who was barely moving after reading my paperwork. Someone who’d just had surgery, is part robot, “averages three surgeries a year.” All the things we often count against us. He told me I need to keep it up, whatever I’m doing, because I’m doing so much better than the paperwork would imply. He’s proud of me.

And although we had only just met, I instantly wanted to burst into tears and say, “I’ve been waiting my whole life for you to tell me this.”

Bailey, still in her body. (Courtesy of Bailey Anne Vincent)

Should mobility be the barometer for success? No. Kevin will show you that in five seconds or less. He moves more in one day than most of us do in a lifetime. I want to be better, like him, even when I’m not getting better. But does maintaining passion and pursuit in our lives mean something — to us and to those who read our files? Yes. And I’m OK with that.

Are we bragging? Am I bragging? Sort of. But I’m also failing, slowly, like a Glen Hansard song. (That one was a pun.)

I have surgery again in a few weeks. Months, really. After my company goes on pause. On purpose. So I can pretend to have passions and pursuits that keep me going. And it’s not really pretend, but sometimes the pretense that I can keep going like this is.

I saw two doctors in one day. One said he’s proud of me, and one said I’m having surgery. And I don’t know why I’m counting.

But maybe, sometimes, it’s the only way to remind myself that all of this counts.

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Note: Cystic Fibrosis News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Cystic Fibrosis News Today, or its parent company, Bionews, and are intended to spark discussion about issues pertaining to cystic fibrosis.