It's been three weeks, and by the grace of God I can still walk.
Actually, I can almost run now. I can do jumping jacks, handstands, squats, pushups. I can dance a little salsa. I still can't stand on my toes, but the muscles in my feet are sore nearly every day and my walking is improving all the time, so I'm hopeful that I'll be able to stand on my tiptoes to reach the top shelf of my cabinets one day.
I cancelled my fancy powerchair.
You guys have no idea - no idea - how much work I had put in to try to get that chair ordered. It turns out getting the paperwork together to apply for a group 3 powerchair when your specialist works in another state requires essentially a part time job. I'm tenacious, though, so after about two months of spending hours each week on the phone with the insurance company, the assistive technology company, all three of my doctors' offices, and two different physical therapy practices, I had finally reached the last step before the claim could be submitted to my insurance: a joint evaluation with a physical therapist and an assistive technology professional. I was almost, almost done. Except the physical therapist wasn't available. Somehow the appointment wasn't on his calendar, even though it had been set up for weeks. We rescheduled for late March. Then we rescheduled again, for early April. Then we rescheduled again, this time for mid April - but before it could actually happen, there I was, hyperventilating over breakfast because I could walk.
It took a week to get a hold of one of my doctors. I really thought leaving daily messages with the nurses saying, "Hey! I can walk! It's a miracle! Also, what on earth do I do about this chair?" would get a quick response, but I forgot that clinic doctors are chronically overwhelmed and unlikely to respond to good news when they can barely put out all the fires. But I was desperate to share. Finally, my physiatrist called.
"You still need to get the chair," she told me matter-of-factly.
I took a breath and considered. That just didn't seem right. After all, this chair would be custom-made; it's not like I could just return it later. What if I never ended up needing it? What a colossal waste of resources that would be. Still, what about my own wasted resources - all the time and effort I'd sunk into getting this chair set up? I had no idea what the future might hold. What if I woke up one day completely unable to walk, and had to restart this six month process from the beginning because of my recklessness?
As my doctor expounded on the importance of having all the necessary tools available to me, I turned inward, and found a... knowing. A sense of faith, of trust. It would be okay. I would be okay.
When she paused for breath, I said, "I'm heel-toe walking now. All of a sudden. Without braces. I'm walking heel-toe." She had seen my awkward, mincing steppage gait, classic for my condition and known to be irreversible. She knew exactly what this meant.
There was silence like a stifled gasp on the line. Then she said, "Whoa." Then more silence.
"CMT doesn't do this," I said.
"CMT doesn't do this," she agreed.
We talked through all my testing, my symptoms, my improvement. She was deeply hesitant to leave me without a safety net if the worst happened, and who could blame her for that? Finally, we compromised; I would keep the travel powerchair I'd been contemplating returning, but I would not proceed with the custom chair.
Terrifying. Wonderful. Terrifying.
Just how all steps of faith are.
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I would like to say I'm dutifully doing my part in this, as far as strengthening my body and helping it achieve whatever it is we are doing here, but really I'm just reveling in being functional again. It's amazing how when you were facing severe disability, getting that ability back makes exercise a joy rather than a chore. I smile when sore muscles twinge. I whine about taking recovery days. I started drinking protein shakes. I plan on becoming an obnoxious athletic type if I possibly can.
Many people have asked if I'm going to return to clinical medicine, and to those people I say: calm down. I have no idea. I've barely even wrapped my mind around what's happening to me. I took the trash out today for the first time in at least a year. Let me get a few more of those out of the way. Ask me another day.
Today is still just for celebrating.
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