It’s no mistake that my email address is “stillwalkn.” When I was five years old doctors told my Mom I’d never walk again. Apart from several months on the polio ward at St. Charles Hospital in Brooklyn Heights, New York I have been walking continuously for 63 years and I’m still walking! Don’t get me wrong. It hasn’t been easy. But whenever it starts looking like I’m going to be in a chair again, I just get more determined than ever not to allow that to happen. I have an aversion to being in a wheelchair again. Go figure.
When I was 20, doctors at Mt. Sinai Hospital in New York advised me to accept my limitations, which included not being able to carry a suitcase or walk more than one city block, and the pain, always the pain. I became angry. I didn’t want to accept all of that. I felt the irrepressible need to rebel, and to prove the doctors wrong.
So I talked my boyfriend into a two-week hiking trip. Then I told my doctor. She “washed her hands of me.” Then I told my Chiropractor and he “washed his hands of me,” too. But he said if I was determined to do this insanity I should at least wear a support belt around my hips. I still have it. It’s two inches wide, quite thick, and closes with a clasp consisting of two incredibly sharp metal prongs. I wore it on the hiking trip, and it helped.
The initial ascent up Mt Washington in Vermont’s White Mts. With a 40 lb. pack was hard. i don’t think i could have done it without that elastic belt. But it got easier and the pack got lighter, and when we bounced and bounded out of the woods two weeks later I was in better shape than I’d ever been. Now when a doctor tells me to sit I stand, to rest I walk, to accept I fight. Which is not to say I don’t sit, rest or accept. I do them all and I do them often. But I’ve never ever given up.
But every time I overcome an obstacle another obstacle comes along. It’s the story of my life. The invitations to sit down and give up have paved my way. As I decline the invite again and again, my resiliency gets stronger. I heal faster and better than anyone I’ve ever met.
Doctors routinely misjudge how long it’s been since my last surgery. Recently, a PA at my Surgeon’s office insisted I was there for my 12-week check-up. It had been exactly eight weeks, not 12, but he wanted to argue with me. I finally convinced him to look at my file. “Oh,” he said, “you ARE doing well.” That’s how I roll. Life is short: heal quickly.
I thought there was nothing left to learn about my beleaguered low back. I had my first slipped disc at 13 and a fusion when the scoliosis was so severe three discs ruptured, one, two, three in a row like perverse dominoes. The Monroe Doctrine right here in my back. The fusion made a big improvement over feeling nothing below my waist, but pain right there has been continuous, varying only in degree from mild to incapacitating, more or less on a daily basis since the surgery in 1986.
My Surgeon at the time, Dr. John Bishop at St. Al’s in Boise told me at the time I had “unformed bones” from a birth defect, and he showed me the X-rays, but I didn’t know how those bones were supposed to look so telling me “See? They’re not solid” didn’t mean much and I filed it away in the vague and uncertain section in my memory. I thought no more about it.
None of my subsequent doctors, all of whom have scrutinized my various back pictures, has ever mentioned my birth defect, so I forgot all about it. Until last week when I met Dr. Patrick Soto. My polio doc sent me to him to see about getting some pain-relieving injections back there. We had covered my medical history thoroughly but he kept asking when did I have the laminectomy. I said I’d never had one. But then where are my bones? Oh, wait a minute…missing bones? The birth defect Dr. Bishop told me about?
None other. But now it has a name: “Spina Bifida,” and while a minor case of it is not at all rare, it could certainly have something to do with my unrelenting and quite debilitating back pain. You think?
I’m wondering how you fix something that isn’t there. But such questions must wait their proper time. Meanwhile just don’t ask me to sit down. I don’t know how.