I need a excellent neurosurgeon to do the endoscopy on my spinal stenosis. I have a strong constitution in a weak set of bones. I know now I was born with the spina bifida. My discs were shot before I was 35, so my low back was fused. This left me with a low back so absolutely plumb that the rest of my back had to twist to fit, and my neck has never stopped getting painfully out of alignment since. It was the headache that sent me to the doctor in 1993. They guessed, wrongly that I had a brain tumor and I ended up at the neurologist who promptly ordered an MRI.
The Radiologist called to check because the order said possible tumor but the pictures said MS. Shit I thought, two neurological disorders in one lifetime? That seems like a lot. Hey guys, I had polio when I was five. Could that have something to do with it? Nobody knew.
I’ll never forget the spinal tap that boob did on me. Go right back to full activity he said, and I did. And soon I had a leak. And that headache is right up there with the worst migraine or neck related headaches I have ever had.
My brother Vince couldn’t believe he didn’t tell me to rest for a few days. I was going in for a blood patch a week or so later when it finally closed on its own.
That experience soured me on neurologists.
That Radiologist had never seen Polio or he wouldn’t have mistaken it for MS. Polio damage is limited to the brain stem. Dr. Moise knew that. She told me it meant I had both Polio Encephalitis and Paralytic Polio.
The good news is I didn’t have Bulbar Polio, which was the strain that attacked the lungs, causing the majority of fatalities. The reality is you need a minimum of 35-40% of your lung capacity to survive. You gotta keep breathing.
Walking not so much. I was paralyzed and I had encephalitis too, but my lungs are unscarred. You see there is always something to be grateful for.
Besides throwing the rest of my back out of alignment, the surgery left a knot of scar tissue that felt like being stabbed with a knitting needle. One physical therapist used deep massage on the knot. When it let go out came memories from having polio. Tears flowed. I reconnected with my sister and my mother on a deeper level. And I learned things that helped me heal by releasing wrong ideas I had as a little girl, and the emotional pain inside of being hospitalized for months.
And let’s not forget the cruelty of the nuns. The hospital staff were terrified of catching it. We were quarantined in the hospital. Staff were masked in my room. They had no intention of opening their mouths to speak and they were in a hurry. So any delay while I asked begged sobbed or screamed kicked and demanded my Mommy was met with swift justice. They’d pick me up and toss me on my stomach. Then came the impatient overly rough administration of suppositories. I tell you for me it was a rape-like experience.
But when I got out of isolation after three weeks alone and one of semi-isolation, I thought I would finally get to see my Mommy. I was devastated. I cried for hours until the nun told me if I continued to act like a baby, they would treat me like a baby and put me in a crib.
Under threat of humiliation I choked back my tears. Mightily I resisted the sobs and the tears. Again and again those waves of sorrow drowned me, and then they brought out an old enamel crib. Ancient even in 1954. Thin iron bars painted white. Up went the sides.
And as if that wasn’t humiliation enough for a five year old, they wheeled it out into the center of the ward and set it there as if on display. Indeed I have no doubt the other children were warned to behave or face a similar fate.
When at last my mother appeared she got right on it. “She’s a big girl! Why is she in a crib?” She demanded to know. The nuns promptly lied. They told my Mom it was to keep me at rest.
After a while they released me to a single bed. By then I was in a wheelchair. I learned to read in that crib.
The wheelchair was such freedom after the crib! Every evening after lights out, when the nuns were gone, I made my rounds. I adjusted pillows, I washed hair, I combed hair. I carried water. I loved every minute!
So after being born with defects in skeleton, Polio, fusion, scar tissue … On to the next thing: spinal stenosis.
So now I need a great neurosurgeon.