In the neurosurgeon’s waiting room, there were few patients looking a bit more fragile than me. One group was obviously a family. 3 men and 2 women, one woman quite old and quiet, who I assumed was the patient. They spoke Spanish, but as we waited, one of the men asked in perfect English, “What happened to you?”
I felt wobbly, and walked slowly, leaning heavily on my walker when I arrived. My dear friend who took me to the appointment went back and forth to the reception desk to take care of the paperwork and IDs and other botherations.
I explained I had a rare disorder, Hereditary Spastic Paraparalysis, which is a degenerative condition.
“I’m sorry to hear this,” he said.
“It could be worse,” I said, which is a good neutral response to almost any inquiries about health and happiness.
A woman beside me, who was playing a game on her Ipad, who used a walker and was probably 15 years younger than me, laughed and said, “Sure enough.”
What followed was a light and polite conversation on people we’ve known who’ve had it worse. One man in the family of Spanish speakers said his wife has fallen down the stairs — only two stairs — and broke her neck. She had total quadriplegia and couldn’t get out of bed at all, no fancy wheelchairs to help her move. Movement was impossible. She’d been bed bound for 2 years now. Last year he got cancer (he pointed at his stomach), but he is okay now.
Doctor’s waiting rooms, to me, are always humbling places.
We all expressed sympathy and murmured about how yes it could be worse, we must count our blessings every day.
I felt strangely discombobulated. I could feel myself trying to float into some story in my head, which how I usually deal with stress. I was there to find out if I’d have surgery on my lumbar spine. I wasn’t sure I wanted it. But there was a possibility of relieving pain, and I’d allowed myself to think they maybe able to help me walk better, stop my leg twitching, and give me a break from the degeneration I’ve felt so keenly this past year.
When they called my name, I was given a loving look and nod by the man who originally asked about my condition.
Another thing I was nervous about was my weight. In the stress leading up to this visit I’d been very indulgent in eating for relief. I’d also had a lot of insomnia, so eating was a great way to pass the time. As the digital scale rose past my last weigh in, the nurse hiccuped and apologized. We both started laughing. She told me she thought she’d outgrown hiccups.
“Do you outgrow them?” I asked.
“I was always told that when I was a kid.”
She looked to be in her late 20s. She took my statistics and we discussed hiccup cures and laughed. By the time she had me parked in the examination room, I’d forgotten all about my weight — the humor of the body made clear to me again.
The neurosurgeon, who looked to be about 18, was very friendly, but after looking at my MRI slides, he felt the structure of my spine, though damaged, didn’t warrant surgery.
YAY! I thought immediately. Followed by a pooling of tears of disappointment.
“Most of what you’re experiencing has to do with your nervous system. I can’t really fix that with surgery.” He recommended epidurals if I have another pinched sciatic nerve. He called my neurologist and discussed why he didn’t think surgery was necessary and made suggestions about future care.
I focused on his nurses shoes, which were rainbow colored clogs.
The neurosurgeon said I was complex. I told him my first diagnosis, when I was a teenager, was “abnormal.” I still stand by that label.
He gave me my MRI disk and wished me well.
I tried to get into a good mood, but I had a headache, and felt exhausted.
My friend took me to lunch and we talked about our lives, stories we’d heard since our last visit, what is a good diagnosis, what is a bad one.
It was the first day that’s been really warm in April. She drove me around, just talking. The sun lit all the buds and trees as we drove around, the windows down, the air sweet, urging growth.
When I got home, I tried to nap, but I couldn’t relax. The warm wind blew through my screen window. I got in my power wheelchair, and rolled around the neighborhood. I stopped at the store and bought a geranium.
I sat on the porch and watched people go by. Every once out there was a shout or hoot from someone, like a happy primate, enjoying the sun.
Part of me was irritated that I’d spent all these month taking tests, going to doctor’s appointments, trying new medicines — all to be exactly back in the same place.
Nothing can be done.
And yet, now I can schedule things, not worry about surgeries and recoveries. Not have the level of blessed hope or the dismal pessimism that I was experiencing as I waited and waited to find out about the surgery.
I am handed my life back, such as it is
Such as it is, the sun is out. All in all, I love my life. Geraniums smile at me, people take care of me, listen to my wild meandering thoughts, help me in and out of cars. People support my art and writing. The little help and the big help has made me understand the beauty of interdependence.
Every day the full range of what life can and can’t be, what mysteries it can hold, passes by me and through me.
And, lucky for me, nothing can be done about that either. Sometimes, it makes my soul sing.
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