When I go through an illness, I like to wait until it’s over or I’ve adjusted to it before I start to talk about it. For most of my life, since I was 16, I’ve had a neurological condition that defied diagnosis. It started with seizures, then I developed weakness in my lower limbs For a while it was possible Multiple Sclerosis, but I was diagnosed as “abnormal.” When I was 46, after a thin slice MRI of my spine, they found a lesion in my thoracic spine (as well as a fracture vertebrae,) and diagnosed me with Transverse Myelitis.
The good thing about that diagnosis was that while my nerve damage couldn’t be repaired, it wasn’t degenerative.
Only it was. Subtly at first. A lot of my decreasing my mobility was blamed on increasing osteo-arthritis in my lower limbs. I made a progression from cane, to walker, to sometimes wheelchair use.
Still, as I was considering leaving Portland, I had the feeling my upper body was getting weaker. I have become quite clumsy. I began to fall more often.
A few months ago, I had a pinched sciatic nerve that caused me some of the worst pain I’ve ever experienced. My new neurologist ordered a complete MRI of my brain and spine. The good news was my brain is fine. The bad news is my spinal cord is thinning and he believes I have a condition called “Heredetary Spastic Paraplegia.”
“Hereditary spastic paraplegia (HSP) is a general term for an expanding group of rare genetic disorders characterized by slowly progressive weakness(paraplegia) and increased muscle tone and stiffness (spasticity) of leg muscles. The age of onset, rate of progression, associated symptoms, degree of muscle weakness and spasticity, and overall severity of HSP can vary greatly from one person to another, even among individuals with the same subtype or among individuals within the same family.”
It’s more rare than Transverse Myelitis. I don’t know of anyone in my family who has it. The neurologist said it could be caused by a genetic mutation as much as being passed down through the family.
I told a friend I thought I’d lost a part of my identity by the diagnosis change. She said she didn’t think it was so much a part of my identity, it’s just something I have. But I went so long without having a diagnosis, and there were many times when I thought I was some sort of hypochondriac. With a name for it, it was validated. And, of course, I took hope in the assurance that it was NOT a degenerative condition. I’m degenerate enough, thank you very much.
But over the years, there was always evidence that I was weakening. And there was always a little bit of guilt about not doing more physical therapy, perhaps I wouldn’t be getting so weak if I exercised more. It’s that modern faith in the exercise cure-all that I didn’t feel I was living up to. But even when I was doing water-aerobics and Tai Chi, I was weakening.
I rode a bike til I was in my 30s, then I couldn’t, my feet fell off the pedals. I lost bowel and bladder functions — talk about adding insult to injury. I tried diets, exercises and all kinds of “cures,” but the steady weakening was there. I could blame it on age, even though I knew people in their 70s, 80s and 90s who hadn’t weakened at nearly the rate I had. I think the diagnosis was my own little faith cure, my island, my way of minimizing the condition and getting on with my life.
So now, I’m processing this new diagnosis. Later this week, I go to have a “nerve conduction” test, to see how much the nerve damage has spread. The good news is I’m still sensory in tact, and in many ways hypersensitive. I still have a sensual life. And the sciatic nerve pain stopped. The neurologist gave me better medications for controlling spasticity and leg spasms. It also helps with mood swings and for the first time for decades, I don’t feel like my life is too hard, that death would be a good solution to all my problems. That’s a huge weight lifted off of me. I think I can make it through. I am a survivor.
As soon as the pain was under control, I started painting again.
But it hasn’t been the kind of manic, I better get this done before all hell breaks loose kind of energy, or the desire to take on bigger projects than I can manage. If anything, I’ve cut back on a lot of stuff.
I’m tired. And disappointed. And frustrated.
And it’s okay. I don’t have to find a silver lining to this situation, although I will, I know. That’s my nature. I don’t want to dwell forever in a place of mourning for the life I couldn’t have. And I’m lucky to have friends with varying degrees of disability who make my life easier and give me perspective.
Still, I will probably never get better. Chances are I will get worse.
But still, there’s a little wild Joy inside me that’s already doing an unaccompanied dance to the internal music that has gotten me through this far, and will take me where I need to go. I won’t limit myself to this sad aspect, I know.
But for now, I’m sitting with my impatience and sorrow.
And it’s okay. It’s all going to be what it is, regardless of what I think should happen. What a gift it is to age, to learn, to cry, to transform.
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