I now come with a remote control and a charger; I have a spinal cord stimulator, and it’s amazing.
This afternoon, I went to watch my son’s basketball game and I sat in the bleachers and shifted around a bit, uncomfortable like everyone else. He played great and his team won and at the end, I stood up and stretched a little and walked out. I stopped and chatted with a couple of other parents. I moved stuff around in my car because his dad had a flat on his bike and they both needed a ride, so I drove them home.
I did this after a full day of work. Last night I went to choir and stood and sat along with everyone else, and then went for some dinner and drinks. And two days before, I went to my dear friend’s annual St. Paddy’s Day party and stood and sat and chatted like a guest at a party.
This is a non-story story. The kind you indulge in your elderly uncle as you listen to him prattle on. But for me, these things are nigh on miraculous.
It’s been four weeks to the day since I went full cyborg, and my life is utterly transformed in the most banal and important ways. Just one month ago, I lived with a dark, pulsating companion who never left. A soul-sucking, throbbing pain in my lumbar spine that sometimes got worse but never got better and never, ever went away.
Chronic pain like mine causes anxiety, depression, social isolation, and a whole host of economic and logistical issues too extensive to list here.
Just one month ago, I would have been sitting in a corner at that party, waiting for someone to be willing to join me on the couch for a minute. I would have sat throughout choir, concentrating on expanding my diaphragm as best I could while sitting up straight on the end of the pew and going right home after. I might have come for the second half of my kid’s game, and I might have brought my wheelchair to tolerate it.
I knew from the weeklong trial that the stimulator would help, but I didn’t get the scope of it. I’m still healing from the implantation, still on movement restrictions, still getting used to the metal box on my back and the moments when I get random electric impulses down my legs. My spine is augmented by titanium and steel, and it is high-tech and chargeable. And it can do so much more than I ever imagined. The quotidian joys of life—watching my boy excel at his game. Standing to talk to strangers at a party. Sleeping. Sitting. They are spectacular.
Of course, this doesn’t cure my underlying problem, hEDS. I can feel all the other symptoms more acutely. The constant shifting of my ribs and pelvis. The pain of a new tear in my rotator cuff. The constant snap and rattle of my jaw. I still have hypermobility and degenerative joints, but as I write this, that all feels more manageable. All those pains come and go and change. I can approach them with hope.
Between you and me and the pages of Psychology Today, I’m scared, and that feels ungrateful. I don’t trust the relief. It’s been 20 years since I could do the things that everyone else can do without thinking about them. It feels ephemeral and too good to be true. Certainly worth a hell of a fight with an insurance company. And, I’ll take it and enjoy every single moment for as long as it lasts.
