In 2022, “you’re a great candidate” and “we could see an improvement of 80%” were music to my ears. It was a perfect tune that would get slightly distorted and dissonant over the next 12 months, until (spoiler alert) we managed to re-tune it.
I guess you can’t really blame me: I was taking about 12 pills a day, some to help others kick in, some to make others last longer. Quite the chemical cocktail, like many, many other people with Parkinson’s, or any chronic, degenerative disease, really.
I couldn’t make plans because I didn’t know if I could keep them, I couldn’t go to the theater because I kept falling asleep (even that play with Tom Hiddleston!). I kept taking on tasks and saying yes to activism, advocacy and outreach activities until I was stretched so thin I became transparent.
So when the DBS machine started working in my direction, I was ready. I talked to other people who had gone through it, I watched videos, read posts, started following experts on twitter. I knew all about STN and GPi differences and about devices. I also knew I had to be realistic about my expectations, but it was all SO exciting that I got carried away.
There was no honeymoon period before we turned the device on. The only evident change, and improvement, from surgery nr 1 was sleep. On average, before Sept 29, I was getting about 3 hours a night - it was so awful I stopped tracking it. Let me tell you, though, those early “mornings” were the best LEGO time.
Come mid-November, I was ready. I too wanted my “ohmygoodness” moment, when we turned the device on and you could see the difference right away. Only there was nothing. And there was nothing for months, if anything, things got worse. I couldn’t talk to people about my experience, it was too disappointing. There was that one particularly bad time when A asked me if I regretted having done it, and I had to say “yes”. Where was my 80%?
I just kept going as best as I could. I didn’t want to be around people, particularly those who knew I had had the surgery. I dreaded the arrival of July and WPC: meeting in person all those amazing people, all those friends I had made, but not feeling how I thought I was supposed to feel. And it was disheartening in many ways, and uplifting in others. And because I’m me, I chose the uplifting, a little reluctantly at first.
Now, mid-November again, after the botox injections in my eyelids (not for THAT reason!), the new meds I can only get in the mail, and all the “programming” visits, I’m typing again, and I’m back taking on advocacy and activism, just less intensely. I had my expectations knocked down a lot of notches, and it was all dark and uncomfortable. Yet, with a little bit of help from my friends (and zoloft), when A asked me if I regretted having done it, I had to say “not anymore”.