Okay, this is a bit of an exaggeration! 🙂 But only slightly. Dystonia really does wear one down a whole lot. Have you ever heard of dystonia? Did you know that it can occur post-stroke? Were you aware that absolutely no research is being done on post-stroke dystonia?
That’s because the condition is so rare. Lucky us, huh? 🙂 But I digress …
My vlog for this week is about how I got dystonia. And how I think it lit a fire under my ass to get my writing published.
Hi! Today, I’m going to talk about something that I”ve been meaning to talk about for a long time: how I developed dystonia. Somebody asked the question a long time ago, and I never got around to answering it, so here’s what happened.
I was at a writers group meeting at Barnes & Noble in my neighborhood and I go into the restroom, and I had a stroke and It was bizarre. I was only 48, and that’s not old. It’s certainly not an age when a person expects to have a stroke. Nobody expects to have a stroke. I guess. Especially me. I was very healthy. I exercised regularly. I still exercise regularly. And I had none of the risk factors.
But it just happened, and so I had this stroke, and I was in denial at the time. I couldn’t believe when somebody told me what was happening. I was, like, no. It can’t be. I’m too healthy for that, but it was it was true. And my whole left side was paralyzed. But I was fortunate to be able to get treated promptly, so that I could recover just like that, really. It was the same day essentially, and I thought that I had totally dodged a bullet, but I hadn’t.
Five or six months later, I started to notice that my left hand was pulling all the time and that my left foot was clenching in all the time. So … what I learned after talking to a neurologist was that this can develop—this condition can develop (dystonia) after a stroke for reasons that nobody understands. And that’s what happened to me.
One of the things I would like to point out is that I don’t think I would have self-published if I hadn’t gotten dystonia. Because I learned from this experience that no matter how healthy or sure of anything you think you are, something horrible can happen that can change your life like that.
And I thought you know, if I’m going to get my work out there, I’m just going to do it. Because I had been trying so hard. I had been writing to agents and publishers trying to get my book published and—here’s the irony—I had the stroke right around the same time that I found a small publisher to take on my first novel. But the publisher went under nine months after I signed with them, and I had the stroke at the same time, so it was like a double whammy and I went through a period of not knowing what to do.
But I just kept writing and that was the important part. I just kept at it, and I kept trying. I kept trying to find an agent or a publisher, and It just wasn’t working out, I don’t know. It’s just one of those things. I kept at it and kept at it, and I finally just said the hell with it, I’m getting my work out there.
And what happened after that I have no explanation for. I got lucky, I think, that I made the New York Times bestseller list. There was a certain amount of strategy involved, but not necessarily the best strategy for now. Things have changed considerably since 2011, and what I hope to do in other videos is talk a little bit more about writer lifestyle and how to deal with writing for a living when you’re dealing with something like a disability. So that’s it for now, and I’ll talk to you later.
Finally, I’ll share this with you, because I found it on Twitter and it made me laugh. 🙂
Sorry … that was too good not to share! 🙂
PS: If you’d like to check out my favorite video gear and other products I recommend, just click here to see my products kit (contains affiliate links)!
Paula Mattis says
Thanks 🙏🏽 for sharing I had a seizure back in 1993 That tore up my jaw so severe that the guy that did the trauma surgery said it’s worse than the plane crash our car wreck and now it’s even more worse on top of complications in my mouth due to illness an disease etc. from there I ended up having a rare syndrome SMA syndrome and after that was these Autoimmune diseases two as of right now with Lupus SLE and Sjogren’s syndrome along with other complications illnesses etc. an just recently About four-5 Months ago which stroke situation happening had some weird things happen but nobody really noticed it because of all the other things but I had a major and I Main major one where this neurologist Then admitted me in the stroke unit only thing we have a whole stroke assessment one of the imaging which was the last one is done because of my implant coming out of my ear and I don’t have the card so they said they couldn’t do the ending Then admitted me in the stroke unit only thing we have a whole stroke assessment one of the imaging which was the last one is done because of my implant coming out of my ear and I don’t have the card so they said they couldn’t do the endingImaging with Been there for over four days An only having a 10 minutes assessment with stroke neurologist Had diagnose with dystonia . Thanks 🙏🏽 for taking they time to read my comment. Sincerely, Paula Mandel “Mattis”
Thank you for sharing your story. Hang in there.
Dystonia suffer says
Thank you for raising awareness about post stroke dystonia. I am interested to know if you also suffer with post stroke fatigue and difficulty ‘multitasking’? I find that my stroke (and post stroke dystonia pain) have affected my memory and ability to focus.
Can you advise on your exercise regimen please? Dystonia affects both of my feet and legs. Botox does not help. Do you simply push through the pain or are there any treatments that help you?
Thank you very much
I did have post-stroke fatigue directly after the stroke. And I don’t do multi-tasking. It’s unproductive, even for those unaffected by chronic illness.
My fatigue these days is a side effect of the constant battle my muscles have with each other because of my movement disorder. The constant clenching and the way opposing muscle groups tear at my hand and foot wear me down.
I’ve been given a specific set of leg exercises by a physical therapist, which have helped. They’re a combination of leg lifts, bun squeezes, lunges, and a repetitive step routine. It’s hard to describe without diagrams. You should probably seek advice from a physical therapist.
Botox helps me a bit, but only a bit. As for the pain, I’ve been through a laundry list of pain medications. Right now, I’m on gabapentin. I was also taking Cymbalta for depression and neurological pain relief, but I’m weaning off that.
I’ve found that acupuncture helps with overall mood and wellness.
I also try to make a 20-30 minute nap every work day. Writing requires concentration and focus. At some point, I have to lie down before I fall down! 🙂
The best advice I can give is to take things at your own pace. And seek help through physical therapy or try alternative treatments. I’m considering tai chi and yoga. Meditation, too.
One more thing: watch funny movies. Read funny books. Laughter helps! 🙂
Best of luck,