I’ve been told by multiple stroke survivors that they must have had it a lot worse than me. I know quite well what I look like now – but that’s now. If you would’ve seen me 2 years ago, 2 1/2 years ago – that would not be a thought in your head. This blog is getting pretty popular and I kinda feel like I’m establishing myself as an authority on strokes online so I feel like this needs to be said. After the strokes(3), I could not walk, I could barely talk, my ataxia and tremor were so bad that my entire body would shake and I would sit on my right hand. I had an unnecessarily completely shaved head due to my brain surgery. I had to be showered by someone, I had to be taken to the bathroom. Turning my head made me dizzy. I could only drink out of cups that had a lid on them, even using my “good” hand. If that wasn’t the case the walls would get a shower. I had to be fed for the first month. I would get debilitating migraines every week that would last for 3 days and make me vomit. And throughout all of this, I was completely cognitively intact on the inside but NO ONE treated me as such. I looked like hell and felt even worse. I was told by an extremely arrogant neurologist at a year and a half that my recovery was over. I mailed that doctor a copy of Stronger After Stroke and said “please read this book and stop saying that to patients.” I HIGHLY doubt he read it.
Well I pretty much said “F that, I’m not living like this.” There’s a reason that I look good and that reason is meditation. If I hadn’t been doing this work on my brain for the last 2 years then I don’t know what. If I ever work again as a PT, I want to work rehabilitating stroke survivors(I wonder what my motivation for that could be) and meditation and breath work will be a mandatory part of recovery.
Ok, now that I’ve vented and gotten some anger out – here…… laugh. 🙂
Categories: Brain stuff, Health, Recovery, Rehab, Stroke stuff
In miles traveled I’ve hobbled and struggled all the way across the United States and a good deal back again just to do what I used to do so easily, and what billions of people do everyday so easily. In triumph I want to yell out, “I CAN WALK!!! I CAN WALK!!!”, but people would turn to me and say, “So what’s the big deal?” They have no idea. No fucking idea at all.
No idea – that’s the understatement of the year!!!! And we’ve had a few understatements in the last few posts! 🙂
LOL!!!!!!!
Scott, do you know about My le Brandie? He’s a stroke survivor who has walked coast to coast twice, and Maine to Miami once. He ends up doing 18 miles/day and stops at rehab hospitals along the way. He has an attitude like yours.
Holee mackerel! What an inspiration for me. I read his story and am now following his routes. Thanks Barb.
Your blog is the first one I go to so I can make some snarky comment. Brain, tonight, I’m smart enough to want some alcohol.
Done, after listening to a Cafe Scientifique presentation on Makers. Pumpkin Ale, pretty tasty.
pumpkin ale, hmmm…
Amy,
Your blog is popular because who you are AND how far you’ve come. You give others hope while telling like it is. Sure you look normal, but that took so mighty long hours to get that way. Stroke survivors can relate.
If you ever regain the ability to be a PT again, think of what you have learned that you could bring to the table as a PT and all you have learned with your strokes. You will be amazing. I’d pick you as my PT hands down.
Have you considered being a yoga instructor for stroke survivors?
No is exactly right. You’ll be a PT with a cult following … Forget everything you learned in school and insist on teaching yoga to stroke survivors.
Loops!!! I meant JO, not NO
Thank you Jo. 🙂 I have not considered that!
Look up Matthew Sanford of MindBody Solutions. He’s a paraplegic yoga instructor, he’s got that sly grin also. His book is great; Waking: A Memoir of Trauma and Transcendence
I am going to get the certification for Therapeutic Recreation in May (thinking very positive here) so I will happily join you in your PT /yoga /stroke survivor cult.
We’d love to have you! What kinds of things does an RT do?
Amy, I had it so much easier than you. My husband was appalled by the first couple of days of my zombie state, but once I was mobile and laughing, we both figured it would suck, but eventually turn out ok. He has spent more than 30 years trying to make me laugh, which makes me happy; and I have spent more than 30 years laughing at his goofy jokes, which makes HIM happy. Once I could understand his jokes again was HUGE. I don’t mean to trivialize what happened to me … It’s been heartbreaking. But that’s happened to everyone, one way or another, even those who haven’t had strokes.
He better make me laugh come March!!!!!!
Amy my experience is very similar to yours and you are right there are a lot of people who think I had a “Mild stroke” because my mobility came back not bad. SO frustrating with the less visible dizziness and nausea with every movement and those headaches to say nothing about weird cognitive deficits. I had full body trashing around tremors that seemed like seizures only I was with it and it went on for as much as a hour. Had one idiot doctor say if it is not seizures it must be psychological in origin despite that there was brain damage showing in the MRI. . Anyway I am still improving at over 5 years regarding the dizziness. I do Tai Chi and aquatic therapy. I’m not totally there yet.– I saw my Dr today and lost my balance when I was leaving and landed against him!! He calmly stated “I can see your balance is still not great.” lol
It is incredibly frustrating to meet new people (or even see people that know everything) and they think you’re fully recovered, that’s extremely frustrating.