Sunday, March 8, 2015

Sunday Stroke Survival: Being Tied Up and Gagged

Got your attention, didn't I?
No, this blog is not about some kinky sex acts like in 50 Shades of Gray nor about a break in at my home. So if you've this reached by some search engine thinking it was..."bye, bye now."

It's about having a stroke with aphasia. One of the questions I get asked most often is describe what my first mental/emotional reaction to having a stroke was. My answer...
It felt like I was tied up, gagged, and thrown into a trunk of car, very much against my will. I couldn't move half my body. I couldn't speak to where someone else human could understand me. I could not do much without someone else.

That is once, the disbelief subsided.It's like it's all a bad dream and you'll wake up soon, but you are awake. Denial or forgetful is such a wonderful state to be in, but eventually you have to face reality. I went through a stage of this before I started fighting back to regain my life.It was only a matter of 24 hours, but it seemed like an eternity.

Trying to learn how to speak again where I could be understood was an essential in my case so it got the strongest focus. I've never been one to fade into the wood work. Too many people depended on me to communicate. From nurses..."How are we feeling today?" Doctors..."Can you feel this?" My family..."What's going to happen now?" My husband who reads lips and facial expressions. Even my pets, all expected the Jo they knew to answer them.

But when you have scrambled eggs for brains due to a stroke, sometimes simple thoughts are hard to communicate. First you have to find the right word to make any sense. Form the word and make it right, and then make the correct sound come out of your mouth. This is hard work that you haven't even thought about since you learned your first word at six months old. It can be a very frustrating and exhausting task, and I even haven't strung these words into a sentence yet.

The art of speech is often taken for granted as something learned ages ago. But for a stroke survivor, it's an uphill battle. For me, I am fortunate. I recovered the basics relatively quickly. For others, they've spent a decade or more relearning the basics.

For folks with aphasia, coherent speech is a life long goal. Even for me who speaks quite well with aphasia due to stroke. For example, I was speaking to a friend at therapy. She is the significant other to my strokee buddy also going through dry needling. It was like old home week when we get a chance to talk. She also one one the leaders of our local brainReconnect stroke group. I've also known her since high school. We were talking about elevated raised bed gardens and I lost the word I was trying to say. After several attempts and pauses, I uttered a Argh! and stomped my foot. This is life with aphasia. I knew she would understand because her other half has aphasia and after seven years is finally able to utter sentences. I didn't find the word I was looking for until hours later when I was thinking about the conversation.

That brings to mind the isolation survivors with aphasia feel. My life before my stroke was active with a number of social types situations where speaking and talking to other people was a big part. Now my life centers on a very select few, mostly family, extended family, and stroke survivors. I've let fall to the wayside friends who require communication by phone or in person in favor of emails.

Don't ask me why I can communicate better this way. All I know is that I can. It's less demanding on my brain than a face-to-face. But by the same token, it's a isolation creating way of communicating. I can take my time with a response. Time to find the right words. Time to find the correct spelling. And, I can edit it if I need to. Unlike face-to-face communication that there is evident pauses while I search for words and try to put them together correctly. Like this blog.

I believe it might have something to do with the fact that I was a writer before my stroke. Seeing and finding words on a screen is easier. The letters I think that spell the words don't come out cockeyed because of the dyslexia. I hit a key and it forms right. The spelling might be off but a red line appears. With grammar, it's a green one. It's also not as frustrating or embarrassing when aphasia raises its ugly head. I don't know for sure. All I know is my brain has allowed me to converse this way. I'll take whatever way that leads to a successful outcome.

So, how have you overcome difficulties and gained success?
Nothing is impossible with determination.


  1. {{{{hugs}}}} Jo, I can't imagine this. Just know I'm praying for you. :-)

  2. Difficulties? I, too, am a writer who had a stroke. I've been a writer trying too make a living as a writer since I was 22. I was not successful pre-stroke: I wrote and was paid for a couple of work-for-hire books (one basic cardiology and one history) and hundreds of newspaper articles. After the stroke, I was fortunate to not have aphasia, but I DID have scrambled-egg brain. It was then, after the stroke, that I was able to write a book - a GOOD book; it is not enough for me to ever make a living, but I have a physical copy of a lovely book, a book I'm very proud of, with my name on it. The stroke made it possible.

  3. The friends who won't make time for email exchanges with you weren't real friends anyway. Knowing what you've been through and what you continue to go through, I'd want to be a bit more accommodating.

  4. Zan Marie- thanks!
    Barb- No, it won't make you rich, but it's golden!
    Alex- They are to a point, but everyone has their own lives to live.


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