Stroke Survival Sunday: Even More on Putting Words in my Mouth

Back in April 2015, I wrote on my expressive aphasia. My goodness! Has it been that long ago? Then again January 31, 2016  and heck, even last Sunday. For someone who has aphasia, I write quite a bit about it. This will be my 78th article.  In case anybody is counting. I'm raising an eyebrow at John over at the Stroke Tattler because he always counts when he searches my blogs for articles. "Beat you to it." :oP He usually sends me a note.

Why you may wonder...because my readers keep asking questions about it. Who are these readers?

Well, stroke or brain injury survivors like me, caregivers, even a few research study type people, and speech therapy students. But I'm no expert, but I'm living through it like others like me. The only difference is I can talk about it and even sound knowledgeable. Yes, I did stay at a Holiday Inn Express...see below.

The fact is, many folks suffering with aphasia do not have my gift of gab. This stems from my background of being medically trained and an author. Although this blog and emails are about the only things I write these days. My brain just can't handle the workload involved with public speaking and creation of stories. I suppose, one day, I could compile all these blogs into a book, but honestly who would pay for something than can get for free. I write about aphasia because I can. Lord knows, I write better than I speak. That's only because of the delete key and ability to edit.


Having anomic aphasia is a royal pain, for someone like me, but it could be worse. Yes, I still struggle greatly at times trying to find the word I'm looking for but at least I can now get my point across. Even if I have to say every word I know that isn't the word I'm trying to say. A five minute conversation with me could end up being a half hour one depending on several factors like how tired I am, how long I've been talking, or whether or not I'm having a totally screwed up (neurological) day.

For example, my daughter and I had driven up to my friend Mel's house. It was late because we couldn't leave until she had gotten off work in the afternoon. We had both had early starts that day to boot. About half an hour away, we decided we'd stop for the night. Her GSP said the Holiday Inn Express we were looking for was on the right. There was nothing but woods. I looked over to the left where a gas station was and saw a small Holiday Inn Express sign. What I wanted to say and what my brain told my mouth to say was "there it is." What came out was something totally alien. Gibberish. It wasn't even a known language. All I could do was hit her arm and point while she looked at me trying to figure out what I was saying. Needless to say, she missed the turn and had to turn around.

It was another fifteen minutes of trial and error to get words that ANYBODY understood to come out of my mouth. I had to sit down and be quiet. I sipped on a soda while my daughter took my credit card and checked us in.

By the time we got to our room, I could talk again in single words that she understood. This happened three years after I began talking again. It will happen still today. It's anomic aphasia because of my stroke. I'll often use a sort of sign language now with my functioning hand sort of like a one-handed Italian will. Most times, thankful, I can speak just like most folks. Other than a few stumbles with a handful of words, I do just fine. But it's with great effort and forethought.


Speaking now is like preparing for a big public speaking gig except it's for every conversation I have with anybody. If I'm at a group function and want to ask a question, I have to prep myself to ask it. If I'm answering a question like, "Where are you moving to?" I have to first visualize where I'm moving to, remember the name of the town, and/or where it is. Then I have to remember how to pronounce it, form my mouth to pronounce it, and then breath just right to form the words. Yes, everyone has got to do this too to speak. It just takes time for me to do it. Most times it will come out in a couple words at a time. "Homestead. North Georgia. Mountains. Cornelia." The usual question after that is "where is that?" So I'll begin again. "By Helen. Hour north of Atlanta."

So you can see why typing on the computer is easier and faster. I got an extreme compliment from a man talking with me on the phone last week. He said, "I spoke fine and he would have never known that I'd had a stroke." It was just a case of everything working right when I was talking to him. I also used simple words and short sentences. That is rare for me right now, but I continue to work on it.

The key is DO NOT settle. Keep working at speaking. If it comes out wrong or delayed...so what. At least you are trying. I don't have Montezuma's Revenge of the mouth. I say what needs to be said and make myself understood. I do miss the general conversations about not much like I used to have with my husband, but that doesn't stop me from interacting with others everyday.  I'll keep on trying to talk normally again and the only way I can do that is by practicing. You know the old adage, "If you don't use it, you'll lose it?" The same thing goes for anomic aphasia. You may have to say ten words describing a banana, but eventually you'll remember what the word is, or whomever you are talking to will know.

Nothing is impossible.

Sunday Stroke Survival: Putting Words in my Mouth

I've mentioned here several times in the past that I have aphasia from my strokes. Actually I have a host of problems that can be linked back to my stroke but this one really bites me in the butt. Mainly because I depended on my ability to speak and write so heavily before my strokes.

I made my living as a minister which is heavy speech. As a writer, words and stringing them together creatively was paramount in importance also. Both are history for the time being.I still remain hopeful that one day I might do those things again.

After my first stroke, I couldn't speak fluently but it was better than not being able to speak at all (like just after my stroke). Conversations with me took on average of five minutes for a couple of sentences. With writing, there were blank parentheses where the appropriate word should go later when I could remember it. It is still how I write this blog today, but the number of lost words and the time it takes to find  a word is less. That's how I could write so many words in my WIP (work in progress, "Don't Get Your Panties in a Wad." I had comprehension, but I couldn't remember the correct word.

But that all changed with my second stroke. I lost a major portion of my comprehension. I can't read words off a printed page with a true comprehension the first read through. It takes about four or five times reading through anything more than a couple of sentences with comprehension. It gets sifted and shifted between my eyes and my brain, or my mouth and my brain. Eventually, comprehension does occur, but not without a major effort on my part. I stopped writing because it was too difficult to understand and get my point across in written words. Even my speech took a blow and it got set back some.

The longer I try to verbalize- the more my frustration levels rise until my brain stops working because it is overwhelmed. It's a vicious, circular, downward cycle.

One of my favorite shows on television (streaming) is Agents of S.H.I.E.L.D. Don't ask me why 'cause I dunno. I'm not even a follower of comic books. I believe the last one I read was the Archie's way back in 1969. It's just a quirky little waste time show. One of the characters suffers from oxygen deprived brain cells from a drowning incident. As a result, he has expressive aphasia. I watch as he struggles to find the correct word and the Mack character plays twenty-questions with him until he finds it. Boy, can I relate to this. I lose words all the time. It is better now because I might be able to string whole sentences together without losing a word now, but it has been challenging to get to this point.

Like the brain damaged, supporting character, Leo Fitz, I know exactly what I want to say in my brain, but it gets lost by the time it gets to my mouth. It's lost in translation. When it comes out of my mouth, if it makes it that far without pausing, I'll know I said the wrong word. Then, I'm back tracking trying to find the right word if I utter it.

It's easy to laugh it off by saying I'm brain damaged, but it isn't a humorous laugh. It's down right embarrassing and frustrating having simple, verbal conversations. Writing is different although that is challenging as well. When I first started writing  Don't Get Your Panties in a Wad after my stroke, it was full of (XXX description of a word) because I couldn't recall the word I was looking for. Added to this learning to type one handed and you had a whole lot of relearning going on. I had slight dyslexia too which compounded my efforts, but I kept writing hoping it would get better. I kept writing until my second stroke totally FUBARred my comprehension. I finally stopped writing except for a few writing exercises, answering emails, and this blog. My second stroke totally scrambled my eggs for brain in how it was wired or rewiring itself.

So how do I write this blog if I'm so messed up?

• I have a topic I want to write about in mind. That's the first line on the blank blog page.
• I list three to five items concerning the topic. That's the next thing bulleted like this.
• Then I write the point of bullet.
• Then I write a personal observation or example of what I am talking about. I always connect it personally because that's what my readers want to know.

Example of  my writing before editing

Yes, it's a basic outline used in most writing. I've never had a use for detailed outlines before my stroke, now I can't even write a blog without one. Sometimes I'm even missing words as I type and don't catch it. Next I find pictures to help me illustrate what I'm trying to say to help me. In the initial blog post there are a whole lot of misspelled words and (XXX description of word)s.

Then comes the painstaking editing where I correct the misspelling and try to fill in the (XXX)s. Filling in the (XXX)s may take days to do.  But I do it because the only way to learn or relearn to do it correctly is to keep at it. 

The same thing in speaking. I just keep talking. Yes, there are still pauses in my speech pattern. Yes, I still lose my words in mid sentence and like a lost little pup, I'm scurrying around in my brain trying to find it.  I still utter words that have nothing to do with what I'm trying to say. This is life with expressive aphasia.

As a listener, you may have to play the twenty or forty question game to understand exactly what I'm talking about, but I am still recovering and may be for the rest of my life. I may be slower with the aphasia but by no means does it reflect my intelligence. Think about that for a moment. My brain during a brief pause (now under a minute) is sorting through a hundred words or more to get my point across. How many of you normal people can say that? It takes more brain power to communicate with aphasia, but with time and reconditioning, it can be done.

Nothing is impossible with determination.