When I first began my career as a speech pathologist, I worked in the rehabilitation unit of a hospital, primarily with stroke patients. It was a challenging, yet very rewarding experience. I had no idea at the time of course, that the cousin I grew up with as my age mate and best friend would suffer a stroke in his 50s with no apparent cause. Since his stroke, Dave has worked with other stroke survivors, caregivers and medical personnel, lending his insights and humor to help them on their journey down a life altered path.
The following is his talk Imagining. It describes how a person feels after suffering a stroke far better than anything I have seen. At its conclusion, I’ve included the poem I wrote about Dave after his stroke.
Imagining
By Dave Valiulis
My name is David, and this is a new me.
For no apparent reason, in March 2008, a clot reached my brain, giving me a stroke. As a result…
My right side didn’t work at all and I couldn’t speak at all for a while. Back then, I figured this wasn’t permanent, that soon I would snap out of it. But I was wrong. It’s been a long 3 years. But I can walk again, and I can do a lot of things with my right hand now.
But I’m here to talk mainly about my speech and the hurdles it presented to me at first…
Imagine if you had any of the following 3 conditions:
- First, imagine knowing what you want to say but you can’t think of the words to say it, to have every thought be at the tip-of-the-tongue. There, but unreachable. This is called expressive aphasia.
- Second, imagine not being able to remember how to make your mouth say the words you want to say, groping to find the right mouth positions to say a word. This is called apraxia of speech.
- Third, imagine not being able to say words clearly or loudly enough. This is called dysarthria.
Now imagine suddenly having all 3 of them at once. This was me in 2008. Try to imagine what it was like when I tried to speak back then.
- First, I had to form the thought in my mind. So far so good.
- Then I had to see if I could remember the exact words for that thought. Sometimes that was hard due to my aphasia.
- Then I had to see if I could remember how to move my mouth to make the sounds for those words. Sometimes that was hard too due to my apraxia.
- Finally, I had to speak loudly enough and without slurring to be understood. Sometimes that was hard due to my dysarthria.
- And if the person said “Huh?” I had to figure what I did wrong and start the process all over again.
When I had my stroke, everything changed …
I was a professional writer – but now I was being asked if I knew the difference between yes and no, and had to relearn how to make every sound.
I had always been a good talker – but now I was being praised because I could sing Happy Birthday.
I had always loved being around people – but now I was afraid to answer the phone or to order anything at a restaurant.
I had always been good at word games – but now I confused he with she and will with would.
I had a PhD – but now when I tried to speak in public, people sometimes thought I was retarded.
I had always been able to write quickly and easily – but now it took me ages to make even the simplest email without leaving out small words like the and of.
I had lived with my partner for 30 years – now I couldn’t say his name…or even my own.
Of all the types of aphasia out there, I’m glad I had expressive aphasia. They say that this type is very hard on the person who has it because they are aware of their difficulties, which can lead to emotional problems like depression. This may be true, but I would not have had it any other way. Because …
- Being aware of my problems gave me the fire to work hard.
- Being aware of my problems gave me the ability to see my own progress.
- Also, my comprehension and reading were not affected. And it made it possible for me to make complete sentences — with effort.
And with lots of effort, I am here 3 years later… the new me is a quieter me, but it’s still me. I’ve made lots of progress – thanks to my therapists, my family, and my husband. They have been my cheerleaders, and I love them all.
Thank you.
— Talk given before students in the “Communicative Disorders” class at University of California, San Diego.
Dave
He opens his eyes
to see his little dog,
jumping, nudging,
paws at eye level.
Something’s wrong.
He opens his mouth,
damn it, Diggery, down,
but no voice escapes
to slice the silence into
recognizable pieces.
Stroke.
The doctors give no reason.
He’s thin, fit,
a vegetarian for god’s sake,
a nice guy, a Ph.D.
He’d fooled himself
(as do we all)
that following the rules
means immunity from
the vagrancies of life
befalling more careless folk.
And now, a hidden bomb has
exploded that myth into
a million shattered neurons.
But not a shattered life.
He is in there, whole.
His halting speech and
weak right arm do not define him.
His character, wit, good humor and caring nature do.
He’s still Dave.
Jude McCanse
You can find more information about Jude McCanse at her Etsy shop, Facebook and Website
Etsy shop: http://www.etsy.com/people/judebooks
Facebook: http://www.facebook.com/pages/judebooks/419292440509?ref=ts
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