Friday, March 30, 2012

Brain Injury Awareness Month

Me, Jane LaFazio, and my husband, Don Strom

March is Brain Injury Awareness month. My husband, Don, has a brain injury as a result of a brain aneurysm in 1992. Don has aphasia (Aphasia is an acquired communication disorder that impairs a person's ability to process language, but does not affect intelligence. Aphasia impairs the ability to speak and understand others, and most people with aphasia experience difficulty reading and writing.)

A friend of ours, Dave, also has aphasia and spoke about it last year to a group of students. I asked Dave for a copy of his talk and he generously shared it.
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 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 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.
1.     First, I had to form the thought in my mind. So far so good.
2.     Then I had to see if I could remember the exact words for that thought. Sometimes that was hard due to my aphasia.
3.     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.
4.     Finally, I had to speak loudly enough and without slurring to be understood. Sometimes that was hard due to my dysarthria.
5.     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.
Dave Valiulis
You may wonder why I didn't publish something my husband had written. It's been 20 years since Don's brain injury and there's no way he could write something as clear and articulate as Dave did. It's not for lack of trying though!

March is National Brain Injury Awareness Month. Don and I have been involved in the San Diego Brain Injury Foundation for nearly 20 years.


  1. Oh Jane, my husband has dysphasia too after a stroke 15 years ago, and cannot read or write fluently after being a drama teacher. He finds it try hard to learn mechanical operations like using a cell phone or computer too. Unfortunately other physical problems have now left him unable to do much gardening which helped him fill his days. Music plays a big part of his life thank goodness. Love to you both,

  2. Jane thank you for posting this .The speech from John was amazing. You and your husband are amazing people, hope that doesn't sound patronising. Love to you and your husband and Jill and hersxxlynda

  3. Wow! Thanks for sharing David's speech. I used to be a speech pathologist and occasionally worked with people who had strokes. It is very enlightening to hear their thoughts!!!

  4. Thank you Jane for sharing both Dave and Don's stories.

    both are very moving. I had know idea hoe accomplished Don was ! he has done so much between his HP career and all he has done since his injured.

    all I can say is what a guy, what a gal and what a couple!
    so happy to know you Jane.

  5. Jane: I suffered a minor brain injury three and half years ago when I was struck by a bicycle while out walking Zoe, my dog, in a park. I was unconscious for about 10 minutes and I have no memory of the accident and very little of the following days; it took almost 5 months to finally get the diagnosis through neuro-psych testing. Because it was "minor" it wasn't taken seriously and only now do I realize that a part of me will always be missing and just how much it has impacted my life. Awareness and education are key and there is still so much to be done. Thanks for your post - I realize how lucky I am - the damage could have been much worse - but it also made me face, finally, what damage was done!

  6. thank you for sharing.Very moving. We seldom realize what challenges people face.. You both have such beautiful smiles.. they brighten the day.

  7. Thanks for this, Jane. It really helps to understand.
    Don's been through a lot and how lucky he is to have you by his side.
    You are both such "fun to be around" people. We don't see nearly enough of you. Let's get together again soon.

  8. Thank you Jane ,Don and Dave. Becoming aware helps all of us to be more understanding. My father had ALS and his speech was affected along with paralysis of most of his body. His brain functioned perfectly but it was very difficult to communicate. So I know of what you are speaking. Take care.

  9. What a nightmare situation for an intelligent, educated man to find himself in. How brave to keep plugging away at coping with each day. I wish you both well and am full of admiration for your cheerfulness and strength.

  10. thank you for posting...very informative

  11. I've been following you for a while now, and I'm always amazed by the energy and cheer you share, along with the inspiration you leave behind. I look forward to seeing your name pop up on my e-mail, and I marvel at your photos and your textiles and your sketches. You have always impressed me as a most giving and nurturing individual. When this post showed up, it was obviously something different; and after reading it, I understand more about the very special bond you have with Don - the one that shows in every photo of the two of you. I'm sure his life is frustrating beyond measure, and I'm also sure that his challenges are lessened by the closeness you share and the support you bring to each other. You just can't take that away. I really appreciate your sharing his story and David's speech as well. We have too little patience sometimes, and too little kindness and understanding of what people might be going through. I always feel humbled and privileged to find myself in the presence of real-life, honest-to-god heroes. That's who you are.

  12. This is how i imagine it is for my son with autism.... I can't be sure but it seems he knows what he wants to say but can't and so therefore doesn't try very often.... Thanks for sharing this post!

  13. Thank you for sharing this Jane. It helped me understand something in my life.

  14. Hi Jane. Thanks to you, Don and Dave for sharing what this problem is truly like. I have a relative who has, at least, aphasia, and while I suspected the difficulties, knowing the problem helps me to help them.

    I, too, always look forward to your posts. Your cheerful disposition reminds me to be grateful for all I have and try harder to spread joy.


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