Friday, September 27, 2013

Little boys,Sugar Smacks, XBox and World War III

When I started my blog, it was to be somewhat like a journal about my son.  For several years, the focus of my blog was my family. 20 months ago, the focus changed because of my strokes. Nevertheless  sometimes I go back to my original  idea and I  post "stuff" about my son.   

One evening when we were getting ready for bed, I asked him what he would want for breakfast the next day. He said, "Corn puffs."  I said that is not a good breakfast. He said, "Dad! This is a complete, wonderful breakfast." I reminded him that when I was a kid it was called "Sugar Smacks" and the new name is a marketing ploy. Ethan responded saying, "Well, Daddy, your are old and they are very new nutritious."

I was watching a PBS show called "Rick Steve's Europe." Ethan said, "What is that show? Torture?" I never told him about "Lawrence Welk" which was torture when I was a kid!

Heather commented that she pulled bunch of weeds out the neighbor"s driveway. Ethan said, "Seriously, Mom! What is wrong with you! Geez!"

I fixed a simple electrical issue and Heather said, "Hey!  We should keep you a little longer!" Ethan retorted, " should be sooner than later."

Watching the CBS news morning show we're getting ready for school, Ethan commented about Syria and all the wars. He said, "Are we getting ready for World War III?" That is kinda sad actually. 

This morning Ethan was deadheading some of Heather's flowers. Ethan said, Oh my gosh! I'm turning into Mom. What is wrong with me!"

I just bought a ruler that is very convenient. It folds in half. When Ethan saw it, he exclaimed "Dad! Your ruler is SO cool! Not bad for a hippie."

Ethan made sure that he licked a whole bunch of cookies so we could eat them.

Last night, I asked my son Ethan if he is excited to start third grade tomorrow.  Exasperated, Ethan said, "Dad. This is school. Of course I'm not excited." I have been duly chastised.

Ethan knows that part of my vision therapy involves using an "Xbox Controller "  My son said, "Daddy! That is a waste!  If you didn't have a stroke and we played XBox together, you would be much better. Now, you are not good at all! Never mind. You were bad before the stroke." 

It is great to go back and remember!

Saturday, September 21, 2013

"Aphasia!" Damn "affakeica" which I "see" when I "read" Aphasia

Last June, a year ago, I went to the Idaho State University's aphasia group for a two-week intensive therapy session.

There were eight participants and we all had varying degrees of difficulty with communication and other things.

For two weeks we all heard our stroke stories. We shared tears and joy. It was heartwarming and heart wrenching at the same time.

So what is aphasia? Here is a very good definition:

Aphasia is an impairment of language, affecting the production or comprehension of speech and the ability to read or write. Aphasia is always due to injury to the brain-most commonly from a stroke, particularly in older individuals. But brain injuries resulting in aphasia may also arise from head trauma, from brain tumors, or from infections.

Aphasia can be so severe as to make communication with the patient almost impossible, or it can be very mild. It may affect mainly a single aspect of language use, such as the ability to retrieve the names of objects, or the ability to put words together into sentences, or the ability to read. More commonly, however, multiple aspects of communication are impaired, while some channels remain accessible for a limited exchange of information. It is the job of the professional to determine the amount of function available in each of the channels for the comprehension of language, and to assess the possibility that treatment might enhance the use of the channels that are available.

Fast forward to 14 months, last Friday I had a meeting at Idaho State University trying to set up an aphasia support group.

I saw two of my friends from the ISU Aphasia group that I haven't seen in 14 months. Also at the Friday meeting, saw women that I know because of the St. Al's stroke support group. One man I did not know before.

It was like old home week. It was great to see the ISU group.

Several people commented that I don't seem to have any communications issues at all. I just don't realize that my recovery is going so well.

Even though I can't read very well, at this point most people can't tell that anything is wrong with me. My apraxia is gone for the most part.  My right arm is not paralyzed anymore. To the outside world I seem very normal. 

The new gentleman that I met on Friday told me something like "you don't have any issues like every one of us!"

I realized that I am luckier than I thought. Certainly I have issues with reading and maybe comprehension sometimes. 

But, I still have Aphasia. When I type, I need a computer or an iPad. I cannot “write” any other way. I cannot address a card. I cannot address an address! I simply cannot hand-write anything.

I am grateful that ISU is forming this group. 

I do want to help in any way that I can. But, I know that I have limitations, but I continue with my recovery. But I am blessed in so many ways because I can communicate so well. Some cannot, and that is a lonely thought.

Great people!

Tuesday, September 3, 2013

The Myth of Sisyphus and strokes

When I was a child, my parents divorced, and my dad moved from Twin Falls, Idaho to Boise, Idaho.  I think that I have travelled back and forth at least 500 times….maybe 1,000 times.  A very small town called King Hill was about the midpoint.

King Hill was called “King Hill” I assume because there is a large plateau that resembles a crown. Maybe that was just my analysis. But, I always assumed that town was called King Hill because of the prominent  plateau.
The concept of a therapy plateau was always a consideration. Even when I was in the hospital, the doctors and therapists cautioned me about that. At that point, I wondered about they were talking about. To have a plateau, it seems that you needed to start before you could plateau.

I thought a lot about King Hill because, in my head, I was so concerned that I was going to plateau. That desert plateau represented my journey.  

One of my favorite books is “The Myth of Sisyphus.”  Wikipedia describes the book in this way: “In the essay, Camus introduces his philosophy of the absurd: man's futile search for meaning, unity, and clarity in the face of an unintelligible world devoid of God and eternal truths or values. Does the realization of the absurd require suicide? Camus answers: "No. It requires revolt." He then outlines several approaches to the absurd life. The final chapter compares the absurdity of man's life with the situation of Sisyphus, a figure of Greek mythology who was condemned to repeat forever the same meaningless task of pushing a boulder up a mountain, only to see it roll down again. The essay concludes, "The struggle itself [...] is enough to fill a man's heart. One must imagine Sisyphus happy."

It the 20 months since my strokes happened, my journey has be hard…incredibly hard. I have been discouraged. I have thought about giving up.  I have wondered what my life will be like in two years. Three?  Ten? 

But, when I thing about giving up, I just cannot do that. I have so much to live for. My wonderful son and my incredible wife who supports me in the dark moments when I wonder if this is all worth it. My brothers. How do I deserve such brothers. And my friends. Even when I wanted to give up, no one would allow me to wallow in self-pity.

So, in world, I could not give up even if I wanted to. Again, I have so much to live for, and I believe that my strokes happened for a reason. I am destined to help people with my story and give back in some way that I cannot fathom yet.

In the beginning with the strokes happened, my progress was incredible rapid. Through the months, my recovery has astounding even though some of the changes have been subtle , but the recovery is real and ongoing. I am still eager to “be done with it,” but my recovery will be ongoing throughout my life.

Sometimes, people ask me “are you plateaued?”

A very clinical definition  of plateau is: “Termination of motor rehabilitation is often recommended as patients with cerebrovascular accident (CVA) become more chronic and/or when they fail to respond positively to motor rehabilitation (commonly termed a ‘plateau).”

I am not plateaued! I have started a new round of therapy called vision therapy. I have full and very busy life personally and professionally even though I do not really have a job other than therapy and trying to make a difference.

So, like Sisyphus, “The struggle itself [...] is enough to fill a man's heart. One must imagine Sisyphus happy."

I am happy and grateful.