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I was faced with the diagnosis of aphasia following a stroke in 1992.  Well, that is not right.  I had aphasia, but all I knew is I could not communicate or talk for about six weeks after the stroke.  

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Break the Silence

Everything I write seems to do with my surgery, my stroke, or the ramifications of my disability.  Stroke is such a large part of my life. My health was always something I had taken for granted.  As my father was always saying, I did not know my own mortality.  But I want to tell a story about the time, after the stroke, that I learned how to talk. At the time, the doctors did not know, or seemed to care, if I would ever regain my speech--they were more concerned with keeping me alive.  It may seem like boring stuff, but to me, regaining speech was a gift from the heavens.

I had a stroke during brain surgery in 1992.  I thought I was ready for the serious operation. The neurological team suggested a will be drawn in case of death and a Living Will or directives so in case of brain death, it would allow my wife to make the decision to take me off of life support. With all this discussion about death, I never even thought of the myriad of other possibilities that were out there, like being crippled in some way. I don't know, I guess I thought I was invincible.

My memory is lost the last few days before I went to the hospital, or for that matter, the first two weeks I was in the hospital. I became conscious slowly, memory in bits and spaces of reality and dreams. The first thing I remember after the surgery, the first conscious feeling was profound and unending loneness.  I remember looking out of my bed early in the middle of the night out the hospital window at the Renaissance Hotel, a tall building I once read that looked like a Bic lighter. That image and feeling still haunts me, and I don’t know why. I somehow knew where I was and that I had brain surgery, but I knew that something had gone terribly wrong during the surgery. I knew that time had passed. What I did not know was how much time.  

Could it be a year? I remember that question being paramount in my mind the next day. I did not find out the answer for several days when I spotted a newspaper and read the date on the newspaper. And this was several days after I became aware, or could remember.

Why is everything different? Why am I so damn weak?  

Something must have went wrong with the surgery; something had not gone according to my plans. I was in the intensive care unit and surprised to find my condition. I was hooked to all these machines with tubes and wire bundles running everywhere. The hospital had a monitor, a T.V. looking device, mounted up over my bed, with wires connected to my head. There also was a nurse who stayed in my room constantly. Most of the time, she had her head buried in a personal computer. But she did bring a secure feeling of everything was going to be all right. There was this other cabinet, on wheels, about two feet square and about four feet high. This was used to keep bandages, extra tubes, tape and assorted sundries. I thought at the time it was going to take me years to pay the bill.  And I was right too.

As I became conscious, I realized I had no feeling on the right half side of my body. It was like a dentist had shot Novocain from my toes, up my leg and body, down my arm, and up into my face. It was like the right half of my body did not exist.  My right hand felt foreign to me, like another person’s hand feels.  Naturally, if the hand doe not belong to you, how can you move it? My right side was dead to me. Oh, there was one thing more--I lost all ability to communicate.  

It was not that I could not talk anymore, but any form of communication was cut, like writing or pantomiming. For example, my wife would read to me the entrees off the menu, which I understood, but I had no way of communicating this to her. All I had to accomplish this was point to what I wanted. As they say, even a child could do it.  She would give me plenty of time to respond; however, the attempt wound up in failure. So I would have to eat what she selected or go without. My dad gave the problem of how to communicate with me careful thought. He gave me a tablet and a pen. I was very interested in the writing pad, and I took the pen up with my left hand enthusiastically -- and my mind just drew a blank. I could access that part of my mind just last month, but now it’s completely gone.  I could not form letters, even though I could read in short bursts. I was completely cut off from the world; frustration reigned in my life. By accident, I did find a way I could let people know how I was feeling by silently crying.  This I did often.

After about one month at the primary care hospital, I was moved to a rehabilitation hospital. I was anxious to go, ready to get back to life I knew. At the new hospital, my room was on the third floor. I found out much later that the third floor is where the hospital puts you if you are really messed up. The hospital was an older hospital, recently remodeled.  The food, in fine hospital tradition, was horrible. In the two months I was there, I lost about 35 pounds. The most wonderful thing in my room was the gigantic bulletin board. My wife put up all the get-well cards, pictures of my girls and family and letters letting me know people were praying for me.  That bulletin board was a huge emotional and psychological lift. The care that the nurses and therapists gave me was exceptional, treating me with dignity and respect. They would take the time to explain everything they did, treating me like a human being. By the start of the second week, I was busy with the rehabilitation of my arm and leg, learning to walk, dress, bathe, eat and live again. I could follow the therapists' directions during my exercises, but I still could not talk. I was getting good at pointing to what I wanted, but what I needed was someone to talk to--anyone with whom I could share the hell that I was going through.

Then, one day the physiologist came into my room and asked me to sing "Happy Birthday" to him. I thought he was nuts! The doctor then explained that the part of the brain that controls speech is different than the part that controls singing. I was ready to try anything, so I started singing, though the words did not come out clearly, but there was sound coming out of my mouth! I only got to the part of "happy birthday," then I broke down and started to cry. I had just about given up on ever being able to talk again. Singing "Happy Birthday" did not end my speech problems--just the opposite, it was the beginning.  But it was a start.

There was about two years of speech therapy, learning how to pronounce words clearly so others could understand me. I know the more I practice, the better my speech becomes. The good thing that has come from this experience is I know now how precious communication is to me. People may listen to my difficult speech, and feel sympathy for me. But having lived without any kind of communication makes me thankful for where my speech is today.                                          

Aphasia

     Speech.
     Communication with others.

     How do they know that I am in here ...
     Alive?

     I find speech the most difficult disability.
     Much, much more than the loss of my right arm or hand.
     Much, much harder than the loss of my leg or balance.

     With the loss of my speech also goes:
     My reading,
     My writing,
     My spelling,
     My intellect,
     My sanity.

Post Script

My hardest piece to rewrite, I believe.  I know that I have come a long way since I wrote Break the Silence.  But, Break the Silence is a strong experience that needs to be told well, and I have better skills in trying to pull that off.  Well, a little better.  Let you be the judge of how I do.  

Mark Kelso, my freshman writing professor at Richland College, suggested that I enter Break the Silence into Richland College’s writing contest held in the fall semester.  He said it would “make the 1st cut, and it might even win something.”  Little did I know that he was a judge of the writing contest. We were walking after class the same way, Mark to his office and me to the next class, I thought at the time by chance. But now I wonder if Mark had planned to have that meeting all along.  I think he knew of how embarrassed I was about my writing ability.  

I had been attempting to improve my writing because it was necessary to write well in college.  I was limited in my selection of vocations, with the loss of my right side and balance.  My dream was to get myself off of Social Security Disability Insurance and getting to make some real money, some other vocation that would give me the freedom to work where I wanted I had with the air conditioning skills that I could no longer carry out.  But that was a still a dream.  

Mark made a beautiful presentation to the class of our assignment.  He said he wanted from us a distinct moment in our lives, an epiphany, that we could describe fully.  He wanted 4 to 5 pages, double-spaced, in length.   Writing about myself was easy because my stroke cause me to have a great source of stories or topics that was unique to choose from.  And this I knew.  What I did not know was the improvement of my writing ability in the last year to be able to translate the stories to paper so that other people would find the stories interesting.  I had been working hard on my writing.  But, I knew that my singing “Happy Birthday” song had a great impression in my life, and I knew that that was going to be this topic of the essay.

Originally posted to KosAbility on Sun May 11, 2014 at 04:00 PM PDT.

Also republished by Social Security Defenders.

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