My Aphasia

By: Chuck Hofvander

I woke in Milwaukee and thought “I wonder how I got here?” I was confused and not in Milwaukee at all. Over several days I came to realize that I had had a stroke.

When I regained my senses, I accepted that I could not walk or use my right arm but I was confused because no one could understand my speech. That puzzled me. In the past I had prided myself on my ability to communicate but now no one could understand me.

Before the stroke I had been a senior project manager at Xerox for 6 years. I was a senior project manager at Zurich Insurance, and for 21 years I was employed by CNA in various positions. I had a wife, two kids, and a house in the suburbs. I rode a bike an average of 2,500 miles per year. I was happy. To my knowledge, I didn’t have an enemy in the entire world. To paraphrase a line from the “Wizard of Oz” “it’s not how you love, but by how much you are loved by others”. Well that fit me to a tee. It took the stroke for me to realize that though. I received hundreds of letters, cards and e-mails. They are still coming and it’s been almost two years.

Over time I learned I had a brain disorder called “aphasia” and that it had no known cure. I just had to learn to live with it. Well, for me the news was devastating. Now, I was locked inside this big body and I was unable to communicate.

Through hard work and perseverance I improved a great deal. Yet, I’m not nearly back to the way I was and that is quite frustrating. I can “think it” but cannot “say it’ or “read it” or “write it.” My mind has a will of its own.

Aphasia does not affect intellect and that is what’s so frustrating about this disorder. Because aphasics speak haltingly or not at all, people often assume they are mentally ill or mentally challenged. It is one of the most heartbreaking and devastating of disabilities. I know because I have difficulty communicating with my two young sons.

But my aphasia has a bright side. I made several friends since I became aphasic that I would not have made if nothing had changed. Len, Mary Lou, Barry, Dick, Janet, Mike and others too many to mention in this short essay. I truly value their friendship.

My relationship with my “new friends” is substantiality altered from the “friends” I made before I had aphasia in that they understand what it’s like to have this disability. I am somewhat uncomfortable with someone who has not had aphasia because they do not know what it’s like to struggle with every word you speak. With those who share the same disorder I feel as though there is a common bond between us. I share a ride with Len going downtown and we often joke that each of us are prone to lose our concentration at times and we joke about it.

As I mentioned previously, my aphasia has improved with time. Now along with my wife, I am participating in a project sponsored by Northwestern University. It is called the Midwest Regional Aphasia Conference. I am also volunteering my services to many studies at the Rehabilitation Institute of Chicago (RIC) that include the Lokomat (see photo below), a study to restore movement in my right arm, and in several writing exercises and conversation groups.

As I mentioned earlier, I was into bicycle riding in a big way. Well, my cycling buddies bought me a high performance tricycle (see picture below). Last summer, the summer of 2005, I rode over 1,000 miles and I plan to do more this coming year. I feel like I didn’t have a stroke at all when I’m riding. I feel free!!!!!

I’m learning to live with my aphasia but I am frustrated by it none the less. I’m learning to accept that I will never get back to the way I was. I have to realize that I’m stuck with aphasia but I can’t let my disability get me down or give up. I now realize that in a way the stroke was a blessing in that I’ve made new friends, reaffirmed some old ones, gotten closer to my wife and children, and become more introspective in my way of thinking.

My stroke and aphasia has taught me several things. The first is not to worry about the little things. I used to worry about the littlest details. Nothing was too small for me to worry about. Second, I don’t fear death anymore. Now that I was near death, death doesn’t scare me. And third, I have learned to enjoy life. It is precious.