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By: John A. Liechty

I work as a housekeeper at a psychiatric hospital in Goshen, Ind. For more than 30 years I have lived with aphasia, a condition caused by a ruptured aneurysm and bleeding stroke. Aphasia is a language impairment that makes communication difficult. The struggle is ongoing, something like walking into a stiff wind that never lets up. While I had earned a master’s degree shortly before the aneurysm ruptured in May 1978, words come slowly to me, and often with difficulty. But I still retain my intellectual bent.

 

Aphasia isn’t about intelligence. It’s about expression. Some people with aphasia have trouble understanding words; others have trouble expressing them. I can talk to you oneon-one pretty well. But if there is another person talking, I have trouble. There are a myriad of problems then for my brain. Too many details.

 

Once I ordered a sandwich at a popular restaurant. I asked for a turkey sandwich with no onions, potato chips, and coffee. When I was served the sandwich, I noticed something missing. But I couldn’t say the word for the item that I wanted. I couldn’t say “pickle.” I know the word, and I eat pickles. But I just couldn’t say that one word. After a minute or two, finally, some response in my brain said, “Ah, it’s pickles,” and then I was able to tell the cook.

 

Despite my difficulties, I have chosen to live well. I live independently, have a girlfriend I met through the e-Harmony dating service—a speech pathologist who is “a good, good match”—and attend church. I cannot understand the sermons, but I’m a pretty good tenor and sing in the choir. I began a presentation at a medical conference in New York by singing, “Nobody knows the trouble I’ve seen.”

 

Limiting my work to 32 hours a week gives me time for my primary interest—the role of advocate and teacher, telling my story so that caregivers, health care professionals, and social workers can better understand aphasia and what it means to those who are challenged by it. I have served as a consultant and resource for speech pathologists, nurses, community groups, and even the local hospital. I helped start the Goshen aphasia support group, which has a membership of 25, and since 1991 I have served on the National Aphasia Association’s advisory board. My résumé includes 30 presentations given throughout the United States and a half-dozen published articles.

 

All this activity got some attention. In February 2009, I received word from Ellayne Ganzfried, executive director of National Aphasia Association that I was to receive the 2009 Aphasia Advocacy Award. What an honor! The presentation was made on June 4 at a benefit performance of Night Sky (a play about aphasia) in New York City.

 

“For me, like many others, aphasia was devastating,” I said in an article co-written with Justin Heinzekehr. “Lack of communication often leaves people feeling isolated, depressed and angry. Aphasia erodes the social bonds that give life meaning. Everyday interactions with family, friends, and coworkers take tremendous energy. Many persons with aphasia succumb to depression or consider suicide when they find their condition unbearable.”

 

I received my master’s degree in social work from the University of Louisville in 1978 and was hired by Cincinnati’s Cancer Family Care to counsel patients with terminal cancer. The aneurysm, a balloon-like bulge on an artery, ruptured on my first day of work. I left early with a fierce headache and went home to my apartment. Eventually Iwent to Cincinnati’s Good Samaritan Hospital, where I was surgically treated and was discharged three months later to begin my long, slow recovery.

 

After my operation, I couldn’t communicate. I couldn’t talk with my friends or my family—even my son. I could not communicate until I started with a good treatment plan. I had to relearn my ABCs.

 

In 1981 I moved to Ann Arbor, Mich., for treatment at the University of Michigan’s Communication Disorders Clinic. The clinic drew people with aphasia from all over the United States. I stayed a year for comprehensive therapy, and then moved to Goshen to be near my parents and siblings.

 

Although I knew I would never be able to pursue my intended career in social work, I consider myself fortunate. A lot of people with aphasia cannot go back to work at all. Fortunately, I have a job that I can do. I’ve worked here for 20 years. I have limited ability to write on my own and use voice-recognition software on a computer to facilitate written communication. A friend and resource person visits me for an hour each week to assist me with my writing and speaking projects.

 

My lifelong love of music also continues unabated. My son, Chris, told an interviewer that music is a true bright spot in his father’s life. “Throughout the years of frustration with communicating and making social connections, Dad has always had his music,” says Chris, who was only four years old when my stroke occurred. “It was the one thing he retained from his pre-stroke years. Being able to at least harmonize with the music in the early years to actually singing along these days has been a huge factor in helping him to live with his disability.”

 

I am not the first in my family to suffer a stroke at a young age. A first cousin died at age 21 after a bleeding stroke. My mother, who is in her 80s, recently became aphasic following a second stroke. Now we have a common thread with language barriers.

 

While life may not have been exactly kind to me, I am nonetheless grateful for what I have. I’m lucky to be alive and well.

 

John A. Liechty

Goshen, Indiana