“The injury I suffered had caused damage to the language area of my brain, leading to an inhibited ability to communicate. Over one million Americans suffer from this same condition. Some have trouble putting their thoughts into words (expressive aphasia). Others find it difficult to understand words spoken to them (receptive aphasia). For some, both of these statements are true. For people with aphasia, it seems as if their thoughts are on the tip of the tongue, but they cannot find the words to express themselves. It may seem as though others are speaking in a foreign language. The common characteristic of all people with aphasia is their limited ability to communicate in words.”
---- From “Caring for Those Without Words: A Guide to Aphasia”
By John A. Liechty, with Justin B. Heinz
Sometimes people don’t heal completely. Sometimes even the best medicine can’t make them whole.
John, who recently retired after working for 23 years as a housekeeper at a psychiatric hospital in Goshen, Ind., is one of those people. For more than 35 years he has lived with a condition caused by a ruptured aneurysm and bleeding stroke. John’s condition is called aphasia, a language impairment that makes communication difficult. The struggle is ongoing, something like walking into a stiff wind that never lets up. John, who had earned a master’s degree shortly before the aneurysm ruptured in May 1978, retains his intellectual bent. But words sometimes come slowly, and with difficulty.
“Aphasia isn’t about intelligence,” John says. “It’s about expression. Some people with aphasia have trouble understanding words; others have trouble expressing them. I can talk to you one-on-one pretty well. But if there is one other person talking, I have trouble. There are a myriad of problems then for my brain. Too many details.”
John recalls the time he ordered a sandwich at a popular restaurant. He asked for a turkey sandwich, potato chips, and coffee. When he was served the sandwich, he noticed something was missing. But he couldn’t say the word for the item that he wanted. He couldn’t say “pickle.”
“I know the word, and I eat pickles,” John says. “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 his difficulties, John’s neurological recovery has continued throughout his life. “My progress is always improving,” he says. John’s son, Chris, adds: “He is a lot more fluid than he once was. His thought process is quicker, and he talks more.”
After retirement John moved to the Chicago area to live with his life partner, Sheila, a speech therapist whom he met through the e-Harmony dating service. Sheila, who is patient and quiet by nature, is a perfect match. Continuing to stay active, John works four mornings a week at a local food pantry and sings in his church choir.
For years John’s primary interest was to serve as an advocate and teacher, telling his 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. John has served as a consultant and resource for speech pathologists, nurses, community groups, and even a local hospital. He helped start Goshen’s aphasia support group, and he has served, since 1991, on the National Aphasia Association’s Advisory Board. His resume includes 30 presentations, given throughout the United States. “A pretty good tenor,” he began a presentation about aphasia at a medical conference in New York by singing, “Nobody knows the trouble I’ve seen.”
“For me, like many others, aphasia was devastating,” John says, in an article co-written with Justin B. Heinz. “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.”
John received his 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 brain aneurysm, a balloon-like bulge on an artery, ruptured on his first day of work. He left early with a fierce headache and went home to his apartment. Eventually he went to Cincinnati’s Good Samaritan Hospital, where he was surgically treated by Dr. John M. Tew, a neurosurgeon with the Mayfield Clinic.
John’s family recalls that there was some debate about whether John should undergo surgery right away. Dr. Tew insisted, and that decision likely saved John’s life.
John was discharged from the hospital three months later and began his long, slow recovery. “After my operation, I couldn’t communicate,” John recalls. “I couldn’t talk to my friends or even my son. I could not communicate until I started with a good treatment plan. I had to re-learn my ABC’s.”
John and his wife were separated at the time of the aneurysm rupture, and they divorced in 1980. In 1981 John moved to Ann Arbor, Mich., for treatment at the University of Michigan Aphasia Program. The clinic drew people with aphasia from all over the United States. John stayed a year for comprehensive therapy, then moved to Goshen to be near his parents and siblings.
Although John knew he would never be able to pursue his intended career in social work, he considered himself fortunate. “A lot of persons with aphasia cannot go back to work at all,” he says. “Fortunately, I found a job that I could do.” John’s co-workers threw a farewell party for him when he retired in 2012.
John, who is unable to write on his own, uses voice-recognition software on a computer to facilitate written communication. For years, a friend and resource person visited him for an hour each week to check in and assist him with his writing and speaking projects.
His lifelong love of music also continues, unabated. John’s son, Chris, points to music as 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 4 years old when his father’s 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 disabilities.”
John was not the first in his family to suffer a stroke at a young age. A first cousin died at age 21 following a bleeding stroke. His mother, who is no longer living, became aphasic following a second stroke. “We had a common thread with language barriers,” John says.
Life hasn’t been exactly kind to John, but he is nonetheless grateful for what he has. “I’m lucky to be kicking,” he says. “I’m lucky to be alive and well.”
Hope Story Disclaimer - "John's Story" is about one patient's health-care experience. Please bear in mind that because every patient is unique, individual patients may respond to treatment in different ways. Results are influenced by many factors and may vary from patient to patient.