Jan Thomas's Why
It was December 28, 2010, the time of year when many people indulge with abandon, but Jan Thomas resisted. Instead, she spent her lunch break in the office gym, just as she did two or three times every week.
Jan was a partner in a large law firm in Richmond, Virginia, specializing in mergers-and-acquisitions. "My clients kept me busy, and I relished the midday opportunity to keep fit and burn off some steam," she said.
On that day she was squeezing in a workout before a 2 p.m. meeting, but shortly after she began peddling the stationary bike, she lost consciousness.
She woke up in the hospital, terribly confused and unable to speak. She didn’t know that she had had a stroke and with it, aphasia.
Jan was determined to return to work, but seven weeks of inpatient rehab turned into eight months of outpatient speech, physical and occupational therapy. She learned to walk again, use her paralyzed right arm and communicate despite aphasia. But the longer rehab lasted, the more she realized she was not ready to go back to work — and might never be.
Spasticity is another deficit of her stroke, which limits her ability to drive. As a result, she and her husband Brent moved from their home on 9 acres outside of Richmond to a condo in the city. "Even now four years after the stroke, spasticity in my right foot and arm limits me to local routes and shorter periods behind the wheel," Jan said.
Being at home was isolating, so when she received a call from her speech therapist that a support group for people with aphasia was forming, Jan told her she wanted to join. "Some of us could talk, some couldn’t, but everybody could understand what each other was going through," Jan said. At the second meeting, she was asked to be president.
"It’s really heartrending to think that these are people who have so much to give but can’t because their language is compromised," Jan said. "I don’t want to say it’s the worst, but it’s incredibly frustrating not being able to communicate easily. It’s a big part of what it means to be human." It is her observation that people with aphasia often take up something visual — painting or photography — because they have so much to share. "We want to contribute to society, we just need a little help to get there. I hope I have a long time to live, but I don’t want to spend my last years isolated. I want to see and do things."
As a group, they came to the conclusion that education is paramount for getting people to understand aphasia, and in that way they could combat the isolation. "Most people have never even heard of aphasia," Jan said. "I certainly hadn’t and not many in our group had heard of it before they acquired it."
The group wanted to find a way to help others with aphasia be better understood so they came up with the idea of doing a documentary video. The result is an 18-minute video titled, "Patience, Listening and Communicating with Aphasia Patients."
The purpose of the video is to educate the general population so that they understand what aphasia is and what the communication needs of people with aphasia are.
"We want to facilitate communication between the typical person and ourselves. For instance, we don’t need people to speak louder; aphasia isn’t about hearing. What we need is for them to speak more slowly," she said. "At other times survivors with aphasia can’t find the right word and need help — and patience — from the listener. Sometimes we have to talk around the right word. We have things to say but it takes understanding both ways to create successful communication."
The documentary has had a great response. "I think part of it is that the documentary fills a need — people really don’t know much about aphasia.
"Our group is dedicated to creating a world where we can contribute, but we need a little help, patience and understanding to get there. That is my why."
Watch Patience, Listening and Communicating with aphasia patients:
