Real Life: Peer Counsellor Shares Support
The father of medicine, Hippocrates, had a word for it some 2500 years ago. The disorder we now call stroke he labelled apoplexy, meaning thunderstruck. Today, any stroke survivor can confirm just how close the old boy came in describing the illness.
“It changes everything in the blink of an eye,” says Art Lepres, who nearly 10 years ago, at age 38, survived a stroke. “It’s totally invasive in all aspects of your life. It alters everything: Your perception of yourself and others” perception of you; your identification of yourself in terms of who you are and what you do.”
One of the most difficult aspects of the illness, he notes, is the fact that it allows no time to adjust to the situation. “With stroke you have to learn to accept it once you’ve been neurologically impaired, which can complicate the recovery or acceptance process.”
Lepres had been troubled by two small warnings. He’d had two TIAs or transient ischemic attacks, indicating a temporary blockage in an artery in the brain. Stroke-like symptoms disappeared, but left him concerned enough to check with his doctor and, on another occasion, to go to the emergency department of a large Toronto hospital. Although ey did initiate some tests, “the medical people never mentioned the prospect of a stroke to me,” says Lepres. Unfortunately, as many as 20 per cent of the people who have had one or more TIAs are at risk of having a stroke within a year.
“I didn’t even know what a stroke was until I had one,” admits Lepres. But remarking on his trip to the ER, one of his office colleagues had noted “It sounds like a stroke.” Lepres remembers replying “I don’t know what that is.” Then, he says wryly, “I proceeded to have one.”
By the time he made it to the bathroom in the early morning of July 7, 1989, Lepres knew something was terribly wrong. He collapsed there, semi-paralyzed, only to reel back into the bedroom, falling, knocking over furniture, terrifying his partner. In a panic, she called his doctor and 911. He was whisked away to nearby Sunnybrook Health Sciences Centre.
Over the next year, Lepres went through acute care, dedicated rehabilitation care and then six months of rehab as an out-patient. The aftereffects of a stroke are threefold, he notes: physical, neurological and emotional, and the many changes seriously effect the individual’s life. (Income may also decline as a consequence of the illness.)
Everything you undertake following a stroke is part of the recovery process, observes Lepres. “That includes all the therapies, socialization, emotional support, counselling.” Physical and occupational therapies need to be started as soon as possible, at the acute care level. “It’s fairly passive at that level,” he says, “but they should increase the therapies as you stabilize and carry on from there.”
There is life after stroke, as Lepres makes abundantly clear, even though it may be different from a pre-stroke existence. He’s determined to promote public awareness of this fact to show stroke survivors there is hope and a reason for optimism.
In the early 1990s, at the suggestion of a former client, Lepres asked for a meeting with the president of the Heart and Stroke Foundation and discovered they had been working on an initiative to do more in the area of stroke. Since then, he says, “I’ve been the drum beating in their ear constantly.”
He’s a member of the Stroke Planning Committee and chair of its Stroke Recovery Subcommittee. They produce educational and informational material for stroke survivors and their families. He’s also very involved in peer counselling.
The physical, occupational and speech therapy needs are reasonably adequate, says Lepres, although he’s worried that with the closing of beds across the country, people may be sent home too soon or perhaps will not receive the therapy they need. Large urban areas like Toronto have dedicated rehabilitation centres; beyond these settings, it may be more difficult to maintain support networks. He wants to see a national network of survivors and their families promoting social activities and interaction for recovering stroke survivors.
Peer support is critical for people hit with a stroke. “There’s an emotional shorthand that takes place,” he says. “Recent survivors are dealing with their families who love them and staff who, for the most part, are loving and supportive. Oftentimes, an emotional bond can be developed immediately with a survivor because you share a knowledge that others share intellectually but not emotionally — not at core level.
“Besides,” he notes, “it’s good for the other survivors to be involved helping others. It pulls you out of yourself and allows you to strengthen somebody else, which in turn, strengthens you.” Lepres works at maintaining a positive outlook. The idea he says is to be positive, but not a Pollyanna. Each survivor has to come to terms with the idea that “I will do the best possible with what I have, and I will express gratitude for the things I do have and will work on the things that I can.”
He cautions stroke survivors that every person and every stroke is different. “Don’t compare yourself to others. You can only get into trouble that way,” he says.
Dr. Ken Walker practises medicine in Toronto and also writes under the pen name of Gifford-Jones.—>