Aphasia: A world beyond words

By ABIGAIL BIMMAN
CJN Intern

Jack Geller has been active in the Jewish community for decades, but he couldn’t tell you about it.

He is an honorary life president of Holy Blossom Temple, was the youngest president of Jewish Immigrant Aid Services of Canada and was involved with Canadian Jewish Congress, among other activities.

Geller also had two successful careers – as a lawyer and as chair of the Ontario Securities Commission.

But he can’t speak about any of his accomplishments.

Five years ago, Geller had a stroke during the second Passover seder, and he has lived with aphasia ever since.

Aphasia is a communication disorder caused by injury to the brain, usually as a result of a stroke or head injury. People with aphasia are intellectually competent, but have difficulty with language. Aphasia can affect the ability to speak, understand, read and write, and can thus mask a person’s true intelligence.

An estimated 20 to 25 per cent of stroke sufferers develop aphasia, and at least 100,000 Canadians live with the disorder. Aphasia can be mild, manifesting itself in slow speech and searching for words, or extremely severe, to the point where a person has no speech at all.

Geller’s aphasia is severe. He makes a lot of sounds, but few of them are recognizable words.

“He can’t speak, but he can communicate,” says his wife, Sybil, who calls aphasia an “invisible disorder” that few know about. People with aphasia rely on pictures and other tools to help express themselves.

After the stroke, Jack was comatose for several days and completely paralyzed on his right side. He was told he would never walk.

“He recovered, amazing everybody,” Sybil said. While his speech will never be the same, Jack has seen improvement over the last five years.

“He can put some sentences together but not consistently. Aphasia is inconsistent. Just when you think you’ve got something, it’s gone… You think, ‘Oh wonderful, there’s progress,’ and then it’s gone,” she says.

“You don’t know what the trigger is because it doesn’t depend on being tired or being confused – this is one of the horrors of aphasia.”

She says Jack’s involvement with the Aphasia Institute has been a major factor in his improvement over the last half-decade.

“It absolutely saved our lives; it made sense of everything,” says Sybil, who describes her husband’s stroke and the period after it as a “very low time.”

The Aphasia Institute is a Toronto organization that focuses on training, education and outreach about the disorder. It also offers programs including conversation circles and recreational activities for people with aphasia, through its Pat Arato Aphasia Centre.

Sybil and Jack attended the 12-week introductory program for families. Since then, Jack has been a member of the Toastmasters International Aphasia Gavel Club.

“It’s unique, there isn’t another one in the world for people with aphasia,” Sybil says of the public speaking club.

She still attends the family support group. Both Gellers have sat on various committees at the institute and have been involved in fundraising. They founded the Jack Geller Fund. “We do everything we can to fundraise for it,” Sybil says.

Jack was 72 and had just retired when he had his stroke, but this is not the case for many others.

“Just think of young people, people who have a family and they’re a wage earner,” she says. “What do they do? Think of what it does to a family.”

She says their own family’s support was crucial to the healing process.

“I must emphasize the importance of family and friends in recovery, in quality of life.”

The Gellers’ seven grandsons continue to visit Jack for lunch regularly as if nothing has changed since 2002.

Sybil worked in health-care services all her life, and had an aunt with aphasia, but didn’t know what it was until Jack’s experience.

“I couldn’t pronounce it, I couldn’t even spell it,” says the former president of the Ontario Red Cross, who also sat on the board of the Ontario Cancer and Research Foundation for six years and was involved with the Heart and Stroke Foundation.

Sybil cites Wheel Trans as an example of why she refers to aphasia as an invisible disorder. Jack is not physically limited and therefore is not a candidate for the assisted transportation system. But since he can’t read much more than headlines and can get confused, using public transit is usually not possible.

“There’s just a myriad of things he can’t do,” Sybil says.

She says life can “never be normal,” but the Gellers do what they can to live it to its fullest. They have travelled worldwide and attend some theatre productions and concerts.

But aphasia continues to present challenges, Sybil says.

“When you have a powerful person you’ve lived with, who could take initiative – now he has to have his routine, and anything out of the routine confuses him. For someone who has been in control of not only his life… but contributed tremendously to the community, [it’s difficult to adjust].”

The Aphasia Institute is hosting an afternoon for Aphasia Awareness Day on June 14, 2:30 to 5 p.m., and the Gellers will be attending.

“Anything we can do to bring awareness to the public is important so that there is understanding,” Sybil says.

The institute’s event is geared to health professionals, people with aphasia and anyone who wants to learn more about the disorder. Called A Partnership of Hope, the afternoon features a prominent neurologist, Dr. Sandra Black, as the keynote speaker, as well as demonstrations of aphasia-friendly resources and programs, a speech by a Gavel Club member, a performance by the Aphasia Institute Drum Circle and a workshop for health professionals.

For more information or to RSVP, contact Michelle Christian at 416-226-3636, ext. 20, or by e-mail at mchristian@aphasia.ca.