It’s the stuff that nightmares are made of: having a stroke in the dead of night while “roughing it,” a thousand miles from home and a world away from any kind of medical care.
In August, 1998, 53 year old Carol Schultz and her husband, Frank, were winding down for the evening in a campground off the Alcan Highway, in Northern British Columbia.
Along with another traveling companion, they had just finished the final leg of a 230-mile canoe trip down the Teslin and Yukon rivers, and were on their way home to Bellingham, Washington. It was late, and they were looking forward to getting some much-needed rest, but this idyllic respite turned out to be the most restless, horrific night of Carol’s life.
While her husband and their traveling companion easily fell asleep, Carol just couldn’t get comfortable. She drifted in and out of a bizarre, half-sleep state, and after an hour or two of spasmodic tossing and turning, Carol slowly realized that something was terribly wrong. She tried to call out to her husband, but although she thought she was speaking clearly, her speech had degraded into guttural grunts and strange noises. Carol was in the throes of an ischemic stroke that was wreaking havoc in the left temporal lobe of her brain.
Carol’s symptoms, her husband recognized what was happening. He knew they had to get her to a hospital as soon as possible, however there were numerous roadblocks to getting her there quickly: they were a half hour away from a phone; a helicopter couldn’t fly in immediately to airlift her; and they were camping on a 400 mile stretch of the Alcan Highway that was served by only one ambulance. "As soon as possible" became an agonizing, 16-hour ordeal, as Carol’s evacuation required an ambulance, helicopter, chartered airplane and other assorted vehicles.
Carol was admitted to an acute care hospital for six days, and then was discharged and returned home to Bellingham. She couldn’t express herself well and didn’t understand much of what was said to her, but because most of the damage was focused in the speech center of her brain, Carol didn’t go to a rehab hospital. Instead, she immediately started out-patient speech therapy that lasted three months. Two years later, she also worked with a speech clinician at Western Washington University for an academic quarter.
Formal speech therapy was Carol’s only “traditional” treatment, however the focal point of her stroke recovery program was an unorthodox “speech recovery strategy” that Carol developed, with the help of a friend who had been a teacher. Her friend helped Carol relearn how to spell, using a special phonics technique that provided unexpected benefits.
Using this special technique, Carol not only “sounded out” words but she actually gained a cognitive understanding of phonics, “mapping” sounds to letters and vice versa. Being able to visualize words in her mind became a key part of relearning how to talk and understand speech.
Recapturing her communication skills was important for Carol on many levels, but especially from a career standpoint. At the time of her stroke, Carol and her husband owned a small sporting goods store that dealt with all sorts of outdoor activities and travel. Carol was involved in nearly every aspect of their business from sales and customer service, to accounting and store maintenance, as well as teaching classes and leading excursions. So it’s no wonder she says that coming to terms with aphasia was the most difficult thing for her to do post-stroke; everything she did required the ability to communicate well.
Carol was eventually able to go back to work, but only because she had a husband and two grown sons to cover for her. She had to cut back hours and took longer to finish typical office tasks, but since her carpentry skills weren’t affected, she chose to spend more time carpentering. She enjoyed it more, too; even now, she considers working with wood to be her favorite avocation. Five years after her stroke, she and her husband retired and closed their business.
Before her stroke, Carol also volunteered her time, and handled various aspects of her mother-in-law’s needs (her mother-in-law struggled with Alzheimer's Disease). After her stroke, Carol had to jettison these personal responsibilities, plus any volunteer work that required reading and writing.
Despite her remarkable recovery, Carol continues to have some expressive/receptive aphasia, and difficulty reading and writing, yet she says she’s still the same person she was before her stroke, even if her language skills work differently. Once she was able to communicate better, Carol became more computer literate, so she’s been able to connect with others via on-line stroke support organizations. She also tutors an aphasic stroke survivor, makes herself available to talk with groups to share her experiences and recovery strategies, and, occasionally, is asked to meet with other aphasic people to encourage them and give them advice.
Carol and her husband, Frank, have been married for forty two years; they have two grown children and two grandchildren. Carol says that Frank was her “stroke rescuer” and her most enthusiastic post-stroke supporter. In addition to chauffeuring her around, Frank acted as her “translator,” note taker and editor. And, he kept the home fires burning, while Carol was consumed with other major projects, the most important of these being writing and self-publishing a book, entitled, “Crossing the Void: My Aphasic Journey,” which chronicles Carol’s struggle to recapture her language skills.
Carol says that aside from orchestrating her recovery, writing her book is without a doubt her greatest post-stroke achievement. She says she feels a sense of responsibility to share the details of her successful recovery, so that others can benefit from her experiences and recover more quickly, too. If you wish to contact Carol to learn more about her aphasia therapy techniques, you can reach her via the Stroke Network. Her user id is: AphasicSurvivor