Speechless No More!
Though her words are slow and deliberate, there is a lilting, lyrical quality to her voice. The words sometimes come intermittently, perhaps with fewer inflections and more pauses than most everyday conversations, but there is beauty in the imperfections.
For Phyllis Weiss, a 65-year-old survivor from Winthrop Harbor, Illinois, each sound she painstakingly — but patiently — forms is a triumph. In her quiet, halting delivery is an underlying strength and vitality. Qualities that carried her through an entire year of silence.
“I felt like a prisoner in my own body,” Phyllis said. “Not to say a single word … for weeks and months on end. Imagine not being able to speak your own son’s name or tell your husband you love him while your mind is completely intact and functioning just fine.”
One Summer Night
On the evening of August 21, 2007, Phyllis and her husband, Fritz, headed to bed after a day of playing catch-up following a two-week family vacation in Colorado. Despite the long drive back to Illinois and an afternoon full of grocery shopping and errand running that threatened to sap her energy, she was elated and anticipating the next chapter in her family’s life. During the trip, their son, Justin, had proposed to his girlfriend, Lisa.
“In years past, we always went to Colorado. Skiing in the winter, hiking and biking in the summer,” Phyllis said. “Justin has a favorite spot up in the mountains with a waterfall, and he took her there to pop the question. Oh, it was just beautiful and wonderful.
We went to bed expectant,” she added. “My mind was already on the wedding. We couldn’t wait to celebrate.”
But somewhere around 3 a.m., Phyllis, who was 57 at the time, woke up waving her left hand. Her right side was paralyzed, and she couldn’t speak. Suspecting a stroke, Fritz frantically called 911.
“I remember part of it. I remember him saying ‘Don’t leave me!’ I still cry thinking about it after that many years,” Phyllis said. “But the rest of the night is all a blur.”
She had had an ischemic stroke.
Clues to the Cause
Phyllis had long been hyperaware of the importance of monitoring her body. Her mother died of a stroke. Additionally, her father died of heart disease, and her brother has had multiple bypasses. Given the family history, she worked hard to minimize other risk factors such as high cholesterol, which she was diligently regulating through medication. She maintained a healthy diet and worked out five days a week, running and bicycling incessantly. But the uncooperative arteries in her brain had other plans.
Because Phyllis experienced the stroke in her sleep and the timing couldn’t be pinpointed, she wasn’t a candidate for tPA.
The stroke severely injured her speech center. The bubbly career woman was suddenly forced to communicate only with her eyes and through makeshift sign language and movement. It took some time before she even regained enough fine-motor skills to write or type again — this time, with her left hand. Doctors couldn’t tell her if she’d ever talk again.
Luckily the movement in her right foot and leg started to come back after a few days, but she still has weakness on that side of her body and does daily therapy at home on her right hand, arm and shoulder.
After five days in the hospital, Phyllis was transferred for a three-week inpatient rehabilitation stint. When that was done, she headed to outpatient therapy at the Rehabilitation Institute of Chicago (RIC) Northbrook, where she began the fight of her life. The half-marathons and 100-milea- day bike rides she had logged over the years paled in comparison to the battle to reclaim her voice.
“Fritz went in there and said ‘My wife has requested the hardest and strictest therapist here,’” she said. “I am a competitor, and I enjoy the challenge. I didn’t want a therapist who would coddle me, pat me on the head and give me a pass.”
The Grind of Moving Forward
To combat her apraxia, which makes it difficult for the brain’s instructions to be understood and carried out by a person’s speech muscles, Phyllis spent years in intensive therapy, where language had to start essentially back at square one.
Even after she graduated to outpatient therapy, Phyllis worked herself to the bone. For three years, her husband dropped her off at RIC Northbrook at 7:30 a.m. and picked her up around 3:30 p.m. or 4 p.m. on his way to and from work in Wilmette. Five days a week, she resolutely completed her pronunciation drills with Fritz in the car on both drives.
Therapy was scheduled from 8 a.m. to 11:30 a.m., at which point she was usually so tired she could hardly eat her lunch. But she’d hurriedly inhale her meal and spend the rest of the hour-long break in the gym on the treadmill, exercising to will herself back into running shape. Then the afternoon speech sessions would start, lasting until it was time to clock out. At home, she gave herself a reprieve only long enough to wolf down some dinner.
“The day-to-day grind of it was exhausting. It was a fulltime job — more than a full-time job, actually. I struggled from morning until night, went to bed and started all over again the next day,” Phyllis said. “I thought to myself ‘I’m a fighter, and I will learn to talk.’ Fritz and I never gave up.”
Retraining her speech muscles to emit certain sounds was no easy feat. For an agonizingly long time, the only word she could verbalize was “yes” despite the fact that her memory and mental vocabulary were unimpaired.
Practice assignments included the repetition of the “ee oh ee oh” phonetics and listening to the monotonous dialogue on the computer. Phyllis’s dearest friend, Jane Dorey, spoke into a tape recorder, carefully enunciating the numbers one through 10, or important words such as the names of family members for her to mimic. She listened to it on loop. The months of the year were the hardest. And she can still hear the drawn out “Fritzzzzz… Justiiiiin… Liiiiisaaaaa” in her head. But the repetition was necessary.
That, paired with Phyllis’s relentlessness, allowed her to advance and tackle full phrases and eventually sentences in the second year of therapy.
“I tried so very hard. I’d practice ‘How are you?’ during an hour commute each way but would feel miserable every time when I couldn’t get it out for the speech therapist,” she said. “When I finally uttered it for the first time, I was thrilled, and they all gave me the biggest hug. The therapists were my cheerleaders, my best friends throughout it all.”
Eventually one-on-one therapy sessions evolved into group settings. One frequent assignment was for students to call and place a food order for lunch. Although she struggled the most to speak, and other survivors in class were far more advanced, Phyllis was always the first to raise her hand and volunteer to be put in the hot seat.
“I’ve never been shy,” she said. “I don’t make apologies for the inability to speak, and I’m proud of that.”
No Shrinking Violet
Even now the war wages on. After spending the last five years working on her daily drills independently in the privacy of her own home, Phyllis knows she’ll continue to stumble. But rather than embarrassingly speeding past the potholes of pauses or slurs marring her speech, she embraces them. Rather than rushing past a tricky word, she pronounces it again, attacking it and forcing it into submission to ensure the listener’s comprehension. And in doing so, the struggle becomes dignified. Regal almost. The end result is mesmerizing.
Reliving that infuriatingly mute time marked by miniscule amounts of progress is emotional for her. But her willingness to share the most intimate details of her journey has made her the poster person for a local grassroots organization called Stroke Survivors Empowering Each Other (SSEEO).
As the star pupil who was enrolled in speech therapy at the RIC Northbrook campus, she caught the attention of the American Heart Association/American Stroke Association. Soon Phyllis turned spokesperson and was a fixture at fundraising events, garnering a reputation for giving a riveting performance while telling her story. It was only a matter of time before SSEEO, a partnering organization, tapped her to become president in 2013. SSEEO, the first nonprofit patient-supported stroke advocacy group in the nation, has flourished with Phyllis at the helm.
“The biggest thing is that she isn’t fearful — and it shows in the way she carries herself,” said Christine Winiecki, SSEEO’s director and a close friend. “A lot of times, when someone has aphasia, they become a wallflower. There’s anxiety and frustration and embarrassment and a host of other things, and they will have someone else speak for them.
“What people don’t realize is that when you don’t allow them the chance to have a voice — which is how they feel alive again and like they’re reclaiming independence — it’s easy to just crawl back into their little world and retreat from their (previous selves),” she added. “But Phyllis is her own person, and she’s going to get those words out.”
Phyllis imparts the same wisdom to audiences during speaking engagements on behalf of SSEEO. In advance of any speech, she meticulously writes out the content, codes words and syllables with color and bold or italics formatting and laboriously rehearses. For a 30-minute talk, she practices all day for seven days to two weeks. She carefully thinks about each word, how to form it and finally how to say it.
“Talking comes as effortlessly as breathing to most people,” Phyllis said. “Not for me. But I’m comfortable enough to raise my hand, excuse the way I speak and announce ‘Stop — I have an important thing to say. And I need a minute to form my words.’”
“I can’t begin to describe how impactful Phyllis is,” Winiecki said. “Her articulateness and candor and positivity about the recovery process have done wonders for us in reaching others with our message. Phyllis’s personal presentations resonate in a way that a typical educational presentation delivered by me — as an outsider — never could. Phyllis just sees things with more clarity than the rest of us, and our community would be a lesser place without her perspective.”
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