What Steve Zuckerman calls a “wacky cross-country trip” and a “to-do list item” for him and his wife Debra Meyerson, may also be a first – the first bike ride across America to increase awareness of stroke and aphasia, and the emotional journey survivors take as they rebuild their lives and identities.
The couple’s 4,300-mile Stroke Across America voyage takes off from Astoria, Oregon on May 19 and is scheduled to arrive in Boston on August 26. Meyerson will be up front in a recumbent position of an electric-assist tandem bicycle, with Zuckerman sitting upright in the rear pedaling and steering. Their custom setup could serve as a metaphor for what’s happened since a life-altering stroke in 2010 changed their lives.
The couple were raising three children in Ladera. Zuckerman worked at Self-Help Federal Credit Union and Meyerson was a tenured professor at Stanford where she earned her doctorate in organizational behavior. When his wife had a stroke, Zuckerman says, “she was 53 years old, healthy and fit apart from living a stressful life of career and family.”
The stroke affected the right side of his body and damaged the speech center of his brain. At first Meyerson was paralyzed and could not speak. Hospitalized for months, she received lots of therapy and was finally able to walk with help and make sounds. Then she had a second stroke, followed by surgery and some complications.
When she was able to drive again, she shuttled back and forth to get “pretty intensive outpatient therapy at Stanford… and was blessed with no real cognitive, executive, balance effects. or sight,” Zuckerman said.
After three years of “rehab, rehab, rehab,” as Zuckerman describes it, she could walk slowly with a limp and had regained some movement in her right arm and hand.
According to the Centers for Disease Control and Prevention, nearly 800,000 Americans suffer strokes each year and about a third of survivors suffer from aphasia, a condition caused by damage to the part of the brain that coordinates communication.
Meyerson suffers from aphasia and speaks hesitantly, searching for the right words to express herself, but in an interview she said in a clear voice, “Eleven years after my stroke, I’m still in therapy and still getting better. .”
Three years after her recovery at the end of her medical leave, she lost her job at Stanford. Zuckerman says it was a “triggering event,” which left Meyerson struggling to define, “who am I now?”
Helped by her family and friends, she embarked on writing a book to answer this question. His son, Dan Zuckerman, is the co-author, and they spent five years gathering information, talking to 25 other stroke survivors and their caregivers, and discovered the same thing as their family: he n There’s not a lot of support out there, especially when it comes to rebuilding a meaningful life after losing skills, careers and relationships. They released Identity Theft: Rediscovering Ourselves After Stroke in 2019, the same year the couple founded the nonprofit Stroke Onward “to make it our life’s work,” Zuckerman said.
He says his wife “really enjoyed being a teacher, creating knowledge and sharing knowledge, which she still does from the heart now, encouraging people to find the deeper meaning of their interests and what they value. “.
The couple write a regular column for the American Stroke Association and speak to groups, recently doing numerous Zoom meetings with speech pathologists. And over the past eight months, they’ve been focused on setting up 16 planned community outreach events on their Stroke Across America bike ride.
The Meyersons and Zuckermans used to ski and hike together, and they’ve found that riding tandem bikes is something they can enjoy. Three years ago, the couple started planning a hike across the country, and then the COVID-19 pandemic hit. With the trip postponed, training extended, and when Zuckerman and Meyerson weren’t on their Peloton, they typically rode three to four times a week, often with the Over the Hill group of cyclists who regularly ride up to to Skyline Boulevard and back.
On May 14, the couple are due to meet local cyclists and supporters for a pre-launch event in their hometown of Ladera. The morning includes a drive to San Gregorio for a ceremonial rear wheel dip in the ocean. Why San Gregorio? Because that’s where the couple got engaged, and later where Meyerson gave birth to their first child.
The couple are taking their 15-month-old goldendoodle dog, Rusti, on a 100-day trip, hanging out in a wagon or aboard the RV’s main support vehicle. A stroke survivor plans to cycle the whole trip with them, while two others, a stroke survivor and a traumatic brain injury survivor, will join them later. At various stops plotted along the route, people are invited to ride with Rusti for a day or sign up for week-long segments supported by a cycle tour company. Everyone is encouraged to participate virtually and log miles on their own. The various fundraising options and opportunities can be viewed on the strokeonward.org website.
In places like Missoula, Denver, Kansas City, St. Louis and Detroit, the Stoke Across America team is inviting local stroke care organizations and adaptive sports programs to get involved in what Zuckerman describes. as “part information fair, part celebration” community events.
Stroke Onward offers resources for stroke survivors and healthcare providers, and the couple’s hope is to expand the list and improve the profiles of local support groups.
Two student interns ride, covering an estimated average of 55 miles a day, ideally for four days, then taking a day off. They will camp and take photos and videos to promote the trip on social media.
Stroke Onward is also working with a documentary producer to arrange to film footage and interviews and keep logs to capture the bike ride, then use the material later to tell what Zuckerman considers “a larger story – the importance of working hard, rebuilding life from what you have lost.”