What Steve Zuckerman calls a “strenuous cross-country trip” and “bucket list item” for him and his wife Debra Myerson, may also be the first bike trip across America to raise awareness of stroke and aphasia, and survivors take an emotional journey as they rebuild their lives and identity.
The 4,300-mile Stroke Across America cruise departs from Astoria, Oregon on May 19, and is scheduled to arrive in Boston on August 26. Meerson will be up front in the recumbent position of an electric-assisted tandem bike, with Zuckerman sitting upright on the rear pedal and steering. Their custom design can be a metaphor for what has happened since a severe stroke in 2010 changed their lives.
The couple was raising three children in Ladera. Zuckerman worked for the Federal Self-Help Credit Union, and Merson was a tenured professor at Stanford University where she earned a Ph.D. in organizational behavior. When his wife had a stroke, Zuckerman says, “She was 53 years old, healthy and fit, other than living a life full of stress from work and family.”
The stroke affected the right side of her body and damaged the speech center of her brain. At first Myerson was paralyzed and could not speak. I stayed in the hospital for several months, received a lot of treatment and was eventually able to walk with assistance and make some sounds. Then she had a second stroke, followed by surgery and some complications.
When she was able to drive again, she would commute back and forth from home to undergo “extensive outpatient treatment at Stanford … and she was fortunate that there were no real cognitive, executive, balance, or visual effects,” Zuckerman says.
After three years of “rehab, rehab, rehab,” as Zuckerman describes it, she was able to walk slowly with a limp and regain some movement in her right arm and right hand.
According to the Centers for Disease Control and Prevention, approximately 800,000 Americans have 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.
Myerson has aphasia and speaks hesitantly, looking for the right words to express herself, yet in an interview she said in a clear voice, “Eleven years since my stroke, I’m still getting treatment and still getting better.”
Three years after recovering when her medical leave expired, she lost her tenure at Stanford University. This was an “exciting event,” says Zuckerman, which left Meerson struggling to determine “Who am I now?”
With the help of family and friends, I set out to write a book to answer this question. Her son, Dan Zuckerman, is a co-author, and they’ve spent five years gathering information, talking to 25 other stroke survivors and their caregivers, and finding the same thing their families have done: There’s not a lot of support there, especially when it comes to reinstatement. Building a meaningful life after losing skills, jobs, and relationships. They published Identity Theft: Rediscovering Ourselves After a Stroke in 2019, the same year the pair founded the nonprofit Stroke Onward “to make this work in our lives,” Zuckerman says.
He says his wife “really valued being a professor, creating knowledge and sharing knowledge, which she still does to the core now, encouraging people to find the deeper meaning of their interests and what they value.”
The pair write a regular column for the American Stroke Association, speak to groups, and have had a lot of Zoom meetings recently with speech therapists. And in the past eight months, they’ve focused on 16 community outreach events scheduled for the Stroke Across America Tour on the bike.
Meyerson and Zuckerman used to ski and hike together, and found riding a tandem bike is something they can enjoy. Three years ago, the couple started planning a cross-country trip and then the COVID-19 pandemic hit. With the trip delayed, training lengthened, and when Zuckerman and Merson weren’t in Peloton, they rode three to four times a week, often with the Overhill Bike Group that climbs regularly to Skyline Boulevard and back.
On May 14, the pair are set to meet with local cyclists and their supporters at a pre-launch event in their hometown of Ladera. The morning includes a trip to San Gregorio for a swim in the ocean. Why San Gregorio? Because that’s where the couple got engaged, and later is where Myerson went into labor with their first child.
The couple takes their 15-month-old Goldendoodle dog Rusti for a 100-day trip, trailing off in a buggy or riding in the main RV support camper. One stroke survivor plans to ride a bike all the way with them, while two others, a stroke survivor and a TBI survivor, will join them later. At the various stations marked along the route, people are invited to Ride with Rusti for a day, or sign up for week-long segments backed by a bike tour company. Everyone is encouraged to participate virtually and score miles on their own. Various options and fundraising opportunities can be found at the strokeonward.org website.
In places like Missoula, Denver, Kansas City, St. Louis and Detroit, Team Stoke Across America is inviting local organizations for stroke care and adaptive sports programs to participate in what Zuckerman describes as “half-information, half-celebration” community events.
Stroke Onward offers resources for stroke survivors and caregivers, and the pair hope to expand the list and strengthen the profiles of local support groups.
Two college undergraduates ride, cover an estimated average of 55 miles a day, ideally go for four days and then take a day off to rest. They will be camping and taking photos and videos to promote the trip using social media.
Stroke Onward also works with a documentary producer for curation around filming and journaling shots of the bike trip, then using the material to later tell what Zuckerman sees as “a broader story – the importance of hard work, rebuilding life in the face of what’s been lost.”