What Steve Zuckerman calls a "wacky cross-country trip" and a "bucket list item" for him and his wife Debra Meyerson, may also be a first -- the first bike ride across America to increase awareness for stroke and aphasia, and the emotional journey survivors take when rebuilding their lives and identity.
The couple's 4,300-mile Stroke Across America journey takes off from Astoria, Oregon on May 19 and is set to arrive in Boston on August 26. Meyerson will be in front in a recumbent position of an electricity-assisted tandem bike, with Zuckerman sitting upright in the back pedaling and steering. Their customized set-up could serve as a metaphor for what's happened ever since a very severe stroke in 2010 changed their lives.
The couple was raising three kids in Ladera. Zuckerman worked at Self-Help Federal Credit Union, and Meyerson was a tenured professor at Stanford where she had earned her doctorate in organizational behavior. When his wife had a stroke, Zuckerman says, "she was 53, healthy and fit, other than living a stressful full life of career and family."
The stroke affected the right side of her body and damaged the speech center of her brain. At first Meyerson was paralyzed and couldn't talk. Hospitalized for months, she received a lot of therapy and was eventually able to walk with help and utter some sounds. Then she had a second stroke, followed by surgery and some complications.
When she could drive again, she shuttled back and forth from home to undergo "pretty intensive outpatient therapy at Stanford ... and was lucky to have no real cognitive, executive, balance or eyesight effects," Zuckerman says.
After three years of "rehab, rehab, rehab," as Zuckerman describes it, she could walk slowly with a limp, and regained some movement in her right arm and hand.
According to The Centers for Disease Control and Prevention, nearly 800,000 Americans have strokes each year, and about a third of the survivors experience aphasia, a condition caused by damage to the part of the brain that coordinates communication.
Meyerson has aphasia and speaks haltingly, searching for the right words to express herself, yet in an interview she says in a clear voice, "Eleven years since my stroke, I'm still doing therapy and still getting better."
Three years into her recovery when her medical leave ended, she lost her tenure at Stanford. Zuckerman says that was a "triggering event," that left Meyerson struggling to define, "who am I now?"
Assisted by family and friends, she embarked on writing a book to answer that question. Her son, Dan Zuckerman, is the co-author, and they spent five years gathering information, talking to 25 other stroke survivors and their caretakers, and found the same thing their family did: there isn't a lot of support out there, particularly when it comes to rebuilding a meaningful life after losing skills, careers and relationships. They published Identity Theft: Rediscovering Ourselves After Stroke in 2019, the same year the couple founded the non-profit Stroke Onward "to make this our life's work," Zuckerman says.
He says his wife "really valued being a professor, creating knowledge and sharing knowledge, which she is still doing at the core now, encouraging people to find the deeper meaning of their interests and what they value."
The couple writes a regular column for the American Stroke Association, and speaks to groups, doing a lot of Zoom meetings lately with speech therapists. And the last eight months, they have focused on setting up 16 community awareness events scheduled to take place on their Stroke Across America bike ride.
The 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 to do a cross-country trek and then the COVID-19 pandemic hit. With the trip postponed, training got prolonged, 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 biking group which regularly climbs up to Skyline Boulevard and back.
On May 14 the couple is set to meet with local cyclists and supporters for a pre-launch event in their hometown of Ladera. The morning includes a ride to San Gregorio for a ceremonial back wheel dip in the ocean. Why San Gregorio? Because that's where the couple was engaged, and later where Meyerson went into labor with their first child.
The couple is taking its 15-month old goldendoodle dog Rusti on the 100-day trip, trailing in a wagon or riding in the main RV support vehicle. One stroke survivor is planning to bike all the way with them, while two others, a stroke survivor and a traumatic brain injury survivor, will join in later. At various stops mapped out along the route, people are invited to Ride with Rusti for a day, or sign up for week-long segments backed by a bike touring company. Everyone is encouraged to participate virtually and log miles on his or her own. The different options and fundraising opportunities can be found on the website strokeonward.org.
In places such as 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 "half info fair, half celebration" community events.
Stroke Onward offers resources for stroke survivors and care providers, and the couple's hope is to grow the list and boost local support groups' profiles.
Two college student interns are riding along, covering the estimated average of 55 miles per day, ideally going for four days and then taking a day off to rest. They'll be camping and taking pictures and videos to promote the trip with social media.
Stroke Onward is also working with a documentary producer to get organized about filming footage and interviews and keeping journals to capture the bike ride, and then use the material later to tell what Zuckerman sees as "a broader story --the importance of working hard, rebuilding life in the face of what you've lost."