One of the toughest moments of Debra Meyerson’s stroke recovery was when she realized she could no longer be a professor.
It had been three years since a series of strokes had robbed Meyerson, PhD ’89, of her ability to walk, talk and use her right side. In therapy session after therapy session, she relearned physical skills like walking and lifting her right arm. But regaining speech was painstaking, and Meyerson’s leave of absence as an associate professor at the Graduate School of Education and the Graduate School of Business had run out. She was not going to reach one of her primary goals: returning to her tenured faculty position.
Meyerson was a scholar of identity, and this struck her to the core. Who was she if not a researcher and teacher? If not an active mother of three? If not a full participant in conversations with her friends? Every aspect of her identity felt precarious.
What Meyerson came to realize is that these identities hadn’t vanished, but she was going to have to find new ways to express them. She might not be able to hold down a full-time faculty position, but she could still be a social scientist, researching and writing about re-creating identities after stroke. She and her husband, Steve Zuckerman, MBA ’87, might not be able to retire on a boat as they had dreamed, but they could ride a tandem bike together. In this excerpt from Identity Theft: Rediscovering Ourselves After Stroke, co-written with her son Danny Zuckerman, ’11, Meyerson explains how she began to reclaim one of her identities: that of parent.
Two years after my stroke, my daughter, Sarah, was giving a talk at her school to 400 students, teachers, and parents. The weekly “Chapel Talk” was a tradition for the high school seniors. Steve and I were in attendance, and Sarah hadn’t shared anything with us beforehand. So we listened anxiously with everyone else to her story:
September 3, 2010: I’m a very excited high school sophomore stoked for the long weekend ahead.
September 5, 2010: I’m a terrified teenager watching her life change forever.
Imagine spending eight helpless, clueless hours alone with your dog, stuck in a condo, while your role model and mom is carted from Truckee Hospital to Reno Hospital. You have no information other than a harried phone call from your oldest brother and dad telling you, “We think Mom is having a stroke.”
Imagine getting pulled over for speeding on the way to the hospital.
Imagine the strongest, most independent, most stubborn and most influential person in your life; imagine her struggling to tell the nurse that her speech is fine when asked to form a complete sentence.
Imagine a grueling, five-hour drive getting you home at 5 a.m. while your dad and continuously deteriorating mom are airlifted to Stanford.
Imagine going to the hospital after a few sleepless hours, spent imagining the worst, and being told you can’t even go into the emergency room because you aren’t 16 yet.
Imagine, after jumping through all imaginable hoops, being allowed to see your mom.
Imagine the worst; imagine seeing your mom completely paralyzed on her right side and unable to make a sound or express herself in any way.
Now imagine going to school the next day and trying to pretend that nothing had happened. I’ve always been private and independent; I always thought I was so strong. These last two years can be described in countless ways, but I prefer to see them as a journey into what it truly means to be strong.
By the time Sarah finished, Steve and I had gone through about half the box of tissues someone had handed us. Many of my tears were in pain—hearing fully for the first time the suffering she went through because of my stroke, and how much more difficult it made her time in high school. It was painful to realize that our relationship now was almost completely her providing support to me, and not getting any from me.
But there were also tears of joy. Completely unbeknownst to me, our daughter had found a way to bounce forward. She had found a way to grow from the adversity and taught me in the process. Stroke not only changes the lives of survivors but also of those closest to them. It often requires the entire family to recover, adjust and accept support themselves. Each person in my family has new roles and relationships, and their own part of the recovery journey. My family has rebuilt our family dynamics in this new context.
In the immediate aftermath of my stroke, Steve inherited roles of primary caregiver, emotional coach, motivator, health-care navigator, financial manager, chief logistician, rehab equipment engineer, and communicator to family, friends and even my colleagues. It’s hard to overstate the demands placed on the partner of a severe stroke survivor. In my situation, I had tremendous resources that other people may not have, and perhaps the greatest is a husband who was willing and able not only to accept the dramatic changes to his life caused by my stroke but also to embrace them fully as part of his life. “Someday we’ll look back and this will have been a one-year blip,” he’d say often after my stroke. It was always “we,” and it was always positive. While I struggled to accept my new deficits and identity, he was already changing his and infusing patience and optimism into our evolving situation.
Each ring supports the next: Steve got support from our kids, my mom and his family. My in-laws, Marjorie and George Zuckerman, offered many times to come from Boston to help and would have loved to do so. But they and my sister-in-law Marcia accepted Steve’s preference not to have more people on-site and instead provided from a distance the emotional support (and distraction from the constant focus on me) that he needed and asked for. They also provided an outlet on the East Coast for our kids, each of whom lived out east for periods following my stroke. “Spouses were convinced that their actions improved the rehabilitation process but emphasized that they, too, needed emotional and practical support,” found [a team of health-care researchers led by Gabriele Kitzmüller]. “Support from members of the extended family was crucial. Practical and emotional support allowed spouses to maintain a work life and to keep up with their caregiving obligations during the acute stage.” This layer supporting Steve was further removed from the stroke but was critical to our family recovery.
Danny says he thinks he had the least disruption within the family. He was with Steve and me at the time of the stroke, so he saw the damage unfold—terrifying but not the sudden shock that others got. He was going into his senior year at nearby Stanford. “I was in college, and so I had all the distractions in the world to keep me sane,” he told me once. “But I was right nearby, so I could visit as often as I wanted to.” He leaned on a few good friends and an on-and-off girlfriend, though he says his efforts to accept support were less mature than his younger sister’s.
Still, it was a glass-shattering moment for someone who freely admitted to friends that he’d had a blessed life with no real adversity up until then. He may not have known it at the time, but we saw Danny grow up overnight in some dramatic ways. He was suddenly an adult and full partner to Steve during the worst nights, pacing at the hospital, talking through medical options, supporting the rest of the family and observing therapy sessions. Our relationship had already been moving from mother-son to peers, as all do, and after my stroke, he gracefully accelerated through that evolution.
‘It was like the rug had been pulled out from under me. Someone who had cared for me all my life was suddenly incapacitated without warning.’
Adam, our second son, had just started college at Tufts, 3,000 miles away. When Steve first told him what was happening, he did what kids his age do—got on the internet to learn about stroke. That both helped and hurt. He could fill in all the uncertainty between calls with Steve and Danny, but usually it confirmed how bad things really were. Fortunately, we could afford to have him fly home whenever he felt the need, so after the stroke he came immediately, and then came home several times in the months following. The first time he came to the hospital to visit, he was shocked. “It was like the rug had been pulled out from under me,” he later said of those early weeks and months. “Someone who had cared for me all my life was suddenly incapacitated without warning.”
He suggested taking a leave of absence and restarting school in January. I don’t remember this, but apparently my nonverbal communication made it crystal clear that was unacceptable to me. He wrestled with it, torn that he wasn’t there to know what was going on in real time and to support me when I needed it. He gave in but flew home often in the early months. For two years he only took summer jobs near home to be close.
Meanwhile, Sarah was still living at home. She witnessed my stroke and recovery activities daily through her last three years of high school. As anybody around our family could tell you, Sarah had not been an easy child up to that point. “Deb was always worried about Sarah,” remembered [my friend and colleague] Robin Ely. “And she just stepped up. She really grew past some of her challenges.” Sarah struggled more when she was younger, really started to find herself in middle school, and in high school was doing well, making new friends and becoming independent. She was far more responsible than Adam and Danny were at her age.
Sarah drew on soccer and schoolwork and her natural humor. She embraced a new and more adult role, helping me more than I was helping her. Steve stepped into both parenting roles to a degree, and the two of them forged an even closer relationship. Fitness was an important escape and coping mechanism for both of them, and Steve talks about one of the silver linings for him: “How many dads get to do P-90X (a pretty intense video fitness program) in the garage at 6 a.m. with a high school daughter?” Pleasure, health, mutual support and father/daughter bonding all at once.
We all erupted in laughter and later agreed that I had just delivered the most efficient mother-daughter talk in history. I’m told by fully fluent friends that they have borrowed my script for their talks.
Brave as she was, of course Sarah struggled through it, too. “My bad days were [my mother’s] bad days—because that was when I really needed to be there for her; those were the hardest. Those were the days I just wanted to run into my room and not deal with it.” Just like I had to learn as a survivor, she had to learn it’s OK for family to acknowledge the challenge and slip into negativity at times. That’s where a family can be so critical—picking each other up in turn. In the eight years since my stroke, whenever our kids are going through school or job transitions, they’ve talked to each other to make sure one of them stays in the Bay Area; they know that helps both me and Steve.
Shortly after Sarah’s Chapel Talk in the fall of her senior year, Steve pushed me to step back into the mothering role. For more than two years, I had focused mainly on my recovery. My speech was still limited, and I wasn’t doing much to be Sarah’s mom. She was doing fine—thank goodness she was so independent—and Steve’s a great dad, but it hurt not to be involved.
Sarah had been invited to her senior prom by a guy she didn’t know that well, and they had started dating. Sarah had received sex education from school discussions and otherwise, but Steve suggested it was a mother-daughter rite of passage to have The Talk. Despite my limited speech, he pushed me to take the lead, standing by to fill in if necessary. Sarah knew we were having the talk, and we all stood around the island in our kitchen uncomfortably. After about 30 seconds of awkward silence as I gathered the words with all the concentration I could muster, I said:
Boyfriend . . . [long pause] . . .
Yeeessss? (voice rising, half statement, half question) . . .
[very long pause, eyebrows raised in exclamation, then rapid explosion of breath and words] . . .
We all erupted in laughter and later agreed that I had just delivered the most efficient mother-daughter talk in history. I’m told by fully fluent friends that they have borrowed my script for their talks. While I know I did not give Sarah any novel information, it was an important moment in our evolving relationship—it was important to me that I could again participate in her life as a mother, and important to her, I think, that she could again see me as a source for advice and guidance as she had before.
Excerpted from Identity Theft: Rediscovering Ourselves After Stroke, with permission of Andrews McMeel Publishing, 2019