Riding the edge: A man's 40-year journey with his wife as she develops Alzheimer's

Author’s journey begins in 1980, together with his beloved wife. He completes the book 40 years later – as she develops Alzheimer’s.

 MICHAEL AND Deborah in Vermont, 1980, two weeks before the journey began. (photo credit: Tobin family)
MICHAEL AND Deborah in Vermont, 1980, two weeks before the journey began.
(photo credit: Tobin family)

Michael and Deborah Tobin, two well-known psychologists who live in Efrat, have been practicing in Jerusalem since 1988. Deborah retired in December 2019. They have a riveting story of how they arrived here the first time around, on a six-month bike trip that took them through a plethora of experiences in France, Greece, Italy, Cyprus, war-torn Lebanon, and – ultimately – Israel.

Michael started to write a book about their saga, a search for identity and meaning, more than 30 years ago. The book went through periods of starting and stopping, sometimes with years of drought in between. There were interested agents and excited publishers, rejections and suggestions, and he put it aside.

In 2019, Michael picked it up again and decided to rewrite and complete it. What changed?

In November 2018, at the age of 68, Deborah was diagnosed with Alzheimer’s disease.

Michael told the Magazine that in December 2019, “I started writing and didn’t stop. I was a man possessed. What was inspiring was I would write a chapter and read it to Deborah, and it was a beautiful experience watching her reactions and her memories and talking about it. She was more communicative then and I thought, whether this book is ever read by anyone else other than my dear wife, it’s already a success.”

THE STORY begins in 1980; the place, Middlebury, Vermont. Deborah and Michael were psychologists with burgeoning practices, an exquisite rustic home, and only the tension of completing their doctoral dissertations kept them from fully enjoying their lives.

Deborah was an Arab American of Christian Lebanese descent, raised, as Michael writes, “in the Arab sub-culture of Charleston, West Virginia.” He grew up in Roslyn Heights, Long Island, in a family that was, for the most part, comprised of non-practicing Jews, though his mother was president of Long Island Hadassah and badgered politicians about supporting Israel. She died of breast cancer when Michael was 19.

Sparks flew when Michael and Deborah met in 1974, when they were graduate students and he was mesmerized, watching as she “spun around the Antioch dance floor like a God-intoxicated whirling dervish.” They began professional and personal lives together, but something was missing.

In 1980, he says, they felt the need to take a break from their intense career paths for a path of uncertainty, in which they would open themselves to whatever might happen.

What unfolds in Riding the Edge, A Love Song to Deborah is a journey of adventure, love and of discovery. Their culinary experiences will have you salivating; their biking escapades will have you loving the vicarious ride.


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But the core of the book is the lessons they learned along the way. The most deeply moving experiences were their encounters with people who had suffered and survived.

 THE TOBINS in Scotland in 2019, before his surgery. (credit: Tobin family)
THE TOBINS in Scotland in 2019, before his surgery. (credit: Tobin family)

Michael spoke about some of those who they had met, and about whom he wrote.

SIMONE AND Alain, a friend of Deborah’s from the time she had studied at the Sorbonne, invited them into their home in Paris. 

“Simone’s family had lived in the Normandy region and her father, who was a doctor, hid Jews in Rouen,” he said. “A British bomber, prior to D-Day, accidentally dropped a bomb on their home. Her two brothers were in the basement. The father watched his sons burn to death and heard them screaming but was unable to rescue them because of the fire. It was so horrific that it became the central part of her father’s life; she grew up in a home where they could not laugh or play because it would be disloyal to her brothers. But she eventually found humor and learned to laugh and created a relationship with Alain. She had a wonderful way of approaching the difficulties of life, considering her background.

“Simone signified philosophical resilience – ’I can choose to make a life in spite of the difficult situation into which I was placed.’”

While in Paris, they visited a photo exhibit on the Holocaust at the Pompidou Center. They came to a picture of male inmates in Theresienstadt, and the man in front of Deborah said, “You see the photo of this person? This is me.” His name was Jacob.

“He shared his story with us,” says Michael, “about his extended family of 50 from Amsterdam who were all wiped out. How do you recover from something like that? He did, he said, one day at a time. It helped to be part of the community of survivors; he said they were the only ones who could understand each other. He married a survivor, built a family and a successful business.

“‘The Nazis will not destroy me,’ he decided. ‘I survived for some purpose. They can take everything from me but they can’t take away my freedom to choose; I will rebuild my life from ashes.’ Jacob focused on his rage toward the Nazis: ‘I won’t let them destroy me.’”

Michael left that encounter with the disturbing thought, “It doesn’t matter if you are an affiliated or unaffiliated Jew, keep Shabbat or don’t, as far as the Nazis are concerned, I would have died at their hands and not known why.”

At one point, they were at a campground and, Michael writes, “A clown found us. He was a handsome man in his late 60s or 70s, and he had a lilting French accent, like Maurice Chevalier. He was not Jewish. We learned that he was a partisan in WWII, that he lost his brother and his mother in the war and took on the nom de guerre of ‘le saboteur.’ He was a genius at blowing up things and killing Nazis.

“Only when the war was over did he realize how many young German boys, soldiers, he had killed. He was hit with such a profound sense of loss, that he became a clown and went into the streets that were filled with beggars and little children who were homeless after the war. He was like the Pied Piper, and the kids followed him. New circumstances demanded a new persona, so he became a clown.

“Hitler had used the power of imagination to create evil. The clown’s use of his imagination was the source of his resilience. After killing the Nazis, he threw away his weapons and became a medium for joy and laughter.”

A WRENCHING yet heartening encounter that taught him about resilience was in Lebanon, birthplace of Deborah’s maternal grandmother. 

“It was in Kab Elias, a small village in the Bekaa Valley, where we sought her living relative. When we found her, we also found an entire extended family. They had lived peacefully side by side with the Moslem population for years until the civil war in 1975, which was originally between Palestinians and Christians. I write about how Palestinian terrorists cut the middle and index fingers off some Kab Elias children, so they’d never be able to fire a weapon again. One of the boys in Deborah’s family died fighting with the Christian militia and others had left Lebanon for Australia or elsewhere.

“About 40 of them had stayed there, and they were extremely close. They taught me the value of family as a source of resilience. They were religious Christians. It was amazing to me to see the way they spoke without complaints, basically saying, ‘We make the best of what we can in this situation, and we have one another.’ For them, the idea of leaving home was like cutting out a piece of your heart. In America, the Lone Ranger is heroic; much of our literature and cinema is about leaving home to find oneself, and what we discovered on our trip is that family is a really essential part of who we are.”

Did he learn something from these encounters that influenced his life afterward?

“Yes. We have not been spared the challenges of being alive, although I would consider that we’ve had a very blessed life.

“As a psychologist for 47 years, I’ve dealt with people going through multiple difficulties in life and helped them find the resources to get through them, so they can keep going, so they won’t succumb to despair. How we deal with loss is one of the bigger challenges in life, especially if it’s, God forbid, the loss of a child. There is the loss of a loved one, the loss of financial security… so I’ve learned a great deal from others’ experiences. Although it was painful at the time, I also learned a great deal from a business failure.

“A bigger hit for me was a huge change in my personal health following major spinal surgery on my neck. I had been a serious climber, runner, and CrossFit enthusiast. I loved physical challenges; it was a big part of my life. The surgery ended my ‘career’ as an athlete. But when one door closes another door opens. When I shifted to writing, I reconnected to the writer in me. This was an enormously helpful and healing way to get through this life change.

“But the biggest challenge is the one with my beloved wife, my life partner since our 20s. She was diagnosed with Alzheimer’s disease right after we came back from climbing up to the Everest Base Camp. I have been learning to deal with her diminished capacities and cognitive decline. She had been the most emotionally attuned person I ever knew in my entire life, and her emotional intelligence and cognitive abilities have gone through significant changes. I lost my best friend and someone who I imagined I would grow into old age with together, enjoying our family and our grandkids. Now she is disappearing on a daily basis.”

HOW DOES he get through this?

“Losing a spouse to this soul-destroying illness, you need a lot of support. I’m blessed with wonderful friends and family. I have a way of compartmentalizing things and trying to put things away so I can function, but I have also returned to therapy after 35 years, in order to stay in touch with my emotional reactions, understanding my sadness, my rage.

“There is no way of describing what it’s like to see somebody going through changes like this, for which there is no cure. For many cancers there is a good chance there will be a cure, but the best that doctors can say about Alzheimer’s is, ‘Go for a walk because it’s good to slow down the progression.’

“Part of the method that I utilize in order to be resilient and not to collapse under all this is to be involved in creative work, to be involved with people, to give to others as well. As long as you are learning and growing, then you’re alive. I always remember what Viktor Frankl wrote in his book Man’s Search for Meaning. I was not just moved, but deeply influenced by his experiences in the camps, including in Auschwitz, and how he was able to identify, even in the most horrific circumstances, that what makes us most human is our ability to choose, our ability to choose is what makes us free.

“I choose to be happy, to be positive, to not complain. I choose to be alive. Did I ask for this or want this? No, but God doesn’t run a candy store. And if you think He does, you’re going to be sorely disappointed.

“I had learned a lot from our trip, some conscious, some unconscious, but it was all profound and transformative.”

He spoke more about family.

“In 1980, we felt that to discover ourselves we had to leave home, our families, our attachments to our professions and to some extent even our relationship as I write about in the book. We wanted to be open to anything we might experience along the way. Perhaps the prototype is Avraham Avinu (Abraham) leaving Haran, leaving his birthplace, when God says, ‘Lech lecha’ (‘Go!’), almost erasing personal history in order to really discover oneself.

“Fast forward 46 years later, we have four children and 17 grandchildren... the contrast is remarkable.

“Especially now at this stage in our lives and with Deborah’s illness, our family is so important and such a source of love and care, emotionally and physically. To be alone and go through this would be such a horrific experience; it is difficult enough as it is, being part of something larger than myself. I cannot imagine what it would be like for someone who has no support system, no family or community, but that’s not where we were when we started this journey. We acquired a greater sense not only of who we are as individuals but a greater sense of family.”

Riding the Edge, A Love Song to Deborah will have you sometimes at the edge of your seats, sometimes howling in laughter and sometimes in tears. It will take you into the hearts and lives of Michael and Deborah, into the hearts of the many people they meet along the way, and perhaps, in the process, give you an additional window into your own heart as well. 

Riding the Edge was published by River Grove Books and is available on Amazon and other venues.

The writer, an award-winning journalist, was cofounder with Dr. Michael Tobin of WholeFamily.com, and saw this book evolve, starting more than 30 years ago, until the present time.