Stroke Recovery: Grieving the Loss of Me
Devastated by a loss of identity, a survivor begins to recover emotionally.
Posted Feb 13, 2020
October 9, 1995, had been a good day. My mother had taken a quick flight from Los Angeles to get her baby fix and had spent the day with three-month-old Sarah and her two older brothers—almost four and six at the time. I dropped her at the airport, returned to kiss the already sleeping kids, and drifted off to sleep with Steve. I woke up a few hours later to a call from my brother. When mom got home, she found my father drowned in their backyard pool. He was just 64 at the time, completely healthy. Now, in an instant, he was gone.
I was in shock. I spent six hours shaking with tears, and much of the next several years on the border of depression (something I did not realize until many years later). I still miss my dad dearly, but thanks to family, counseling, a great support network, and time, I moved past the intense grief that accompanied that sudden and devastating loss.
June 4, 2013, 18 years later, was not a good day. Three years after my stroke, I had reached the end of the allowable medical leave at Stanford. Steve and I had a meeting with Claude Steele, then dean of the Stanford Education School. With great compassion, he explained that since I had not regained enough speech to fulfill my role as a professor, I would have to give up my tenured position at Stanford.
I was devastated. When I got home, I cried; I stared into space; I punched pillows; I collapsed into Steve’s arms. Repeat. For three years, I had worked so hard to recover, rebuild, and reclaim my old self. I had failed! The emotions I felt that day were reminiscent of the night I lost my dad. It wasn’t just my position and profession that I had lost: that day, I was forced to face head-on the fact that my old self had been taken away from me. Without realizing it at the time, I was grieving the loss of my own identity.
Nearly every survivor I talked to spoke of some level of depression in their journey. Clinical depression affects one out of three stroke survivors, and it often goes undiagnosed. Depression can be triggered by the physical damage to the brain as well as by the emotional trauma. Biochemical changes in the brain that result from stroke can increase the likelihood of depression.
For example, if cell death occurs in a certain region of the brain, the survivor may not be able to feel positive emotions, explains Dr. Robert Robinson, a psychiatrist at the University of Iowa who studies poststroke depression. “All the tips, tricks, reframings, and forced optimism in the world may not be able to overcome a new biological disposition in which professional help and likely medication would be recommended.”1 This impact is often underappreciated, and thus, psychological support is usually minimal or nonexistent as survivors and health-care pros focus on physical recovery.
Some counselors and therapists, witnessing the experiences of patients like me after I lost my tenure, compare the experience of stroke to bereavement. Many draw on the stages of grief model in their work to help stroke survivors. This road map for the grieving process was drawn up by Elisabeth Kübler-Ross in her 1969 book, On Death and Dying.2 Dr. Kübler-Ross suggested that grief was a process that embraced five stages: denial, anger, bargaining, depression, and acceptance (not necessarily in linear order).
“I think the Kübler-Ross model is an invaluable tool for helping patients gain perspective on what they’re going through—their emotional journey—and to realize they are not alone in their experience,” said neuropsychologist Monique Tremaine, director of psychology and neuropsychology services at Kessler Institute of Rehabilitation in West Orange, New Jersey. Since my stroke, I have felt each of these to some degree, and others do as well. “Survivors readily identify with the stages and can accept the fact that they will move forward and backward through them with changing levels of recovery and life circumstances.”3
This model also suggests ways to cope with the depression that can accompany stroke: striving for some degree of acceptance. Rather than constantly looking back at our old selves, we must learn to look forward. Small wins, conscious choices, and finding new ways to live a meaningful life can help bring us out of the backward-facing grasp of grief. It’s not always possible, and not so clear-cut. Denial can help motivate hard work early after a stroke, and that would help survivors regain more functionality. “Striking a balance between reality and hope can be difficult, and acceptance should be discussed in terms of the here and now,” said Dr. Tremaine.
Finding the right ways to anticipate, acknowledge, and move past the grief can be critical to unlocking a happy poststroke life. Lisa Levine-Sporer spoke about one fellow survivor's journey as less a pure loss and more a rebirth: “I also think that some stroke survivors go through a loss, as if there was a death,” she said. “It’s just an acknowledgment of a different identity.”
Copyright Debra Meyerson
1. “Depression Trumps Recovery,” Stroke Connection, (September/October 2003).
2. Elisabeth Kübler- Ross, On Death and Dying (New York: Scribner, 1969).
3. Jon Caswell and Rachel Scanlon Henry, “Grieving the Old Self, Embracing the New,” Stroke Connection (Fall 2017).