On Living with Parkinson's Disease
By Michael Robin
This story is a sequel to Robin’s previous story: “Healing my Broken Story: Rising from the Ashes”
I meet with Dr. Sharif on February 14, 2024. On this day, he tells me that I am in the very early stages of Parkinson’s Disease. Because I’ve never smoked cigarettes and haven’t had a drink for years, I’m told it’s unlikely that I will experience the worst of Parkinson’s symptoms for at least ten years, if not longer.
The first minute of our conversation grabs my attention. The moment I hear the word “Parkinson’s,” I immediately think of my beloved PJ. We met on April 10, 2019, and we have a mutual commitment that whatever the circumstances, one will care for the other until death do us part. Being loved by PJ means everything to me, and I feel especially grateful for her in the moment of my diagnosis. I know that I will never be left alone as long as I live. We are two imperfect people who are perfect for each other. My sorrows soften knowing that I will not die alone and unloved. I have no doubt that PJ will do whatever is necessary to ease my burdens, as I will for her.
Two weeks after my diagnosis, I receive a note from Victor Klimoski, a poet and dear friend. Victor writes, “I am sorry to hear about the diagnosis but not surprised at your reaction to it. Like your encounter with suicide, you look beyond the crisis presented to the light that can be found. I know that capacity is fueled by your deep inner journey but that it also draws fire from PJ’s love. Lucky, blessed, you.”
On Being Disabled
As Victor notes, Parkinson’s is not my first encounter with illness. On November 27, 2013, I survived my first and only suicide attempt I was 63 years old, unemployed, without savings or resources, in a long-term loveless marriage. At age 74, I now have Parkinson’s Disease and am officially mentally and physically disabled. My status is certified by my disabled parking placard. As I dwell in the bittersweet world of growing older, I reject the idea that having Mild Cognitive Impairment with Parkinson’s Disease, Benign Positional Vertigo (BPV), Post Traumatic Stress Disorder (PTSD), and Attention Deficit Disorder (ADD) makes me any less intelligent, compassionate, or worthy of being taken seriously.
While getting older, I rely on the accumulated wisdom of experience to guide me on my road home. Ours is a culture that often devalues the contributions of older people like myself, who have much to offer in terms of care, compassion, mentorship, and friendship. Living with physical and cognitive disabilities – weakening muscles, lack of stamina, increasing fatigue - does not mean I am no longer productive, dignified, and worthy. That I am diagnosed with Mild Cognitive Impairment does not mean that I am significantly cognitively impaired, nor does it mean I am imminently dying.
Given my age and all that I’ve been through does not mean that I should expect to function in the exact same ways I’ve always functioned. It does mean modifying my habitual ways of doing things. I walk slower and need more sleep. My memory and focus are not what they used to be. To maintain my balance, I walk with a cane. While I am more accepting of the constraints of age, I am more appreciative of what the eminent philosopher, Joseph Campbell called the “rapture of being alive.”
With PJ’s help, I am learning to accept that my mind and body work differently than they once did. Parkinson’s has shifted the way I see, think, feel, and move. I have lapses in memory, recall, and attention. I get headaches and lose focus. I have an unsteady gait and difficulty with balance and coordination. And yet, I feel strongly that these “impairments” are not markers of my competence, intelligence, or moral worth. In some ways, I feel my self-understanding and social awareness has deepened since the onset of Parkinson’s symptoms.
On Writing
For the last ten years, I’ve been writing my spiritual memoir titled, From Despair to Gratitude: Healing My Broken Story. I have been studying the literature of narrative psychology for many years. This began early in my career as a clinical social worker. I feel called to write about what it means to live my last years as a disabled person, along with living in the aftermath of a suicide attempt.
While living with mild cognitive impairment, I am proud to say, I have not yet lost the distinctive quality of my words. My publisher tells me I have a unique and rare ability to write from a phenomenological, lived experience perspective of what it’s like to live through suicidal despair and chronic illness. Although I will continue to have problems with dysfluency and syntax, I will never disavow my words. I may stutter or drop words, but I do so without shame and regret. I will forever be revising my writing and my story.
I am trying to complete an enigmatic story about how I survived a serious suicide attempt and its aftermath, by giving a soulful account of my life. Sometimes, I externalize my story by asking, “What is my story trying to tell me?” The paradox of writing is that the story itself never stands still. Like a river, it is always on the move, endlessly transforming itself. A story that stagnates in still waters is a story that loses its vitality. My story, like my embodied self, needs to be nurtured by a cool mist and flowing waters.
As a writer, I hope my readers will be attentive to the explicit and implicit questions I raise. In the beginning, I focused on the external causes of my distress, but as my journey progresses, I become more reflective about my inner life, and how all of my experiences affect my emotional and spiritual well-being. The desire to know myself, to understand what happened, how to heal, and how to live a life worth living, has been the fuel that drives me to write.
After ten years, I have been able to process a lot of what happened by remembering it, telling stories about it, probing it, and revising what I write. On this journey, I imagine myself floating on a moving river, never staying in the same place for very long. As I move through awakenings to new beginnings, I emerge as a person with a renewed sense of self. Jewish people call this process tzimtzum, the transition from divine emptiness to the womb of becoming. It’s in these liminal periods that new dimensions of myself emerge.
As I come to the limits of the possible, I appreciate what I have accomplished. I live with disabilities that have an uncertain course. I’ve lost the ability to walk fast and my pace is far less steady. The cane I carry is a ubiquitous symbol of my disability but it does allow me to live a more balanced life. The deference I’m shown when trying to open a door is heartwarming. When I walk into a room, I feel a frisson of awareness, that my presence is noted. Yet, I cannot say that my physical strength and intellectual acumen are not waning. I can no longer walk without the support of my cane. In time, I likely will need to transfer to a walker, and maybe later, a wheelchair. As my bones ache, I tire easily. It is hard to get through a day without an afternoon nap.
To have Parkinson’s does not mean I have no future. Despite some of these challenges, I want to live at least another decade before I pass from this earth. I am inspired by the example of Michael J. Fox, who has lived a very productive life since first being diagnosed with Parkinson’s more than thirty years ago. I know that my remaining years will be full of meaning and purpose if I continue to transform memories of loss to memories of meaning.
Loss often involves a release of attachment for how things used to be. There are only a few people who remain in my life from before my suicide attempt. Losing my job on June 11, 2013 was the proximate catalyst that transformed my life. Since then, I have been forever changing myself. Now, after ten years of writing and reflection, immersed in PJ’s love, Richard’s therapeutic support, and the friendship of writing companions, Victor, Sam, and Kiely, I know who I am. This is my story, how my attempting, surviving, and writing about a suicide attempt has been a catalyst for spiritual change that has helped me embrace my disabled self. In the coming months and years, I will continue to share my story. Above all else, I am grateful to be alive.
About the Author
Michael Robin is a clinical social worker with more than forty years of experience. This excerpt comes from Robin’s forthcoming memoir From Despair to Gratitude: Healing my Broken Story, to be published by Wise Ink, Minneapolis, in 2025.
Robin would like to acknowledge Kelsey Biddle's and Benjamin Zide's support and encouragement in the development of this story. He was a participant in their research study, “A video-based narrative intervention for adults with early cognitive impairment and their care partners”, sponsored by Brigham and Women's Hospital in Boston.
If any readers would like to offer Robin thoughtful comments, he can be reached at mrrobin@comcast.net.