The Self Is Dead: Struggling With Loss of Identity in Parkinson’s
Parkinson’s disease (PD) can wreak havoc on a person’s sense of self. It has changed many aspects of my self-concept. Who is this “new” me? What happened to that fellow I knew for so many years?
Since I began writing about Parkinson’s, I have been plagued with this overriding sense that I can’t get in touch with the me I knew so well in the past. I’ve been looking for years, and my old self can’t be found. Not only that, but I can’t even find the looking glass anymore.
So I stopped searching and started investigating. Why was my old self-concept now dead to me?
In my book “Possibilities with Parkinson’s: A Fresh Look,” I describe the death of the self and the formation of a new identity. My focus at the time of writing was on the disease process stealing my ability to keep working in my chosen profession. It wasn’t just one career; it was three.
My career as a geologist required intense physical ability for sustained work outside — walking for hours and not falling on the rocks. Being a therapist required constant emotional control. Parkinson’s gave me unanticipated emotional outbursts. This also influenced the decision to leave my third profession as a college professor. All this has led to a loss of identity.
Retraining myself as “Dr. C,” a Parkinson’s News Today columnist, has given me a new identity, but not an answer to why the old self-concept continues to evade me. The me that I was so familiar with is gone, and I’m left uncomfortable in my own skin. It’s very unsettling.
A breakthrough happened when I realized that the brain process involved in constructing one’s sense of self is malfunctioning with Parkinson’s. The American Parkinson Disease Association (APDA) agrees:
“We are not really used to talking about Parkinson’s as an agent of personality change because we focus on the disease as a movement disorder … But both [dementia and executive dysfunction] manifest as a fundamental change in who the person is … However, there is no question that the brain is changing because of PD. Because a substantial part of our personality relies on our brain function, it is not a stretch of logic to ask if a changing brain produces a changing personality.”
We communicate, move in and out of relationships using our body, and this dance helps to define our self. That all changes with Parkinson’s.
The APDA also suggests that the change in the known self can cause internal and external conflict. Families often expect the Parkinson’s patient to be the same as they once were, recognizing only the physical signs. But the Parkinson’s family member is not the same person who existed at an earlier time in life. I can no more return to an earlier personality state than I can change my poor muscle coordination.
For example, now I refuse to go shopping on the weekends at the food store, or really any store where customers congregate. It is taxing, draining my well of resources and increasing the risk of an average day turning into a bad day. It takes all my mental energy to navigate a crowded store while looking for the aisle that contains whatever is on the shopping list.
I can’t perform multiple motor tasks in a high-stimulation environment. For example, while in a crowded store, I’m simultaneously reading the signs above the aisle that could direct my search, avoiding collisions with oncoming shoppers, and trying to read the labels. This causes my anxiety and frustration levels to escalate.
Moving through 3D space is a struggle. I mentioned my shopping aversion to a fellow Parkinson’s patient, and she said, “You’re preaching to the choir.” That wasn’t a surprise to me. The revelation comes from considering the long-term effects of this malfunction in movement. Or as Mrs. Dr. C puts it, “traveling through the space-time continuum without the thrusters firing in sequence.”
I’ve spent at least seven years walking around, bouncing off walls, and dragging and catching my feet on even surfaces. It’s difficult to accurately “aim” my body movements. This 3D movement blindness is a permanent condition now, with me every day. With it comes a change of the self, very different from the one who moved easily and experienced the world empathically.
Self is now Parkinson’s, and I am cautiously, mindfully, moving within that world. The old self is dead. Long live the new self.
Note: Parkinson’s News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Parkinson’s News Today or its parent company, BioNews, and are intended to spark discussion about issues pertaining to Parkinson’s disease.