Loss, meaninglessness, mortality: A look at Parkinson’s crisis events
Living with the darkness when it comes — and finding ways to move beyond it
Editor’s note: This column briefly discusses suicide. Please find resources for help at the end.
No one prepares you for the enormity of the loss that comes with a chronic illness compounded by getting older. My ability to bounce back has fallen through the floor, leaving me groundless and searching to make sense of life.
“Grief associated with chronic illness, however, is more complex for many individuals,” Kate Jackson writes in the 2014 article “Grieving Chronic Illness and Injury — Infinite Losses,” in Social Work Today. “For people who are chronically ill, the losses are multiple and permanent and therefore difficult to resolve. Because these losses are unending, they’re known as infinite losses.”
Jackson, describing the views of Mila Tecala, a licensed independent clinical social worker then with the Center for Loss and Grief in Washington, D.C., says that, “In … Parkinson’s disease, which also may have an uncertain course, patients must live a lifetime of uncertainty, anticipating what may or may not come next.” She then quotes Tecala, who says, “Most people don’t handle the limbo state loss well for a long time or it becomes paralyzing.”
Even though I’ve described the Parkinson’s “sweet spot,” I still have horrible “beast” days. When they come, I’m prostrate in bed, overwhelmed with pain, watching family and friends go about their lives as if nothing is wrong. The room closes in on me with a disabling, deafening darkness. I am in crisis.
When I reach out to grasp something familiar, there are only the ghostly remains of my former self. The disease has ripped away all the things that defined me. Three careers gone — geologist, clinician, and educator. My life, my identity, stolen. There is no “me” anymore.
I can hear someone saying, “But look at all you’ve done.” I can hear my medical provider saying, “You know depression is common with Parkinson’s.” This darkness experience is temporary and more like the dark night of the soul. At least that’s the fragment of meaning I’ve scraped out of the nothingness.
One might think there’s comfort in knowing that the darkness is temporary. But the dark moments are so intense, the suffering so persistent, that the tiny glimmer of a future exit just can’t take hold. Lying there, the question of mortality always appears: Is this how it’s all going to end for me? Alone in a dark room and then gone?
Maybe it’s my clinical training, but as soon as there’s even a hint of suicidal ideation, big red warning signs start flashing. Time to shift.
The very first thing that helps me shift is to get up and move — to walk around the house, being extremely mindful of feet touching the floor. You might think this is simple and easy, but it’s not. There’s so much resistance: actual physical resistance to moving, and then mental resistance to being mindful once walking.
After about 10 minutes, I put in a music CD and get into my meditation posture. Then it’s just breath work. Nothing else for an hour. If my thoughts start to go down dark paths, I must remind myself it’s not safe to revisit that space. Back to breath work. Most of the time this meditation work helps me shift out of the darkness long enough to see the exit.
The exit has two doors. I must go through one to get to the other. For me, Parkinson’s crisis events often come with the dreaded darkness. There’s nothing I can do to force it to go away. In fact, fighting with it just makes it stronger and last longer.
The first exit door for me is “faking external calm.” Get up, show up, and engage life. Present an external calm even though a storm is raging inside. Fake the calm and wait for the second exit door.
When the second exit door appears, someone flips a switch, and the room is infused with bright light. The door is glaringly obvious. In seconds, I’m through. I’ve returned to my “normal” state of being chronically ill. This shift is almost instantaneous. I’ve turned off the darkness and shifted away from the crisis.
It’s a remarkable, unique sensation. The shift can have a component of bliss, mostly because it’s so nice not to be suffering. I’m cautious with the bliss, though, meditating to dampen down the euphoria because of its negative consequences.
To a lesser degree, crisis events happen to me every day, and every 10 days there are beast days. With total honesty, I hate them. It’s the worst part of my life with Parkinson’s.
This is not my usual upbeat column ending, but it’s the naked truth. No matter what I do, I’ll still have a progressive chronic illness, and there will still be bad days.
If you are struggling with thoughts of suicide, please contact the Suicide Prevention Lifeline in the U.S. (988, or 988lifeline.org, available 24/7) or Samaritans in the U.K. (samaritans.org).
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.
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