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.
Once again thank you for your honesty Dr. C.
The other day I heard thst the greatest suffering of our time is that we scare away from suffering. It is therefore great to see that you face it and have the guts to write about it as it is. You are a true person and it is just awesome to read you and learn again and again. You are my hero. Regards from a great fan in Denmark. Did you ever try raw meat?
I would like to continue getting you articles.
omg Dr. C, you have hit the nail on the head,. you have articulated so well where i am with this disease. I think i am going insane at times as everyone thinks i am fine, but i am feeling horrible. i wish you peace and strength as you forge ahead with this disease
Good and timely article. When I feel low (typically in the early morning) I put in my ear buds with Christian music . That always lifts my spirits while I exercise and do my morning chores. In these days of a difficult condition I refuse to just sit in my self-pity.The truths
It has come to the point of hoping the meds last long enough to have some normal moments in my day. you take for granted just walking is an exercise in its self. They want me to go to therapy but even that stresses me out. I am trying my best but I have not given up but you have to know your limits and the line keeps changing.
Faking and hiding the true state I’m in is a daily struggle. As the author states, I’ve lost what made me, me. My accomplishments in life seem to disappear. I isolate myself as it seems no one understands what I’m going through. I constantly worry how long it’s going to take before I’m in a wheelchair or my mind goes. I can see the progression and it scares the hell out of me. So many symptoms to deal with. Exhausting. This article is spot on.
I have experienced the darkest side of Parkinson. Today I'm 52 and I was detected with Parkinson when I was 41. Gauri who lived until 45 years of age passed away as I suffered from the grim side of non-motor symptoms; depression, psychosis(delusion). Experienced side-effects of drug like pramipexole and ended in developing Impulsive Control Disorder. (ICD). As a result, symptoms like hypersexuality were observed and I indulged in desirable, disgusting, shameful acts. ICD induces a person to spend irrationally without any concern for the family members. I fell pray to an online scam and lost huge amount of money. Slowly as I realized these were the side effects of the drugs my prescription was changed. The realization of what has happened, the guilt, the DAWS (dopamine agonist withdrawal symptoms) and on the other hand progression of disease and put together has had a compounding effect on me. I passes away….. when I lost my self-confidence, self-respect, self-dignity.
I am surviving for my family only.
I concur, as we all do, with D. C. I feel when this event happens, then compounded by other equally devastating illness(ens), the loss of regaining some type of control is almost non existent. As I age, the difficulty to move forward becomes extremely difficult, almost to the point of giving up. The only hope to survive must be deeply imbedded in the dark recesses of our brain. That is the light or exit door(s) we must look for and find.
Thank you ,Dr C for sharing,you were right on every moment and experience,s of Parkinson.I am my husband's only caregiver, married 49 years.My husband has had PD for 30 years and we can relate to all you have written.The breathing, meditation and movement are the most important for PD and the care giver in order to survive this disability.
I am in my second year with Parkinson's. I am 87 years old and live alone. My wife is in medical care for her final months of life. My daughter visits from her home 75 miles away so I am alone most of the time. So far I am able to function with Parkinsons and Lymphoma. It is odd but takin care of myself and going to doctors keeps me busy. Cancer is no big deal but reading accounts of Parkinsons is scary and that keeps me fighting. It is like being a member of an army. I can't give in to the enemy while it keeps attacking. I wish other people with Parkinsons would talk about how they battle the disease. Who knows more than we? We can be a powerful health force if we work together.
Welll said Doc. You and I appear to have developed PD at about the same time. I was 76, working as a psychologist at a local military hospital. Loved my work with combat veterans. Then came a time when too many symptoms prevented me from being effective and after 40+ years as a psychologist, I retired. Pains, all kinds of symptoms that seem to vary from one day to the next. I have been depressed. Some of the depression feels like the electrochemical depression that I've read accompanies "Off" periods.. Can't stand hip deep in water to fish, no tennis, cant concentrate well enough to read and no job give me a snootful of depression at times. People who learn my age will usually comment, "Dave, you look good." I've learned to accept their kindness with thanks and keep the other "inside" stuff to myself. My poor wife, who is a retired RN was stuck with a guy whose COPD from volunteer work at the WTC kept them from doing a lot for 20 years.. Then the Parkinsons. It's been quite tough on both of us. Thank heaven I have a psychologist and a psychiatrist that I trust and rely on to ventilate and get great advice (They both have lots of experience with PD in rehab and outpatient settings.) At 84 years of age I have a lot to be thankful for, but am not ashamed to say that sometimesI wish this damned disease (and COPD) would go away and take this damned depression with it, but that isn't going to happen. I tell myself, "Expect the unexpected", knowing that things may get worse. During my childhood in England I learned a couple of expressions that give me a bit of a boost from time to time. "Don't let yourself down Mate" and "Keep your pecker (chin) up!", actually do help, a little. It's a tough go Doc, but it's what we were dealt and is a true test of character and guts.