Learning to Sit With My Pain Helps Me Live Better With Parkinson’s

There are days when I feel miserable. They run together like the constant pounding of ocean waves, shaking me with constant pain. The misery is not only in my body, but also my mind — a world of exaggerated pain signal perceptions that defines too much of my life. The pain is real. It manifests as dystonia, akathisia, and neuropathic pain. Trying to ignore them doesn’t work.

I can see in my pain experience room between cause and interpretation. Room for me to put in the “pause between.”

In that pause is the urge to escape, to fight, to rationalize away the importance of practicing the “pause.” I’d like to just find some pleasurable relief from my Parkinson’s symptoms without all the challenging work. That’s the nature of the beast — always accompanied by the urge to fight or escape. The pause lets me realize this.

An article published in 2020 in the journal Neurology International found that, “One [Parkinson’s] symptom often poorly recognized and under-treated by health care providers despite being reported as the most common non-motor symptom is the finding of chronic pain.”

Pain is an elusive diagnosis, subjectively perceived by the patient and often difficult to describe. The article noted that while Parkinson’s causes or worsens some level of pain, that pain can vary in type and severity. Some patients report no pain, while others experience minor, moderate, or severe pain.

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September 21, 2018 News by José Lopes, PhD

Chronic Pain Common in Parkinson’s Patients and Weighs Heavily on Quality of Life, Study Reports

It is difficult to sit in the pause and just be still. There is always the urge not to sit. Seeking stillness is a conscious choice for me now, as well as part of my daily life. I choose to sit in the pause and explore what is there to help me live better with Parkinson’s.

When I was working on my PhD at Syracuse University, I was interviewed by political science professor Fred Frohock for his book “Lives of the Psychics: The Shared Worlds of Science and Mysticism.” The American Library Association review of the book said:

“Lengthy theoretical discussions on the nature of reality, consciousness, and the limitations of scientific inquiry are followed by summations of the results of research experiments designed to test psychic abilities. Most are inconclusive when statistical analysis is involved, yet they reveal some remarkable abilities in individual cases. … the stories that best illuminate the psychic’s mind are those of the present-day spiritual practitioners whom Frohock interviews, … [who] come across as dedicated, caring healers.”

This was the first time an academic peer had described my healer qualities and experience as “mystic.” It was more than two decades ago, and I still wrestle with the moniker. My explorations into developing a self-management toolkit for Parkinson’s symptoms incorporates the balanced science that Frohock identified as mystic insight.

Accepting the role of mystic meant finding my way around the Merlin-esque New Age connotations. I prefer the more universal translation of mystic as “spiritual guide,” or a guide into sacredness.

I also have an unshakeable faith in the process of shifting to sacredness, which allows us to see problems, such as a chronic illness, with fresh eyes. Sacredness is not reserved for church. Sacred shifting provides an opportunity to sit in suffering, in the “pause between,” before finally moving into exploring sacredness. The key role of the mystic is to help others explore the sacred nature of their own existence.

The truth of life with a chronic illness like Parkinson’s is that it’s darn tough. There are days when the last thing I want to think about is the process of sitting with my suffering. There are times when it’s just not possible. I know this because I practice sitting in the pause every day. There are days it works better than others. Some days I can’t reach that goal, but it always teaches.

The process of sitting with the suffering, then moving into the pause in a sacred manner, changes the nature of the suffering experience.

After years of meditation practice, my brain finally clicked into the new sacred pattern of perception. I need to use that new perception to accept the changes that manifest themselves in ways that are still foreign, uncomfortable. My new life with a chronic illness is still sacred and profound. Self-management techniques encourage me to keep trying to manage the worst of the Parkinson’s symptoms. Finding that quiet sacredness gives me the moments in the day to be quiet with myself and my life. To peacefully say, “It’s OK.”

Wallowing in misery, barking at the moon, and trying to escape have unacceptable consequences for me. It wastes my time. It empties out my well of resources, leaving me vulnerable to the ugliest aspects of this disease. The alternative approach of sacredness in daily life has provided hope for me.

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.