Illness as hermitage: How Parkinsons became my spiritual practice

September 3, 2015

Since I received the diagnosis of Parkinson’s disease, I have had to slow down and simplify my life to accommodate my compromised energy. At the same time, new obligations—medical appointments, attention to diet, increased exercise—demand more of that energy I no longer have.

I am required to keep a stringent daily schedule. Finish breakfast at least an hour before the 7 a.m. meds. Practice yoga, but wait until two hours after a meal. Take the yellow pill three times a day, but keep four hours between it and the gray pill. Finish lunch an hour before the 1 p.m. meds. Take this at 4. Do that at 5. Remember this at 7. . . . Oh, and don’t be stressed.

There have been many losses. My self-image as a strong and vibrant woman seems not to fit anymore. I have to pay attention to my balance, think about how I walk, be careful not to fall. Be careful not to fall? When have I ever worried about falling? I have always acted and felt younger than my years. How did I get to be old so young?

I’ve lost my safety net. I have benefited from the healing powers of Western medicine as well as acupuncture, prayer, yoga, homeopathy, ayurvedic medicine, and healthy foods. But if these are not going to preserve my health, what will keep me safe?

I’ve lost my spiritual grounding. I can’t pray the way I always have. I spend an inordinate amount of time focusing on my body, and there isn’t much time left to focus on my spirit. When did I switch from being centered on God to being centered on myself?

I’ve lost my trust. I can no longer trust my body to do what I want it to do. I’ve lost the carefree confidence that my brain will always perform as it always has. I feel betrayed by those practices of diet and prayer in which I had put so much trust.

Perhaps the most painful loss of all: I’ve lost my illusions. I’ve lost the illusion that I am exempt from the losses and limits that besiege other people. I’ve lost the illusion that I am in control. I’ve lost the illusion that if I just do it all right, it will be all right.

At some point in life, whether be­cause of illness, accident, injury, or aging, each of us will experience losses and limitations that invite us to wrestle with the question, how can I be faithful in my new circumstances? A spiritual director suggested to me that the challenges and changes I faced were giving my life a more contemplative shape, a deeper monastic spirit.

In an attempt to feel some control over my new routine, I made a list of what I was supposed to do and when I was supposed to do it. One day, as I looked at this schedule, I saw that it is not unlike the monastic practice of praying the hours, marking the day with eight times of prayer. I inserted the Latin names of the hours of prayer into my daily routine of pills and naps and exercises. Now, each time I check the schedule I’m reminded that my day is permeated with prayer.

Slowly, I began to experience a shift. Instead of fighting the changes and limits, I’ve begun to embrace them as a choice I am making in order to live faithfully, somewhat like a monk in the world. Instead of fighting Parkinson’s so I can have time for my spiritual practice, it has become my spiritual practice. Parkin­son’s is the hermitage where I slow down, pay attention, and concentrate on what is needful in the moment.

As I focused on my body in a new way, the phrase "body prayer" kept coming to mind. I started to redefine spiritual practices in ways that served my new circumstances. For instance, I sometimes need to sit down and rest a few minutes between tasks, and most days I take a nap. I re­frame these breaks as sabbath times.

Forgiveness is a spiritual discipline, and compassion, too, and I realized it is not just people I need to forgive. I practice forgiving my body for getting sick and growing old, and forgiving myself for my times of discouragement or despair. I try to practice compassion toward each part of my body that isn’t working quite right, compassion toward myself for not being perfect.

My usual styles of prayer haven’t been working anymore. Restless leg syn­­drome, which can sometimes accompany Par­kinson’s, frequently makes me unable to sit still for 20 minutes (or even five) of prayerful meditation, as I have done for more than 30 years. So I focus on my love relationship with the holy instead of on prayer styles or techniques. I pray the Jesus Prayer as I walk. I make yoga sessions a body prayer. I repeat a sacred mantra as I wash dishes. I pray without judging how I’m praying. And because my life now holds a lot of obligations and a good share of frustration, I pray in whatever way is pleasing to me each day, so that prayer is not just another demand on my to-do list, but something I anticipate with delight, a date with my Beloved.

Another practice I engage in is fasting. As best I can, I fast both from unhealthy foods and from the negativity that surrounds Parkinson’s: my own fears, other people’s horror stories, and the media’s gloom-and-doom attitudes.

The practice of gratitude is easy, most days. I offer the Spirit my thanks, not for this illness, but for the gifts the illness has brought me. Gratitude helps me to focus not on what is lost, but on what is left.

Surrender is a vital and particularly difficult spiritual discipline. I have always tried to surrender to the Spirit. Now I make a conscious effort to surrender to Parkinson’s, to changes that I don’t want. I am learning to surrender to how I am instead of clutching at how I wish I were or how I used to be.

I am learning to extend hospitality toward my body, even with its difficult changes, and toward the feelings I don’t really want, like discouragement, vulnerability, and fear. This practice is important to me because of our tendency in times of illness or injury to see our body and our emotions as enemies that we need to fight and conquer.

Some days I don’t care one bit about praying the hours or learning what this illness has to teach me. There are times when my idea of fasting means denying myself everything other than Ben and Jerry’s New York Super Fudge Chunk ice cream. But most of the time, this reframing deepens my spiritual life and allows me to experience the abundant love and grace of a good God. I no longer have the sense of being a victim.

I don’t know what the future will bring, but then, I have never known that, even if I pretended that I did. I’m not sure if I’ll always be capable of finding the peace I’ve found at this point. For now, my work is to receive whatever each day brings. My limited self and the limitless God come together to empower me to walk a path I never expected to walk and to walk it most days with gratitude.

Comments

PD as pilgrimage

Janice, you captured so many of my feelings, thoughts, frustrations, and yes--resolve. I have been serving a church in central VT for several years now, and at the same time struggling with the effects of Parkinson's symptoms. The most frustrating thing for me is that I am doing something I really love and know God directed me towards. How I wish my body hadn't betrayed me!

There has been a new twist to the whole thing though: what I have may actually be Lyme disease-induced Parkinson's. Lyme tests came out positive; now I am undergoing a regimen of antibiotics and system support (probiotics, etc.) That means more pills!! Which is why I am writing, for you have provided a new perspective, and I am truly grateful for a fresh breeze blowing through the window of my life at this time.

Faith makes it possible to cope, but even more--makes it possible to face life differently. When things seem overwhelmingly hard, we can buckle under and give up or we can find new ways to do things, and even find new meaning in life.

I don't know what it would have been like to come to my church whole in body. Yet serving this congregation, with my difficulties is a daily reminder that many who come through this church's doors have greater struggles and challenges than I. It is a humbling experience.

Thank you for your thoughts put so eloquently--and so timely for me.