Within a short time, I could no longer play the piano, concertina or harmonium without pain, and could only type with my right hand. (I am using dictation software to write this article.) Centering Prayer became difficult because I could no longer sit still comfortably for any period of time. Cooking became a challenge as my left hand became less adept at holding vegetables while my right hand cut them. And while "any place is walking distance if you have the time" had always been a motto of mine, I soon found even walking taxing. Spinal stenosis – a condition in which the bones of the spine thicken, putting pressure on the spinal cord and causing weakness, loss of dexterity, and decreased range of motion on one side of the body – had left me unable to do a lot of the things which had previously given me joy.
I had surgery which, unfortunately, didn't work; in fact, I was worse after it than before. Everything from picking things up off the floor to putting on my pants became harder, so I did less, and between my physical inertness, and depression urging me to spend many hours sleeping on the couch, I managed to put on about 90 pounds. I went from being a person whose age people routinely guessed ten years low, to getting offered senior citizen discounts at a glance.
I developed an obsession with my "glory days," when I could do so many things I could no longer do, or do as well as I used to. At the same time, I would see friends 10 to 20 years older than me – I am 53 now – move around much more spryly than I could, and be beset with panic about ending up a miserable, contracted 65-year-old in a wheelchair. I was caught between mourning the past and dreading the future.
And the fatigue! Just walking eight tenths of a mile to church and back for Morning Prayer leaves me well-nigh exhausted, and if I follow that up with an aquacise class at the gym, I’ll either need to take a nap or drag myself through the rest of the day at 60% power. My left hand has become so maladroit that even tying my shoes makes me break a sweat. Moving around in a crowded room has become an ordeal, as I strive not to use other people as a luge course from my seat to the bathroom or buffet. Even if it’s for something I love, like shape-note singing, if it’s going to involve a lot of people in close quarters, or there aren’t comfortable chairs, I may stay home. My world is contracting.
“Most people start the day with an unlimited amount of possibilities, and energy to do whatever they desire, especially young people,” wrote a blogger with Lupus. “The hardest thing I ever had to learn is to slow down, and not do everything. I fight this to this day. I hate feeling left out, having to choose to stay home, or to not get things done that I want to.”
I hate it, too, and the anxiety and weariness still trouble me during my weaker moments. I still fiercely miss making music with friends, cooking without dropping things all the time, and walking for pleasure, and I still dread those further losses that may be coming. But the good news is, I have begun, with the help of my wife and a lot of prayerful introspection, to emerge from that narrow space between the Scylla of the past and the dire Charybdis of the future. It sounds ridiculously obvious, but the secret is to focus on what I can do now.
I cannot play instruments that require the equal use of both hands, but I can play predominantly right-handed instruments like the Irish bodhran, the Basque string drum, the Indian karatals (tiny brass cymbals)—and thanks to some kind biomechanical engineers at Temple University, I now have a motorized harmonium that doesn’t require my left hand to pump the bellows. (I also found a one-handed accordion, with a keyboard on the right but no bass or chord buttons on the left.)
I cannot sit, erect and still, in meditation any longer, but I can pray Evening Prayer or Compline out of the Prayerbook, pray the Rosary once a week with the Morning Meditation group at church, and observe novenas when saints to whom I feel a connection come up in the calendar.
I cannot practice yoga or use the elliptical exerciser, but I can go to aquacise classes and walk to church for Morning Prayer.
It’s hard to slice and dice by hand, but it’s easy to use a Cuisinart and buy frozen chopped onions and pre-minced garlic. (Helpful hint: a hardboiled egg slicer can be used to slice mushrooms, too.)
All of these accommodations have been exercises in humility, of course; having to face loss of ability and accept help are potent medicine for a misplaced sense of self. The cooking accommodations have also shown me that many of the things I thought were quality-of-life choices—always using fresh garlic, rather than powdered or pre-minced, for instance—were actually ego-driven choices rooted in pride; whatever else I was, I wasn’t one of those sorry people who didn’t know what to do with fresh herbs. Now, I save physical discomfort by opening a bag of frozen chopped onions rather than chopping them fresh, and each time I do it, the ego discomfort is a little less.
Best of all, God seems to be validating my adjustments with a stream of successful and rewarding workshops, discussions, and other professional and volunteer opportunities; chances to use the training I received at the Shalem Institute, graduate school and seminary. It almost seemed as though every time I resigned myself to finding a new way of doing something, I get a phone call or email about some new project. It's enough to make you think you're doing something right.
Perhaps most excitingly, I got an email asking me to serve as a Formation Counselor for the Third Order of St. Francis--a religious order within the Episcopal Church whose members live a Franciscan life, with a Rule and under vows, but in the world rather than in community. I had plenty of reservations, and plenty of reasons to say "no". Things like deadlines, files, email, and other things to be kept straight and organized can be daunting to me. Moreover, as I read the handbook and other materials, I realized how much I had been bobbing along the surface of Third Order life in some ways.
When I was in formation, I took to heart what the formation letters said about how it was I, and not my family, who was becoming a Franciscan, and when my children were small – and until quite recently – I missed a lot of fellowship meetings because they were on Saturday mornings, which I considered family time. While the day-to-day business of keeping the rule was something I could still do, I fell out of touch with the larger order in some ways; the newsletters, the intercession list, and other ways of keeping my finger on the pulse sort of fell through the cracks. But I remembered what the Principles of the Order say about humility: "when asked to undertake work of which they feel unworthy or incapable they do not shrink from it on the grounds of humility, but confidently attempt it through the power that is made perfect in weakness."