Restoring My Soul

by Dean Kramer
January, 2006

Given MS with its unpleasant symptoms, one’s worries about prognosis, the struggle to keep a positive outlook if the MS worsens, and the difficulty maintaining self-esteem as one becomes more visibly disabled, it seems important to have some areas in life to feel competent, relaxed, and generally delighted with the world in which one finds oneself.

For me, that place has always been outdoors in nature and, since my legs no longer carry me on rambles, my big electric scooter has become the lifeline to that world here at Cripple Creek. The scooter is a 300 lb. machine with dual motors that essentially give it 4-wheel drive. It takes me to fields, woods and pond bank. But as my MS has grown worse I’ve found myself spending more and more time indoors, especially in the winter.

For one thing, though I do less housework than I once did it takes me an inordinately long time to accomplish the little bit I still do.

Many years ago I knew a woman who kept a tortoise. The beast would follow her from room to room in the apartment where they lived. But, poor thing, by the time it got to the room my friend had gone to, my friend was ready to return to the room the tortoise had just left.

So it’s become with housework and me. Some days after my legs, stiff and slow to respond, have carried me haltingly from one room to another I find that my numb right hand has dropped whatever I was carrying along the way and my brain, with difficulties of its own, has forgotten why I was carrying whatever it was to begin with. (And, meanwhile, the dog has picked it up and run outside with it because I also forgot to close the dog door.) And I have to go back and start over.

For another thing, my professional work involves using a computer. While I’m aware of the commercials with businessmen lying beneath trees using their wireless laptops, out here, where the buses don’t run and the tractors never stop, we have dial-up Internet connections and we’re grateful for them, believe you me. (Can you hear me now, Mr. Verizon?)

So, after several hours of staggering through household chores and wondering why I’m sitting at my computer, I take the dog and get on my scooter. I ride around the pond, up the ridge into the woods, or out into the fields for the restorative that only nature can provide me.

When I’m outside among the trees I use my mind differently than when in the house. Nagging worries seem to fall away. I regain perspective. I’m taken out of myself and feel peaceful and invigorated at the same time. I enjoy cold, cloudy, winter days when the stark woods is hushed and still and the trees seem to be holding a collective breath, waiting for the snow to begin falling. I park in a shady spot on hot summer afternoons when the locusts clatter and the creek burbles over its rocky bed.

In fact, when one year when I was (mistakenly) told I had a potentially fatal illness, the first thing I did after returning home from the doctor was ride out by Cripple Creek. I saw a small songbird that I’d never seen before—a new one for my Life List. Because it was early May there were also wild flowers blooming in little crannies among the stones by the stream bank. Thinking I might not last the summer made those moments intensely precious. I promised myself that I would spend whatever time I had left sitting outside and a great sense of ease came over me.

Last November the scooter died. Its board went bad and couldn’t be repaired. The board was going cost as much to replace as a new travel scooter, something I also needed. I had to think long and hard about whether I could afford the out-of-pocket expense to keep the big scooter going. Insurance companies, taking their cue from the government programs, are interested only in one’s in-home mobility. My scooter was totally not for mobility in the home.

Desperately casting about for workable alternatives, I tried using a 4-wheeled walker, but my flapping feet kept getting tangled with the wheels, never mind the dog leash. I had to pay too much attention to myself. I couldn’t see the forest for the Dean.

I tried walking with two canes but, even without the dog, it was both tiring and anxiety-provoking. I was able to make the quarter-mile trip to a bench by the pond but wasn’t sure I’d have the energy to get home again. I knew if I fell I’d have a hard time regaining my feet. Call for help using my cell phone? Out here where the buses don’t run, the cell phones aren’t reliable either. Besides, I didn’t like going without the dog (nor did he much appreciate it).

I had an old beat up scooter I could no longer use regularly. I couldn’t load it into the car. It was too difficult to break down. It was too small for me. On it, I felt like an overweight shriner on a pocket bike. So in need of a nature-fix was I, though, that I tried taking it to the woods with the dog. I couldn’t ride it across the field, but I figured to take it down the dirt and gravel driveway to the well-packed path that goes to my usual sitting places. We have a multitude of black walnut trees along the driveway. The scooter had 1.5 inches of ground clearance. It was like riding a skateboard on a cobblestone street. The dog bounced a few times and fell off. I got a headache. Already on its last legs, the scooter handled two trips and had to be retired. (The dog expressed his displeasure by chewing through the scooter’s charging cord.)

So, finally, in early December I bit the financial bullet and asked the repairman to order me a new board. The scooter came home the Monday after New Year’s Day and I charged it overnight.

Tuesday I put the dog on his leash and climbed on the scooter. I spent Tuesday morning weeping tears of gratitude and joy sitting in the sun and gazing at the water. I listened to the silence of the winter woods and had the pleasure of watching my little dog enjoy a good, long run. Later that day I hauled some heavy items myself instead of having to ask for (and wait for) help.

If, during your partnership with MS, you find something that brings you pleasure enough to make you forget, if only while you’re at it, that you have a progressive, incurable disease, never let it go. It could be anything—reading good books in a quiet spot, spending time with a hobby, prayer and meditation at a particular time of day—anything at all. It’s good to have work, friends and family. It’s good to have efficacious medicine and caring professionals to prescribe it. But it’s just as necessary to have (in addition to those other necessary things) some little something that restores your soul—especially when none of the others are available or working well.

I have made a contract with myself (and my dog) not to get so caught up in my “oughts” that I forget to give us both the outdoor time we love. And I’ve begun to put pennies away against the day when the scooter is beyond repairing. And now that I’ve come to this last sentence, I’m going out for a ride with the dog.