Self Cure

by Dean Kramer
February, 2006

In the 22 years since I was diagnosed with MS there have been times when I was unaware of having the disease. For the first 10 years I was mostly asymptomatic. I told myself I’d been misdiagnosed and that the occasional numbness in my feet was due to a sports injury. I avoided information, not to mention doctors, and thought, “If this is MS, it’s no big deal.”

After 12 years or so, MS undeniably reappeared in my life. But during the second period the attacks were infrequent. The losses of ability following each attack were minimal and mostly confined to my legs. I was able to accommodate. I began to use a cane, then a walker and, finally, a wheelchair. In these Cripple Creek pages I wrote positive, up-beat essays about my adventures with assistive technology. I began using the “D” word, disabled, to describe myself. Seeking out other disabled people, mostly those disabled from birth or by accident, I learned as much as I could about how to assure myself continuing quality of life. “Okay,” I thought, “Maybe I can’t walk as well, but equipment gets me around to do much of what I used to do and lots of things I want to do. It’s really not that big a deal.”

Lately another aspect of MS has begun insinuating itself into my experience. Originally my symptoms involved only my legs. But for the last 3 years MS has interfered with my bladder control. And for several months now my right hand has been affected with numbness, weakness, and lack of coordination. This last symptom is the one that woke me up to the concept of disease —MS, not a static situation such as results from an injury, is a disease for which there is, as yet, no cure. Diseases can progress as mine certainly has, and there’s no telling if or when such worsening will cease. So today I sat with this thought: “I have a disease. It’s gotten worse, and it might get worse yet.”

At that point the squeaky hamster wheel in my brain began whirring faster and faster. SQUEAK What if it gets worse? SQUEAK SQUEAK Will I be able to continue working? SQUEAK or, should I quit work and enjoy playing while I’m still able? SQUEAK SQUEAK If I can’t work how will I survive? SQUEAK is there something I should be doing right now to prevent the disease from ruining more of my nervous system? SQUEAK SQUEAK SQUEAK. I felt very sad.

I thought of the books I’ve read by people who “cured” their MS by practicing various regimens. The books are sincerely written and humbly offered. Depending on the author, one is encouraged to eat certain foods, do particular exercises, take specific supplements, or a combination of all these and, in addition, change one’s entire way of experiencing life. I ran through all of the things I’d tried over the years; the supplements, the exercises, the diets, the alternative therapies, the medications and the mind-altering attitude adjustments all undertaken in the hope my MS would not progress. Now it was progressing anyway after I’d shelled out some serious bucks and invested an awful lot of time.

In a Judy Garland-as-Dorothy Gale frame of mind I thought, “If happy little blue birds fly beyond their MS, why, oh why, can’t I?” I began to feel a bit cheated and resentful.

Here’s the thought that stilled the hamster wheel today: The people who wrote those books wrote them during their first 10 years with Relapsing/Remitting MS—a time when most of us recover from our attacks with a low burden of disability no matter what we do. I have yet to see such a book written by someone who recovered completely from significant disability after the Secondary/Progressive stage.

There’s a vortex that swirls around chronic disease. It’s kind of like the vortex of dirt that whirled around the cartoon character, Pigpen, in the Peanuts comic strip. I’m not sure it‘s any cleaner, either. It’s set in motion by the hopes and fears of those with the disease, but receives much additional energy from those who have something to gain from those who suffer. There’s money to be made. Alternatives may not cost as much, but supplement suppliers and adjunctive therapists are no less focused on their bottom lines than pharmaceutical companies and doctors are. Or, the rewards to be reaped may be subtler having to do with a sense of moral or even spiritual authority. Sometimes there’s celebrity to be had. I get sucked into that vortex, perhaps by a magazine article, perhaps by a televised interview but, truthfully, by my hopes and fears. Once within the whirlwind I lose my way, coming to rest days or weeks later with a sense of failure, a new supply of useless diet items, and an emptier wallet

Most of the great spiritual teachers have told us, in words from “The kingdom of God is within” to “live in the eternal Now” that we each have all that’s necessary to create a wholesome life. I don’t think that means I don’t need a wheelchair or that I’ll be just fine if I never take another pill. I don’t take it to mean that I can cure my MS. What I might be able to cure (in the sense that one cures meat or tobacco) is my self. With careful attention, I might someday be cured of hope and fear. I’d be hopeless in the sense of having no expectations and, thus, fearless as well. With grace, my self might become as tough, concentrated and nourishing as a piece of jerky and as insignificant.

In an odd way curing myself of those things seems more accessible, less expensive and slavish a goal than believing an outside agent will repair my brain and spinal cord, at least until one of them proves universally efficacious. Though I will continue to use those substances which I experience as helpful, it makes sense to become aware of myself as I am and proceed with what needs curing. And I think, “There’s so much work to do in that department that it makes the disease seem less of a big deal.”