Necessary Losses

by Dean Kramer
June, 2005

Several years ago I reviewed a book called Multiple Sclerosis through History and Human Life. Most interesting and terrifying to me were descriptions of treatments and therapies given to people with MS back in the dawn of the disease’s history. Neurologic medicine was in its infancy and some of the therapies were so gruesome I found it hard to imagine anyone willingly enduring, never mind eagerly seeking, them. The author commented that such treatments as those, during a time of relative ignorance, were a far cry from the treatments we have today.

But sometimes I wonder. I wonder as I read about a fast-tracked therapy that has now been pulled off the market due to four users having contracted a fatal virus (as of June 3^rd, 2005, three of them had died). I have a good friend who now has congestive heart disease due to a chemotherapy drug used to treat her MS.

I inject myself with a substance which is outrageously expensive. No one is sure how it works to reduce the number and severity of relapses. And it only reduces them by 33% (depending on whose stats you read). It’s been in use for 10 years and no fatal side effects have been attributed to it. But, then, only recently has liver damage been attributed to one of the other injectable therapies over long-term use. So who knows what my therapeutic will prove to be responsible for down the road?

And these are pharmaceutical company products, scientifically tested for efficacy and safety.

Sometimes I imagine a person with MS two hundred years from now reading about all these injections, IV chemotherapies, steroid treatments, plasmapheresis and (maybe in the near future) stem cell implants, and she says, “Whoa! Those poor suckers put themselves through all that pain and expense doing things that didn’t work very well, never knowing that a simple zap to gene #245 would set everything right.”

None of us wants to get worse. But for two thirds of us MS gets worse. For the least fortunate, it gets worse steadily and relatively quickly. But for the vast majority of us it gets worse very slowly over a long period of time. Some of our friends without MS will suffer the frailties of old age more quickly than our MS will progress—that’s how slowly it can move. Yet, instead of being okay with that, many of us, myself included, become fear-ruled pharmaceutical (or alternative therapy) customers clinging to the hope that, with the right treatment, we can get back to our old selves. I’ve lived with MS for 21 years. If I really did get back to my old self, that self would be 54 and relatively out of shape due to several years of moderate disability compared with the 33 year old I was when MS made its appearance in my body. With or without MS, my old self is long gone.

Like many of us, I nurture fantasies about how it would be if I didn’t have MS and I’m constantly scanning for potential fixes. I think of myself as well-educated in scientific methodology—not one to jump on a band-wagon solely on the basis of testimony (“so-and-so’s mom was in a wheelchair and now she can walk because she ate nothing but raw vegetables for 6 weeks.”) But, desperate to get better, I have (in addition to my pharmaceuticals) had my share of enthusiasms involving various combinations of diet, supplements, exercises, and spiritually-based wellness meditations. These have been obsessively pursued (Hey, honey, I think the fish oil is making a difference!”) until the placebo effect diminished and I found my old self no nearer than before my undertaking. By that time I’d usually heard of another intriguing possibility and was off to the races again.

MS is such an individual, on-again-off-again experience that if I see a friend getting better I think, enviously, “What’s she doing that I’m not doing? How come she’s walking and I need a wheelchair?” Six months later she’s riding a scooter and I’m using a cane while trying to contain my schadenfreude.

The ads for MS therapies talk about taking control, not letting “it” get me and destroy my life as if MS is a terrorist and the chemicals are assault weapons. Playing on my anxieties, the ads ask me to believe that with the right pharmaceutical weapon I can hold Evil and all its threatened losses, at bay. But the terrorist, in this case, is my own immune system—a necessary part of me. Maybe my life would be less stressful and anxiety-driven if I wasn’t constantly at war with my own body on an emotional level.

To find serenity, I need to create a reality in which I accept and love myself and my MS, no simple task as the disease has brought many unwelcome situations into my life. There have been lost activities for which there is no compensating. There are inaccessible events and venues I really wish I could get to. There are close friends and family members who, try though they do, really can’t understand what goes on with me. There are arguments about that.

But, from where I stand now (and I can still stand and even walk to some extent, today) acceptance seems a worthy and rewarding goal in the long term. Accepting the probability that my MS will worsen to some degree, I can better handle the bumps in the road free from the panic and disappointment I find as crippling as the symptoms themselves. Acceptance creates honesty with my family and friends, not allowing or encouraging them to believe I’m the exception who will never get worse and who will always be able to perform her current duties. That honesty minimizes the chance of future guilt and recrimination. With acceptance, I can exercise, take supplements, vary my diet, and use pharmaceuticals—whatever I choose, not because it will make my MS go away but in order to optimize my life with MS.

Last December I lost my best friend in the world. She was Griffin, my little westie, an assistance dog who had become old, sick, and really needed to go. It took me a long time to see that. It’s also taken me a long time to get past my grief. Twink has her beloved shepherd, Bravo, and there’s been another dog living here at Cripple Creek, a Lab mix called Sadie. She was left here by someone who didn’t want her and she’s really had no one to call her own. After Griffin died Sadie began asking if she might be mine but, since she wasn’t the dog I’d lost, I didn’t really notice her. Last week I brought another westie here on a trial basis. He was a wonderful young fellow. He reminded me of all the good times I’d shared with Griffin before she’d aged into a shadow of her old self and I smiled at the memories. Within days, though, I knew I could no longer keep a small dog. My balance is too compromised, my reflexes too slow to handle, walk or care for a being so quick and low to the ground. It was another MS-related loss. I had to face it, feel it, and accept it.

In that moment of acceptance there stood Sadie. I was afraid I’d never have a bond with a dog again. But when I could see beyond my fear, there was a dog in need of someone to bond with. She is proving willing to be trained and I am letting her tell me who she is. She’s big enough to steady me when I walk. She’s low-energy, calm and, with a short coat, low maintenance—the perfect dog for me with my MS at present.

MS brings its losses, but there are more worthy things to lose. Clinging to my old self and my old ideas about how it’s got to be, battling against terrorist diseases with dangerous chemical weapons, living in fear of the next loss—those won’t bring me peace. Acceptance moves me forward and offers possibilities I’d never yet considered. It doesn’t cure MS but it nurtures my soul and, for me, a well-nourished soul is the very definition of Homeland Security.