Montel, There’s More to the MS Battle

I don’t want this to sound like a celebrity shootout at the MS corral, but Montel Williams (“TV Host’s Fight Against MS More Than Just Talk,” Nov. 20) put a very personal and misleading spin on this disease and on the valiant and dedicated effort that many people--particularly those associated with the National Multiple Sclerosis Society--are making to ease the plight of those affected and to get us to the point where “cure” and “reversal” are at least dreamable.

I understand Williams’ impatience and his insistence that a cure is just around the corner, a corner he feels obliged to turn all by himself. We were all there once, those nightmare first years after some doctor lays your fate out on the table for you and you bounce from “Why me?” to “Not me!” If I had come out when I first came down--which seems to be pretty much what Williams did--my anger and bitterness would have been the primary expression too.

It’s my experience that we all seem to go through that first stage, and it includes resentment against everyone who has been working to control and alleviate this disease, resentment because they didn’t halt it before it hit me.

Fortunately, most of those who contract this autoimmune disease (tragically, someone is newly diagnosed each hour) didn’t have their own show (or the celebrity afterlife of several years on a popular sitcom), so their anger was personal and muffled and endured until they found a way to face the challenge for all the years that stretch ahead.

You inform yourself, and an early conviction is that you know it all. But you eventually realize that all you know is the hard-won understanding scientists have achieved with the assistance of activists. You then learn to appreciate and to help the people who are raising the money and the awareness and the level of knowledge that progressively are making the experience of MS more livable and bearable.

You finally find your way through tears and frustration--the same ones Williams shed and vented on Larry King’s show--to the endurance and courage that will get you through it. And, yes, to the appreciation that some brave souls are out there finding the slow, sure keys to that endurance.

My point for Williams is be careful what you say, because there are people listening. And if you misinform them--and you are doing that--they will suffer.

In his article, Williams acknowledges that he follows “the traditional methods” of treatment, but he dismisses them, saying, “The research isn’t going to find a cure. It’s going for stopgap measures.” Montel, stopgap measures are a big leap forward from where we were before you joined us.

His interview suggests that he has no appreciation of how fortunate he is to have come to his confrontation with MS after all those hundreds of millions of dollars raised for research and assistance had resulted in the identification and development of the ABC drugs--Avonex, Betaseron and Copaxon.

When I was first diagnosed in 1984, there was nothing you could do to affect the course of your disease and alleviate the staggering symptoms of MS. Research, funded in substantial part by the MS Society that Williams seems to resent, took us a long way from “diagnose and adios,” the fatalistic, frustrated phrase neurologists used (but not to their patients) in those days.

The great thing the ABCs did is empower us against this disease for the first time. Every time we inject whichever medication is identified for us, we are sticking a needle into MS.

These reliefs were not brought into the MS mix until 1993. Life changed dramatically for all of us with the introduction of these “stopgap measures.” I think one of the reasons I waited so pathetically long before publicly--even privately--acknowledging my MS is that, pre-ABC, the disease was so uncontrollably diminishing that I was afraid of limiting my work possibilities.

Thank God, before I did emerge and did feel obligated to inform others, I was myself informed. I was informed by the knowledge the scientists (assisted by the activists) had so laboriously uncovered. I was informed by the empowerment that the product of their efforts had brought to my own life.

Williams should have a mind open to the knowledge others have uncovered for him and a heart open to the loving commitment of so many volunteers who raised the money and public awareness needed to make these strides. He can, with his gigantic access to the public, make a big difference. But he has to get a better bead on who are the enemies and who are his allies.

The best thing he can do for his MS comrades is just do his TV show every week, demonstrating that we are capable of such considerable application and energy expenditure. There has been progress, and we are the living symbols of it. That realization is what brought me out.

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Actor-author David L. Lander played Squiggy for seven years on the “Laverne & Shirley” series. His first book, “Fall Down Laughing,” was published this year by Tarcher/Putnam and chronicles his personal fight against multiple sclerosis.