“IT HURTS. DO WHATEVER YOU CAN.”
My friend Lenny is a big, burly guy. On a good day you would guess that he was one of the Soprano’s. His Brooklyn accent and shrewd, quick wit served him perfectly as he spent his life in the “shmatteh” trade – a clothing buyer for a premier chain of department stores. And tough, too, the way you have to be in a business that exemplifies cut-throat. His upbringing also earned him the scars that make a man either tough or a Woody Allen nebbish, solve a problem or get crushed under its wheels.

All pretenses of Lenny’s gruff burliness were shredded in 2006, when his beloved Judy succumbed to ALS. It is an illness so insidious and indescribable that the most we can do is refer to it in the shadow of its most noteworthy victim, Lou Gehrig’s Disease. The short of it, according to the ALS Association, is that “the progressive degeneration of the motor neurons eventually leads to their death. When the motor neurons die, the ability of the brain to initiate and control muscle movement is lost. With voluntary muscle action progressively affected, patients in the later stages of the disease may become totally paralyzed, then die.”

At Holiday time in 2005, Lenny noticed that Judy became winded and struggled up a simple staircase. No, it was really no cause for alarm. But, in short order, Judy’s leg dropped and her breathing became increasingly labored. Impossible to ignore, Judy and Lenny jumped onto the frustrating merry-go-round that so many ALS victims describe, an endless tail-chasing exercise of eight doctors, countless tests, some desperately painful, repeated misdiagnoses and therapies, surgeries, and treatments that proved to be of no avail. By April, Lenny had already to take her to the bathroom, dress her, and feed her. The diagnosis of ALS was finally made. By August, she was bedridden, gagging on her own saliva, virtually immobile. Shortly thereafter, she was placed on a ventilator, never again to breathe on her own, until at her order the breathing tube was removed. She surrendered, finding her eternal peace, just a year after she first stumbled climbing the steps.

According to my count, it has taken me just 150 words to summarize the horrific track of a terrifying disease, each minute of which hangs as an eternity. Were I to write an encyclopedia, I could bring no more comfort to Lenny or thousands like him who watch helplessly as their beloved succumb to ALS. For, there is yet no cure, not even sufficient palliative care, for a syndrome that is so painfully debilitating and inevitably fatal.

Research and faith hold all the cards. Aggressive research is being conducted, the most hopeful being in the realm of stem-cell and gene therapy. How many years and dollars will it take to cure or even allay ALS? Only God knows.

Keeping faith, though, is even trickier – faith in spite of the damning evidence that could so easily stifle faith . . . Faith in the wisdom of researchers who labor selflessly to search out cures and healing. Faith in the benevolence of everyday men and women, who give their voice, time, and wherewithal to promote awareness and research. Faith in each other for the empathy we can share with victims and their loved ones, which says in actions even louder than words, “We are here. We will not abandon you. We will stay by your side and use whatever power we have to share your pain and heartbreak.” Faith, above all, in God, who makes no promise of life without the ravages of disease, but who has invested us with minds and hearts to search out cures and healings, if we would only use them wisely and compassionately.

I once asked Lenny, were he more articulate with his pen, what he would say to his readers. “I don’t even know,” he replied with an edge of resignation atypical for a guy who has made his living speaking forthrightly. “Tell them it hurts,” he said almost as an afterthought. “Tell them to put themselves in my place, or in Judy’s place. Tell them that it’s almost too much to bear. Tell them to do whatever they can.”

Now you’ve heard from Lenny in words more articulate than my own. Don’t let your own silence become deafening. It hurts. Do whatever you can.