I met Jerry Lewis on several occasions, but it was a time before I met him that lingers most vividly in the rapid access file.
My youngest daughter was born with muscular dystrophy. For those fortunate enough not to be familiar with this most exquisitely horrible disease, there are many different forms of muscular dystrophy. The term, muscular dystrophy, refers to a wide group of muscle diseases, all of which result in irreversible and progressive weakening and breakdown of muscle tissue over greater or lesser (depending on the form of the disease) periods of time. Some forms present in early childhood, some in adulthood, some are considered fatal, some not, some forms result in severe disability, some in more manageable degrees. There is no cure. It is thought to be inherited, but occasional spontaneous genetic mutations arise, as is the case with my sweet Katherine.
My ex-wife was the first to notice something was wrong. Several times she told me she thought Katherine was having trouble hearing. Each time I would walk into whatever room Katherine was in, stand behind her and say her name. Each time she heard me and so I dismissed my ex-wife’s concerns. I had forgotten that my voice was much deeper than my ex-wife’s, so when she insisted on taking Katherine to a local doctor for tests, I went along more to keep the peace than because I believed anything was wrong.
Pain, as much as joy, is the acid that etches the copper plate of our memories. I remember standing in the room of the little clinic our doctor sent us to down in Lebanon, New Hampshire, not far from where we were living in those distant days. I remember it was a pair of doctors, a man and a woman, who broke the news to us. I remember how my head and ears started buzzing even as I wondered why the words—muscular dystrophy—meant nothing to me.
We drove home, Katherine and my ex-wife and I, my head still buzzing, as I kept thinking, I’ve heard those words before, I’m not an idiot, I should know what they mean, but unable to attach any meaning or significance to them. It wasn’t until we got home and I looked up muscular dystrophy in the Encyclopedia Britannica that the buzzing stopped and the reality set in.
The feeling I was left with was a sensation I can only describe as hollow, as if something had been cut out of me. The loss of a child is perhaps the worst thing that can happen to anyone. To be told, as we were at the children’s hospital in Boston where we went for further tests (in the back of your mind you believe that if you go to enough doctors, have enough tests, the diagnosis will change, and everything will be right again) that your child may die, or may not, no one knows, leaves you in a state of turmoil as horrible and incomprehensible as death, and yet somehow almost worse, because you try to mitigate your despair with hope.
I used to put the children to bed at night. They would gather in my office and I would read to them, a different story for each child, and then put them in bed. And then, later, I would go into each room and sit and watch them sleep. There is nothing more wonderful than a sleeping child; in sleep, they belong completely to you in a way that they never do awake.
After the diagnosis I would sit and watch Katherine, face like an angel, perfect little mouth open, breath sweet, hair splayed on the pillow, and the reality of her disease would ebb and swell, so that at times I could almost make myself believe there was nothing wrong, that our world would go back to what it had been, and at other times rage would rise up in me, swelling my throat until I thought I might choke, rage at something I could neither kill nor fight nor even change. No one can understand helplessness who has never been unable to help his child.
Those first few days after the diagnosis were completely unreal, and time has kindly wiped many of those memories away, but I do remember my ex-wife reaching out to friends of hers in Los Angeles, calling people, talking endlessly on the phone.
I assume that what happened next was the result of her telling someone who knew someone who knew Jerry Lewis, but one evening, only a few days after the diagnosis, the telephone rang. I was in the kitchen when I picked it up and I knew instantly who it was, before he had even identified himself, the famous voice being as singular and distinctive as his particular style of comedy.
Nor do I even remember now what he said. What remains is the kindness of his voice, the gentle encouragement of his words, and the sense afterward that we weren’t alone.
That gesture, that act of kindness coming from a total stranger, unleashed something in me. After the call, I took Max, my magnificent Chesapeake Bay retriever, out for a walk and for the first time since we got the diagnosis, I wept, though “wept” is a most inadequate word. I howled and roared and raged, distressing my poor friend terribly, causing him to keep bumping up against my legs until at last I could calm myself enough to kneel down and bury my face in his fur.
A year or so later my ex-wife and Katherine and I all appeared on the famous Labor Day telethon, and Mr. Lewis was as gracious and kind as he could be given the constraints of trying to do an exceptionally long and difficult live show.
I have no idea how many countless millions upon millions of dollars Jerry Lewis raised for the Muscular Dystrophy Association, for “Jerry’s kids,” his kids, but his telethon was considered to be the most effective fund-raising effort in television history. Mr. Lewis also lobbied private donors, sponsors, Congress, and civic organizations, raising more funds, appearing at countless public functions, giving speeches, and reaching out quietly to private individuals, including a distraught family in New Hampshire. He never revealed why he was so single-mindedly devoted to putting an end to muscular dystrophy, and he may not have lived long enough to see a cure, but he accomplished more than any other humanitarian, more than twenty other humanitarians, and he lived long enough to see the discovery of the DNA involved in the process, which is a giant step closer to someday finding the cure. He deserves every accolade, all the accolades, all the honors, all the gratitude, all the love.
I write this as the eclipse is occurring. In a simpler time, a simpler culture, it would be possible to believe the sun is hiding his face in sorrow and respect for Jerry Lewis.