Jerry Lewis

August 21st, 2017 20 Comments


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.

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  1. Anonymous says:

    I am sorry to hear about your daughter. I can not imagine losing a child like that.

    • My wife pointed out to me that apparently several people got the impression my daughter had died. I apologize. I did not mean to imply that. In fact, my sweet Katherine is alive and well, confined to a wheelchair, and dealing with some of the ancillary effects of muscular dystrophy, but with nothing wrong with her brain: she is considerably smarter and more productive than her father, and will probably, ultimately, accomplish far more than I.

  2. Anonymous says:

    What a touching tribute. I wonder what led you to write about this at this time.
    I remember, as a small child, going around the neighborhood with a little black and orange cardboard collection box to solicit donations for muscular dystrophy and other insidious diseases that were not well understood. My mother was a tireless proponent of these causes (and she had a close friend with MD), and she would coach us on the pronunciation and send us up the sidewalk to the next house. I don’t know if this would be considered child exploitation now, but back then, in Southeastern PA, it was safe, and everyone in our neighbor was at least acquainted. And it was a good lesson for me on many levels.

    I only recently found you blog, but I enjoy your writing quite a bit. I read your book, The Accidental Cowboy, straight through the minute I received it in the mail. Couldn’t put it down!

  3. Anonymous says:

    Thank you for wtiting this. I know it must have been hard. My heart goes

    out to you and your whole family! I’ve never had children, but my parents

    third daughter (she was three years oldet than me).was an RH baby.she

    was born on Christmas 1953 and died the next day. My fathet never was

    the same aftet that. So I can understand a little of what you have gone

    through. II’m sorry for what you’ve been through. I want you to know I love

    you and your family very much and I pray for your whole family every day.

    May God bless you! I’m also sorry for the loss of Jerry. He really was one

    of a kind!

    Bonnie Lou Whitlatch

  4. Anonymous says:

    I am so sorry to hear this news about your daughter Mr. Jameson! As I read it I could feel the pain of both you and your ex-wife! Your daughter a brave and sweet soul! I say a rosary every night and your family will be included. I try to put all I hear about in my rosary. I do not know if this will be of any comfort to you, I pray it will. I, too, have heard horrendous words spoken from doctors mouths. Once, ten years ago in a hospital trauma waiting room, that my mother had ovarian cancer. She recovered but was at deaths door and when she beat it doctors called her a miracle. Again, several years later, my beloved mama was sitting in the oncologists office when we were told she had lung cancer – not related to the ovarian cancer, however. She had just beat death and now she started all over. I felt a frigid rush of fear go through my body and wanted to vomit. I and my entire family stayed strong and she is now a survivor of that disease once again. I, too, watched my mother sleep. I was her care taker both times and I know the fear and worry that plagues the mind. I have nothing but love and prayers for you, your ex- wife, and your baby girl, who I am sure will ALWAYS be your baby girl!!! Just remember you’s are not alone. And as far as the good Mr. Lewis, well, he is a hero of sorts! God does send angels to this earth! God be with you.

    • Anonymous says:

      When responding to your blog above Mr. Parker, I was unaware of the death of Mr. Lewis. I had been running errands and doing housework when I came across what you wrote on your blog today. Only recently did I turn the television on and find out about the great comedian. I had been curious as to why you decided to write about your daughter today. For all the good work he has done, for all the selfless hours devoted to raising awareness of this horrendous disease I am sure he is with the Lord! Again I am truly sorry to hear about your cherished daughter! I have to say, its television personalities like yourself and Mr. Lewis who do the right thing by bringing awareness of this and other terrible diseases to the forefront. I will keep you and yours in my prayers. God bless you, your ex-wife and your daughter!

      Kelli Rodgers

  5. Anonymous says:

    I am sorry to hear about your daughter…Jerry Lewis was amazing in his ability to raise so much money for such a worthy cause. Hopefully, one day there will be a cure for these terrible diseases.

    Nancy Gallinger

  6. Anonymous says:

    Je suis bouleversée après avoir lu votre texte JP. La maladie est terrible, surtout lorsqu’elle touche nos enfants. Jerry LEWIS nous faisait rire. Il a aussi certainement fait pleurer beaucoup de personnes par sa générosité. On ne peut que le respecter.
    Vous et Darleen êtes des personnes très courageuses. Votre ex-femme également. Vous avez surmonté dans votre vie, certainement difficilement, beaucoup de drames. Et pour ça aussi je vous respecte.

  7. Anonymous says:

    In the wake of such a touching story, I think all there is to say is thank you for sharing it.

  8. Anonymous says:

    I can only imagine the shock and pain that must have accompanied the realization that one of your children has an incurable disease. 🙁

    From a stranger’s point of view, I always saw Jerry Lewis as a generous, selfless and caring person who utilized his fame for good by hosting the MDA telethon every year. His energy seemed endless as he entertained for hours and hours while soliciting donations and cried at the end of the telethon when the total was revealed. How could we not donate when it was apparent Jerry was busting tail to raise awareness while accepting money to help find a cure for children and adults with this disease? I saw him as a funny man who never resorted to foul language or insults to get a laugh: a truly talented comedian. He will be missed.

    I’m going to go make a donation to the MDA in honor of Jerry Lewis. I hope all those who respected Jerry and his tireless work for MDA will do the same. 🙂

    Carla In California

  9. Anonymous says:

    Sorry to hear that about your daughter. No parent should have to lose a child. I was sad to hear that Jerry Lewis died. Indeed another light has gone out of the universe. I love the ending to your post about the sun mourning Jerry Lewis. May God bless you and comfort you.
    Wishing you all the best

  10. Anonymous says:

    I don’t believe their is no greater pain than burying your child or a cut deeper than learning that your child has an incurable disease.

    My heart goes out to all those parents and children.

    I wonder what was the driving force behind Mr. Lewis’ huge fund raising efforts. Their must have been a personal connection for such a force. Whatever it was, many are more than grateful.

  11. Anonymous says:

    Mr. Lewis was always considered a hero in our house. We were fortunate not to need the services of the MDA, but his devotion and service was awe-inspiring. As an adult, I was friends with a couple whose son had Duchenne Muscular Dystrophy and they spoke highly of the help and support they received from the MDA.

    Your comment about the eclipse, may have been fanciful, but it strikes a chord. Mr. Lewis was an extraordinary man and it does seem a fitting tribute.

    I am so sorry to hear about your daughter. I lost my son in an accident, and I am familiar with that indescribable pain. I am so very sorry. To hear your personal story of how Mr. Lewis helped you shoulder the struggle your family has faced simply makes me admire him more.

    God bless you and your family. He blessed us all with Jerry Lewis, with his capacity to entertain, and his even greater capacity for caring.

    Regards, Carolyn

  12. Anonymous says:

    Hello JP,

    I have such a lump in my throat. It’s undescribebable. No one can imagine the pain and despaire you and your then-wife went through. Maybe someone with own children can do a little better. For parents such a diagnosis is harder to take than if it concerned oneself.
    It’s really a pity to hear what a great personality Jerry Lewis was after he is dead now. “Pain, as much as joy, is the acid that etches the copper plate of our memories” is a sentence I won’t forget so fast.
    This day with all these inherent memories must be literally a black day for you.

    Right now is a moment when I wish I could express myself not so clumsily. All I can say is that I do hope with all of my heart your daughter’s form is inferior and that she can cope with her desease as well as possible in the long run.

    Best wishes

  13. Anonymous says:

    Many prayers for all of you on this blog!

  14. Anonymous says:

    Hello Mr. Parker,

    I am very sorry to hear about your sweet Katherine. Praying for your daughter, for you and for her mother.

    I shed a lot of tears watching Jerry’s kids on Labor Day. RIP Mr. Lewis.

    I wish you all the best,


  15. Anonymous says:

    Very sad. I had no idea you’d had to go through THAT, but then, I don’t think any of us get out of life without sadness or hardship of some kind. You just gotta treasure whatever came before, as you so eloquently described watching your sleeping children. And make those moments WORTH IT. One of my favorite sayings comes from a people that certainly knew what they were talking about regarding life and it’s unpredictability. The Apache saying is, “A foolish person looks far in search of joy and death; both are very close…..” You just gotta remember the JOY part…..And by gosh, if there is ANY form of spiritual existence after this life, you can BET Jerry Lewis is working towards influencing whomever, whatever needs to be done to FINALLY discover that cure! Perhaps we can accomplish MORE afterwards in spirit. Perhaps……L.B.

  16. Anonymous says:

    “There is nothing more wonderful than a sleeping child; in sleep, they belong completely to you in a way that they never do awake.” Beautiful and true.

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