March 25, 2011
Shortly after Ben watched in horror as I tumbled backwards down the stairs from the second floor into the foyer, he sought answers. Ben was maybe six, but he had seen enough. What is wrong with Dad, he asked his Mom, lights safely out, blankets tucked tight around his little body. That was the venue of choice for hard conversations. Truth was spoken that dark night, and there was no turning back. He had learned the term, multiple sclerosis.
A decision to open the curtains and bathe our three children in the bright light of open dialogue had been made. Kids do not miss a trick. They know when something is wrong. They are the smartest ones in the house. I grew up in the generation that was told nothing. And so we coexisted with our worst fears, no doubt exaggerated by excruciating silence. If you want happy, secure kids, try truth. Let the kids in on the facts, tough as reality might be for them to process.
When cancer came calling a few years later, we sat our three down, and I told them what was happening. “Are you going to die?” Gabe, or middle guy immediately wanted to know. I don’t think so, Gabe, I answered, certain of nothing. “Then will we get our Christmas and Chanukah presents,” he followed up. I figured we were doing something right as he cut to the important stuff.
Years passed, and my health issues were integrated smoothly enough into the family culture. Or was that wishful thinking? The kids kept their eyes on me, ever mindful of my limitations and the dangers on the path of a sight impaired guy on a cane. Lily, our youngest inherited Dad when her brothers went off to college. Sometimes she is alone with me when I fall. She offers to help but does not have the strength to do much. She looks at me. I cannot read her eyes.
I want to believe that our easy openness has paid off. Probably I never will know. Our children fear for me and must bear the terrible weight of wondering what lies ahead of them in their lives. I am the third generation in a direct line to fight multiple sclerosis. Will there be a fourth? There is no way to know. One of them has had two MRIs, medically unnecessary, psychologically vital.
They are hyper-demanding to know every fact of my life relating to health. When I embarked on an experimental regimen of chemotherapy for the MS, an increasingly common course of therapy, I made sure I told the children. When one came home from college and saw my white hair and hair loss, he was furious. “You never tell us anything,” he complained bitterly. A harsh reality had overpowered the memory of my nonchalant news.
I feel so bad for them. The calm and casual attitude provides no antidote to the pain inflicted by coming face to face with a condition no one should have to see. Nowhere was that more evident than in a Boston hotel where all of us gathered for a family wedding. The building was so large, the corridors so long and my walking so weak that I wound up in a wheelchair just to get around.
My self-conscious discomfort was surpassed only by my children’s horror as they witnessed their father’s descent to a sitting position. The look of vulnerability was lost on no one. There were tears on that occasion, though kept beyond my line of sight.
Our children are better people for seeing close up that life is not fair and knowing that there is suffering in the world around them. Meredith keeps reminding me that I am a positive role model, a guy who has remained productive and, for the most part, happy to be alive.
My mother said once that if she had known that any of her kids would inherit a neurodegenerative or any other awful disease, she would not have had kids. I responded that not existing really is not a happy alternative and, besides, I have a good life. I think my children understand that. We laugh and love each other, and in the end, we seem to believe that everything will be all right.
But I know I kid myself. My children’s pain knows no end.