My Speech delivered at the PPMD Conference in BaltimoreJun 29, 2013
My husband Larry and I are here today as DMD veterans – relics, really. I am not an expert on anything except our son Peter, who was diagnosed with DMD in 1968 at the age of 2, and died in 1980 at the age of 15. I have no credentials, unless you count perspective. I learned a lot reflecting upon those terrible, wonderful years with Pete.
Peter lived in the dark ages of DMD. The gene responsible for Duchene had not been discovered. There was no stem cell research. There were no steroids to keep boys walking longer. There were no clinical trials, and Exxon was a gas company, not a gene you might skip over on the way to a cure. There was no hope. We were on our own.
As I see it now, life with DMD is a high wire act, where you struggle to keep your balance between hope and despair. Falling is inevitable. How well you walk that wire, how quickly you recover from a fall, regain your balance, and keep on keeping on has a lot to do with how rewarding your son’s life will be. The same is true for you.
Larry and I reacted very differently to Peter’s diagnosis. Larry immediately went into fixer mode. But did Peter need fixing? Nothing about him was broken. Certainly not his spirit.Photos © Parent Project Muscular Dystrophy
Even though Larry was just beginning to practice law, he applied for a scholarship to medical school. If he could accelerate his way through the first four years, and do his internship in neurology, maybe he could find a cure in time to save Peter. I didn’t find out about what he had done until I saw the letter from the med school, lying on the kitchen counter. It nearly broke my heart.
“Dear Mr. Weisman” Thank you for your letter of inquiry. Unfortunately, at present, neither the Yale Law School nor the Yale School of Medicine offers scholarships to lawyers who wish to matriculate into medical school. However, we wish you every success with what appears to be an exciting and ambitious pursuit.”
By contrast, I accepted the diagnosis with a vengeance. I educated myself about the disease. Knowledge was power. I took a look around our split level home and started checking the newspaper ads for ranch houses. Peter was still walking well enough; nevertheless, within a year we had moved, widened doorways and installed a ramp to the front door, even though Pete wouldn’t be needing it for years. I ran toward our fate. I don’t know what I was thinking. That I would get a jump on Duchenne? That if there were no stairs in Peter’s life, that would delay his (and my?) confrontation with the fact that he was growing weaker?Photos © Parent Project Muscular Dystrophy
To keep myself semi-sane, I frequently engaged in weird behaviors. Sometimes I would pretend that we were living in the Middle Ages when the normal life span was between 20 and 30. And then I’d think, “Well, if 20 years could be a lifetime then, Peter might live a full lifetime. Other times I imagined living on the moon, weightless, flying free, without gravity to drag us down. Often, when no one was home, I’d get into the shower, turn the water on hot and hard, and cry. I cried a lot. Scientists have made a study of crying. Women, their surveys show, cry on average five times as much as men. Emotional tears (not the kind you shed when you’re slicing onions) are not just salty water. They contain stress and pain reducing hormones which, when released by crying, make you feel better. That why they call it a “good cry.”
When Pete was diagnosed, we had already lost the war. We sought only to win the battles, one by one, until we could win no more. This is not where you are today. Today, boys with DMD live to be men, often into their late 20s and even their early 30s – that’s twice as long as Pete lived – and the prospects of a way to slow down and even cure DMD are much brighter. Where there was no hope, there is now hope. Where there was less time, now there is more. Today, it is both realistic and dangerous to hope for a cure. For you, today’s parents, the future is more promising. You can imagine college. You can image a career.
We could not. We decided that the most important features of Peter’s life could not be about anything that happens over time. It couldn’t be about when he could ride a two-wheeler, or a ten-speed; or about when he got his driver’s license or into Harvard, or married or would be successful in his chosen work. Somehow, his life had to grow steadily and bravely upward against a declining graph line of predetermined, utter physical failure.
How do you bring up a dying child? It seems an oxymoron, like “almost impossible.” While Peter was dying, he was living. So, in fact, are we all. He was an entire person – funny, happy, sad, annoying, perceptive, original, stubborn – he was not just a doomed child. He had muscular dystrophy, but he was not Muscular Dystrophy. In fact, such a negative focus not only limits, it distorts. And those of us who loved him and cared for him were whole people too – cynical, angry, lively, naïve, discouraged, and happy. We were not just tragic figures.Photos © Parent Project Muscular Dystrophy
How well you follow your son’s lead will have everything to do with how well you will cope. Sometimes our children know best. Knowing what lay in the future, we didn’t want to invest Peter’s energies in any physical accomplishments, where he was bound to fail, where we were sure he would experience himself as growing ever weaker. Besides, quite frankly, it distressed us to watch Peter engaged so fiercely in losing battles, like trying to climb a flight of stairs. We wanted to pick him up and carry him to the top, but Peter insisted upon to doing it by himself. ≈
Larry shrugs an “I give up, let him do it.” We wait and watch.
Peter sees there is no banister. He will not be able to use his usual technique, pulling himself up the stairs with his arms, his body following slow and reluctantly. Peter sees that he will have to crawl up, the less agonizing but more humiliation alternative. Babies crawl.
We wait and watch.
He places his hands, palms down, on the second step. Pushing down on his palms he fools gravity by relieving enough pressure from the lower part of his body so that he can lift his own feet. The right knee tests the air, slowly, as if it were dense, and then kneels on the first step. The left knee does the same, a little more quickly. I let out my breath. There are fourteen more steps. We wait for him at the bottom so he can wait for us at the top. Time hovers over his effort, thick, suffocating. One more step to go, and at last he is on all fours on the landing.
Adam, Larry and I begin to mount the steps, not too quickly, that would betoken impatience; not too slowly, that might suggest a pitying sympathy; so we mount the steps at an ordinary pace, a pace that does not call attention to itself.
“Lift me up, Dad, so I can push the buzzer.”
See? A perfectly normal seven year-old who cannot reach the doorbell. “I walked all the way up the stairs,” Peter boasts. “I’m strong.”
The sense of accomplishment that radiated from his happy face when he reached the top on his own taught us not only patience, but that we were wrong. While we were focused on then, he was enjoying now. Later he would be not be able to climb those stairs, but today he could. Pete taught us that living in the imagined, depressing future was not a good idea.
We were called upon to make odd decisions based on Pete’s predicted life span. We tried to keep the cost-benefit ratio in balance. We decided against the dentist’s recommendation to straighten Peter’s teeth. His neurologist proposed a heel cord operation that might have kept Peter walking in braces, albeit stiffly, for another year or maybe even two. I can’t believe it now, but after debating the problem, sorting out the pros and cons with Larry, we ended up asking Peter, aged six at the time, for his opinion. We explained the choice to him. He didn’t hesitate for a moment. “I don’t want to be a robot,” he said. Did we do the right thing to ask him? Did he make the right decision? We’ll never know. Was I right or wrong never to tell Peter of his fate? I’ll never know that, either, and it haunts me still.
At first a wheelchair was a dreaded disaster, a tragic turning point for Peter and for us. He had been falling to his knees, and cracking the back of his head on the floor. These falls were so painful and frequent that he had a permanent egg on the back of his head. I couldn’t stand the agony he was putting himself through. Still, he soldiered on. The more he fell, the more it hurt, the more he continued to insist upon walking, and the more I found myself longing for him to give up the struggle and accept the wheelchair. Larry tried his best to pitch the idea.
“You probably don’t know this, Pete, but one of the finest Presidents the United States ever had was in a wheelchair. Did you ever hear of Franklin Delano Roosevelt?”
“No,” said Peter, clearly unimpressed.Photos © Parent Project Muscular Dystrophy
We bought a junior-sized chair – Pete was only seven—and parked it in the corner of the living room. (I think I knew from the time he was diagnosed at two – an early diagnosis - that he had a swift case of Duchenne.) The back and seat were colored an in- your-face orange, as gaudy as a celebration. Peter wouldn’t go near it. I knew better than to beg and plead, but I didn’t have any better ideas.
It was Adam, Peter’s nine year-old brother, who literally rode to the family’s rescue, seated in Peter’s wheelchair.
“Push me,” Adam said to Peter.
For two days Peter pushed Adam around the house in the wheelchair, using it as if it were a walker. Then Adam suggested that they take turns; sometimes Peter would push Adam, sometimes Adam would push Peter. In an instant, Adam had changed the worst thing Peter could imagine into a game.
Next, Adam moved the game outdoors, going farther and faster each day. By the second day, Pete and Adam became the most popular kids on the block, offering free rides on what Pete was now calling “Wheelie” to the neighborhood kids. Everyone wanted a turn. For the grand finale, Adam decided to take Peter on a thrilling, high speed trip down a very steep hill, with Peter belted into the seat and Adam riding the struts. That did it.
“Can we do it again, Adam?” Peter begged. “Can we do it again?”
I breathed a sigh of relief. We were okay for now.
Years later, when Peter was in junior high, he staged an equal rights protest against the school administration. They said that he could not sit in his preferred place at lunch because the wheels of his chair stuck out into the food line, interfering with the orderly flow in the cafeteria. Pete, who had learned a lot from his civil libertarian father, went on a hunger strike. He was collecting student signatures on a petition.
“He says we’re denying him his civil rights,” said his sympathetic teacher, who called me to tell me that Pete was refusing to eat lunch. “You know, I had him figured out all wrong at first. I thought he was just being a wise guy. Thirteen is a big age for wise guys. But not Pete. He’s a wise guy, all right, but he really means business. I figured he’d last one day, maybe two. Frankly, we all admire him, but,” he added, “Moving the line involves rearranging the whole traffic pattern in the cafeteria.”
“I’m definitely being a pain in the ass,” Pete told us, but what they’re doing is unfair. I don’t like being treated unfairly. I’m not going to let them get away with it, even if they are grownups, even If I do like them. There’s so much prejudice in the world. It can be very discouraging.
When the hunger strike didn’t work, Pete crayoned a sign that he asked us to affix to the back of his wheelchair. It read: WOULD YOU HAVE LET FRANKLIN DELAWARE ROOSEVELT SIT WHERE HE WANTED TO IN THIS CAFETERIA? The administration moved the food line.
When the pleasures of the body failed Peter, we encouraged him to develop the pleasures of the mind. He read; he loved music, he played the drums, he drew, he helped me cook. The hardest thing to make up for was the desertion of his able-bodied friends. Pete struggled all his life with social isolation, but when we suggested that he might want to keep score while his friends played baseball, he shot us a look and said, “Pitiful. Way too pitiful.” Instead, our adult friends and his brother formed a circle of love around him. But how much happier Peter’s life would have been if he could have enjoyed the video games and the company of cyber friends that your children thrive on today.
We were obliged to create a new normal – how happy, how curious, how stimulated, how kind, how fulfilled, how loved, how loving. Who would dare to call that life, however short, not worth living? I think about the life of Josh Winheld, a much loved, much admired member of the PPMD community, who died of Duchenne last year at the age of 31 after finishing his Master’s thesis on handicapped accessibility and publishing an autobiography whose title WORTH THE RIDE says it all.Photos © Parent Project Muscular Dystrophy
Children live in the now. If now is happy, be happy now. The curse of adults is that we can imagine the future. If we live in our children’s futures, if we dwell upon the end, we will cast a shadow on their lives. We will teach them fear and sadness.
Hope for a cure, work for a cure, pray for a cure, pay for a cure, but meanwhile, keep your balance. Life is now. Embrace it. That’s what Peter taught us. That’s what we learned. That’s why we’re okay today.