The Hero Within
Twelve years after contracting Lou Gehrig's Disease, Dr. Rahamim Melamed-Cohen, now totally paralyzed, enjoys a life of productivity -- and love.
Dr. Rachamim Melamed-Cohen passed away Nov. 3 2020, Cheshvan 17 5781, at the age of 83. May his soul be bound in the bond of eternal life.
At the age of 57, he had everything going for him. He was handsome, athletic, happily married, the father of six children, and successful in his career. Dr. Rahamim Melamed-Cohen, with a Ph.D. in Special Education, held a leading position in Israel's Ministry of Education, served as Head of the Education Dept. in a Jerusalem college, and pioneered Special Education programs throughout Israel.
Then one day, he felt a weakness in his left shoulder. Soon the weakness spread down his arm to his fingers. When he made Kiddush on Shabbat night, the Kiddush cup shook and the wine spilled.
He and his wife Elisheva made the rounds of neurologists, until one doctor gave them the dread diagnosis: ALS, also known as "Lou Gehrig's Disease."
"You have three to five years to live," the doctor said. That was 12 years ago.
The doctor spelled out for them the entire course of the disease: first his limbs would become paralyzed, to be followed by the muscles of his neck, esophagus, and tongue. "The day will come," he told Rahamim, "when a fly will land on your nose and you won't be able to brush it off. You will become dependent on other people for everything." And in the final stage, his lungs would stop working. "You have three to five years to live."
That was 12 years ago. Three of the doctors who attended on him have since died, but Rahamim Melamed-Cohen, while completely paralyzed, is still going strong. Since the onset of his illness, he has written seven books, the latest by means of a computer that types by his eye movements. Until a year ago, when he could still speak clearly, he gave lectures on educational methodology to students in his living room. He maintains a voluminous email correspondence with readers who look to him for encouragement and wisdom. He prays thrice daily and attends synagogue every Shabbat. And he and his wife go out regularly, to the theater, to weddings, and to restaurants, although Rahamim himself no longer eats except through a feeding tube to his stomach. As Elisheva explains, "Although he doesn't eat, he sits with us." His company is obviously worth the effort.
QUESTIONS FOR GOD, AND SOME ANSWERS
Rahamim didn't get to his present state of serene acceptance immediately. A religious man, when he first heard the diagnosis, he had many questions for God: "Why did this happen to me? What did I do wrong? All my life I tried to do good, to fulfill mitzvot, and to act properly toward my fellowman. Maybe here and there, I wasn't okay, but where is the proportion between this terrible illness and my small sins?"
Interestingly enough, as his physical condition has deteriorated, his faith has grown stronger. He notices in himself the spiritual growth spawned by his illness: "I think I understand better than most people how to appreciate the important things in life, and to ignore those things that aren't important."
Moreover, he now discerns a higher purpose to his suffering: "I feel that I have a task: to give to other people encouragement and strength."
In a recent interview, I asked him: "Judaism teaches that we come into this world to do tikkun [rectification]. What tikkun are you accomplishing since your illness began?"
His answer, partly spoken to his wife, who interprets his garbled speech, and partly "typed out" by looking at letters on his on-screen keyboard, was: "MY PERSONAL TIKKUN IS: MY EFFORT TO FULFILL MITZVOT AS MUCH AS POSSIBLE, TO EXERT A BENEFICIAL INFLUENCE ON PEOPLE, AND TO BRING PEOPLE CLOSER TO FAITH IN THE CREATOR."
From the beginning, Rahamim decided to stay one step ahead of the disease. Anticipating the paralysis of his legs, he installed an elevator to carry him up to his second-floor apartment. When one hand was still good enough to press the buttons on his special wheelchair, he had a control mechanism installed on the back of the wheelchair for the stage when he would not be able to drive it himself. While he could still speak clearly, he researched and located the ingenious American-made computer that is now his principal means of communication.
Yet, with all his preparations, he did not prepare for the inevitable moment that strikes all ALS sufferers: the final moment when the paralysis creeps into the lungs. One day, six and a half years ago, Elisheva heard her husband straining to breathe. She called an ambulance. The medics arrived at the same moment that Rahamim's breathing stopped. They resuscitated him and rushed him to the hospital. There Elisheva made the decision to hook her husband up to a respirator rather than let him die.
"Everything would have been different in one minute," Elisheva recalls, "if I hadn't called the ambulance. And there was a doctor in the emergency room who said to me, 'Why did you resuscitate him?' This was very terrible to hear."
"If they had let me die, I would have missed the best and most important years of my life."
When he regained consciousness, Rahamim himself was not sure that being kept alive by a respirator was the best decision. Now, however, he asserts, "If they had let me die, I would have missed the best and most important years of my life."
His daily struggle with survival has taught him a vital lesson about the vast, untapped potential inherent in every person. "Before, I didn't believe that I have such inner strength. I learned that every human being has sparks that he can transform into a burning flame."
Although he had written articles and lectured extensively before his illness, this new phase of his life has opened up wellsprings of creativity. Since the onset of his illness, he has written seven books: two about education; two on Jewish subjects; one book of personal anecdotes; one book of poetry; and Choose Life, a collection of his musings about life and advice to the chronically ill.
Dr. Melamed-Cohen believes that many other people suffering from terminal illness or serious disability give up due to three reasons:
- They behave according to societal expectations.
- In our times, many people are spoiled.
- Today's education doesn't teach people to stand up to challenges.
While many advocates of euthanasia admit that Dr. Melamed-Cohen's life on life-support systems is definitely worth sustaining, they claim that he is an exception. Dr. Melemed-Cohen himself disagrees. "Maybe I am special, but the principles can be applied to other people as well. Not everyone has to produce so much, but everyone can fulfill his life in his own way. Rather than always talking about 'death with honor,' why not put the same effort into sustaining 'life with honor'? They can do this by encouraging patients and by bringing them volunteers to help them. Instead of prodding them to finish their lives, prod them to live their lives."
At 68, Rahamim's daily schedule would daunt many healthy people his age. He starts out his day by praying Shacharit, the morning service. His friend Yitzchak comes daily to put tefillin on him. Then he and Yitzchak learn Torah for an hour.
Then he works: writing his books, which sometimes entail considerable research, either on the internet or in the comprehensive Judaic library he has on disc; answering his email correspondence (he receives on average ten letters a day); and doing artwork on computer.
In addition, he administers a small yeshivah founded by his late father. This entails determining the curriculum, examining the applicants, paying the staff, and keeping daily track of the attendance and progress of each student. He also reads books and newspapers. Twice a week he has physiotherapy. At 4 PM, visitors start arriving – his four siblings, six children, 26 grandchildren, friends, or former colleagues.
"Many people come," comments Elisheva. "This house is like a Visitors' Center."
"No," her husband corrects her, "it's like a World Center."
Since every moment is so valuable to him, Dr. Melamed-Cohen is grateful not to waste time on eating. He gets his food directly by a feeding tube into his stomach, which takes only three minutes thrice a day.
A SPECIAL VISIT
Even the walls of the Melamed-Cohens' apartment exude love. They are covered with photographs: grainy, black-and-white portraits of esteemed parents and grandparents from Syria and Persia (where Rahamim's grandfather served as Chief Rabbi of Shiraz), as well as bright, color pictures of all 26 grandchildren and the first, precious great-granddaughter.
I arrive with my son and three friends. Dr. Melamed-Cohen sits in front of his computer in his half-reclined wheelchair, his body frozen except for his smile. With his eyes, he types in English letters: "YOU ARE WELCOME TO OUR HOME."
Some 20 minutes into the interview, he interrupts and, like any doting grandfather, offers to show us photos of his grandchildren. Moving around the computer by blinking, he starts with a family portrait taken at his and Elisheva's 45th wedding anniversary celebration three months ago. Dozens of smiling faces crowd the picture. "This is our tribe," he announces proudly.
Then he asks modestly if we'd like to see his original artwork. One particularly engaging picture seems symbolic; its bright colors and bold forms hide the sketched letters of God's name, just as God is hidden in the attention-grabbing events of our lives. Next, Dr. Melamed-Cohen plays for us a song, one of his poems set to music by his nephew; a CD is in the offing.
Two things impress me most about Dr. Melamed-Cohen. First, despite being entirely dependent on the assistance of others, he is a giver. He asks his wife to serve us drinks. He asks his attendant to give me English material about him that could help me in writing my article, and to make me a copy of "Heroes Against Their Will," a film about him aired on Israeli television. He asks his wife to put his books on the dining room table and let me choose one as a gift.
Dr. Melamed-Cohen is deeply interested in other people. When he tells me that he and his wife were sent to Great Britain and India as emissaries of the Israeli government, I mention that I've also been to India. He starts asking me questions about my background and what I did in India.
"I want the opportunity to convey the message of optimism and that life is holy."
Dr. Melamed-Cohen is an example not only for sick and disabled individuals, but for all people who feel that they can't get on with their lives because of something they are lacking: a spouse, children, money, a fulfilling job, etc. Dr. Melamed-Cohen, who lacks the most rudimentary functions that the rest of us take for granted, advises everyone: "DON'T DESPAIR, BE OPTIMISTIC, AND WORK ON SIMCHAH [JOY] IN YOUR HEART. NO MATTER WHAT YOU'RE LACKING, THINK OF WHAT'S POSSIBLE TO DO IN YOUR PRESENT SITUATION."
Dr. Melamed-Cohen's life is animated by his desire to disseminate this message to the world. When asked what his plans for the future are, he responds: "I want to stay alive for many more years and not miss out on even one moment of my life. I want the opportunity to actualize the true me, to enjoy others and to be enjoyed by others, and to convey the message of optimism and that life is holy."
LIFE IS FOR LOVE
The other aspect of Dr. Melamed-Cohen that makes a deep impact on me is that he has devoted his entire life to forming loving relationships with people: his wife, his parents, three sisters, one brother, children, grandchildren, friends, co-workers, and even his students.
Fresh out of university in 1961, he was given a job as a teacher at a religious boys' school. He was assigned a particularly rambunctious class of sixth graders. Since only he could control this class, he continued as their teacher for 7th and 8th grades. The bond he formed with those boys and encouraged them to form with each other was so strong that they have gotten together almost every month during the ensuing 45 years. Some of these boys-turned-grandfathers come to Rahamim every Friday to wish him "Shabbat Shalom." A few of them, prominent in their own fields, take the night shift attending on their ailing former teacher.
Perhaps the primary factor that prompts severely ill people to choose death is that they will otherwise become totally dependent on other people, mistakenly thinking that a life without independence is not worth living.
Dr. Melamed-Cohen regards their caring for him as a continuation of the loving relationships that he has cultivated throughout his life.
Instead of "independence," Judaism extols "interdependence," the mutual dynamic of giving and receiving that truly makes life worth living. As Rabbi Shlomo Wolbe defined the purpose of life: "Life is for loving." The purpose of life is to forge loving relationships with God and with other people.
Rather than considering his present dependence on other people shameful, Dr. Melamed-Cohen regards their caring for him – like his caring for them – as a continuation of the loving relationships that he has cultivated throughout his life. One need only look at his former students-turned-caregivers to see that their service, rather than grudging fulfillment of duty, is a freely-flowing act of love. Such love is never shameful.
An example of Dr. Melamed-Cohen's eagerness to forge relationships is his request that his email address be included in this article: email@example.com. He invites any interested reader to correspond with him.
A searing segment of the film, "Heroes Against Their Will," shows Dr. Melamed-Cohen debating Dr. Noam Reches, the chairman of the Israel Medical Ethics Committee and a leading proponent of euthanasia, who himself has "pulled the plug" on request. Dr. Reches looks at the wheelchair-bound Dr. Melamed-Cohen, with the respirator tube connected to the tracheotomy in his neck, and says, "You can't feed yourself. You can't hug the people you love... If I were in your position, I'd want out."
Dr. Melamed-Cohen responds, "These are the most beautiful and happiest years of my life."
"Some other ALS patients when they were fully conscious asked to end their lives," Dr. Reches continues. "They didn't want to reach your situation of complete dependence on others."
Dr. Melamed-Cohen gazes at Dr. Reches and declares, "Believe me, my life is no less interesting than yours."
All I could think of when viewing this scene was: He may not be able to hug people, but few of us with two functional arms actually embrace others with as much love and caring as Rahamim Melamed-Cohen.