Tuesdays With David

“When one learns how to die, one learns how to live” (From Tuesdays with Morrie)

Nothing could ever have prepared me for the gripping meeting with David Cohen, who suffers from nerve atrophy (A.L.S.). It was the sort of meeting that one treasures for a lifetime. Already during the telephone conversations with Cohen’s wife Mali, I realized that I was going to interview a person who could physically not speak, and who conveys his messages by means of blinking his eyes or smiling, and even when it is done this way, without words – and perhaps because of this, it was one of the most gripping interviews that I have ever done.

Cohen, 55, lives in Haifa, is married to Mali, and has three children, Omer – 23, Noa – 19, and Daniel – 13. He calls them “my angels”. Cohen was a businessman who ran a successful company, which he himself established twenty years ago.

The illness broke out in May 2003. Cohen returned from a Tai-Chi seminar in Rosh Pina, which he attended after returning from a successful tour to India. “I felt sporadic contractions in my shoulders and thought to myself that I must ask the doctor for an explanation”, he relates. “One day I found a spare moment in my mad timetable as the owner of a company. The neurologist knew immediately what was going on, and referred me for tests. I didn’t yet realize the seriousness of the situation, and so I decided not to cancel a family holiday that we had planned to Hawaii.” From the heady heights of the happiness of the holiday, the heavy blow descended onto Cohen and his family: The diagnosis of the accursed A.L.S. illness. “The doctor who told us about the illness was very direct”, recalls Cohen. “When I left him, I was not far from putting a bullet through my own brain. He really depressed me, because he explained the matter in a brutally cruel way.”

A.L.S., the most severe of the atrophy illnesses, leads to the destruction of the nerve cells, and as a result of this, the muscles become weakened to the point of total paralysis. The illness at no stage affects mental ability, and the patient is fully aware of his deteriorating situation.

It took Cohen a while to realize that he was suffering from a rare illness, for which there was no cure. “For two months we were sleep-walking – we could not come to terms with the decree”, he relates. “Initially I had many conversations with God. When I was alone, I would cry out to the heavens, I would speak to Him, I would pour out all my fears, all my frustrations. That was the stage when I had not yet internalized the illness. Gradually I came to terms with the situation. I realized that deep down in my subconscious I had become weary of the rat-race of life, and then my body made this illness that would force me to stop.”



Today, totally paralyzed in his arms and legs, breathing only with the aid of a machine, stripped of the power of speech, he is fed by means of a tube which comes out of his stomach. He reads, writes and speaks by means of an assistant to whom he dictates every letter with signs, by blinking his eyes. His eyes are eyes that speak. They are the most tangible and strongest indications that Cohen in fact lives this life to the fullest even though he has serious disabilities, among which he has difficulties in enduring sunlight or strong light. But the darkness of the room cannot hide the fascinating smile that still manages to enchant those around him. Despite everything, he is not angry with anyone. His spirit stands firm. His attitude is very good and he maintains the sense of humor that always characterized him. According to him, he is enjoying one of the most beautiful periods in his life. I sit beside him, listening to his respirator, as he tries to convey his message, and have difficulty in absorbing the greatness of the things he is saying. I ask him if he isn’t concerned with thoughts of the past, fears of the future, and how it is possible that this is really one of the most beautiful periods in his life. In a very simple way, with a poetic streak which he has developed himself because of his inability to speak, he explains these things to me very firmly. “I did not know that there were birds in Haifa, until I became ill. I am alive to this day, here and now.”

Do we have to reach such a difficult situation or suffer from an incurable illness in order to appreciate a thing as simple and natural as the chirping of the birds?

“I have come to the understanding that the fight for life is more challenging than life itself, possibly because I didn’t appreciate life enough.”

Do you feel that you are succeeding in conveying your message about life to your immediate surroundings?

“I am trying to bequeath something to my two younger children, the others are caught up in the rat race of life.”

Yes, it seems like all of us, and exactly as Cohen ran his life before the illness. After Cohen had spent most of his life in an endless race, he is now enjoying a sort of tranquility. Cohen: “Even though I suffer from an incurable illness, I have achieved a tranquility that I did not have when I was involved in the endless race. Today I am able to enjoy a slow-paced life, to listen to favorite music and to enjoy meeting family and friends. Not easy, coming from a position of complete control of your body, to be in a position of needing someone’s help for every action, even the simplest of them. In any event, I have total support from my dear family, and this helps me to contend with the situation. God gave me a family for whom I am grateful every day. In my best dreams, I never dreamt that I would have such a wonderful family and they assist me to overcome everything.”

Yes, it seems like all of us, and exactly as Cohen ran his life before the illness. After Cohen had spent most of his life in an endless race, he is now enjoying a sort of tranquility. Cohen: “Even though I suffer from an incurable illness, I have achieved a tranquility that I did not have when I was involved in the endless race. Today I am able to enjoy a slow-paced life, to listen to favorite music and to enjoy meeting family and friends. Not easy, coming from a position of complete control of your body, to be in a position of needing someone’s help for every action, even the simplest of them. In any event, I have total support from my dear family, and this helps me to contend with the situation. God gave me a family for whom I am grateful every day. In my best dreams, I never dreamt that I would have such a wonderful family and they assist me to overcome everything.”

Do you fear death?

“I never fear death. I always saw death as a continuation of life, a natural part of the process. Even to-day, I regard this as something natural. It never worried me. People die and are born and die. Some die earlier, some die later. I could have died in another 20 – 30 years, so I will die now – not serious. Maybe the after-life will be nicer! I have many friends there who also suffered this illness. We decided that whoever gets there first will put on the water for coffee. It may be very nice up there, so why regard it negatively.

THEY NICK-NAMED ME “THE FANTISIZER”

While contending with his personal situation, there developed in a Cohen a strong desire to come to the help of others. He discovered that his illness is incurable, and also that the drug companies have not yet expended much research effort in finding a cure for the illness.

Possibly the reason for this is the rarity of the illness and the low economic potential that there would be for a medication. The short life expectancy of the patients, about 4 years, and the small number of sufferers, about 400 – 500 throughout the country. Cohen: “Alas, as with many things in the world, everything starts and ends with money. It doesn’t pay the drug companies to research the illness and so they never have.”

Cohen knew that he had only a few years to live, but nevertheless he decided to take the initiative and to establish an Association with the purpose of promoting research into understanding the reasons and finding a cure for the illness; and also in order to increase awareness among the medical fraternity and the community at large. “IsrALS”, the Association for researching A.L.S., the nerve atrophy illness, has so far raised about 1 million dollars, and has started financing 17 proposals for research into finding a medication for the illness. The aim of the Association is to realize a sum that will facilitate the opening of a laboratory for research into ALS in one of the academic or medical institutions in the country, and to conscript doctors and scientists.
The Association is running several promising research projects in Israel. A medication for the illness is not yet available to the patients, but with the aid of the activities of Cohen and other patients, it is closer than ever. “They nick-named me The Fantisizer”, recalls Cohen. “I remember when Amram Mitzna said this to me at the time that I established the Association, but at our last conference he never ceased to be amazed at what we had managed to achieve in the field of research in the last three years.” Mitzna himself has been roped in to assist the Association after he investigated the matter with professional people and came to realize that there was hope to achieve the aims of the Association and to find a remedy to this terrible illness.

Cohen knew from the beginning that researching the illness was a long process the fruits of which would be enjoyed by future patients whom he doesn’t even know. His vision is far broader than to seek a remedy for himself. He simply saw his goal ahead, strode towards it with great determination and did not give in to weakness. Despite his condition, he manages the affairs of the Association from his home, and receives reports on every small step of progress. “I don’t live with illusions” he says. “I don’t believe that a cure will be found in my life time, but I am doing it for the patients who come after me.”

The establishment of the Association, a subject which burns like fire in his bones, has given him the privilege of contributing to society. In this respect, according to him, he feels that he is fulfilling himself more than ever.

“Until I became ill, I was involved in material things,” he admits, “I got to places that I never dreamed I would reach, also from an economic perspective. I toured the world, was very successful, felt that I was fulfilling myself and that I had a full life.”

“By virtue of the illness, I have been enabled to contribute to society and to meet absolutely amazing patients and family members.”

What is your opinion about finding a medication for the illness?

“I have no idea, but I have proof that I am sane. When Dr. Brown, the leading researcher into ALS in the world, visited Israel, he told me that there is an exceptional chance that a medication for the illness will actually come from Israel. There have been amazing results which I never believed would occur. My vision is coming alive before my eyes. I am a great believer in the Jewish and Israeli brain. I believe that in the same way as we have achieved great things in many fields, especially in the realms of medicine and science, we will also be able to tame this illness. I believe that good news will come forth from Zion.”

Does that make you feel happy and satisfied?

”The truth is that today I have great joy in life. Yes, even today, after my illness, strange as it sounds, I feel that I am dealing with sacred genuine things. I feel that I am fulfilling myself, and that I am involved in things of great value to mankind. If I succeed in achieving the vision of the Association, I will know that I have done my bit in this world. And of course I will reach the world to come.”

During the course of his illness Cohen has met many A.L.S. patients who despite their serious physical condition and the rapid deterioration in their condition, have not lost the desire to live and to help other patients. Every Tuesday the leaders and members of the committee of the Association meet in Cohen’s house. They call these meetings “Tuesdays with David”. The reason for this is that when Cohen founded the Association he gave its members the book “Tuesdays with Morrie” which is a magic record of the time that the author, Mitch Album, spent with his professor, Morrie Schwarz, who suffered from nerve atrophy and from his sick-bed gave his students their last lectures in the ‘Course of Life.’ After the meeting with him, I felt it was impossible not to learn several things about life from him. It is impossible to escape from thoughts of life and death. Possibly there is a profound thought in the words of “Tuesdays with Morrie” - when one learns how to die, one learns how to live.

Address of the Internet site of the IsrALS Association:
www.israls.org
Telephone number of the Association:
04-825-2233.

THE CAUSE IS NOT KNOWN.

Dr Boaz Weller, Head of the Department of Neurology at the Bnei Zion Medical Centre in Haifa, explains about the illness

The nerve atrophy illness A.L.S. is the most severe of the illnesses of the group that affects the motor nerve cells. The illness is rare, and incurable.

The illness attacks the peripheral motor nerve cells by means of which the brain supervises the operation of most of the controllable muscles in the body. The nerve cells are destroyed, and so they are unable to operate the muscles, which then weaken to the point of total paralysis.

The occurrence of the illness is between one and two patients per hundred thousand of the population per year. The age-group that is most frequently affected is 45 – 65. The first signs of the illness are usually mild and non-specific, which frequently results in a delay in diagnosing the illness. “Signs of the illness may be manifested as a weakness of the muscles of the limbs, difficulty in performing certain movements, problems in writing or lifting objects, inability to climb or walk long distances, and even frequent falling. There are also muscular contractions, changes in the voice and difficulty in pronunciation and swallowing. Even “flopping” of the head due to weakening of the shoulder muscles may occur as an early sign of the illness.

Development and progression of the illness differs from patient to patient, and it is very difficult to predict the rate of progress in the individual case. The typical progression is advancing weakness of the muscles of the limbs until total paralysis of the arms and legs, and weakening of the muscles that control swallowing, chewing and speech, eventually reaching the stage of affecting the muscles that control the breathing. Most patients die from this effect.

Most patients survive between two and five years. About twenty percent of patients survive from five to ten years, and ten percent live longer than ten years.

The cause of the illness is unknown, and therefore there is great difficulty in finding an efficient medication. Many medications have been tested on the A.L.S. illness without any significant success. The only medication that has been found to slow down the progression of the illness is RILUZOLE. But disappointingly, the increase in life expectancy has been a few months only. An important treatment is support of the patient and his family. Such treatment given to the patient includes physiotherapy, medical aid equipment, assistance in communicating, breathing assistance and psychological assistance.

Because this is a severe and fatal illness, and the patient has full awareness of his condition, it is accepted that one discusses with the patient in the early stages of the illness whether he wishes to have his breathing assisted by artificial means.