Full paralysis hasn't stopped Rahamim Melamed-Cohen. It merely made him into a painter.
By BATSHEVA POMERANTZeye painting 88 224(photo credit: Courtesy)
'I feel as if my entire body is sunk in sand, and only my head appears above the ground, and my eyes look around as if saying: what a beautiful world," says artist Dr. Rahamim Melamed-Cohen, whose portraits, biblical scenes and landscapes form a riveting collection of tangible strength of human spirit.
Eyes, his only tool of expression, are the theme of Melamed-Cohen's recently published album With a Blink of an Eye: The Bible Through My Eye. Afflicted with ALS, he created the original paintings with his eyes, guiding a special computer program. With both Hebrew and English text, the book is the latest among many projects he has undertaken since diagnosed in 1994 and given less than five years to live.
ALS (amyotrophic lateral sclerosis) is also known as Lou Gehrig's disease, for the American baseball player who was diagnosed in 1939 and died in 1941. The most severe of neurodegenerative diseases, it is connected to the central nervous system and progressively attacks and destroys the motor neurons. It gradually causes the muscles to atrophy. The patient is unable to use more and more of his muscles until he is completely paralyzed, leading to the inability to swallow, to speak and even to breathe. While the body is incapacitated, the brain and its cognitive functions remain intact.
At the age of 57, Melamed-Cohen felt light pain in his shoulder and weakness extending to the arm and fingers, which caused him to drop items. After consulting with neurologists, he was diagnosed with ALS, a disease which he had never heard of before. After the bleak prognosis, his approach to life was rational. He planned to spend his few remaining years traveling, showering love upon his family, tying up loose ends and preparing the family for the day after. Today, 14 years later, hooked up to a respirator and fed via a tube, he is a role model for others with ALS and serious illnesses, as well as for the many friends that he has made throughout his dynamic life.
Professional background
Melamed-Cohen is named for his grandfather, the chief rabbi of Shiraz, Persia, who came to Jerusalem and led its Persian community. His father, Rabbi Ya'acov Melamed-Cohen, was a leading educator and public figure. A square in the Rehavia neighborhood of Jerusalem, near Melamed-Cohen's home, is named in his memory.
In the 1970s, Melamed-Cohen earned his doctorate in special education and became an Education Ministry supervisor of special education and religious education for the next 30 years. Since becoming ill, he published his doctoral thesis in book form - The Exceptional Child and Special Education According to Jewish Sources. It is a textbook for students learning special education together with his book Know Your Student.
The philosophy behind special education and Melamed-Cohen's extensive experience in helping many challenged children has impacted his outlook on life. "Without doubt this has helped me have a positive attitude to my situation. I've seen children with all kinds of emotional, cognitive, physical and social difficulties who, despite everything, function well. Their willpower and hope has given me strength. According to Judaism, every person is created in the image of God and therefore one must be optimistic and happy."
When diagnosed with ALS, he was working as head of the Education Ministry's Curriculum Department. He retired officially in 1998, when he was confined to a wheelchair, although consultations and meetings have been held in his house.
Coping with ALS
Melamed-Cohen's wife, Elisheva, and a young volunteer, Moshe, interpret his speech during the interview. His speech has become more difficult to understand in the past year.
"I've always been drawn into action by my motivation," Melamed-Cohen says.
Elisheva adds: "When Rahamim was healthy, he was bounding with creativity and high motivation. These qualities have continued throughout the illness and help him cope. Once he starts a project, it's hard to keep up with him."
Eight years ago he choked at home and lost consciousness. He was rushed to Hadassah Hospital's ICU. Since then he's been hooked up to a respirator. At this point, instead of sinking in depression, a new page unfolded to a life of productivity.
His 10 books (in Hebrew) are about education, Judaism, poetry, literature and advice and guidance. His poems have been set to music with accompanying disks. One book, Therefore Choose Life is often read by professionals and caretakers of severely ill people. It is written from the viewpoint of the patient seeking respect as a whole person. He has lectured at his home and other venues before social workers, doctors, nurses, lawyers and high school students about coping with difficult diseases.
"I have a love of life and the love of my family. They're returning to me what I've given them throughout the years," says Melamed-Cohen, referring to his four siblings, his six children - all married - and his 28 grandchildren. The Melamed-Cohens have two great-grandchildren.
Melamed-Cohen's deep faith in God is evident in his writing and his art work. "One has to thank God for every breath he has." The painting I Raise My Eyes is based on King David's question in Psalms: "From where will come my help?" And he answers: "My help is from God, maker of heaven and earth."
His routine daily schedule runs smoothly thanks to a volunteer who helps out in different ways, including light housework, alongside Julius, the Filipino who attends to his physical needs. He is replaced by another caretaker at night.
Yitzhak Stern, a friend since childhood, has been coming every morning for years to help Melamed-Cohen put on tefillin. They learn Talmud (the daf yomi) together. From noontime until the early evening, Melamed-Cohen writes articles and essays, letters and e-mails, and takes phone calls. In the early evening hours, a flow of visitors start coming. "There's always traffic here," says Elisheva. "The children and grandchildren come, as do those who consult with Rahamim about various topics."
At night, he watches television or plays computer games, often going to sleep after 1 a.m. "Often this is the best time for me to paint."
Eyes instead of hands
"Rahamim has a broader vision of life, leading him to plan and think ahead," notes Elisheva. His positive outlook is also shaped by his previous successes and his conviction in his abilities to overcome the many obstacles. A healthy sense of humor proves beneficial too.
Modern technology is literally at Melamed-Cohen's side as a conduit for him to convey his thoughts and creativity. Yad Sarah obtained the Eyetech and Quick Glance 2 programs for him through Rabbi Eddie Davis and his congregation in Florida.
Melamed-Cohen sits in his special seat facing the computer screen. A camera in the center follows the movements of his pupils. Two sensors also track the movement.
"My eye is like the computer's mouse," he says. "I can blink or hold open the eye as it focuses on letters on a virtual keyboard on the computer screen. This is how I surf the Web, respond to correspondence, write books, 'paint' and perform other activities."
Melamed-Cohen enjoyed painting in his youth and decided that his 10th book would be devoted to his paintings. For more than a year, he studied Photoshop with teachers. This program provides a variety of tools like brushes, pencils, fountain pens and many options that combine to form a finished work of art. The different techniques he uses include collage, sketches and oil painting.
"I first think for a long time about the concept of a new painting. The actual painting takes me about a week to complete. It's not like painting with one's hands. I need a lot of patience."
In the collage Bread, based on the verse in Psalms: "The eyes of all look to You with hope, and You give them their food in its proper time," many of the photographed pairs of eyes are of his grandchildren.
The red curlicues creating the face and beard highlight the "fair eyes" of David before he was anointed king of Israel. The "tender eyes" of Leah, the wife of Jacob, draw the viewer into the painting with a layered background created by using brushes, texture and filter.
IsrALS
The album of paintings was published at the end of a year of concerted effort by Melamed-Cohen and all who assisted him. IsrALS, the Association for ALS Research in Israel, which has been following his illness and literary work, financed the album's production. Melamed-Cohen has decided to donate all revenues from sales to IsrALS.
IsrALS, founded in 2004, brings together patients, family members, friends and supporters to raise funds earmarked for research on the development of the disease and finding a cure. It also raises awareness about the disease, while offering support to patients and families.
About 500 Israelis have ALS. Since most ALS patients die not long after diagnosis, there is no critical mass of patients to make it profitable for pharmaceutical companies to conduct research into the disease. IsrALS has been filling this void by approaching Israel's leading scientists and asking them to submit ALS-related proposals. Until now, IsrALS has funded 18 research proposals which were reviewed by leading experts from Israel and the world. Other proposals await funding. IsrALS is hopeful that with the investment in research a breakthrough will be found and ALS will become history like other illnesses.
Melamed-Cohen participates in the IsrALS Web site forum (www.israls.org) which provides information to patients and families. His message to all: "It's worthwhile to live and have a positive outlook on the events of life."
Melamed-Cohen's paintings will be displayed at two exhibitions entitled "Avoda Ba'eynaim."
Jerusalem: The Jerusalem Theater, May 21 to June 22.
Tel Aviv: Beit Hatanach, June 3 to 30.www.melamed.org.il
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