A Dead Sea retreat helps couples deal with the tensions and problems of every-day life when one of the partners is terminally ill.
By ANDREA SIMANTOVtishkofet couple 88 298(photo credit: Suzie Frankel)
Although the morning was quite chilly, the atmosphere among those boarding the bus at the Jerusalem International Convention Center was almost that of the first day of summer camp. Laden with backpacks, suitcases on wheels, satchels and bags of snacks, we enjoyed the scenic bus ride to the beautiful, pastoral setting of the Ein Gedi Health Spa. We had come from every corner of the country. Strangers to one another, like many first-time campers, we were playing it cool.
Half the campers attending the Tishkofet retreat were unwell. It was a quiet ride because, instead of anticipating fun, these campers were hoping to glean new insights and concrete tools to wage war against the indiscriminate conditions to which they'd been subjected.
Established four years ago by former Philadelphians Benjamin and Devora Corn, both 46, Tishkofet is the Israeli branch of the US-based 'Life's Doors Hospice.' Both branches maintain the belief that a person's quality of life greatly affects his or her ability to attain a sense of peace, and that dying, in truth, should be a life experience.
Although the directors are native English speakers and many of the professionals attending were also 'Anglos,' the retreat was held in Hebrew. The cost - approximately NIS 600 per couple - was subsidized by some 25 private sponsors. Tishkofet's annual funding of about $150,000 from private and corporate donors goes directly to supporting patient and professional programming. Another $40,000 comes directly from the UJA Federation.
Almost everyone who registered came with their spouse. The program, designed to promote partnership, was entitled 'Partners For Life.' According to founders Benjamin and Devora Corn, illness affects more than the individual patient: When one is ill, the way he or she copes will most likely set the tone for all those around him. Intense changes brought on by illness create stresses that may undermine relationships. Taking time to recharge and reconnect in an atmosphere promoting growth and relaxation can be crucial for future resilience of the individual, the couple and the family.
Some 30 couples shifted nervously at registration, smiling brave smiles most likely due to the discomfort of facing strangers who share the same night-terrors, uncertainty about the future and confusion about treatments and therapies. The few lone participants were the 'healthy' partners, whose mates were either too ill to make the journey or uncomfortable with the possible 'touchy-feely' aspects of the program.
All were given name tags, and a blank notebook and pen. The first session was held in a large conference room where padded chairs were strewn about, immediately lending credibility to the informal nature of the upcoming events. Informality was a key component to getting participants to open up.
Dr. Benjamin Corn, clad in a turtle-neck pullover and chinos, stood at the microphone and greeted the crowd. At first, his youthful appearance can be a little disconcerting but then you see his eyes: deeply-creased in the corners, perhaps as a direct result of intensely caring about the welfare of others. Or maybe it's his sense of humor. Coupled with a hearty, infectious laugh, he is both charming and sincere.
Corn is the director of the radiology unit at Ichilov Hospital in Tel Aviv. "Even doctors are at a loss as to how we should deal with the human elements of chronic illness," he said. "At Tishkofet, we have a new, quite different perspective. We want to change the thinking that surrounds poor health from one of depression to one of exploration. That is what the retreat is about. And even though this is very difficult for a couple, we are here to discover tools."
Tishkofet is Hebrew for 'perspective.' The organization's goal is to provide support and enrichment for couples coping with cancer and other serious illnesses. Although there were a few examples of non-life-threatening chronic conditions, such as Chrone's Disease among the attendees, cancer was most prevalent.
One young woman had been in total remission for years, but felt that being there would - even retroactively - help relieve her of the panic attacks that still accompany her.
The retreat's program was designed to encourage 'networking' among participants by improving communication both between partners and with other couples; approach sensitive issues that affect many couples coping with illness, such as changes in sexuality and fear of death; and provide respite from their weighty, everyday lives with relaxation and entertainment.
In her greeting, Devora Corn further put everyone at ease by explaining that while journalists and photographers would record the event, anonymity would be respected. People visibly relaxed upon hearing this, confirming that the retreat was to be an intimate experience.
Barely skipping a beat, the first session began. The participants separated into five groups, each under the supervision of a qualified social worker. A pile of seemingly unrelated items was placed on the floor in the center of the circle and everyone was asked to select something that would allow him to discuss what he was feeling.
Ilana (all the participants' names have been changed) selected a colorful wooden bead. "A bead is about 'continuation,' stringing together all the pieces of my life," she said.
Seventy-year-old Shoshanna wrapped a turquoise silk scarf around her neck and whispered, "Even when times are terribly hard, I realize that there are beautiful, soft things all around me. It reminds me of my youth. I know that God takes but He gives so much more…"
Danny's wife sat quietly at his side. Quietly rubbing the small of her back as he spoke, he was careful to avoid the pipe attached to her portable oxygen tank. "Dafna is my life, my strength. I chose this Lego block because our entire life together is about 'building.' We have fifteen grandchildren and they are all blocks in the world we've created."
Johnny put a plastic headband on his head because it reminded him of a "rainbow from heaven."
Gila palmed a battery. "This means 'energy' - not just for me, but for my family."
And David, a young father from Ashkelon, more visibly weak than other participants, peered through a plastic telescope and said, "My cancer returned but I must keep looking far ahead, to a future with my wife and children."
His wife held up a plastic butterfly and announced, "Some things are fragile. But there is also beauty."
The mix of secular and religious participants added a spiritual aspect to the retreat. Illness does not discriminate and, despite different approaches to prayer, faith and questions regarding a Higher Power, the air was heavy with spirituality and the need to connect in more mystical ways. After all, the 'flesh' had rebelled and everyone spoke in 'religious' terms.
Baruch, an ultra-orthodox Haredi man, cradled a rubber fish in his hand and shared: "I feel frustrated. I did everything right and still I can't find answers to my sickness. But this fish reminds me that, for some, rain means survival. Where it is dark, he lives and sees everything, even things that are invisible to others. His eyes are always open. But me? My illness has made me a fish-out-of-water."
In other circles, the exercise appeared angrier. "We have choices. If today I push, tomorrow I have to push harder!" said one participant.
The circles disbanded and a microphone was passed around the room. Ben Corn asked, "Why are we here? What do we want to take home with us?"
"I want to meet other 'real people,'" explained Yehuda. "No one knows what we're experiencing, except those who live it. The people here can help me cope."
"I can't deal with my health fund," shouted a woman called Sara, "and I want to learn more about 'common sense' medical tactics. My doctor doesn't have the time to talk to my husband about his cancer!"
"I want to find faith," Mira stated, simply.
Many participants wanted to talk. Sometimes the healthy partner sat in stoic silence while the ailing mate shared. Other times, the opposite was true.
Anxious to understand the 'couplehood' aspect of the retreat, I hesitantly asked a young woman if she'd be willing to speak with me. Her fragile husband seemed to need more medical assistance than anyone else, and they had almost canceled their reservation. One morning three years ago, Motti felt too achy to go to work. His job as a building superintendent in the center of the country was physically demanding and he suspected pulled tendons in his shoulders and upper back. A doctor prescribed muscle relaxants and told him to take a hot bath.
When the pain didn't abate, he was sent for x-rays and a CAT scan, and diagnosed with stage 3B lung cancer. The documented survival rate is 5 percent.
With this in mind, their fight began - with the emphasis on 'we.' Karen and Motti are a 'very together' couple. She speaks softly with a subdued Australian accent, but this only belies the passion of her campaign. "When we heard the numbers, we were in shock. I couldn't understand how Motti could just sit there! The doctor was terribly callous. It was as though he was giving up on us, so Motti could go home and die. We found another oncologist who concurred with the numbers, but his whole attitude was different. He said, 'Yes, those are the statistics. Our job, however, is to make sure that Motti is one of the five percent.' This gave us the will to carry on."
Feeling liked and respected gives them great energy, they explained. Karen appeared almost embarrassed when she said that, perhaps, the hospital staff gives them a "bit more" attention because they are so young. Motti is only 40 now and Karen is a little younger. Noticeably pregnant with their third child (made possible through in vitro fertilization), her eyes remained clear and dry throughout the interview.
Her husband has undergone surgery after surgery, followed by acute medical intervention. The last time, however, there were unexpected complications and he had to be re-hospitalized due to severe congestion. Several times during our discussion, he was wracked by fits of coughing.
Upon returning from a family vacation this summer with their two daughters, they went for their routine CAT scan only to discover that the cancer had returned. Motti lapsed into a terrible depression. For the first time, he acknowledged his mortality. Even Karen thought, 'he may not make it.' Expected survival rate is now down to 4 percent.
"Sickness has made our marriage stronger, better," she said. "We don't choose what God gives us. He often sends what we don't ask for. Some things we can't reject, but we can still say 'no' to other things. There is so much goodness in the world - this is my focus. I have a fantastic husband and I live in Israel. When I'm down, I concentrate on the blessings."
Their children are aware, without fully understanding the potential consequences. Karen makes certain to answer what she is asked, and keeps her answers 'age-appropriate.' Despite appearing quite frail, Motti still manages the home while Karen is at work. He even keeps up his volunteer work with local youth. "We are religious, but on some days I think my faith is merely an opiate," she confides. "For a long time we kept his illness a secret. We didn't want sympathy. But now everything is out in the open and I'm learning to accept help. Now I have to gather prayers. We need to bring the future closer. We have a bat mitzvah next year and I don't want to do it alone. If it's a boy, how can there be a brit without Motti? Cancer isn't embarrassing. It's part of our lives."
The retreat covered a multitude of aspects. Integrated discussions of alternative and conventional treatments were conducted at the same time as art expression workshops and a 'healthful cooking' class. A night excursion, 'Reflections in the Desert' brought us to the shore of the Dead Sea, listening to the sounds of our very alive heartbeats as we sat beneath an umbrella of starlight. There was an inspiring role-playing gathering, and in a grassy knoll, folks rolled mirthfully during a session called 'Laughing Towards Health.' Free time included cosmetic makeovers and massages.
In each session, the enveloping focus was 'partnership.'
Which brings us to intimacy: Illness-be-damned, everyone wanted better sex, more loving and, ultimately, affirmation that they were still attractive to their partners. "Each medicine has different side effects, most of them 'unwelcome,'" explained Livia Kislev, a registered oncology nurse and sexuality specialist. "However, there is no such thing as 'no solution.' Sex is like exercising. You must use your skills and bodies."
She explained that sometimes stagnant hormones just need a gentle 'push' to get things going. The discussion was alarmingly frank and not for prudes. There were, apparently, very few prudes at the retreat. Lubricants and viagra were touted as favorite aids during this difficult time, but everyone was encouraged to discuss their medication and treatments with a professional before self-medicating. Pharmacologists and licensed medical-sexologist can best counsel against dangerous combining of treatments. Black market pills got a big thumbs-down as very dangerous. "Better to have less sex with more security," said Kislev.
Love can be expressed in many ways and, by relearning 'touch,' the emphasis on the sex act itself will hopefully be lessened, she concluded. "You are normal people, capable of great intimacy."
Thirty hours after receiving our name tags and notebooks, it was time to say goodbye. We had started out as strangers and, magically, had evolved into a loving group of forever-friends. Gathering in the dining hall after a late and final meal, almost everyone blinked back tears and smiled brave smiles. Some couldn't speak when the microphone was passed to them. Others could barely wait to express their gratitude and boundless love for the staff and fellow participants. Blessings were offered en masse. Phrases tossed into the pot included "My new friendship circle," "I take a part of you home with me," "I brought with me all the agony of the last two years but now, I know I am not alone," "I'm leaving in an optimistic state, filled with hope and deep love for my wife," and "Here there is no sickness. There is only love."
Ilana, who on the previous day had chosen a colorful bead to express continuity, turned to her husband and said aloud, "Thank you for loving me these last thirty years." He buried his head in her hair.
Preparing for death, with dignity
Life's Doors Hospice (www.lifesdoors.com) offers a full spectrum of hospice services at home or at several nursing facilities throughout the state of Idaho. The program offers clinical and supportive services to patients and families coping with a terminal illness. When curative measures are no longer possible, the hospice focuses on the physical, emotional, social and spiritual needs of the patient and family.
The organization believes that treatment should be based on compassionate care and a full understanding of terminal illness. Life's Doors boasts a complement of nurses, physicians, home health aides, social workers, chaplains and volunteers who help individuals with limited life expectancy while maintaining their independence and dignity.
While there are over 3,200 Medicare certified hospices across the US, hospices remain a relatively new concept to many Americans. A summer camp for children who have lost a loved one is also part of the Life's Doors programs.
Growth through illness
"It wouldn't be fair to classify all cancer specialists as hardhearted, but it might be accurate to say that they keep their distance when a sad outcome is inevitable. Maybe it's because they don't want to be the deliverers of either false hope or hopelessness. Or, perhaps, they need to keep their distance because shouldering so much pain can be detrimental to their own objectivity," muses Tishkofet's co-founder, Dr. Benjamin Corn. In any case, once the 'medicine' part of chronic disease is no longer applicable, doctors seem to absent themselves from the messy, human element of illness."
Corn, however, leaps into the personal, emotional eddy of patients' lives. "I didn't need to do this," he told Metro, "I had to do it. I was 11-years-old when my father died. He had prostate cancer and succumbed at the age of 52. My parents didn't share any information with us. When it was revealed to me and my siblings, we broke."
"I was raised in a Torah observant home and I'm still religious. I had to make peace with God's decision while, at the same time, I was surrounded by adults who didn't know what to say. Dad died on the seventh day of Pessah. The doctors were sterile, cold. The center of my world had disappeared and they, suddenly, became robots. Even our rabbi, who was a brilliant orator, could offer no comfort. I've always been an optimistic person and feel that the Torah gives us hopeful responses, but we have to know how to decipher them. My challenge was how to remain upbeat. After many years, I concluded, there can be growth through death. My father didn't have that same appreciation, so how could he have shared it with others?"
Years later, as he began his own medical training, he faced similar detachment from medical school instructors. Corn decided that he needed to 'be' something different, to offer compassion when a family was in pain. Thus, Tishkofet sets aside more that half its operating budget for teaching professionals.
"Ultimately, I'd like to build an international center here in Israel. People can't help but feel spiritual here even if, at first, those feelings are dormant. In the immediate future, I'd like to hold longer retreats which can deal with deeper issues."
Corn insists that Tishkofet is not a dogmatic organization. "Some people get nervous with anything appearing the least bit 'new age' or with a religious agenda. Believe me, we are modern, cultured people and no one's philosophy is pushed on another. We'll take inspiration from any source, as long as it helps people with growth and ultimate acceptance. For example, Buddhism holds many ideas about the end of life and illness that are consistent with the Torah outlook."
A person who learns to understand death's perspective will appreciate life. Sick people have a unique vantage point - when they reach a place of acceptance, they become great resources for the rest of society. They know what is worth fighting for, while at the same time, goals are reassessed. The shift takes place when someone realizes, 'I didn't have the same things to give two day before my diagnosis. For me, the creation of Tishkofet was the closing of a circle. It enabled me to do what my father could not, and in turn, pass it to others."
Tishkofet, a non-profit organization, offers programs and lectures in both Hebrew and English. For further information, see: www.tishkofet.co.il. Tel: 02-571-4122.
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