Benjamin W. Corn, M.D., & Phyllis Dvora Corn, MSc., on an experiential message of hope and empowerment

"What’s Going on in my Head?"

Most of us take pride in being compassionate human beings. But the limits of our compassion are tested when friends or family members are diagnosed with terminal illness. It’s not that we don’t want to display empathy and understanding in those situations but we often erect barriers to block our view of their suffering and to avoid imagining what it would be like for us to experience similar maladies. Life’s Door-Tishkofet (LDT), an US-Israel based non-profit organization dedicated to the mission of supporting spiritual care and meaning-making for those facing illness and end of life, hosted a fascinating exhibit that was featured in the flea-market of the city of Jaffa-Tel Aviv, Israel, during September 2008. This exhibit, which is positioned to travel throughout the world, is designed to sensitize us to the experience of being stricken by serious illness and the way people think when facing the end of life.

Ilan Dimant is a twenty-four-year-old man who stands 6' 5"; a tall body that is comprised mostly of a brave and sensitive heart. After completing his compulsory army service and taking what in Israel has become an “obligatory” post-service spiritual renewal trip to India, he enrolled in law school. All was going well until one morning he awoke on the floor of his bedroom. Opening up his eyes, he was shocked to see a group of medics asking him simple almost insulting questions. “What is your name and what is today’s date?” they queried, in order to see if he was oriented. Indeed he felt like asking them the simple question of what the heck they were doing in his room! But soon it became clear that he had experienced a seizure and that the answers to these questions were not so easy for him to produce. A Magnetic Resonance (MRI) scan revealed that the seizure was due to a growth in his brain and a biopsy showed that the growth was a malignant tumor.

In an instant, Ilan’s life had changed. He evaluated the treatment options that were available to him and embarked on a course of therapy. But what frustrated him more than the diagnosis, the prognosis and even the potential side effects of treatment was the fact that people who knew him could no longer understand him. He soon conceived of a project that was designed to help others step into his new world.

Ilan turned to Life’s Door-Tishkofet knowing that the organization promotes and encourages an open dialogue around the frightening issues of serious illness. LDT’s programs include spiritual care retreats and seminars for patients, family members, chaplains and health care professionals – all geared toward transforming the journey of illness and loss from fear and isolation to one of hope, growth and sharing. Over the course of ten months of soul searching and struggling to be understood in a world of friends and family that “cared but could not be where I was,” the concept of an exhibit began to take form.

Ilan’s project, “What’s Going on in my Head?” is an experiential exhibit that expresses a message of hope and empowerment in the face of a terminal disease. One is led through a series of rooms, which are actually way-stations on a journey. First is the bedroom where the convulsions occurred. Feelings of shock and violation are conjured up as one beholds shattered glass and disarray. In Ilan’s words, “the irony is that the room was broken into not by someone else but by me – a new intrusive part of me (in the form of a tumor) that I did not recognize”. As in the case of a burglary scene, there is the pressing need to know –“what has been taken.” Ilan likens this to the loss of social supports, life roles and physical and cognitive functioning that he is continuously challenged to “inventory” and reorganize since the time he was diagnosed.

The second space is a hospital room configured as a casino. The visitor feels dwarfed as he finds himself standing on the green of a blackjack table with gambling images overtaking the space. The casino is filled with the playing cards and chips that typically grace the blackjack table with one crucial difference; the card dealer is a physician. “There is a feeling” continued Ilan “that someone else is gambling with my life. How does one deal with such high stake decisions? Sure, the surgeon’s scalpel could remove the tumor, but could it also cause paralysis or speech defects?! Radiation therapy might prevent the tumor cells from growing back but could it also damage memory and the ability to think?” Most of us probably have not had to contend with such existential questions; but in life, the options before us are rarely marked “good” and “bad”. Where does one choose to place their “chips of life?” reflected a visitor who has been battling breast cancer for eight years as she recounted the numerous options that were offered to her and the absence of a single unequivocal treatment plan.

This is followed by the “tip room”. Flat screen monitors which are suspended from the ceiling display advice-givers that descended upon Ilan. Many are comfortable playing the role of the expert after hearing about a medical success story or doing a Google search. But a cacophony of talking-heads is overwhelming despite the best of intentions. Next stop is a mirror maze where all is suddenly distorted. Other surprises follow as what Ilan classifies as “the excellent adventure in cancerland” unfolds.

Rooms are separated by a door that opens to a brick wall; a metaphor for the locked-in feeling that makes it impossible for so many cancer patients to break free. The journey ends in a “dialogue room” where trained professionals (e.g., social workers, psychologists) sit down with the visitors to process the emotions that have been evoked. There are no right or wrong answers here. There are simply raw feelings that need to be re-routed. This space suggests that the response to life threatening illness is frequently not best found in the search for a cure, but rather the quest to find hope and meaning. It is through human connection in a trusting and loving environment that hope can be found.

Over 5000 visitors attended the fourteen day run which was covered and extensively praised by the leading Israeli media. Aside from the general public, groups included high school classes, trainees and professionals from the field of medicine, social services and the creative arts. Most poignant were the reactions from patients and family members who closely identified with the emotional turmoil and discovery to which the exhibit gave voice. As one brother of a cancer patient expressed, “For over a year, I have sat, talked, cried and shared so much with my brother…but it was not until today that I see how much I did not ‘get’ him. Now, maybe I can find a way to enter his world, and his heart so I can truly be with him. This has been a gift for all of us”.

What’s Going on in my Head? is copyright protected and preparations are underway for the exhibit to be licensed and to travel internationally. As part of the licensing arrangement, the professional team at LDT will provide training and consultation to those sponsoring the exhibit which is an ideal community education and development project for health care, educational and creative arts organizations.

It is perhaps fitting that the premiere opening of the exhibit was erected in a flea market. The colorful market, located just south of Jaffa’s prominent clock tower, has recently been renovated to include trendy restaurants and upscale galleries. But the name of the game is still the quest for a bargain while assessing merchandise, which can be construed as pure trash or priceless treasure. Flea markets can be off-putting. Not everyone has the patience and determination to sift through the blemished wares. It can be argued, however, that those who persevere can harvest valuable rewards. Ilan Diamant has taken the materials of everyday life and crafted a meaningful message that can only be characterized as a true “find”.

Reference:
Wear D, Zarconi J: "Can compassion be taught?" J Gen Internal Medicine 23 (7): 948-953, 2008.

Dr. Corn will be a Plenary Speaker at the Spiritual Care Collaborative Summit 2009 in Orlando. More information on this or other LDT programs can be found at www.lifesdoor.org.

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