On June 16th, 2001, we returned once again to Ben's Deli and Restaurant at the Bay Terrace Shopping Mall in Bayside,Queens for the fifth luncheon and support group meeting for the members of the New York TM Support Group. We also noted the second anniversary of the "Transverse Myelitis Awareness Day," a resolution passed by the New York State Legislature designating June 6th as the celebratory day for this annual event.

We were a diverse group of twenty-eight attendees, which included members, families and friends traveling from Long Island, Westchester County and New York City. We welcomed six new attendees to our group with the hope and expectation that they would return again. After partaking of Ben's famous Matzo Ball soup, oversized deli sandwiches and the condiments that accompanied it, we convened the meeting. As our principle speaker and leader, I introduced Ms. Hope Klopchin, who had just completed her doctorate at the State University at Buffalo, NY in counseling psychology. For this salutary occasion, and unknown to Ms. Klopchin we had ordered a cake to be presented to her to acknowledge the perseverance, hard work and intellectual ability it took for her to achieve this high honor and degree. As I have previously written, Ms. Klopchin was afflicted with Transverse Myelitis at the age of twelve and struggled through a recovery period of five or six years. Ms. Klopchin was surprised and delighted by the presentation and accepted it with her usual composure and good spirits.

Ms. Klopchin commenced the meeting by distributing a diagram that resembled a four-sided diamond. On each joining of the four-sides were printed the four components of the diagram:

1. Physical Health, 2. Emotion,
3. Thoughts, and 4. Behaviors.

She explained that the diagram is known as a "Pentagon Cognitive Behavior Therapy Model." She further explained that all four components interact with each other to produce someone's experiences. The point of the model was to show members that two components can not change directly and those two are your physical health and emotion. However, you can change these two components indirectly through changing your thoughts and behavior directly. Hope discussed briefly how thoughts and behavior can bring about this change. We also discussed the interrelationship and interaction between the four components and the ways each one can affect the others.

At the end of Ms. Klopchin's presentation, there were relevant responses and questions about the discussions. Primary among them were the concerns of the members' families and caretakers. They spoke about how they cope and interact with the afflicted family member and about their mutual frustrations and problems associated with their respective roles. A general discussion ensued about medicine and doctors; how doctors can affect the way you feel about yourself; the doctor's impact in a positive or non-positive way and how it relates to your well-being. We discussed the way each of us has different priorities when visiting our doctors, such as seeking emotional support and assurance, future prognoses and any new treatments.

Another theme, as presented from a personal viewpoint by several new members, touched upon familiar denial of the disease, whether by a parent or a spouse. One member was visibly disturbed by her mother's refusal to accept her illness by not disclosing or discussing it with anyone. Another member confirmed that his wife had reacted in a similar manner. She has not changed her lifestyle in any way to accommodate his illness. Ms. Klopchin responded by stating that the way we think about illness directly affects the way we feel about ourselves and the things we do with our lives. This, in turn, effects our emotions and may indirectly affect our physical health. She then posed a question, "When do you accept what you have?." Answering it, she stated "When it becomes a part of you, rather than being outside of you."

She further commented that some people actively seek a cure for their illness and use this as a conduit to come to terms with it. We briefly discussed body image and self-image and how it relates to diminished physical power and ways we can cope with this loss. At some point in the meeting, I mentioned that I would be attending the symposium in Baltimore, and that I would report and comment on some of the highlights and events that occurred there. At the conclusion, many members confirmed that the discussions had engaged their thoughts, emotions and the way they felt about their illness. They also said, that by coming to the support group meetings, they felt less isolated and more connected to those in similar circumstances. They also expressed a feeling of comfort, encouragement and acceptance from their fellow members.

Congratulations again, to Hope Klopchin for achieving her goals and being our "Fearless Leader."

Our next support group meeting will be held on Saturday, November 3rd at Ben's Deli and Restaurant at the Bay Terrace Shopping Center from noon to 4:00 PM.