The Spiritual Life of Transverse Myelitis
Rabbi Gary A. Huber
Congregation Beth Tikvah

Several months ago I asked my friend Sandy Siegel if I could write an article for the Newsletter regarding spiritual approaches in coping with all of the difficult physical, social and emotional issues surrounding TM. My inspiration for this goes back to the wonderfully happy event of Sandy and Pauline's wedding, at which I had the great joy and honor of officiating. I officiate at many weddings but I cannot recall in my 25 years as a rabbi a more joyous event. The sanctuary seemed to glow from the happiness of the gathered guests who came to share their love with two very special people. But this event was unique in another regard: many of the guests present had lived many years with TM or were related to someone with TM.

Reflecting back on this, I wondered if there were special issues relating to the spiritual life affecting folks with TM and their families. At Sandy's encouragement, I interviewed about 15 individuals and families, as well as several medical specialists, as to the role of spirituality and religious faith in their life. And what I discovered is that they have a very special insight into the life of the spirit that is both deeply inspirational as well as profoundly insightful. People with TM and their families have much to teach the world about the role of faith and the meaning of human suffering.

No doubt, the central emotional challenge relating to TM is clinical depression. And the sense of despair often takes on a religious dimension. Dr. Adam Kaplin, professor of psychiatry at Johns Hopkins School of Medicine, told me that "many if not all of the TM patients I see report struggles with questions such as 'why did this happen to me?' A history of past or current religious conviction can be one of my greatest allies as a psychiatrist in attempting to assist my patients with turning away from suicide as an option and finding structure and support for themselves especially during grim times." Actually, at first I fully expected to hear many tales of how the disease had utterly destroyed any sense of faith in God or even faith in the goodness of life. I was wrong. If anything, my conversations with several individuals point in the opposite direction: a growth in faith and a deepening of faith. But the faith of people with TM is not the same as before their diagnosis. It is a more thoughtful, more profound and a more mature faith. By that I mean a faith that comes after many a "dark night of the soul" and after periods of anger at God.

This bears some comment. As a clergyman, I am never worried about someone being angry at God. Anger at God following a diagnosis of TM is a natural and expected reaction to a life-transforming event. And, in a very real sense, it is a statement of intimacy with God. After all, you can only be angry at someone you believe exists and has an important role in your life. I recall the words of the Nobel laureate Elie Weisel, who alone of his entire family survived the hell of Auschwitz: "I can sometimes be very angry at God and sometimes I can be very much in love with God, but I can never be without God." I know that many people with TM have felt the same. Anger at God is an expected emotion for folks who suffer from such a difficult illness. The question is: does one get stuck at anger or does one move on in the life of faith? The testament of the people I interviewed is one of very impressive spiritual growth.

In what ways? Though the respondents (and their families) were from a large variety of religious traditions and practices, all of them to a person expressed three fundamental gifts that their religious faith bestowed on their lives: a feeling of gratitude, a sense of perspective and a renewed experience of self-esteem. From a psychological standpoint, these three comprise the fundamental armor, a kind of immune system, in the daily battle against depression. From a theological standpoint, they point to the life God wants, I believe, for each of His children: one of spiritual fulfillment, empathetic compassion for others and a fundamental regard for one's self.

Gratitude. One definition of gratitude is the ability to be mindful and appreciative of the blessings that are in one's life, regardless of your difficulties and struggles. Put differently, it is very difficult to be depressed and profoundly filled with gratitude, at the same time. The opposite of being grateful is taking these blessings in your life for granted, which we of course do all the time. Many people focused on this as the greatest benefit of their prayer life. While some people feel very comfortable in structured ritual traditions and others emphasize more spontaneous private prayer, what is fascinating is that no one said that their primary or first prayer is to be healed. That is always prayer #2. Prayer #1 is to simply thank God for the blessings that are in one's life: your spouse, your children, life, nature, freedom, your mind, etc. As one person put it: "At first, all I wanted was for this miracle working Jesus to heal my body. That's all I thought I needed.I needed lots more. Having been hit with TM at 15 forced me to seek God for answers and comfort and the ability to handle it all. Even more than healing, I pray daily for strength to cope. And that starts with counting my blessings." Many people commented that "my hope and strength to deal with TM on a daily basis comes mostly through knowing God's character and His promises" and that "my disease makes me look upon others with great compassion, because I know all about suffering. This, too, is part of God's plan for me."

Perspective. Another theme that emerged in my conversations is that one's religious faith literally gives one the largest perspective one could hope for: the perspective of God. It is to see one's pain from the larger and grand perspective of eternity or God's purpose and thus to achieve a degree of separation between one's self and one's body. As one person put it: "My body is the temporary tent of my soul." This is a crucial way to think. It is to remember that we are not bodies inhabited by a soul, but rather souls who for a time occupy a body. This shift in focus reminds us that we are created in the Divine image, and even though the body is corruptible and suffers pain, my true and essential self is imperishable and indestructible. This thought gives one great strength and courage in the battle against despair and depression.

Self-Esteem. One of the tasks of any theology is to attempt to answer the age old question as to the suffering of the innocent. The classic cry of the Biblical Job is to ask why the righteous suffer and there are as many answers to this as there are religions. But one of the standard "answers" one sometimes hears, and that is proposed in the Book of Job, is that suffering is always due to some bad thing, some sin that the person committed. In fact, the author of Job puts this view into the mouth of Job's so-called friends, who are not very friendly and whom the book treats with disdain. (God appears at the end of the Book and dismisses this view). Still, it is a simple and often heard view. What was very interesting is that not one of my respondents said that they felt they were being punished with TM for being a bad, sinful person. They are not only wise in this response, but they said the very opposite. Each of them expressed how deeply loved they felt by God and how worthy of that love they felt. Said one person: "I feel comfortable and confident with the relationship I have with God and I know that I am very blessed.I believe God loves me and accepts me just the way I am.I am in control of my life and take responsibility for my actions. Bad things do happen to people, and life is very difficult at times.Still, I think God does have a plan for my life, and occasionally he needs to guide me in a different direction from what I had planned for myself.When this happens, I rely on my faith in God, and trust he knows what is best for me at that time.My faith gives me confidence and assurance.stories I've heard growing up about the wonder of God are very real for me.I know what that kind of love and acceptance feels like.I believe God loves me in this wonderful way.How blessed am I to have such love in my life."

While each of my respondents shared their faith and its role in coping with TM, there was one additional insight many of them shared. Each one in some way made helping other people a key element in their lives. One is a spokesperson for TM research, another a teacher, another volunteers in her church to feed the hungry. All of these serve to take themselves out of themselves for a few moments by focusing on the needs of others. They feel they have something essential to contribute to society, and they are right. It is often said that volunteering to help others is good for them. What needs to be stressed as well is that it is good for you, too! In all these ways, pursuing the life of the spirit is a key element in coping with TM.