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Facing Multiple Sclerosis: Our Longest Journey

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Multiple sclerosis is a terrible, unpredictable disease that slowly sabotages the the central nervous system, often over a period of many years.

Dorothy Shatzky was diagnosed with MS some years ago and by now lives in a nursing facility near her home and is confined to a motorized wheelchair. In this book, her husband Joel, with Dorothy's collaboration, tells the story of the physical, emotional, and financial stresses they have endured. It is not a disease only they have faced but a continual succession of worrisome problems, some of which have threatened their financial security. Dorothy has lost much, but still is an avid reader and observer of current affairs. Both have lost the mutually supportive family life, the sharing of tasks, that many couples take for granted.

With the help of a special van, the Shatzkys are still able to go out together to concerts or films and even to contemplate some wheelchair-accessible foreign travel.

This book does not provide any easy answers or quick fixes for those in a similar situation, but the Shatzky's experiences are a testament to the value of taking life's journey one step at a time and using our human resources to the full in meeting the sometimes incredibly difficult challenges life may hold.

Joel is a scholar and a writer, so part of his response to MS was to write a book about it -- to describe the bitterness and pain as well as the brighter moments. Perhaps the writing of this book helped the authors hold on to their sanity and their senses of humor. Those who have lived with Alzheimer's or other degenerative diseases will understand.

At the end of the book, Joel has put together some positive recommendations for nursing homes that care for patients with MS.

Once upon a time their was a young couple very much in love. Joel and Dorothy were only in college when they met. They married young and ran off together to pursue their careers. They found success and happiness in a quaint little college town, where they went on to have a handsome son and later, a beautiful daughter. Things were perfect until Dorothy started having the problems. She began to lose her balance and fall. She started to loose feeling in her extremities. Eventually her youthful walk became an unreliable lurch. One day Joel was happily living with his beautiful wife and children and the next, he was lifting her into the car because she was unable to walk. Dorothy was losing her health and no one knew why. Dorothy Shatzky is one of an estimated 350,000 people in the United States who is diagnosed with the debilitating autoimmune disease known as multiple sclerosis(MS). She has chronic progressive MS, just one of its many forms. Her condition is a slow constant deterioration. So exactly what is multiple sclerosis? It's an unpredictable disease of the central nervous system. MS can range from relatively benign to somewhat disabling to devastating, as communication between the brain and other parts of the body is disrupted. Symptoms are all over the board, ranging from general fatigue, to vertigo, to vision disturbances. Because of this, physicians may not be able to readily identify the cause of the symptoms, leading to years of uncertainty and multiple diagnosis. Dorothy's diagnosis was an extremely challenging thing for the young couple to face; they had to come to terms with the possibility that some day Dorothy might not be able to walk, control her bladder, have sex, or even control her own mind. They recount their fears, doubts, and struggles of living with this terrible disease for over twenty years in a co-authored book titled, Facing Multiple Sclerosis: Our Longest Journey (Dry Bones Press, 1999). This is truly a remarkable work that provides valuable support for people in similar situations, both for the disabled person and the caregiver. It deals with such things as the strain the disease puts on relationships, the question of giving up, and tough decisions about care options, such as nursing homes. The book finishes with an emphasis on increasing people's awareness about nursing homes. The second-to-last chapter, The First Circle, recounts Joel's experience and reactions to the nursing home that Dorothy has come to live in. In the final chapter, What Needs to be Done, Joel offers up suggestions about what should be done to improve nursing homes. In these closing chapters, Joel is critical of the popular portrayal of nursing homes in the media. In particular, he discusses the film Marvin's Room, which he says demonizes nursing homes. In the 1996 drama, a dying woman spends every minute of her life taking care of sick people. Shatzky has a problem with this perspective and feels this isn't good for the sick person or the caregiver. Essentially, the caregiver often feels guilty and runs themselves ragged in their efforts, but Shatzky says that sometimes you do need help and it's OK. The idea for the book came about in 1997, when Joel was a on sabbatical from his teaching job at Cortland College and felt it was time to write something about Dorothy's condition. At first he began on his own, a little angry and embittered about the cruel hand that fate had played him. About a third of the way through he realized that Dorothy had to be a major part of the book. Initially she gave him interviews, which he recorded verbatim. Later Dorothy decided to start writing her own chapters, so the work really encapsulated both of their voices instead of one. This is really the uniqueness of the book, usually these books are written by a doctor, or a doctor and a patient, but this book gives you the insight of two people who are going through this together. Originally, when Dorothy began helping Joel with the book, she was just humoring him and thought it was very good therapy for him to get out his emotional anger. She never actually expected anything to come of it. Boy was she shocked when it was published. Since the book's release the Shatzky's have been actively involved with it. They have done several book signings, the piece was featured in Inside MS (a national MS magazine), and Dorothy had an article published in a magazine called, Accent on Living. Playfully, Joel responds to the success with, "We're just waiting for Oprah to call." All things considered, Joel and Dorothy Shatzky are doing well. They are the proud parents of a twenty-six-year-old son, who just became a lawyer, and a twenty-two-year-old daughter, who just graduated college. Dorothy keeps busy, bussing to work at a sheltered workshop in the mornings, meeting Joel evenings at the nursing home, and voraciously reading books whenever she gets the opportunity. She hasn't been able to walk in fifteen years, but that doesn't stop them from going out to dinner and movies quite frequently. They also travel, only two years ago they went to Europe together with their daughter. Joel continues to teach drama at Cortland College, where he has worked for over 35 years. Aside from teaching and spending time with Dorothy, he also enjoys writing. Regarding writing, Joel sprung another possible co-authorship on Dorothy for the first time during my interview. Joel currently has three other books published: Contemporary Jewish-American Dramatists and Poets: A Bio-Critical Sourcebook; Contemporary Jewish-American Novelists; and Theresienstadt: Hitler's Gift to the Jews. In addition to books, he has been an active playwright, having some of his plays done in various parts of the country. After teaching for so long, Joel is considering retiring and spending more time on his writing. He has a couple of ideas for future books, mainly dealing with education and college. Facing Multiple Sclerosis: Our Longest Journey is invaluable as a therapeutic guide for those people who are trying to cope with family or friends inflicted with debilitating diseases. It isn't a scholarly-medical treatise and it doesn't have all the answers, but it can certainly ease the pain. Dorothy's life is an amazing testament to the power of love, patients, and care. If it does nothing else, this book will be responsible for raising people's awareness about a tragic illness.