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Living with ALS |
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by Dr. Jeffery Rosenfeld |
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Over the past year I have become an unsuspecting fan of the popular television show, Survivor. I don’t usually have the luxury of becoming committed to any regular series on television, but each Thursday I have found myself drawn to this interesting evolution of fate for a select group of likable individuals, all survivors. On the show, a group of men and women literally survive amidst a beautiful backdrop, thus far either the South China Sea or Australia. Survival, it seems, is dependent upon not only endurance of the physical and emotional hardships of their living situation, but also the political and interpersonal interactions between “the contestants.” On each episode, one of the members of the group is voted out of the group by a consensus of the others. The contestants must not only provide for their most basic needs, such as food, sleep and shelter, but do it without alienating or offending their fellow contestants. As viewers we become involved in the intricacies of their desperation and perseverance. We form our own alliances with them as they form alliances with each other. The obvious parallel between the real survival and perseverance we nurture daily in our Center is not lost. Despite the significant and life-threatening hardships these television survivors endure, I am intrigued by their absence of anger or despair even when faced with the most severe hardship. These emotions are not usually included in the hour-long glimpse of their lives-despite the additional drama it would add if it were. The ultimate prize for survival on the show is not life, but one million dollars. Even after one of the contestants is “voted off” after enduring the hardships for over four weeks, they smile and leave the show without any prize, never expressing any hostility toward their fellow survivors, or to the moderator/host, who himself is antagonistic to them. In the Center we spend considerable effort analyzing personality traits and coping styles that enable some patients and families to survive better than others. Some strategies have proven more successful than others, and learning these patterns through our observations should improve the care we provide. This process, however, can be at least as complicated as trying to identify the optimal strategies for the television survivors whose patterns we also analyze. Despite the life-threatening hardships they endure, those survivors know there will be an end to the ordeal and they go home with or without the prize money. Our patients hope the end of their ordeal comes through research. Patient survivors know that feeling hopeful is better than feeling depressed. Laughing can be better than crying. Dealing with the abilities you have today is more useful than worrying about the potential disabilities you may discover tomorrow. Being a survivor is better than being “a patient with motor neuron disease.” The process is as important as the goal. On the show, the limited struggle with survival is complicated by how the process of surviving appears to the other contestants. They cannot appear too strong or too weak, too optimistic or too pessimistic or too aligned with any one individual, but not too detached from the group either. The intricacies of real life television survival appear to be less certain that the realities of survival in the Center. The certainty of available treatment and research today is larger that the unpredictability of the real life television drama. For both groups, the success of surviving the contest is not in worrying about the process of survival itself, but rather in focusing on living with the challenges of that day. Television survivors form alliances with each other and hope their security is genuine in knowing they will not be voted off the game. Motor neuron survivors do not need to hope there might be truth in the alliances they form with the treatment alternatives we provide. There is more interest worldwide, and are more foundations established and more testable hypotheses coming to our clinics than we would ever have suspected 10 years ago. Our alliances formed during the process of living with the disease today are not theoretical or political. They were real, and they can be witnessed any time we look. Look on the Internet, look in the newspaper, look in the popular magazines, and yes, look on television. We are surviving with more certainty and hard evidence than ever thought possible. The media does not simply present our advances to the public, they scream about our progress. If you believe that you have heard more about ALS and the other motor neuron diseases since you learned of someone who was diagnosed, you are right! The awareness and exposure to ALS issues in the public has been incredible. Part of surviving is embracing this momentum. We should tell everyone that these motor neuron diseases are treatable diseases. We are today changing the neurology textbooks of tomorrow. Don’t wait to read about it-believe in these changes today. The successful television survivors need luck as they play their strategies. In our Center you need to only open your eyes. The next time someone asks how you feel-smile and tell them how you are surviving. Dr. Rosenfeld, Ph.D. Director of the Carolinas Neuromuscular/ALS-MDA Center |
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