In the old days the county fair included a tent with the most grotesque creatures imaginable in pictures at the entrance. It was only after arriving on the inside of the tent that you realize the pictures are real folks with the most grotesque kinds of deformities. It is then that you appreciate why rehab prefers to refer to all handicapped folks as persons with an impairment. Elephant boy turned out to be a very nice young kid with elephantiasis. Carl was that very nice young kid.
Carl’s impairment involved both lower extremities almost symmetrically. Through childhood and adolescence he required tailor-made shoes for both feet, and except for the excessive weight of each foot and their abnormal appearance, he lived an otherwise normal childhood. As a progressive impairment he lived with his normal bone structure until he was a mature adolescent. At that point the overgrowth of flesh in both feet was so extensive that tailored shoes would no longer allow walking normally. He was referred to the state’s indigent care facility for physical and vocational rehabilitation.
As we often discovered, the usual and customary treatments for unusual and abnormal circumstances often lead to unexpected consequences. For about two years Carl’s rehab was on both tracks.
Following consultation with virtually every department in the medical center, it was accepted that additional over-growth of flesh would soon lead to Carl’s being bedfast, an outcome to be avoided at all cost. Keeping him ambulatory and active would extend his ability to care for himself and possibly even become a productive person. His family was receiving welfare assistance primarily because of Carl’s care. As the thinking went, if Carl could learn to support himself, the entire family could be released from the government dole. This was the operative fairy tale for two or three years.
To minimize further over-growth, bilateral amputations were performed leaving almost normal functioning knees. The PM & R Department included a weekly amputee clinic and complete prosthetic (artificial) legs were fitted immediately post-operatively. This minimized post-surgical swelling, and allowed fitting of artificial legs and ambulation within days of surgery. Bilateral patella tendon weight bearing legs were form fitted, and Carl was provided physical therapy and gait training until he was able to walk independently with the use of forearm crutches. These major reconstructions were rarely highly successful, but they were better than the alternative.
From a career standpoint, Carl had never been anything but a student. He graduated from high school with a mediocre record at best, and in view of his questionable stability on artificial legs, his future looked best if prepared for a job sitting down. Because of the possible need for supportive medical service, as well as special job preparation, Carl was referred to a comprehensive rehabilitation center for evaluation for their jewelry and watch-repair training. The proposal was accepted, and Carl became a resident trainee in a world class rehab facility.
After a year of progress at the center Carl was believed to be employable as an assistant jeweler’s technician. His ambulation was always marginal at best, with two artificial legs and two forearm crutches. The encumbrance of multiple external appliances was finally considered to be more burdensome than worthwhile. The many appliances were all abandoned in favor of a wheelchair. The ability to stand, an implicit capability of most all folks who work, was sacrificed in favor of simplicity. Everest and Jennings wheelchairs had progressed to the point of being the better alternative to walking.
Carl returned to his hometown where he negotiated a job in a jewelry store. He worked there successfully for several months earning enough to support himself in style while living at home with his parents. According to the grapevine the family issue became welfare support of a disabled adult who was earning an income, but receiving support from and living in his parents home. The family was providing shelter, some meals, and transportation for Carl and his wheelchair to and from work daily.
So long as an income was being earned by a family member, the family was fearful of losing their welfare support. Rather than fight the bureaucratic rules, and to maintain harmony in the family, Carl gave up his job at the jewelry store and regressed back to isolation in the family’s closet. There he was reunited with his two artificial legs and two forearm crutches. The fairy tale had come to an end.