Originally published January 21, 1983 in the Stephen F. Hempstead High School Equestrian
E.B. – The extra burden by Wayne Tallman
Editor’s note: The Equestrian rarely runs autobiographical material. We are making an exception in this case and hope that everyone reads this article. We found it to be a fascinating story of courage and strength – a story you won’t want to miss. It was written, as is, by sophomore, Wayne Tallman.
Wayne Tallman as pictured in The Equestrian, 1983
On a cold December Sunday morning in 1966, Leo Tallman drove his wife Joan to the hospital to give birth to their long-awaited baby. Joan was glad it would soon be over so she could hold her firstborn in her arms. As she lay in the delivery room, Joan was unaware of the tragedy about to strike. Later, unaccustomed to hospital procedures, she didn’t think it strange she couldn’t hold her baby immediately after birth.
When the doctor began to suction out the mucous from the newborn’s mouth, the lining of the mouth tore. This prompted the doctor to rush the baby to pediatrics for special care. With the mouth torn and raw, the baby boy was unable to drink. When, out of sheer hunger, he finally started to suck, the pain was obvious with each scream, even though he was being fed with a soft-nippled bottle.
The next day Leo gently told Joan that their son, Wayne, was born with a serious birth defect called Epidermolysis Bullosa. E.B., as it was later shortened to for conversation’s sake, is a rare, incurable skin disease causing blistering, tearing and open lesions of the skin. There are four degrees of severity of E.B., with the fourth type being the worst – ending with death within a year. Wayne has E.B. type three – the worst form people can have and still live. When the doctors came in to discuss Wayne’s disease further with Joan, she was anxious to find out what was going on. Because of the extensive damage, the doctors pessimistically said Wayne would not live more than two weeks. The doctors explained that Wayne’s E.B. was further complicated by being a dystrophic, poly-dysplastic form, which meant both internal and external skin and mucous areas were involved. In Wayne’s case the internal areas affected were the mouth and esophagus. Yet, no one had reckoned with Joan’s determination and Wayne’s love of life. Wayne had to overcome many difficult obstacles as he grew up, but even careful monitoring by his parents couldn’t prevent certain things from happening. Wayne’s hands are an example of one such happening.
When people first see Wayne, they see his face and assume he’s just an ordinary young man. Then, they see his hands and they have all sorts of curious looks on their faces. Sometimes some of them boldly ask, “Were you burned in a fire?” He quietly responds “No.” Wayne doesn’t have hands in the sense of five fingers out-stretched; rather, Wayne’s fingers have become covered with scar tissue to the extent that the hands look like a fist with a sock pulled over it. His hands look the way they do because, as a baby, when he would start to fall, he put out his hands. Because of the trauma, he would tear open his fingers and palms. The lesions became bigger and bigger with each fall he experienced and eventually became so numerous that the fingers began sticking together. As conditions worsened with time, the hands became encased as one mass. He has had two operations on each of his hands, trying to keep them outstretched like others. Each time the operations seemed