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
successful, but then the enclosure of the fingers always started again. What happened is that sores would develop in between the fingers at night, causing the fingers to stick together. Since his body becomes relaxed as he sleeps at night, his fingers would curl farther and farther inward and begin to stick. He would get up in the morning and they would be stationary. Every night when he’d go to bed again, they would curl and close more and more until finally his fingers were enclosed in a cocoon of skin.
All the fingers were encased except his thumbs which became partially encased and stopped. Last year though, Wayne developed a blister which turned into a sore in the crack of his left thumb and hand. His left hand is now enclosed.
The dexterity of his right hand is fine insofar as his thumb is still free, enabling him to pick up paper, pens and pencils and handle forks or spoons and other things used in the course of a normal day. He can’t open certain knob-type doors like he could when his left thumb was open, but he can do most everything else. Wayne is a right-hander which is possibly the reason his right thumb hasn’t shut, being in constant use, with his writing and typing. He types by taking a pencil and turning it upsidedown so the eraser tip hits the keys. On a computer he uses his knuckles and-or thumb. All things considered, Wayne is quite agile with his “hands”.
Even though Wayne has made it to fifteen, he has had problems just like any average person. The trauma E.B. causes can become so painful that Wayne’s physical mobility is restricted. Such stiff, restricted movement is awkward, as well as dangerous, because Wayne is more prone to accidents involving falling or tripping. For example, the week before Christmas 1977 Wayne, his mother and grandmother were seated at the kitchen table eating lunch when his mother made the casual comment she needed some wrapping paper from upstairs. Since Wayne was finished eating, he scurried off to get the paper, and while going up the stairs he fell.
Both knees were ripped wide open as blood ran down the side of his calf and into his sock.
A painful cry brought his mother and grandmother running and gently they helped him into the bathroom. A minor fall for most children had been a disastrous one for Wayne because the skin on his chin had been completely wiped off. Both knees were ripped wide open as blood ran down the side of his calf and into his sock. Huge, blood-filled blisters formed almost immediately all the way around each damaged knee.
Joan used Telfa pads over Wayne’s open lesions and held them in place with Gauzetex, a nonadhering gauzelike tape. Normal bandaging methods would not work on Wayne since tape would tear the skin and leave him in worse shape. After his mother patched him up, he felt extremely uncomfortable with the contraption of Gauzetex she rigged around his head to keep the huge Telfa pad on his chin. For several days it was difficult for Wayne to eat or drink without moving his chin and causing pain.
By Christmas the sore had decreased so much in size that only a pad the size of a matchbook was needed. Finally, the day before Christmas vacation was over, no pad at all was needed, and most of the areas had completely healed. The only noticeable sign of any damages was the light pinkness in the area of the sore, and not one person at school even noticed.
Yet, external skin damage is not all Wayne must contend with because his throat is just like his layers of skin – it tears at times when he swallows his food. Before it tears, Wayne feels the food get lodged by a ridge of thickened skin in his throat. The food gets caught and it either takes several gentle pushes on the outside to get it down or he tries to cough it up.
Wayne can breathe and talk while this happens, though sometimes his throat tears inside if he pushes too hard in order to get the food down. When this happens the layer of torn skin buckles up and exposes a raw area. Unfortunately, this makes him unable to swallow anything, including his saliva, without causing more tearing and pain. Usually, for the first six hours after the tear, Wayne takes fluids only in an effort to give his throat a chance to heal up a bit. However, after the throat heals, it leaves an even thicker ring of scar tissue behind which means his throat passage gets narrower and narrower each time it tears. From the very first time food became lodged, a narrowing, or stricture, began. Every time from then on when he has difficulty getting food down, the stricture becomes greater.
For all of Wayne’s problems, though, taking baths is probably the worst time because of the intense suffering he experiences. It takes about two hours for a regular bath, though if he’s doing well, it only lasts an hour. First, ten minutes are needed to get undressed and ready to get in the tub. Once in the tub, it takes twenty to forty minutes to soak and take off all the pads stuck to the sores. Once the pads are removed, Joan carefully spends twenty minutes washing him. After washing, it takes forty-five minutes to open new blisters, patch open lesions and help him get dressed. Wayne really can’t give himself a bath because of the pain he goes through. Wayne braces himself in the tub as comfortably as possible while his mother bathes him. Wayne must brace himself in an effort to apply the same amount of pressure to a portion of good skin on his body as is exerted on an affected area. This equalization creates a distracting discomfort and makes the bath ordeal easier. Though bathing is painful, his bedtime is equally painful because Wayne can’t distribute his body pressure evenly throughout the bed due to the various sizes of his sores. Because of Wayne’s discomfort, Leo and Joan bought a sheepskin for him to sleep on when he was young so he wouldn’t stick to the sheets. On hot nights he still finds himself sticking with sweat to the bedspread or sheepskin and often will lie awake for hours before finally drifting off.
Another sleep related problem concerns Wayne’s eyes. His eyes get injured by the friction of the eyelids on his eyes or the “sleepers” falling into the eyes during the night. Most of the time only one eye is injured and rarely are both eyes affected at the same time. The eyes begin to get a grainy feeling, a blister develops during the night, and it breaks open leaving a sore sticking partially to the eyelid.
Whenever this happens Wayne must keep his eyes shut for days and remain in bed. On the days he could open them, his eyes would become irritated when any object, or even a puff of wind, made his eyes flutter. Wayne’s eyes wouldn’t be able to stand the constant friction of his eyelids blinking. Now that he’s older, eye injuries hardly hurt at all, as if he’s built up an immunity to the pain-staking ordeal. Also, being older, Wayne has learned ways to deal with his eyes. If he discovers the injury during the night, he stays awake with his eyes open for ten minutes, and then slowly shuts them and sleeps until morning. When he wakes, his eyes are 98 percent better!
“Why me, God? Why?”
During his baths and days of severe pain, Wayne finds himself asking, “Why me, God? Why?” Throughout all the pain and suffering, Wayne wonders about his purpose in life. What could he do to fulfill his life and still keep within his restrictions?
Wayne’s faith is a strong bond. In time of pain and suffering Wayne talks with the Lord and, though he has yet to get anything back “verbally”, he feels that in a way he does get something. When his spirits are flying high and he’s praying to the Lord, he tells the Lord that if He can’t handle all the pain people are sending Him, Wayne would be happy to take some to help bring comfort to the Lord. At other times, when things are bad, and Wayne prays for the Lord to take the pain away but it stays,
he does get a little discouraged. Still, he knows the Lord is listening to all of the people’s prayers as well as his own, so while the Lord takes care of the others, Wayne is confident the Lord hears him. Wayne understands the ways of the Lord. He knows the Lord is listening, but really can’t do anything immediately because He feels there are others worse off. Yet, Wayne continues to have faith and continues to pray fully confident that the Lord has a purpose for him.
Throughout all of his difficult and painful experiences, Wayne tries to see the lighter side.
Throughout all of his difficult and painful experiences, Wayne tries to see the lighter side. Many people wonder, “How could there be a lighter side to all of this?” Wayne’s optimism quickly responds. He knows he has this problem and there’s little he can do about it. Thus, Wayne dives headlong into activity, getting a full measure from each day. He’s been in three different plays at school and belongs to a computer club. In computer club he learns how to use and program computers. He has had meetings twice a week where he first learned the fundamentals and then began thinking of programs to educate or entertain. Now he’s working on a game to entertain called “Maze”. So far, it has taken him three months to work on it. He says he has another two months or so ahead before it’s finished. The plays he tries out for are the kind of thing he likes to do to express his feelings. The director, Mr. Vincent Williams has a fall and spring play. Last year, in the fall play called The Miser, Wayne played the role of Master Simon. In the spring production Teahouse of the August Moon he had the role of the Ancient Man. In the middle of the school year is a theatrical production called the Rabe Plays for which students write plays and direct them. Wayne played Gramps in a Rabe Play called The Hobo in 1981 and recently received another part in the 1982 Rabe Plays. He says acting and being involved in the productions is a great way to meet new friends and do something fun.
As Wayne finishes up his second year of high school he has begun to look toward college. He plans on majoring in computer science so he can use the skills he already knows from working with the computer at school. He’s familiar with the background of other computers and believes the future will relate heavily to computers and there will be a great demand for people qualified in this field.
In addition to computers, Wayne also writes plays and reads a lot of science-fiction and mystery books. Along with such books, Wayne likes to write short stories similar to the books. Another interest Wayne has developed is with detective things. He has a collection of all 79 Hardy Boys books plus a detective kit – in case any mysteries need solving! One more outgrowth of Wayne’s reading is his hobby of monsters and strange phenomenon such as Bigfoot, the Loch Ness Monster, the Abominable Snowman, Pyramids, Noah’s Ark, U.F.O.s and the Bermuda Triangle. Wayne strongly believes in each phenomenon and has done research for over eight years on each topic; developing a file folder a half-inch thick for nearly every subject. He hopes that when he is old enough, he can delve more deeply into some of the phenomena.
Though Wayne still has the disease, he doesn’t let much get him down. Wayne toys with the possibility of playing major league baseball in some way, or of coaching the Miami Dolphins under the leadership of Don Shula, a man Wayne deeply respects. Who knows? Given Wayne’s optimism and drive, he may just do either or both! He intends to follow the dreams and goals he has. Though to some such goals and dreams seem far-fetched, he will surely succeed. And I should know, because I am Wayne Tallman.
This is a story Wayne Tallman wrote while attending Hempstead High School about his challenges with E.B.