John’s Story
As told to Carol Fraser
This is the true life story of an amazing man who through his perseverance and strong will has conquered serious health issues. He has created a life which includes a generous, caring side epitomized by his clown personality, “JJ. The Happy Wanderer”. This amazing person is John R. Leadbetter and along with his better half, Barb “Button’s and Bows” has been making people smile and laugh for many years.
John was born November 30, 1937 in Truro, Nova Scotia. He was a very sickly baby, within two months of his birth was admitted to The Halifax Children’s Hospital(presently the I.W.K. Hospital). John was not expected to live and he spent the next five years in a crib at the hospital. He called the nurses “mother” because at that time his Mother lived so far away. Because during the War years, 1939-1945, there were severe restrictions on the use of gasoline so his Mother’s visits to the hospital were infrequent.
He was fed a diet of bananas having been diagnosed with sprue. In the 1940’s celiac disease was not well understood. The doctors knew the body was allergic to wheat but didn’t realize that rye, barley and oats also needed to be removed from the celiac diet. Patients would cook regular bread and cook it till it was overdone and almost burnt. They would then eat it as safe as they thought this overcooking was getting rid of the wheat allergy.
During his first five years in hospital, the only treatment was a banana diet; 3 for breakfast, 3 for dinner and 3 for supper seven days a week. He failed to thrive and experienced developmental delay, bloating and a protruding large abdomen. Because no one expected him to live, he was never taken out of his crib, never learned to walk, and, never had a haircut. When discharged from hospital in 1942 at 5 years of age he continued on the banana diet. These bananas provided a source of potassium as well as nutrition. It was Wartime and bananas were not readily available in Canada. His doctor was able to obtain them through Health Canada. The bananas were sent weekly on Friday’s in a Black Box. This black cardboard box tied with twine contained his quota of 63 bananas for one week as 9 bananas were required daily. The box from the previous week would be folded up to save for the War effort. These shipments continued till the end of World War II in 1945.
Although 5 years old John, was so weak when he was discharged from hospital that he had to be pulled around for 3 years in a little red wagon. John was able to learn to walk when he was 6 years old and started school when he was 7. John’s family moved from New Glasgow to Truro, in 1946. Dr. Ross, his family doctor, prescribed vitamin B-12 and John received Vitamin B-12 injections each day after school. As a child John would eat ice cream cones and throw away the ice cream as it contained traces of arsenic.
Children with untreated celiac disease experience malnutrition and secondary deficiency disease. There are fluctuations of weight with a protruding abdomen due to the relaxed abdominal musculature. Tooth eruption is often delayed and children may show increasing irritability and other changes in behavior. Children with celiac disease are often withdrawn and do not enter into play with other children. Their play is likely to be passive since they find active play exhausting. Children can end up with brittle teeth due to enamel breakdown and remain short in stature because of untreated celiac disease. Nerve and brain damage may also occur, as well as an inability to maintain posture. With his celiac disease not being treated properly, John suffered all these symptoms.
At 12 years of age while attending Boy Scout Camp, John contracted Polio and was rushed to Halifax by ambulance. He was put in an Iron Lung for 24 hours. John was then treated for the polio with camel hair treatment at Polio Clinic at the V.G. Hospital in Halifax. He did not inform the staff that he was on a special diet. John recovered sufficiently to be able to play basketball in a wheelchair. He was eventually able to return home but suffered with a curvature of his spine and one leg was one inch shorter than the other. Because of his untreated celiac disease, John also has vision problems, dyslexia and mini seizures.
Teachers and other adults in John’s life felt that he was un-teachable and he had to teach himself to read and to drive. He had to compensate in order to learn many skills that healthy people take for granted.
At the age of 17, John joined the Air Force and was sent for his basic training to St. Jean, Quebec. His first drill sergeant nicknamed him “Lucy the Pregnant Duck”, a name that would stick with him all throughout his military career. John at this time had a very stooped posture and large protruding abdomen. During his training he would participate in all training sessions but once off duty, he spent the rest of the time in bed trying to recover for the next day. His posture improved because of the discipline and training and he gained 2 inches in height. He went from 5 ft. 2 in. to 5 ft. 4 in. His problem with dyslexia was advantageous in his military career. He was naturally very adept at printing backwards, compared to his fellow servicemen; this ability being a important part of their work. John remained in the military from 1955 to 1963.
John and his wife, Barb, were married in 1974. Barb had received books on celiac disease from John’s mother and she educated herself on celiac disease. John was not following his diet and in 1990, while on a trip to Halifax, with Barb, he became violently ill. Four doctors examined him but could not come to a diagnosis. He returned to Moncton and a friend suggested that he see Dr. Frank Schweiger, a gastroenterologist, so he went to his office early the next morning. He was told the doctor could not help him without a referral, however John is very persistent and unconventional when pursuing a goal. He waited all morning through lunchtime and finally late in the afternoon was able to see Dr. Schweiger who asked him “What makes you think you have celiac disease?”
After hearing John’s story Dr. Schweiger knew he needed a biopsy. Dr. Schweiger was fairly new to the Moncton area but already knew that many patients diagnosed with celiac need a support group. He made an agreement with John to do a biopsy if John would start up a local support group in Moncton. John received his biopsy one week later. The first support group meeting that would lead to the formation of the Moncton Chapter was held on February 20, 1990 at Peoples Park Tower, Moncton, N.B. The Chapter was registered with the Canadian Celiac Association on June 19, 1990. John was President and they started with 23 original members.
Because of the assistance he received with his medical condition during his childhood, John wanted to help others and give back. He joined the Masons in 1980 and wanted to help children through the Shriners unit of the Masons. In 1984 he joined the Truro Lodge and their clown unit. Because of the difficulties he experienced he was nominated to be the Ambassador for the Burn Unit of the Shriners and he traveled extensively pulling a sneaker during parades. John’s clowning career has extended to providing fun and laughter for children, seniors and hospital patients. John has plans to continue with his clowning for at least another 2 years, which will complete 25 years of service to his fellowman.
When John was re-diagnosed in 1990, it was still hard for celiacs to purchase gluten free food. He used to pay $10 for a loaf of bread and had a trucker friend who would bring back 10 loaves at a time in a cooler from Toronto. John was acquainted with the owner of Dewares’ Supermarket and after explaining his difficulties, Dewares was the first Supermarket to bring in gluten free bread. Other celiacs soon heard it was available and the volume of customers quickly increased. Other Supermarkets came on board. If someone is diagnosed these days, they are fortunate to have more gluten free food choices.
John is presently troubled with post polio syndrome effecting his right eye, arm and leg. His celiac disease is now well controlled as he follows a strict gluten free diet. His friends in the Masons call him “ the bag man” as he never fails to carry his gluten free meal when he travels with his fellow Masons to meetings around the Maritimes.
John has had to work abundantly harder than many others to achieve his life goals but as a result of this journey it has produced a strong, compassionate, friendly man and loyal friend. His sense of humor is very evident when first meeting John.
Johns only and wonderful advice when winding up our interview was
“ Under No Circumstances, Don’t Give Up “
Written by: Carol Fraser, Moncton CCA Member
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