Bionic Preacher: Rising Above Muscular Dystrophy

By Douglas Mehling and Rita Earhart

When Douglas Mehling came into the world in 1982, his dad and mom joined all other proud parents who hold high hopes and aspirations for their children. Would he grow up to cure cancer or be president some day? It wasn’t until he was four that they learned how his life would be overshadowed by Duchenne Muscular Dystrophy. What followed was a lifetime filled with medical emergencies, innumerable challenges, humorous experiences, and countless victories. Douglas adopted the life of an inquisitive, tenacious Christian young man who never gave up on his dreams even with the relentless, progressive onslaught of this crippling disease. Follow him through high school, college, the ministry and graduate school as he accomplishes what many thought impossible. His prevailing faith in God was the anchor holding him secure through each difficult moment of his thirty-three years of life.

• Language: English
• Publisher: Douglas Mehling
• Release date: Dec 26, 2016
• ISBN: 9781370845071

Book preview

First Years

by Mom

For you created my inmost being; you knit me together in my mother’s womb.

Psalms 139:13

When Douglas began writing his life story, he asked me to describe his early years. I had often thought of writing a book about our experience of living with a serious neuromuscular disease and was excited that he decided to do exactly that. When we first received the diagnosis of muscular dystrophy, I was eager to learn all I could to prepare for the years ahead. I didn’t know of any books at the time that shared the first-hand experiences of other parents and children in such a situation. That would have been invaluable to me. Our prayer and hope today is that our story will benefit and encourage other families.

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On a cold New Year’s Eve in 1982 at St. Paul Hospital in Dallas, Texas, we celebrated the birth of a healthy baby boy, my first and only child. I was in absolute bliss as a first-time mother at 30 years of age. We named him Douglas after his father. A new world had opened to me, and I would spend hours holding him, nursing him, and taking him everywhere. Most parents understand what I’m saying and know how in love you are with that small, helpless life. I determined to be the best mother I could possibly be.

While joy filled me during those days, they also brought a lot of change and adjustment. The stress created by a newborn was palpable in our home, especially since Douglas frequently cried many hours a day, particularly at night when he would be inconsolable. He had digestive issues causing considerable discomfort, and I spent many nights in the rocking chair with him, which seemed to help. His condition got better after the first few months, but the larger disharmony in our home life did not improve.

The sad day came when my 10-year marriage to Douglas’ dad ended and I became a single mom with a 9-month-old baby. For 10 long years my husband and I had struggled with our differences, and having a baby increased the stress and revealed even more of our incompatibility. Our ideas on most things were different, and child rearing was no exception. Even so, I was totally unprepared and felt that the bottom had fallen out from my world. My sense of loss intensified as I realized that this decision would deeply affect the life of my child.

It was a difficult time, as I was overwhelmed with so many changes, and sad to lose our dream of being a family. I returned to working full-time, made plans to sell our home, and began packing for our move. Since I’d never lived on my own, I now had to learn to be independent. Having the baby with me was truly a blessing as it kept me busy and helped me to recover. A wonderful extended family gave me much support and comfort.

My life became happier as things began to normalize, and every day I enjoyed watching the development of my beautiful child. Because I wanted to raise him in a home with a yard, we moved to a small house in an older neighborhood with sidewalks for the stroller. Although working full-time, I was able to find a nice family to care for Douglas during the day. My greatest joy was rushing home after work to be with my son.

Douglas started walking at 14 months, which is not late for boys I learned, and he seemed normal and healthy in every way. One day I watched him playing at my parents’ house when he about 2. Noticing that something seemed abnormal about the way he was walking, I asked my mother to examine his feet. She agreed that his heels were pointing outward a bit. I took Douglas to visit several different doctors, whose only diagnosis was a bad case of flat footedness. That sounded reasonable since my grandfather had flat feet, but I had lingering fears that something more might be going on.

One doctor finally recommended a well-respected podiatrist who might know why Douglas’ feet didn’t look normal. By this time he had a slight waddle to his walk. This doctor concluded that my son, who was now 4 years old, had very tight heel cords that prevented his feet from flexing properly. At the same time I think he wondered if there might be a bigger problem since he asked me the strangest questions, such as Does he use the furniture to help stand up or his body for leverage? His questions bothered me, and I responded quite confidently that I’d observed nothing unusual. Don’t all children grab furniture to stand at times? I really didn’t understand what he was getting at. Certainly there couldn’t be anything seriously wrong. The physician backed off from his line of questions and recommended that Douglas have surgery to lengthen his Achilles heel tendons, which would require him to be in extensive leg casts for six weeks. Naturally I wasn’t happy as I thought about how hard it would be for poor Douglas. In retrospect, such simplistic thinking seems a bit foolish. How great it would have been if a surgery could have fixed all his problems. It was just another example of how relative things can be. (As a side note, I later called this physician and told him about my son’s eventual diagnosis, and that he had indeed been right to be suspicious of a bigger problem.)

Before proceeding with the tendon release surgery, I learned of another pediatric orthopedic physician. A physician friend of ours was adamant that we consult with this doctor before having the recommended operation. That visit was very different from the previous five doctors. Immediately the new physician noticed that when Douglas got up from the floor or a chair, he would push his hand against his upper leg to get leverage for standing. Why hadn’t I noticed that before? Later I learned that such behavior is called Gowers Sign, a fairly common feature in young boys with Duchenne Muscular Dystrophy. Gently, the doctor said there was definitely no need for the tendon release surgery. Then he ordered some lab tests. He said that a specialized neurologist should see my son at Scottish Rite Children’s Hospital for follow-up and final diagnosis. He didn’t want to give his own diagnostic opinion, because he wasn’t a neurologist. Really wanting to know what he was thinking, I pushed him to give me more details and his supposed diagnosis. It puzzled me that the lab tests he ordered were the same ones that had been abnormal for me when I was a teenager. To this day I remember the kind but sad way he looked at me when I mentioned that. With that information, he finally relented and told me of his concern that it could be muscular dystrophy and that typically the mother is a carrier of the disorder. Again he stated that a neurologist would need to make that determination.

I surely didn’t comprehend the enormity of such a potential diagnosis. Since I didn’t grasp the implications of what he said, I wasn’t particularly upset. While I sensed that it must be somewhat serious, I was fairly naïve about the disease. My memory flashed back to when I was a teenager and my parents thought that I might have a form of muscular dystrophy because of my elevated muscle enzymes, something we had learned by accident when I had a serious kidney infection. Since I seemed to be otherwise healthy, the doctor believed that the lab test indicated possible kidney damage caused by a previously untreated strep throat. Medical science didn’t know much about muscular dystrophy in the 1960s, so we just considered it a mystery. Years later my mother said that she was glad we didn’t know that I was a carrier of the disease, since I might not have had Douglas.

As we left the doctor’s office that day, my mind immediately went into planning mode. Used to solving problems, I decided that we would just get this situation under control. I wanted answers now, and immediately decided to get the required lab tests done by my uncle, who worked at a nearby medical laboratory. I can still see the small waiting room where Douglas and I sat and waited for the results. Nervous and restless, I wondered why it was taking so long to complete the test. Finally my uncle appeared in the doorway and told me that because the results were so high their diagnostic machine was unable to calculate the numbers, and they had to process the test manually. A normal CPK muscle enzyme test should be less than a lab value of 200 and Douglas’ result was close to 30,000. The news set me back as I knew it was not a good sign. Once I received the abnormal results for Douglas’ laboratory test, I began to realize that his condition was indeed serious. My problem-solving techniques would not help me. Until then I had considered Douglas a healthy 4-year-old boy. Suddenly I realized how quickly everything can change in life.

It would take a few weeks to get my son into the Scottish Rite Hospital for complete testing. Desperately wanting more information, I went to the medical school library at UT Southwestern in Dallas to check out a few books about muscular dystrophy. I took them home, and after Douglas had gone to his dad’s that Friday evening, I began reading. I hadn’t read very long before I felt overwhelmed. Darting outside, I began running down the road in absolute panic and grief, crying, screaming hysterically, begging God to change it. The images, pictures, and prognosis in the books had been shattering. All alone I had discovered this disease and had to agree with the symptoms listed in the books. Fortunately I was able to cry out to God to rescue me from total despair. Finally, somehow my exhaustion caused me to sleep and forget for a while. Putting the books aside, I just prayed and tried to keep busy, hoping that it was all a bad dream.

Finally the day arrived for our appointment with Dr. Jay Cook, the expert neurologist at Scottish Rite Hospital for neuromuscular diseases. After seeing Douglas and asking countless questions, he felt fairly certain that my son did have Duchenne muscular dystrophy, but further testing would be needed. My heart dropped, but I still had hope that maybe it was a less serious form of the muscle disease.

Douglas was scheduled for a muscle biopsy in a week. He was not upset or worried when I explained about the procedure. We arrived at the hospital the night before to prepare for the early morning biopsy. When they brought us to the pre-surgical area that next morning, the staff allowed me to hold Douglas in my arms while they gave him a shot to put him to sleep. He was out and limp so instantly that it really frightened me, and I was awash in tears. Sobbing, I stumbled out the door into the arms of my faithful father. Having no idea that he would be there, it was a joy to see his kind face as he held me through my tears.

The surgery went quickly but it would take a while to heal such a deep muscle biopsy. Although he was able to go home the next day, time moved slowly as we waited for the pathology report. I remember being at a McDonald’s restaurant with Douglas and his dad, Doug, the next week, and seeing my precious, blue-eyed child looking strong and happy as he enjoyed the play area like any other kid. I commented to his father that surely Douglas had the less-severe form of the disease and would not need a wheelchair until much later in adult life.

After about two weeks, I arrived at the clinic to receive the biopsy results. Douglas was at pre-school that day as requested by the doctor. His father and stepmother, Doug and Dana, joined me to hear the report, and I felt the tension as we entered the room where the doctor waited. Slides had been prepared with the muscle tissue and were set up for viewing on two microscopes. Taking a seat, I felt numb as I stared into the scope. The first thing I noticed was that all throughout the slide were black dots. The doctor explained that they were broken muscle fibers that would not repair or be replaced. That was direct evidence of Duchenne muscular dystrophy, and there was no need to look any further.

Everything seemed in a blur as I stumbled out of the building. Doug and Dana hugged me and said they would always be there to support us through the future. Immediately I went to see my parents, who were waiting at their office in Dallas to receive the news. We shed many tears that afternoon and many more would follow through the years. In church just a few weeks later, my mom and I became emotional and couldn’t quit crying during the service. The pain was severe, and although I wondered how I would ever survive, I also knew life would go on. I had a wonderful child to care for, and God would be with us. Always I had felt that there was a special purpose for me in this world and now I knew what it was.

The clinic visits to see the neurologist were frequent, and the next step for Douglas was to be in a research protocol. That involved taking high-dose steroids (not the kind used for body building) with the hope that it would allow him to walk and live longer. Dr. Cook said that getting through high school would be a big milestone, and that maybe a program of steroids could offer a huge benefit. The thought that my son’s life might be that short was a blow to my heart.

Beginning the steroid therapy required that Douglas enter the hospital during the first week of the program. The doctor wanted to monitor his adjustment and watch for possible side effects. I took the week off from work and stayed with Douglas at Scottish Rite Hospital in a large room with seven other children and their parents. It was a new world we had entered, one that few people ever know about. We met children with various problems. I remember one boy with a cast covering his entire body up to his armpits. He wheeled himself around the hospital lying on his stomach on a gurney, and seemed in really good spirits. Through the next 14 years we would see many more children with various maladies and deformities. We are very grateful to the Scottish Rite medical system. It is a beautiful hospital for children, providing its services free of charge, which always amazed me.

In our hospital room the TV was constantly on, and before long we were stir crazy with several long days looming ahead. Fortunately the hospital had a large tree-covered playground outside with many fun activities for kids. We went out every day to enjoy the playground and get away from all the noise in our room. Since Douglas was not sick and as yet had no negative side effects from the steroids, the playground was a really enjoyable place to be. No one asked us where we were going, but when I mentioned it to one of the nurses, she frowned and firmly told us that we could not go to the park because of liability issues. Really? No wonder we had the playground to ourselves. How strange to have an awesome playground that the kids couldn’t use. Telling the nurse that we had to go outside or go crazy, we continued to visit the playground. It was encouraging to see the improvement in Douglas’ strength and energy as the days passed. That gave me some hope that the steroids were making a difference and would improve his life.

It was a period of adjustment for me as I sat under a tree in that playground, watching my happy child run and play, and feeling heartsick for what lay ahead. The future was uncertain as I tried to understand our situation and pleaded with God to guide our lives.

After we returned home from the hospital our life became more normal again. We had the pills to remember every other day and adjustments to Douglas’ diet, such as reducing the amount of sugar and keeping him on a low fat diet. Early on, the neurologist had strongly encouraged me to keep my son from getting overweight. The sedentary life in a wheelchair combined with the American diet can take its toll. At this point the concern was that he stay slim and not develop the round face look that can happen with steroid use. His appetite did truly increase, and one day at daycare after finishing his sack lunch he watched his teacher eating a piece of chicken. Seeing his longing look, she shared another piece with him. They must have wondered why I was starving him. After that he got bigger portions of healthy foods. It was hard at birthday parties for him to avoid the high fat snacks and cake, but he was willing to stick with his diet most of the time.

Douglas had monthly appointments at the neurology clinic. The doctor would always ask him to run down the hall while his speed was noted with a timer. His improvement in speed each time was remarkable. Dr. Cook asked us to participate in a special conference with physicians attending from around the country. Douglas and I were on stage while the doctors asked many questions about the illness and our experience with steroid therapy. We felt as if we were part of something important to the future research of the disease.

Steroids can have many side effects besides weight gain, and one day after about a year of steroid use, Douglas had his quarterly eye exam. During it, we learned that he had developed small cataracts in both eyes. The news devastated me, knowing how precious good vision is, especially since reading was the main thing he would be able to do for his whole life. The physicians did not recommend the removal of the cataracts as they were still small and his vision was normal. In spite of that positive information, I was concerned, thinking how we’d wanted to help him with steroids only to have such a negative outcome. I told the neurologist that I wanted to taper Douglas off the steroids immediately. Although others urged me not to stop the steroid therapy since it might really offer some long-term benefit, I firmly believed that was the right decision. For several days I was distraught, unable to sleep. Finally one day after praying and pleading with God to help me and to save Douglas’ vision, I finally relaxed and was able to go to sleep for a while. I awoke with the verse in my mind that says be still and know that I am God. It truly felt like an answer to prayer, and I was able to be at peace and leave it in God’s hands after that. As would be with many other situations in the future, my worries were generally unwarranted. The cataracts didn’t get worse and his vision remained at 20/20. Of course I give God the glory for that.

Douglas’ childhood years were filled with normal life activities, occasionally interrupted by medical issues and long afternoons at clinic visits that seemed only to measure and document his loss of strength. We tried to live each day to the fullest and did as many fun things as we could, knowing that one day his ability to walk would cease. Trips to places of interest included Six Flags, Disney World, Florida beaches, the Kennedy Space Center, zoos, and whatever we could think of to do while he could walk. Six Flags was especially great since he would always get to go to the front of the queue because of his wheelchair, saving many hours of waiting in line. His life was really good in most ways during those first six years. We have always believed that God is in charge and things will work out according to His will. Looking back through the years we can clearly see His hand in our life.

Rita, with Douglas, 5 years old

The following chapters are Douglas’ personal story detailing his challenges, adventures, and successes, throughout a life of courage and hope.

Chapter 2

Family

Children’s children are a crown to the aged, and parents are the pride of their children.

Proverbs 17:6

Throughout my life, family has been one of the most important words in my vocabulary. When I entered this world in 1982, I was greeted not only by a pair of excited parents, but also two great-grandparents, four grandparents, and countless other family members. My dad wanted me to be named after him, which my mom agreed to, but on the condition that I be called Douglas and not Doug. Although blessed with a wonderful family, things were about to become a little more complicated and challenging. Before I reached my first birthday, my parents’ marriage came to an end. Life would truly be different as a result.

The divorce of my parents was certainly an unfortunate episode of my life, and yet there was a blessing in the timing of that parting of ways. I was too young to comprehend the change in my family structure. When I reached the age when I could understand such realities as divorce, I also recognized the strange blessing of that fact. I could see that their divorce was inevitable, and that it was better to have occurred sooner rather than later. That spared me a great deal of pain since I was too young to know what was going on. However, that didn’t mean it was a completely painless reality. Like every child who has experienced divorce, it did leave some emotional scars that have never quite healed. I would have preferred a different outcome, but life is full of desires that simply aren’t possible.

After my parents’ divorce, I lived with my mother. Most children, especially boys, have a close bond with their mothers. That was especially true for Mom and I, and our relationship probably became even stronger in the wake of the divorce. She was the type of woman who found her greatest joy in being a mother. All she wanted to do was to spend time with me. But her new life as a single parent meant that she would have to work. I imagine her job was often difficult, but she knew that at the end of the day she could come home, forget about work, and just focus on being with me. I am truly grateful to have such an amazing and dedicated mother. As the rest of my story unfolds, you will no doubt see the important role she has played in my life.

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Even though I lived with my mother after the divorce, my dad was deeply committed to being an involved father. I suppose that in today’s world that makes him a statistical anomaly. He not only spent a lot of time with me, but he also consistently provided financial support, making sure I had everything I needed. During the first few years of my childhood, Dad lived near us, so that I was able to see him quite often. When I was only about 18 months old, he took me to a family reunion in Washington State. It was just the two of us on an adventure and my first airplane trip, the first of many trips we would enjoy together.

When I was about 4 years old, Dad decided to move to the city of Tyler, about two hours away. He wanted to pursue his dream of starting his own home healthcare business, and he’d found what appeared to be the perfect location. I would get to see him every three weeks. He would drive all the way to Mom’s house on a Friday afternoon, and then spend another two hours taking me to his house. And he would do the reverse on Sunday. Always excited to see him, I would constantly ask him questions during the trip to his house. They mostly involved cars and airplanes and other technical things that Mom couldn’t answer. After waiting three weeks I would have saved up a lot of questions. Because Dad always seemed to have a satisfying answer to my questions, I truly thought he was the smartest person alive. I was also really proud to know that my father was a successful businessman.

I had a lot of fun with him during my visits, and I also had a good relationship with my new stepmother, Dana. A kind and caring person, she provided a mothering presence in the absence of my own mother. It also helped that she was a nurse and took quite an interest in my care in later years after my diagnosis. She really wanted a child of her own, but was unable for many years to have any, so I was like a son to her.

While I greatly enjoyed weekends with my dad and stepmother, it was never long enough. The two-hour trip back home was boring, and there was nothing particularly exciting about the destination. I’d be fairly quiet and subdued and probably didn’t ask many questions. Although I certainly did miss Mom and was happy to see her, I’d only been away from her for about 48 hours. I felt sad because I wouldn’t get to see Dad again for three weeks, which seemed like an eternity to a kid my age. It was also difficult because things were different at my dad’s house, and I’d have to slowly readjust to my normal life back at Mom’s house. As a result, I would continue to feel subdued during the rest of the afternoon and evening and wouldn’t feel normal again until the next morning. Even though I couldn’t exactly verbalize what I felt, I had an innate sense that it wasn’t God’s ideal plan. That it wasn’t how He intended families to be.

As I mentioned earlier, all of my grandparents were deeply involved in my life throughout my childhood. I had a particularly close relationship with my maternal ones. During the first few years after my parent’s divorce, Mom and I would spend nearly every weekend at their house. They lived on a beautiful and secluded piece of land in the country, and it became my second home. It was such a haven for us that Mom considered buying a mobile home and living next door to my grandparents on their land. Even though they enjoyed us staying with them so often, they didn’t think it was a good idea. Because Mom had a good job at a hospital in Dallas, they decided it was extremely important for her to stay there. They believed that it would greatly affect the opportunities we would have in life, and Mom knew that they were right. My grandparents had great wisdom about life and they were always just a phone call away. My grandmother was a nurse, and if Mom or I