I Live With Muscular Dystrophy
THE movie over, I slowly turned in my seat and unsteadily rose to a standing position. Trying to balance on stiff legs, I took the first step. As I moved shakily into the aisle, my knees suddenly buckled, and I tumbled to the floor. It would take every ounce of determination I possessed to get back up. How relieved I was to see the tall, blond stranger with a friendly smile approaching. “May I be of help?” he asked. This chance meeting in Helena, Montana, United States, early in 1978, was the start of a new way of life for me.
You may be wondering, though, why I fell down. It all began even before I was born. Without knowing it, my mother was carrying a defective gene that she passed on to me. So on January 16, 1948, I was born with a muscular disease.
My mother first noticed that something was wrong when I was about six years of age. I started to trip over my own feet and I fell down frequently. At that time, even the doctors were puzzled. They fitted me with braces to correct my feet in hopes that I would outgrow it. However, this treatment did not work. My feet bent the braces out of shape and rendered them useless. So surgery was successfully performed to straighten both feet, but it did not cure the disease. After a total of seven years of braces, surgery, and lonely trips to a hospital over two hundred miles [300 km] away, the doctors finally released me at the age of 13. They told my mother and me that I had muscular dystrophy, a progressive muscle-wasting disease, and that I would be in a wheelchair by the time I was 20. My reaction to this prediction was: ‘That’s what you think! I will show you!’
When I was five years old, my father died in an airplane crash. My mother was left with six children, ranging in age from one to 12. She worked very hard to care for us, but it was not possible for her to give a lot of individual attention to each of us. Therefore, I was expected to do all I could for myself.
Still, I persevered in trying to enjoy life and find some meaning in it, even though I developed great shyness during my growing years, probably because of those conspicuous leg braces I had to wear. So I decided to depend only on myself. Since I found it very difficult to talk with people, friends were few. In fact, I had no true friends until my senior year in school, when I met Wayne, a black-haired, muscular teenager. He was afflicted with epilepsy, so we empathized with each other’s plight and communicated fairly well. We became the best of friends.
Seeking Comfort Through Religion
Wayne introduced me to his religion, Christian Science. What attracted me most was the healing aspect. I was distressed by my physical limitations and desperate to find comfort and relief. So for the next two years, while attending college, I investigated this religion and found it to my liking and became fully involved in it.
After ten years of active membership, I was on the board of directors of the local branch and superintendent of the Sunday school. Yet, I had grown unhappy and disillusioned, since the healing I had expected did not take place. One of my dear friends was kidnapped and killed. And Wayne died from epileptic seizures. Also, I did not become a better person, more like Christ, as I had hoped.
I felt so depressed that I actually planned to kill myself. I believed this would end all my pain and suffering, but I kept thinking in the back of my mind: ‘There has to be a purpose for our being here. God must have some reason for all he has created. I need to find out what it is before I die.’
Desire for Life Renewed
While wondering about God and his purpose in creating man on the earth, I did not know where I fitted in. My mother raised us in the Catholic faith and regularly took us to church, where I learned to have great regard for the Bible, although we were not encouraged to read it. As a Christian Scientist, I read the Bible through several times and studied it intensively. However, the understanding of its message and the hope and comfort it contains eluded me. Where could the truth be found?
John, the tall, blond stranger who had lifted me off the movie theater’s floor, had the answer to my question. He was one of Jehovah’s Witnesses, although at first I did not know it. After he had helped me get up, my sister and I invited John and his wife, Alice, to have refreshments with us at a coffee shop. During our conversation, I thought that perhaps this man could replace the friends I had lost. I sensed new hope in my heart.
Some time later I was invited to his house for dinner, and I noticed that this family used the name Jehovah in their prayers. God’s name sounded good to me; my curiosity about their belief was aroused!
The next time we got together, we discussed the Bible. John, who was fast becoming a friend, cleared up my questions and false reasonings with the Scriptures. I was favorably impressed and greatly encouraged by my newfound hope based on the Bible’s promises of a paradise earth free of all sickness and sorrow. (Revelation 21:1-5) Further discussions often lasted into the wee hours of the morning. How good I was beginning to feel! I devoured this spiritual food. Now that I was being spiritually renewed, I wanted all the refreshment I could get.
That fall I began regularly attending meetings at the Kingdom Hall of Jehovah’s Witnesses. The friendly, encouraging association with the congregation members just warmed my heart. By the spring of 1979, I decided to dedicate my life to Jehovah God. Then, on June 23, with six brothers helping me get into a pool, I was baptized.
Many blessings have come to me since my baptism. One blessing has been my dear wife, Pam. I met her at a friend’s house, fell in love with her, and we were married in March 1981. We have settled in the city of Missoula, Montana. Pam and my four stepchildren have brought me much joy and still give me a great deal of help.
Coping With Realities
The amount of time it takes me to accomplish ordinary tasks is now the most frustrating thing I have to deal with, especially on days when we do not attend Christian meetings. On these days I take care of myself entirely so that Pam can do other things. This means that it is almost time for lunch when I have completed my stretching exercises, washing, shaving, and dressing. I try to overcome this frustration by thinking of all this strenuous activity as my job, since it is definitely hard work! I might add here that the stretching exercises I do are to keep the muscles and tendons from drawing up. This helps to keep the circulation working well and prevents much pain and possible surgery on the tendons. It also keeps the muscles toned.
Occasionally, I still get depressed. When this happens, I pray to Jehovah, and he renews my determination to continue doing what I can do and not dwell on what I cannot do. By preparing for and accepting these limitations, I can better cope with harsh realities.
Before I had to quit walking, I bought a used wheelchair in preparation for that eventuality. Consequently, I was mentally and physically equipped when I needed the wheelchair in the spring of 1980, at the age of 32—not 20 as the doctors had predicted.
A Sense of Humor Helps
A common problem I have because of being confined to a wheelchair is getting in and out of bathrooms. The homes I visit and the motels we stay in when traveling usually are not convenient for me. Even the rooms built specifically for wheelchair accessibility are difficult to enter because I have no upper body strength as some people in wheelchairs have.
In one motel room, I could not get through the bathroom door, so I transferred from my wheelchair to a straight-backed chair. When I was finished and back in my wheelchair, Pam tried to tip my chair back and turn it at the same time. She thus wedged the chair, with me on it, between the bed and the bathroom doorway. In order to get me out of this predicament, Pam had to pull me out of the chair and onto the bed and then fold up the chair to release it. While she was doing this, we both had a good laugh at the comical scene we must have presented.
A sense of humor helped one time when I was attempting to use my slide board to transfer from the car to my wheelchair. As my friend pulled, the board slid off the car seat, and I was dumped in the gutter. My wife was in the driver’s seat, and when she saw me falling, she jumped out of the car and ran to the other side to find me singing, “Welcome to My World.” We all had a hearty laugh.
Appreciating Help From Others
Cheerfully and gratefully accepting help from family members and friends can alleviate much frustration in difficult circumstances. I have had to cultivate this spirit of appreciation over the years, for I have at times overlooked what others have done for me. Because I needed help so frequently, it was easy to take it for granted. But this was not good for me, nor encouraging to those who rendered aid. Putting forth a conscious effort to thank those who assist me, even for the smallest things, has made me happier and has made it easier for others to deal with me.
Not only is muscular dystrophy difficult for me but it is also hard for my wife and stepchildren, two of whom remain at home. Besides the problems of adjustment that stepfamilies often have, we contend with the complication of this muscle disease. The children and Pam often have to wait for me. For example, I have to start getting ready for the Sunday morning meetings three to four hours in advance. Then, we cannot just hop in the car and leave. I need help putting on my coat, getting into the van, buckling my seat belt, and so forth. This takes time and much patience on the part of my family.
They also have to sacrifice some of their own time and activities to help me accomplish some of mine, like getting things down from the cupboards and upper shelves and lifting things for me. A number of times, I have ended up on the floor or on the ground due to one mishap or another, and Pam has had to lift my six-foot-two-inch [1.9 m], 165-pound [75 kg] frame from there to my wheelchair. Only by reliance on God have we found the strength and determination to carry on!
My friends in the congregation have gone out of their way to help me to attend meetings and enjoy recreation and social gatherings. This willingness is most encouraging to me. As one friend said, with a smile, “The squeaky wheel gets the grease.” So when faced with a problem, after doing all I can for myself, I let out a “squeak,” and sure enough, family members or friends come to my aid.
How You Can Assist
Do you wonder how you might assist someone in a wheelchair? I would suggest that the first thing you need to do is ask for instructions from the person in the wheelchair. Never push the chair before the person in it is ready. Please do not be offended if we feel we need to accomplish a task unassisted, and never feel obligated to help if you have personal limitations that would make it difficult for you. However, I always greatly appreciate it when someone offers to pick something up for me or hang up my coat or move obstacles out of my way. Finally, feel free to talk to us, as we have feelings, desires, and interests similar to yours, in spite of our handicaps.
Muscular dystrophy and similar diseases present many challenges. My experience has not been as difficult as that of some other people, but I am sure that everyone can benefit from knowing God’s will for the earth and its inhabitants. Having a hope for a better life in the future by means of God’s Kingdom can sustain all such people, including those with muscular dystrophy. (2 Corinthians 4:16-18)—As told by Dale T. Dillon.
[Picture on page 20]
Dale, his wife, Pam, and two of her children, Pamela and Richard