Sustained by My Faith—Living With ALS
AS TOLD BY JASON STUART
“I’m sorry, Mr. Stuart. You have amyotrophic lateral sclerosis, or ALS, also known as Lou Gehrig’s disease.”* The doctor then gave me the dismal prognosis: Soon I would no longer be able to move or speak, and the disease would eventually take my life. “How much time do I have?” I asked. “Probably three to five years,” he replied. I was just 20 years old. Yet, despite the sad news, I could not help but feel blessed in many ways. Let me explain.
I WAS born on March 2, 1978, in Redwood City, California, U.S.A., the third of four children born to Jim and Kathy Stuart. My parents had a strong love for God, and they instilled deep respect for spiritual values in me and my siblings—Matthew, Jenifer, and Johnathan.
As far back as I can recall, sharing in the door-to-door ministry, studying the Bible, and attending Christian meetings were a regular part of our family routine. That spiritual upbringing helped me to build strong faith in Jehovah God. Little did I know how my faith would be put to the test.
A Boyhood Dream Comes True
In 1985 my father took our family to New York to visit Brooklyn Bethel, the world headquarters of Jehovah’s Witnesses. Although I was just seven years old, I felt that there was something special about Bethel. Everyone seemed to find joy in his work. I thought, ‘When I grow up, I’m going to come to Bethel and help make Bibles for Jehovah.’
On October 18, 1992, I symbolized my dedication to Jehovah by water baptism. A few years later, when I was 17, my father took me to visit Bethel again. Being older, I was able to appreciate much more the importance of the work that is done there. I came home more determined than ever to reach my goal of going to Bethel.
In September 1996, I began serving as a regular pioneer, or full-time evangelizer. To keep my mind on track, I immersed myself in spiritual things. I increased my daily Bible reading and personal study. At night I listened to recordings of Bible talks. Some of these talks mentioned experiences of Christians who had faced death with unwavering faith in the coming Paradise and the resurrection. (Luke 23:43; Revelation 21:3, 4) Soon I had all the talks memorized. I had no way of knowing then just how valuable such upbuilding information would prove to be in the near future.
On July 11, 1998, a letter arrived from Brooklyn. Yes, I had been invited to go to Bethel. A month later I was in my Bethel room. I was assigned to work in the bindery, making books that are shipped to many congregations. My boyhood dream had come true. I was at Bethel, ‘making Bibles for Jehovah’!
The Disease Takes Hold
A month or so before going to Bethel, however, I had noticed that I was not able to extend my right index finger fully. About the same time, I found that my work as a pool cleaner was leaving me quickly exhausted. I figured that I just wasn’t trying hard enough. After all, I had held jobs that were far more physically demanding with no problem.
Within a few weeks of my arrival at Bethel, the symptoms worsened. I could not keep up with the other young men as they bounded up and down flights of stairs. My work in the bindery involved lifting bundles of book signatures. Not only would I tire easily but my right hand was curling up. Also, my thumb muscle began to atrophy, and soon I could not move my thumb at all.
In mid-October, just two months after my arrival at Bethel, the doctor diagnosed my condition as ALS. As I left the doctor’s office, I immediately began to recall those Bible talks I had memorized. Jehovah’s spirit must have been with me because the thought of dying didn’t frighten me. I simply went outside and waited for my ride back to Bethel. I prayed that Jehovah would strengthen my family when I told them the news.
As I mentioned at the outset, I could not help but feel blessed. My boyhood dream of going to Bethel had come true. That evening I walked over the Brooklyn Bridge, and I thanked Jehovah for allowing me to reach my goal. I also fervently asked for his help to face this dreadful ordeal.
Many friends called to offer support and encouragement. I tried to be upbeat and positive. However, about a week after the diagnosis, when I was on the phone with my mom, she said that it was good that I was being so brave but that it was OK to cry. The words had barely left her lips before I started sobbing. It hit me that I was about to lose everything I had dreamed about.
Mom and Papa were eager to get me home, so they surprised me one morning in late October by knocking on my door. Over the next couple of days, I showed them around Bethel and introduced them to my friends as well as to older, longtime members of the Bethel family. Those precious days when I got to share my Bethel experience with my parents are among the happiest memories of my life.
Counting My Blessings
Since then, Jehovah has continued to bless me in many ways. In September 1999, I gave my first public discourse. I was able to give several more in various congregations, but soon my speech became so slurred that it was necessary for me to stop giving public talks.
Another blessing has been the unwavering love and support of my family as well as my spiritual family of brothers and sisters. As my legs grew weaker, friends held my hands to help me walk in the ministry. Some even came over to our home to help take care of me.
Among the greatest blessings has been my wife, Amanda. When I came back from Bethel, we became friends, and I was impressed by her spiritual maturity. I told her everything about my ALS and the doctor’s prognosis. We spent much time together in the ministry before we began courting. We were married on August 5, 2000.
Amanda explains: “I was attracted to Jason because of his love for God and his zeal for spiritual things. People young and old were naturally drawn to him. I am quiet and reserved by nature, and he was so alive and animated, very outgoing. We both have a sense of humor, so we laughed a lot together. I felt so comfortable with him, as if we had always known each other. Jason made sure that I was fully aware of his illness and of what was to come. But I figured that we would enjoy as much time as we could together. Besides, there are never any guarantees in this system of things. ‘Time and unforeseen occurrence’ befall even those with good health.”—Ecclesiastes 9:11.
Finding Ways to Communicate
As my speech became less and less understandable, Amanda began serving as my translator. When I could no longer speak at all, we devised a special system of communicating. Amanda says the letters of the alphabet, and when she says the letter I want, I blink my eyes. She remembers that letter, and then we go on to the next one. In this way I am able to spell out entire sentences. Amanda and I have become quite proficient at this method of communicating.
Now, thanks to modern technology, I have a laptop computer that allows me to communicate. I type what I want to say, and the computer voice will speak whatever I have typed. Since I can no longer use my hands, an infrared sensor is aimed at my cheek and senses any movement. A box containing the alphabet appears in the corner of the computer screen. By moving my cheek, I can highlight the letter I want and type out words.
With this computer I can write letters to people who are interested in the Bible—those my wife finds in the ministry. Using my computer voice, I can offer prepared presentations from door to door and conduct Bible studies. In these ways I have been able to continue serving as a regular pioneer. More recently, I have once again been able to give talks and handle other teaching assignments in the congregation, where I am a ministerial servant.
Maintaining a Sense of Humor
We have had our share of harrowing ordeals. As my legs grew weaker, falling down became a recurring problem. More than once, I fell backward and split my scalp open. My muscles would lock up, so I would fall down like a tree. Those around me would be horrified and rush to my aid. But I would often make a joke to break the tension. I have always tried to maintain a sense of humor. What else could I do? I could get angry about how difficult my life was becoming, but what good would that have done?
One night when I was out with Amanda and two friends, I suddenly fell backward and hit my head. I remember the three concerned faces looking down at me and one of my friends asking if I was all right.
“Yes,” I said, “but I’m seeing stars.”
“Are you serious?” my friend asked.
“Really, look,” I replied, pointing to the sky. “They’re beautiful.” Everyone laughed.
Coping With the Daily Challenges
As my muscles continued to atrophy, I began to experience more and more challenges. Simple tasks, such as eating, bathing, using the toilet, and buttoning my clothes, soon became exhausting and frustrating daily rituals. Now my condition has deteriorated to the point where I am no longer able to move, speak, eat, or breathe without assistance. I have a feeding tube in my stomach through which I am fed a liquid diet. I have a ventilator connected to a tube in my throat, which allows me to breathe.
Although I was determined to be self-sufficient for as long as possible, Amanda was ever willing to assist me. As I have become more dependent, she has never caused me to feel like less of a man. She has always allowed me my dignity. The work she now does in caring for me is nothing short of amazing, but I know it has not been easy.
Amanda describes her feelings: “Jason’s decline has been gradual, so I have learned how to take care of him as we have gone along. Since he is on a ventilator, he requires 24-hour care. A lot of phlegm and saliva build up in his lungs, which must be vacuumed out using a suction device. As a result, it is hard for either of us to get a good night’s sleep. I feel alone and frustrated at times. Though we are always together, it is difficult to communicate. He was such an animated person, and now only his eyes are animated. He is still very funny, and his mind is sharp. But I miss his voice. I also miss having him hug me and just hold my hand.
“People sometimes ask me how I cope. Well, this ordeal has taught me how much I need to rely on Jehovah. If I rely on myself, I get so consumed with my situation that I feel like I cannot even breathe. Prayer helps, for Jehovah is the only one who truly understands me and what I am going through. Jason’s parents have been a big help. They are always available whenever I need a break or want to go out in the field ministry. I appreciate the help and support we have received from the brothers and sisters in our congregation. Something else that helps me is remembering that any suffering in this system is ‘momentary and light.’ (2 Corinthians 4:17) I try to focus on the coming new world, where Jehovah will fix everything. I will probably laugh and cry at the same time when all this pressure is gone and Jason is Jason again.”
I must admit that at times it can be very discouraging for me, as a man, to sit here in this wheelchair, completely helpless. I remember one time when we were at my sister’s home for a family gathering. I had not yet had my food, so I was hungry. Everyone was enjoying barbecued hamburgers and corn on the cob. As I watched the others eating and playing with the babies, I got very depressed. I began thinking: ‘This just isn’t fair! Why do I have to miss out on these things?’ I did not want to spoil the evening for everyone, so I begged Jehovah to help me hold back the tears.
I reminded myself that by keeping faithful, I can give Jehovah an opportunity ‘to make a reply to Satan, who is taunting him.’ (Proverbs 27:11) This gave me strength, for I realized that there are much more important issues than whether I can eat corn on the cob or play with babies.
I am very well aware of how easy it is for a sick person like me to become absorbed in his own problems. But I have found it helpful to have “plenty to do in the work of the Lord.” (1 Corinthians 15:58) By keeping busy in the ministry, I don’t have time to be anxious about my own problems. Focusing on helping others to develop faith in Jehovah has been a key to happiness for me.
Something else has helped me to fight depression. I reflect on the experiences of faithful ones who have been imprisoned, some in solitary confinement, because they refused to stop preaching about God’s Kingdom. I pretend that my room is my prison cell and that I am in prison for my faith. I reflect on the advantages that I have over some of them. I have access to Bible literature. I can attend Christian meetings, either in person or by telephone. I am free to carry out my ministry. I have my precious wife to keep me company. Meditating in this way helps me to appreciate how blessed I am.
The words of the apostle Paul are especially close to my heart: “We do not give up, but even if the man we are outside is wasting away, certainly the man we are inside is being renewed from day to day.” I am most definitely a man who is wasting away on the outside. But I am determined not to give up. What sustains me is keeping my eyes of faith focused on “the things unseen,” including the blessings of the coming new world, where I know that Jehovah will make me whole again.—2 Corinthians 4:16, 18.
To understand the impact of this illness, it is suggested that you read the box “Facts About ALS,” on page 27.
[Box/Picture on page 27]
Facts About ALS
▪ What is ALS? ALS (amyotrophic lateral sclerosis) is a disease that progresses rapidly and attacks the motor neurons (nerve cells) in the spinal cord and lower brain. The motor neurons are responsible for transmitting messages from the brain to the voluntary muscles throughout the body. ALS causes the motor neurons to degenerate or die, leading to progressive paralysis.*
▪ Why is ALS also called Lou Gehrig’s disease? Lou Gehrig was a famous American baseball player who was diagnosed with ALS in 1939 and died in 1941 at 38 years of age. In some lands ALS is called motor neuron disease, which is a broader category of illnesses that includes ALS. ALS is also sometimes referred to as Charcot’s disease, after Jean-Martin Charcot, the French neurologist who first described it in 1869.
▪ What causes ALS? The cause of ALS is not known. According to researchers, the suspected causes include viruses, protein deficiencies, genetic defects (especially in familial ALS), heavy metals, neurotoxins (especially in Guamanian ALS), immune-system abnormalities, and enzyme abnormalities.
▪ What is the prognosis? As the disease progresses, muscle weakness and atrophy spread throughout the body. In later stages the disease weakens the muscles of the respiratory system, and eventually patients must depend on a ventilator. Because the disease affects only the motor neurons, it does not impair the patient’s mind, personality, intelligence, or memory. Neither does it impair the senses—patients are able to see, smell, taste, hear, and recognize touch. ALS usually proves fatal within three to five years of the onset of symptoms, but up to 10 percent of patients may survive for ten years or more.
▪ What is done to treat the disease? There is no known cure for ALS. A doctor may prescribe medications to help reduce the discomforts associated with certain symptoms. Depending on the symptoms and the stage of the disease, the patient may benefit from certain rehabilitation services, including physical and occupational therapy, speech therapy, and various assistive devices.
There are three common classifications of ALS: sporadic (the most common), familial (about 5 to 10 percent of cases have a family history), and Guamanian (a high number of cases have occurred in Guam and the trust territories of the Pacific).
Lou Gehrig: Photo by Hulton Archive/Getty Images
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Touring Bethel in 1985
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With Amanda on our wedding day
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A special laptop computer helps me communicate
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I enjoy giving talks in our congregation