Some of my favorite stories about Uncle Stewart involve Mount Timpanogos. The first happened many years before I was born. His little brother Eric was invited to hike Timpanogos with a friend of his, and Stewart prepared him a lunch to eat on the hike. The family Eric hiked with had all sorts of good food to eat at lunch, and trail mix to eat along the way, but when Eric opened his lunch bag he found only one sandwich. It was a slab of raw turnip between two slices of homemade whole wheat bread. Last year in a family discussion about this story Stewart explained, “Maybe some turnip seemed like a good idea to make up for the dryness of bread! Of course, a person could just drink some water for that. I do like turnips, in moderation.” Eric observed that the real lesson of the story was that “an older brother was thoughtful enough to do that kindness – even if the cuisine was unique to him.”
When I was eight years old I hiked to the summit of Timpanogos for the first time with my dad and siblings. On our way down from the summit we slid down the glacier, and as we approached Emerald Lake we saw a lanky figure hiking toward us. As we got closer we were surprised to find that it was Uncle Stewart. He was wearing an old pair of jeans, an old long-sleeved dress shirt, and his signature hat. He was also holding an old bleach bottle, which was his water bottle. I remember that he let me drink out of his bottle, and the water smelled and tasted like bleach.
When I was 18 years old I took a trip with Uncle Stewart to Mexico to collect plant samples for his botany research. On that trip he bought a loaf of whole wheat bread and a bottle of Catalina dressing at a grocery store, and ate Catalina dressing sandwiches for most of his meals. Ten years later he was still using that same old bleach bottle to carry his water.
I have been asked to say a few words today about Stewart’s experience with the disease which took his life. My goal is to help us understand something about what he suffered, so that we can appreciate how much our thoughts and prayers and service meant to him.
About four years ago Stewart began to notice weakness in his left hand, and the muscles of his hand began to visibly waste away. Two years later the weakness was spreading to other parts of his body, and he was diagnosed with amyotrophic lateral sclerosis, or ALS, also known as Lou Gehrig’s disease. This disease causes the slow death of nerve cells in the brain and spinal cord which control voluntary movements. When these motor neurons die the muscles in the body gradually become weak and shrink in size. The result is the gradual spreading of profound muscle weakness into every region of the body. As the disease spread up and down Stewart’s spinal cord he first lost the strength in his hands. Then as his legs weakened he became unable to walk and relied on a wheelchair. During the spring of 2015 he developed such weakness in his swallowing muscles that he could no longer eat and drink safely, and his breathing muscles were so weak that he couldn’t cough with very much force. The result was a terrible case of pneumonia which led to respiratory failure, and Stewart spent over a year at the end of his life on a ventilator to support his breathing and with a feeding tube inserted directly through his body wall into his stomach. Over the last year he has struggled with repeated bouts of pneumonia, with bacteria which were progressively more and more resistant to antibiotics. The last three weeks of his life were spent in an intensive care unit with a severe lung infection, and by then he had lost all voluntary movement of his arms and legs, and most of his face. He was able to open and close his eyes and nod his head slightly.
One of the great blessings – and tragedies – of ALS is that it typically leaves the non-motor parts of the brain relatively intact. Stewart’s mind was active and clear throughout the disease course. Even during the past year while he has been on a ventilator he has been able to communicate through writing as long as his hand strength held up, and later by using electronic devices which allowed him to type using his eye movements. At the end of his life he could answer questions by nodding his head and blinking his eyes. Despite the gradual loss of all of his independence and even the severe limitations on his ability to communicate, Stewart was conscious and aware of his circumstances. He could suffer. He could be lonely. He could pray. He could direct the management of his meager financial assets. He directed his own medical care, and his judgment was clear on Monday this week when he gave the final order to turn off the ventilator.
God designed and created this world; why did he build into it such horrible diseases as amyotrophic lateral sclerosis? Was there a purpose in Stewart’s suffering? If so, what was it? Although I don’t claim to have all of the answers, I can say that having faith in God and in his plan takes much of the sting out of these hard questions. Part of the answer comes from the New Testament. In preparing these remarks I was reminded of a story from the 9th chapter of John:
“And as Jesus passed by, he saw a man which was blind from his birth.
And his disciples asked him, saying, Master, who did sin, this man or his parents, that he was born blind?
Jesus answered, Neither hath this man sinned, nor his parents: but that the works of God should be made manifest in him.” (John 9:1-3)
Jesus healed this blind man, and he became a devoted disciple and a courageous defender of the Lord. So how were the works of God made manifest in Stewart’s illness?
Stewart suffered with a pathologic shyness, and I’m sure it was hard for him to accept the increasing amounts of assistance he required during the course of the disease. And it may have been uncomfortable at first for him to receive the gushing affections of a group of people that defined itself by their love for him. But he smiled in his humble way and accepted all of these things. As the disease progressed he developed a greater freedom in expressing his emotions to others. He was able to share some of his very private feelings with others for the first time in his life.
It has been observed – and I have definitely seen this in my own practice – that patients with ALS tend to be easy to get along with. This has been observed so often that ALS has developed a reputation for being a “nice guy’s disease,” and much has been said about the bitter irony of such a terrible disease afflicting such good people. This assumes, of course, that being a nice person somehow increases your risk of getting ALS, but I think the relationship goes the other way. This horrible disease has a way of bringing out the best in some people.
People with ALS wake up every morning knowing that they only have a limited time to live – 2-5 years, on average, from the time of diagnosis. Every morning they wonder what physical ability they might have lost overnight. Can I still climb stairs today? Can I still do the buttons on my shirt? Will I need help using the toilet today? For many people this daily reminder of progressing disability and impending death brings their life and its purpose into clear focus. There is less distraction by things of little consequence, and the things which are really important get the attention they deserve.
I remember an elderly woman who came to my clinic with her husband for a second opinion after she had been diagnosed with ALS. After reviewing her history, examination, and laboratory data, I said to them, “I agree with the diagnosis. I think this is ALS. I’m so sorry to give you such a heavy diagnosis.”
Her husband replied, “It is okay. We are at peace with it. We are not afraid of death because we know that we have been saved and that we will be with Jesus.” The peace they felt in such a turbulent time was a gift of the Spirit, bringing them strength and security in their conviction that God is good, and that all would be well in the end. I have no doubt that Stewart’s faith was also an anchor to his soul through his illness.
The works of God were also made manifest among Stewart’s family and friends, who rallied together to show support and love for him. Lines of communication were kept open, and respectful discussions of how we could best help him continued throughout his illness. Siblings who lived far away, even across oceans and halfway around the world, were kept informed of Stewart’s status and were involved in important discussions. We all prayed for him, and fasted for him. There were remarkable stories of people visiting him week after week and helping his mother to visit him regularly. Visiting the sick was among those acts of service about which the Lord declared, “Inasmuch as ye have done it unto one of the least of these my brethren, ye have done it unto me” (Matt 25:40). Surely this was the work of God.
Yesterday I sat at the summit of Mount Timpanogos eating a turnip sandwich and drinking water from an old bleach bottle, thinking of Uncle Stewart. Along the trail my daughter collected some wildflowers, which we placed in Stewart’s hands in the casket. My sons found two heart-shaped rocks on the mountain, and we placed one in each of his hands.
Stewart was a good and kind man, and I believe that his illness, while surely a hard trial, made him an even better man than he was. May God bless his soul! And may each of us live worthy to join him in heaven above, where we will find him in “a state of rest, a state of peace, where [he] shall rest from all [his] troubles, and from all care, and sorrow. (Alma 40:12)”