“You may not be ready to hear what I need to tell you,” said my Goshen neurologist after 45 minutes of viewing an MRI of my brain, a few taps from his rubber mallet and many questions. “You have symptoms of ALS” (Amyotrophic Lateral Sclerosis).
Difficult, but at least that exam in August 2014 offered clarity after a two-year journey with six doctors to find reasons for my drooping head, a failing left knee, occasional falling, growing weakness in my arms and general fatigue. During this journey, I was referred to the Cleveland Clinic Spine Center twice for possible lumbar and cervical spine surgery. But the doctors instead recommended continued physical therapy, which I’d been doing for two years. I told Judy, my wife, as she drove us home from the appointment, “Today starts a new chapter in my life.”
Our Goshen, Ind., neurologist referred me to Cleveland’s Neuromuscular Center, where we met Dr. Pioro, a leading ALS specialist, whom we immediately liked. His tests confirmed my ALS diagnosis in October 2014, and he committed to joining hands with my local neurologist for our journey into the progressive disabilities of this rare disease. I asked about my likely prognosis. “I am a doctor, not a prophet,” he said. I told him I’d expected to reach 90 like my great-grandfather, grandfather and father Dyck, and he responded that ALS is not necessarily a cause of death, as some ALS patients die of other causes.
But still, how does one cope with such a reality? I recognized my own capacity for denial. I was a mental
health therapist long enough to learn the positive values of denial: trim the size of a threatening reality and break off manageable chunks at a time. This helped me decide to pay close attention to what my own body tells me about ALS—gradually.
When invited to write my story for The Mennonite, I went to Google and was immediately overwhelmed by vast amounts of “authoritative” information. Feeling depressed and worried that I had bitten off too much, I backed off. As I began to write this story, I felt more grounded and emotionally balanced again.
I did read about Lou Gehrig and Stephen Hawking, two gurus of this exclusive club I have joined. I feel some connection to the famous Yankee first baseman, who hit four home runs in one game in 1932 while I was a growing fetus. ALS struck him out of baseball in 1939, and he died two years later. Hawking, the famous British master of mathematics and cosmology, first encountered ALS at age 21, and though severely disabled and communicating with one small muscle in his cheek attached to a communication device, he is still living at the age of 72, after enduring ALS for 51 years. These two men’s experiences illustrate the great variation in ALS progression and help me live with this partnership.
ALS received increased attention with the Ice Bucket Challenge fund-raiser for research that quickly raised more than $100 million. There have been some advances in describing the ALS biological process, but what triggers it remains a mystery. According to a 2011 Chicago Tribune report, researchers at Northwestern University have identified the “janitor” (my term) protein in spinal and brain system cells whose job it is to remove or repair damaged proteins. When this protein fails, for reasons still unknown, the accumulating trash impedes the motor impulses from brain to muscles. Then the muscles atrophy and begin to disappear. I already have obvious concave areas in my shoulders.
After Judy and I married in 1973, almost every year we vacationed in Estes Park, Colo., now our favorite mountain valley. We purchased a small hillside condo that we call “Perch over Estes,” and we live there three or four months a year. Since the four nearest Mennonite churches are more than 35 mountain miles away, we attend a progressive, ecumenical “Journeys” class at the local Presbyterian church. The Sunday after my diagnosis, I spoke to the class we have claimed as our local Christian community, reported my diagnosis and confessed my need for patience, courage, spiritual strength and wisdom for our difficult journey.
During a visit with friends the following week, I reflected that in my prayer request I did not ask for healing. I’ve chosen not to accept a Why me? mentality. Judy, in fact, has asked, “And why not you?” I agree. As a follower of Jesus in whose life divine grace and human suffering joined hands, I can’t claim an exemption from suffering.
In Psalm 23, King David claims that God walks with us through, not around, the low places of life. My Google search confirmed that at any one time in the United States there are about 30,000 people living with ALS—or two per 100,000 and 5,600 newly diagnosed each year. So far the cause of ALS has not been identified. How can I claim special exemption from this random human process?
I acknowledge that I am writing this in the early stages of ALS, still walking with a walker, able to feed myself, though with two hands, and living with little pain. The more strenuous parts of this journey for both Judy and me are still ahead—a wheelchair and possibly problems with speech, swallowing and breathing. Perhaps some angry Why me? days will still come.
Such illness requires many decisions, including this: How many times a day do I say thank you to my caring wife for her myriad acts of kindness? Judy helps me get up from chairs, dresses me in the morning, showers me, pulls up my pants after bathroom visits, prepares all our food and drives our CRV.
Our biggest decision so far is where to live—in Goshen or Estes Park? We are leaning toward Estes Park. Its vistas support my current spiritual journey—in our Maker’s marvelous universe. Sunrise with our ritual coffee is a blessing for the day. I love watching the ravens frolic, banking and diving above and below us and near our windows—suggesting a lighthearted and fun-loving spirituality for me. The roaming elk that are often on our back patio encourage a spirituality that can be both wild and free. Even our golden retriever, Mitzi, triggers a connection with her Maker. During my daily physical therapy, lying on my back on our bed, she often jumps up and nuzzles me with an I-am-with-you message, eloquent without words.
The warmth of the clear morning sun on my face, just minutes before at the center of the solar system, gives me a strong connection to the universe and its Maker. The mountains on the horizon in all directions speak of being grounded in the stability and strength of our Maker—just as the writer of Psalm 121 experienced. Since my remaining time will be sedentary and often indoors, our condo windows allow me to gain inner strength from our majestic universe. All this helps me live with ALS.
One serendipitous gift in Estes Park is our neighbor, Judith, who first became our good friend but now is also my physical therapist, since she is retired from 50 years as a PT provider. Another gift are longtime good friends Nan and John Thut, who are the reason we found our way to Estes Park 40 years ago. They offer wonderful support and assistance that is essential to living well with ALS.
I sometimes experience ALS as a frontal attack on my independence. Yes, ALS can severely narrow life, especially its activity, but it cannot prevent deepening it. I am coming to know ALS as a life deepening teacher. What am I learning?
Years ago, I was director of Mennonite Central Committee Voluntary Service, then after seminary a pastor, a conference minister, then at Oaklawn the director of an adolescent treatment program, a pastoral counselor and a case manager for the chronically mentally ill—all caregiving roles. But now, as the tables are turned, I am impressed by how tuned in many fellow humans, both strangers and acquaintances, are to what I need.
After my ALS diagnosis, at our weekly coffee group of six retired men from College Mennonite Church in Goshen, what I told them shocked them. Almost in one voice they said, “Let us know how and when we can help you.” In return I asked them what they know or can do that might assist me. Vic Koop responded first. “I know how to build a wheelchair ramp. Let me know when you need one.” Vic Stoltzfus next suggested reading Tuesdays with Morrie. Then he contacted Anna Groff to suggest this personal story on living with ALS for The Mennonite. And there were other offers from the group.
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