Dr. William E. Hull, right, shares his journey with ALS.

Dr. William E. Hull is a lifelong Baptist who has shaped many lives through pastorates in Alabama, Kentucky and Louisiana and academic positions at The Southern Baptist Theological Seminary, Baptist Theological Seminary in Switzerland, Louisiana State University, Nigerian Baptist Theological Seminary and Samford University. He now serves as Theologian in Residence at Mountain Brook Baptist Church in Birmingham where he and his wife, Wylodine, have been members since 1991.
 Dr. Hull has graciously agreed to share with the Cooperative Baptist Fellowship Community his story of living with Amyotrophic lateral sclerosis (ALS). Also known as Lou Gehrig’s disease, ALS is a disease of the nerve cells in the brain and spinal cord that control voluntary muscle movement.

His reflections will be posted to the CBF blog in three parts this week. The entire document can be downloaded.

Ever since I was diagnosed with amyotrophic lateral sclerosis (ALS) three years ago today, Wylodine and I have been overwhelmed with cards and letters, calls and visits, food and flowers. In this outpouring of love, friends from far and near have offered us their prayers, encouragement, and willingness to help as we struggle with a cruel disease that will finally rob my body of everything, even life itself.

For these many gestures of affection, our gratitude is so boundless that to convey it, even in small measure, would be impossible. But there is one request to which I can respond, and this third anniversary of my journey with ALS may be as good a time as any to do it. Lurking in many conversations, particularly with those who seldom if ever see me now that my traveling days are over, is the unspoken desire to know how I am really doing.

Most people know nothing about ALS, a rare disease afflicting only 22,500 in the U.S., thus are unsure about such things as what I can eat, where I can go, or who I can see. Even the folks greeting me every week or two at church want to know more about my needs but do not ask what they are, primarily out of courtesy.

While I honor the wishes of those who go to great lengths to keep their ailments a secret, my policy is one of full disclosure regarding both the physical and spiritual dimensions of my plight. After all, I am still Theologian in Residence at our church, which makes it incumbent on me to dialogue with members regarding the spiritual consequences of bodily disease and death. We all know those who delight to recite in wearying detail the horror stories of their latest illness, each telling more dramatic than the last! So I shall be as brief as possible, candid without wishing to solicit your pity, majoring on what I think you might want to know.

Past

In my final sermon at Mountain Brook Baptist on October 19, 2008, I sought to describe the shock of suddenly receiving a death sentence. Since copies of that message are still available, I shall begin here with what happened next. A more practical agenda demanded my immediate attention as I adjusted to a new way of life. Our downstairs guest bedroom was converted into my hospital-room-at-home, including the construction of a handicap accessible bathroom. After we made one end of our family room into my office/study, I have lived ever since in three rooms of our eleven room house. A lift built in the garage provided an exit without steps. The displaced cars were transferred to family members, since neither of us could ever drive again, and a van purchased that is wheelchair accessible. Occupational therapists identified the equipment I would need and how to use it, while physical therapists showed me how to maintain enough strength to cope with this strange new environment.

With these living arrangements in place, I next sought to understand the sinister intruder that I knew nothing about. I was fortunate to secure a superb medical team comprised of my primary care physician, an ALS specialist, and a pulmonologist, plus my urologist to monitor complications indirectly caused by ALS. All share my values regarding the rights and responsibilities of the body; two are active members of our church. As you might suspect, I also read several books and articles that recounted the experiences of others with ALS. I even watched the old movie on Lou Gehrig, the Yankee first baseman who became the most famous victim of ALS. But I learned the most from my own experiences, especially on the afternoon of December 28, 2009, when, without warning, my legs suddenly collapsed and I went crashing to the floor, breaking my ankle in two places.

As I wore a surgical boot for six weeks, family and friends joined me in the hope that, when I could again put weight on both feet, a program of exercise would restore me to my previous condition. But it was not to be. Despite the best efforts of therapists at Lakeshore Rehab, plus excruciating attempts on my part to follow their guidance, no progress was made. Gradually the truth dawned: The trouble was not with my ankle that had healed nicely. Rather, the trouble was that the muscles making my legs work had atrophied because the motor neurons in my brain that tell them what to do had mysteriously died! In one fell swoop I lost my mobility, never again to stand, walk, pivot, or climb.

And yet it had happened silently, painlessly, without warning. I learned from this ordeal that ALS works by stealth. It sneaks up and blindsides its victim when least expected. Furthermore, it is content to choose one target at a time. When my legs were knocked out from under me, the rest of my body remained largely unchanged. Call it death on the installment plan.

Once a motorized wheelchair became my only means of mobility, I had to learn – quickly! – how to maneuver my mechanical legs so as to shave at the sink, eat at the table, and work at the desk. The hardest part of all this were the transfers, from bed to shower to chair and back again. I soon discovered, again by surprise, that I could no longer comb my hair, button my shirt, or tie my shoes, thus would need someone to dress me. Since my wife was battling serious health problems of her own and could not meet my rapidly growing needs, our only recourse was to recruit caregivers outside the home. Fortunately, grandson Andrew volunteered for this assignment, at first working part time when not occupied with his church job, but eventually fulltime, coordinating a team of three caregivers providing support to both grandparents on a 24/7 basis.

By now, as I began to understand the ALS story being told by my body, I realized how similar it was to the biblical story that I had long ago chosen to make the story of my life. The scriptural telling begins with how tragically flawed we are by our self-centeredness – Adam blaming Eve, Cain bashing Abel – and how slow we are to realize it – Samson with Delilah, David with Bathsheba. Just so, ALS is a greedy disease, devouring the circuits and sinews that energize the body, doing it so slowly and silently that I did not discover the wreckage until too late. But one day a man named Jesus appeared out of nowhere who was God-centered rather than self-centered. He overflowed with love even for his enemies who unjustly killed him on a cross. That love, and the life that embodied it, could not be destroyed by hatred. When he triumphed over death, his followers began to live out of his spirit in ways they could not live in their own strength. Similarly, when a part of my body dies, Andrew and his team of caregivers take over that function, literally becoming my arms and legs, fingers and feet. I am able to live physically because of them just as I am able to live spiritually because of Christ.