General CBF

Part 3: How am I doing?

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

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.

Future

We might as well deal first with the elephant in the room. ALS is a 100% fatal disease and, if I remember correctly my first course in math, that percentage does not leave any wiggle room. Thus, I am certain that ALS will kill me, and I suspect that it will do so sooner rather than later. Doctors and nurses refuse to make personal predictions but, if pressed, will cite statistical averages surrounded by disclaimers, a caution that is fully justified. For example, one “average” might include two white males of similar age, one an academic colleague of mine who died from ALS after six weeks; the other a famous physicist, Stephen Hawking, who is still going strong after forty-eight years with ALS, despite being profoundly handicapped. As for me, those who are diagnosed with ALS at my age live, on the “average” for three years, which anniversary falls today! This means that, from this point forward, every day I live I am beating the so-called “law of averages.”

Why do I suspect that my exit may be sooner rather than later? For one thing, I entered hospice on March 8, 2011. One Medicare requirement of admittance is that my doctor and the hospice medical director “certify that I am terminally ill and have six months or less to live if my illness runs its normal course.” Regardless of whether or not I beat this prediction, I am content to live with death staring me in the face, for it wonderfully concentrates the mind. Many of our most painful regrets are caused by procrastination, the daily deferral of doing what matters most because, in the refusal to face death, we suppose that there will always be more and better times to complete the highest priorities of life. But one does not dally when death is knocking at the door, for it draws a bottom line that makes all of life accountable, giving it an intensity, even urgency, that is bracing indeed. When the end does come, the patient, family, and attending physicians walk together through a thicket of knotty moral problems being fiercely debated by both scientists and theologians. So complex are the issues that I could not begin to comment without making this report unduly long. Therefore, I have attached an appendix that was prepared as a supplement to my Advance Directive for Health Care (Living Will) in order to be more explicit about how to handle special circumstances presented by ALS. If you have done your homework on the end of- life agenda, you will easily spot the choices I have made. I offer this case study, not because my decisions are better than someone else’s, but as a reminder that you do have to choose or risk fracturing your family and frustrating your doctors in your dying days. My plea: start early, give it your best thought, decide how you want to die, and work to achieve a consensus with all members of your immediate family.

What am I doing to prepare myself spiritually when, as Andrew Marvell put it, I hear “time’s wingèd chariot hurrying near”? I have never been a fan of foxhole religion (turn to God now because any minute you may die). While it is better than nothing, I much prefer a growing faith sturdy enough to see me through the vicissitudes of both life and death. So I do what I have always done: read and ponder the scriptures, meditate and pray, worship and fellowship with the people of God. Because I have never journeyed this way before, I concentrate on the deeper dimensions of death by immersing myself in the great literature, poetry, and music that abound in this area.

As a result, I am at peace with my impending demise. After all, why should I be exempt from that death that is the destiny of everything that lives? As for the Great Beyond, I am not particularly interested in the rewards it may offer, having already received far more blessings in this life than I deserve. Nor am I eager to be dazzled by pearly gates and streets of gold, being more concerned about whether I have lived “on earth as it is in heaven,” as Jesus taught us to pray. His guidance for doing that has become my imperatives for living:

Repent as a radical reorientation of life around the foci of justice and mercy, rather than the issuing of a public relations “apology” for possible “mistakes,” which changes nothing.

Love as unconditional acceptance of friend and foe alike, rather than clinging to those so likeourselves that their affirmation is merely a form of self-congratulation.

Forgive as the basis for a fresh start in a ruptured relationship, rather than blame the adversary as a way of evading our responsibility to work on reconciliation.

If you think me a moral simpleton for advocating such idealistic guidelines, I invite you to consider what one young man with only a handful of followers was able to accomplish by following these precepts during two or three years of public life. As my brief chapter in this unfinished story that began so long ago soon draws to a close, I sing to myself (since I am no longer able to sing aloud):

When I tread the verge of Jordan,

Bid my anxious fears subside;

Bear me thro’ the swelling current,

Land me safe on Canaan’s side.

2 thoughts on “Part 3: How am I doing?

  1. You are so inspirational. My husband was diagnosed in 2000 with ALS and died in late 2001. God knows when it’s time and I know that for my husband God showed his mercy in taking him. For you, He has had a different plan. All we can do is trust in Him…..

  2. My name is Mary mills and I was diagonised with Als In December 19 2011, and I know it started around August 2008. I developed a left drop foot in march 2009 along with so speach problems. I have worked as a nurse at the Seale Harris Clinic for 28 yrs. I loved my job so much I thought I owned the place. Pete Hanna first told me about you and gave me a book. I read it and boy I felt the same way. My pastor Ryan Whitley (whom I trurly love as a pastor), made a house call and for so reason I asked him if he knew you. And he said he did and wanted to make a cppy of the book . I was fitted for a wheelchair last week and Cathy asked me if I wanted to try one out, I still can walk with braces and I really did not want any thing to do with it. I know I will be in one some day. Cathy looked at me and said I have a man today that is on his third yr. and still going strong. I ask her if it was Dr. Hull. She had the biggest smile on her face, and said yes. I hear the same story from everyone who speek about you, what a wonderful Godly man. I hope I can meet you one day. Your sister in christ.

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