Allowing ALS to sharpen my focus

In seminary I did a semester internship as a student chaplain in an urban hospital. I was assigned to the cancer ward where I sought to minister primarily to terminally ill patients and their families. As part  of my training I read the classic work on death and dying by the late Dr. Elisabeth Kübler-Ross, On Death and Dying: What the Dying Have to Teach Doctors, Nurses, Clergy and Their Own Families.

Early in the first chapter Dr. K-R made several insightful remarks.

“In simple terms, in our unconscious mind we can only be killed; it is inconceivable to die of a natural cause or of old age.”

“The more we are making advancements in science, the more we seem to fear and deny the reality of death.”

Five Stages of Grief

Based upon her research, Dr. K-R, a co-founder of Hospice world-wide, described five stages of grief that the terminally ill tend to pass through prior to death itself. These are not five stages laid out in a linear progression through which all persons necessarily pass, but can occur in random order, and some stages not at all. The stages she identified are: (1) Denial and isolation: shutting oneself off from family, friends, and social events, and refusing to accept the diagnosis. (2) Anger: “Why me?!” (3) Bargaining: e.g. for the religious, vows to the Divine of “how more faithful I promise to be if you lift this illness from me.” (4) Depression: deep sadness knowing that in this sickness “I won’t be better tomorrow.”  (5) Acceptance (or Resignation) of the cold, unavoidable outcome.

Survey: Most Americans Favor Physician-Assisted Suicide

With Dr. K-R’s statement in mind (“The more we are making advancements in science, the more we seem to fear and deny the reality of death.”) it is with interest, then, that I read the December 6, 2016 report from Lifeway Research of their recent poll of Americans concerning physician-assisted suicide, “Most Americans Say Assisted Suicide is Morally Acceptable.”

Currently six states allow physician-assisted suicide: Colorado, Washington, California, Vermont, and Montana, and soon, pending Congressional approval, the District of Columbia.

In the survey, people were asked to respond either in the positive or the negative to the statement, “When a person is facing a painful terminal disease, it is morally acceptable to ask for a physician’s aid in taking his or her own life.” Sixty-seven percent agreed and thirty-three percent disagreed.

Survey: 38% of Evangelical Christians Favor Physician-Assisted Suicide

But then comes the somewhat surprising finding. Thirty-eight percent of those holding evangelical Christian beliefs agreed. Hmmmm. The following chart is taken from the LifeWay report.assisted-suicide

Notice, however, the qualifier contained in the postulate: “When a person is facing a painful terminal disease . . .”

Question: Does pain or the degree of pain make a difference?

No one likes pain or suffering.

I am terminally ill with ALS, but it is usually a relatively pain-free death. What if I had pancreatic cancer, or a terminal kidney disease, or a painful, inoperable brain tumor? Would those conditions alter my opinion? On the other hand, even though ALS is not characterized with great amounts of pain, there is a  high incidence of suicide among ALS patients. Why? Because, while pain-free physically, ALS can be devastating emotionally.

As reported in the New England Journal of Medicine, May 2002, a study of ALS patients in the Netherlands for the period 1994-1999 showed that one in five patients chose physician-assisted suicide.

A second study, conducted in Sweden in 2008 found there to be “an almost 6-fold increased risk for suicide among ALS patients,” and most of these within the first year of diagnosis. 

But as a Christian my point of view in learning to live with a terminal illness must reflect biblical teaching, and fueled by the grace that God gives me daily, I can be joyful in my sickness.

The apostles Paul and Peter addressed suffering specifically. In each instance they highlight a clear focus on the future.

“More than that, we rejoice in our sufferings, knowing that suffering produces endurance, and endurance produces character, and character produces hope, and hope does not put us to shame, because God’s love has been poured into our hearts through the Holy Spirit who has been given to us” (Romans 5).

“For I consider that the sufferings of this present time are not worth comparing with the glory that is to be revealed to us” (Romans 8).

“And after you have suffered a little while, the God of all grace, who has called you to his eternal glory in Christ, will himself restore, confirm, strengthen, and establish you” (1 Peter 5).

Sharpening my focus on the glories of my future

It is by God’s grace that the limitations brought on by ALS are sharpening my focus on the glories of my bright future. I admit that much of what I imagine about heaven is a bit cloudy, but what I do know from Scripture fills me with awe and expectation. At the least I know that “tomorrow” will be much better than “today”! While “today” is temporal, “tomorrow” is eternal. And while the present has me scooting around in an electric wheelchair, the future has me walking and running and maybe even flying!

There is a purpose to suffering and if faced rightly it can drive use as a nail deep into the love of God and into more stability and spiritual power than you can imagine. (Tim Keller, in Walking With God Through Pain and Suffering)

(Photo at top used with permission via license from ShutterStock)

4 Replies to “Allowing ALS to sharpen my focus”

  1. Ken, I so enjoy reading your posts! Thank you so much for allowing us into your home as we see through your eyes this journey with ALS and your faith in the God that we love. Sending prayers for a blessed Christmas – and may mercy, love and peace be yours in abundance – now and forever.


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