A crisis like Alzheimer’s can unnerve you. Knowing that firsthand, I’ve often asked myself, “Why are some victims and caregivers able to do what they do?”
There’s Pat Summitt, who died recently. Coach of the University of Tennessee women’s basketball program, she won more games than any other college basketball coach, women’s or men’s. After being diagnosed with early onset, she was reported saying, “There's not going to be any pity party.” She coached one more year and then pushed through plans to establish a foundation to combat Alzheimer’s. With all that was raining down on her, how did she do this? Why?
I think, too, of the friend who for years cared for her mother with Alzheimer’s while continuing to work. “I’d do it again,” she told me. Why?
Greg O’Brien also comes to mind; he’s a friend of a friend. After being diagnosed with early onset, Greg wrote a riveting book about his experience: On Pluto: Inside the Mind of Alzheimer’s. The book won the 2015 Beverly Hills International Book Award for Medicine and is an Eric Hoffer International Book Award finalist.
NPR’s All Things Considered airs a series with Greg about his journey. He serves on the Alzheimer’s Association Advisory Group for Early Onset Alzheimer’s, and is an advocate for the Cure Alzheimer’s Fund of Boston and the Washington, DC-based UsAgainstAlzheimer’s. Greg directs his energy this way rather than isolating himself at home. How does he do this? Why does he do it?
Another friend, whose husband was diagnosed with Alzheimer’s a couple of years ago, has stepped onto a steep curve of learning how to care for him while taking care of herself. Why?
I think of Dr. David Compton. At too early of an age, he was diagnosed with this disease. The little I’ve gotten to know him as an adult (our lives intersected in our more tender years), I call him the “Listening Doctor.” That’s how I’ve heard him described by his patients and friends. Yet after giving so much of himself as a doctor, he’s giving even more now, willing to share his experience with others. Why?
Sundar Singh, whom I wrote about two weeks ago, was also asked Why? With all the demands on him, why did he expend so much effort in helping others? He responded with this story:
“Once when traveling in Tibet, I was crossing a high mountain pass with my Tibetan guide. The weather had suddenly turned bitterly cold, and my companion and I feared that we might not make it to the next village—still several miles away—before succumbing to the frost.
“Suddenly, we stumbled upon a man who had slipped from the path and lying in the snow. Looking more closely, I discovered that the man was still alive, though barely. ‘Come,’ I said to my companion, ‘help me try to bring this unfortunate man to safety.’ But my companion was upset and frightened for his life. He answered: ‘If we try to carry that man, none of us will ever reach the village. We will all freeze. Our only hope is to go on as quickly as possible, and that is what I intend to do. You will come with me if you value your life.’ Without another word and without looking back, he set off down the path.
“I could not bring myself to abandon the helpless traveler while life remained in him, so I lifted him on my back and threw my blanket around us both as best I could. Slowly and painstakingly, I picked my way along the steep, slippery path with my heavy load. Soon it began to snow, and I could make out the way forward only with great difficulty.
“How we made it, I do not know. But just as daylight was beginning to fade, the snow cleared and I could see houses a few hundred yards ahead. Near me, on the ground, I saw the frozen body of my guide. Nearly within shouting distance of the village, he had succumbed to the cold and died, while the unfortunate traveler and I made it to safety. The exertion of carrying him and the contact of our bodies had created enough heat to save us both. This is the way of service. No one can live without the help of others, and in helping others, we receive help ourselves.”
This comes from Wisdom of the Sadhu: Teachings of Sundar Singh, page 135. (Plough Publishing House of The Bruderhof Foundation, Farmington, PA.)
Some have asked me why I stayed on our Alzheimer’s-riddled path for 17 years caring for my wife Martha. Even today I’m not totally certain. But I vividly remember the time, when I was desperately scrambling for answers and a shred of stability, that it dawned on me: “I’m in as much need of healing in my own way as Martha is in hers.”
Each of us has differing motives, but for me Sundar Singh’s story cuts to the quick the question facing us all at one time or another: Why not give up?
An Endorsement of My Upcoming Book
When appropriate, I’m sharing endorsements of my book, A Path Revealed: How Hope, Love, and Joy Found Us Deep in a Maze Called Alzheimer’s, which should publish this October. This one is by Deborah van Deusen Hunsinger, Ph.D. and professor of Pastoral Theology at Princeton Theological Seminary. Dr. Hunsinger’s most recent book, Bearing the Unbearable: Trauma, Gospel and Pastoral Care, was awarded the 2015 Book of the Year by the Academy of Parish Clergy. This is what she says:
“A moving account of one man’s journey from a conventional faith to a stunningly real relationship with God, this spiritual memoir will linger in your imagination long after you have finished reading it. It describes the author’s path through the desert of his beloved wife’s slow descent into Alzheimer’s disease for more than sixteen years. ‘A Path Revealed’ is an intimate meditation on how one man was shown how to love and trust God in the midst of devastating loss.”