Denlow, A Graceful Journey
When I met Denlow and Melissa all I knew about amyotrophic lateral sclerosis (ALS), the progressive neurodegenerative disease that affects nerve cells in the brain and spinal cord, I’d learned from the deeply moving book Tuesdays with Morrie. Written by Mitch Albom, a Detroit sportswriter, the book relates weekly meetings he had with his former professor, who was afflicted with this disease, best known as “Lou Gehrig’s disease.”
Melissa contacted the Living/Dying Project requesting spiritual support for her husband. I initially visited them in my role as Intake Coordinator for the Project but it was clear from this meeting that I would work with them myself rather than refer them to another volunteer. Through weekly meetings and intimate conversations over subsequent months, I was gradually drawn into the circle of family and friends who are part of their journey, a fact for which I’m most grateful. With their permission I’d like to share what IÃve discovered thus far.
I learned from the generosity of Melissa and Denlow toward one another that despite the unrelenting nature of this disease with its frightening reputation, it is possible to keep one’s heart open, and to maintain not only dignity, but humor. Melissa is the gatekeeper for this unfolding adventure who balances raising a young daughter, maintaining a full-time job at home and managing the never-ending challenges of insuring care for her beloved husband. Whether it is finding a suitable care provider, arranging a van to take the family to an event or a doctor’s appointment, or securing one of the many pieces of high-tech equipment necessary to make Denlow’s life easier, Melissa is on top of it. She is the executive assistant everyone wishes they had in their life!
Denlow, the warmhearted fellow you see in the photo on the left, revels in his quirky view of reality that features a life-long affection for clowns and Halloween. (I haven’t actually seen the floppy shoes and red nose, but I’ve been assured he owns them both!) He and Melissa have an unerring capacity for finding humor even in the most challenging of circumstances.
I recall the day Melissa told the story of a dramatic accident the preceding week when a recently hired aide forgot to lock the mechanism used to ease Denlow over the bathtub for his shower. The device toppled over, wedging Denlow between the bathtub and an adjacent cabinet. It was a traumatic moment as Melissa and the aide tried to extricate Denlow.
Later Denlow spoke of feeling panic at being completely out of control, yet, as Melissa told the story, a smile lifted his lips. I knew instantly that despite the trauma of the moment, he was seeing the humor in the whole episode, something out of a Marx Brothers movie or a Christopher Moore novel perhaps. He confirmed my suspicion and we had a brief chuckle. When I observed the importance of humor in their relationship some time later, Melissa recalled her mother and her telling Denlow that if he didn’t behave, they intended to drop him off in his wheelchair beneath a freeway overpass. I couldn’t help but smile at the image and suggested a sign that read, “Will Work for Food.”
My time with Denlow consists of both light and serious moments. We share humor, but at heart we’re exploring Denlow’s relationship with his illness that is gradually diminishing his capacity to engage with life and family. Can he stay open as his body fails him? The question remains before us as the journey continues.
Denlow turned 42 years old in October, celebrating the occasion with his daughter Hannah whose birthday is eleven days before his. Hannah was a few months old when he and Melissa received the definitive diagnosis of ALS. Denlow observed to me during one of our meetings that it has not been lost on him that as his daughter learned to walk, he has been bound increasingly to his wheelchair and as she learned to talk, speech has become ever more challenging for him. At one point, he referred to this disease as a “cruel joke,” observing that he retains all his senses, as well as his mental acuity, yet his body makes it impossible for him to act. One of the poems he shared with me early in our time together poignantly tells the reality of this disease as he experiences it. It brought tears to my eyes.
Denlow initially requested that Melissa do everything in her power to extend his life, even if only an eyelash flutters. After a three-year journey faced with repeated losses of capacity and related freedom, he is now more focused on quality of life than quantity. He also defines healing as something more than physical. During our many conversations Denlow has spoken of what he is learning along the way. Impatience has finally yielded to gratitude. Despite a history of procrastination he understands that it is better to not put off what can be done today, including loving those around him.
His busy daily regimen of rising, bathing, dressing, eating, working with massage therapists, psychotherapist, acupuncturist, as well as visitors such as me, demands considerable energy as well as the help of his aide. Even talking is a whole body exercise requiring coordinated management of limited breathing, a flexing diaphragm and tongue and lips that don’t always respond faithfully. I commented one day on the vast amount of energy he expends in speaking and he told me everything he does takes effort.
Yet despite the challenges that deepen as time goes on, Denlow continues to express himself through poetry he shares with family and friends. He also shares a visit each week with a close friend to a local movie theatre, the continuation of a life-long passion for movies. Of course, the journey is made possible only because of his wheelchair and the services of a local transportation company.
At his birthday celebration I met the circle of friends who love Denlow and his family. They’ve long appreciated his sense of humor, his idiosyncratic view of the world. When he was unable last year to decorate their home for Halloween, a favorite pastime of his, friends came and did it with/for him. The occasion was documented by a collection of still photos of each person making funny faces that ended up in a large print now hanging in their home.
Melissa told me one day that although Denlow worked in an office, dressed in shirt and tie, he painted his toenails as a statement of his inherent freedom. He chuckled at the realization that he alone knew he was wearing brightly colored toenails as he sat through business meetings. Even the name that so confused me before I met him announces his rebellious streak. His given name is Dennis Enlow, but when he was sent to the principal’s office during seventh grade the note was always headed with his name, “D. Enlow.” friend picked up the nickname and he’s held onto it his whole life.
So is it irreverence that makes possible such a graceful journey through growing incapacity and an end understood by all? A bit of gallows humor helps, perhaps? No doubt, though it is love and good will, profound respect and trust that inform everything. You can laugh in the face of challenge when the people with whom you laugh care deeply for your well-being. And being well has nothing to do with a long life. Melissa told me one afternoon that her commitment throughout this journey has been to live it with integrity. That doesn’t mean perfectly. It does mean doing it with an open heart that extends to the whole community that surrounds their family and offers support.
Perhaps it is not possible to know how they will reach the end of this journey, but it is clear these lovely young people have been touched by grace, which they share with everyone around them, including me. Thank you Denlow for inviting me to share your journey. Thank you Melissa for being the remarkable woman you are. However this unfolds, I plan on being there with you both.
Attached is a PDF file that essentially replicates what was presented in the newsletters, including photos, graphical images and related poems. I also add at the end a final poem from Denlow titled “Terminal Velocity.”This document also includes color photos rather than the black and white photos used in the newsletter.