Denlow Enlow: The Journey Ends
Denlow Enlow died on March 18, 2009 after four years struggling with the ravages of Lou Gehrig’s disease, ALS. Those who’ve been following his journey over the last two years in the pages of the Living/Dying Project newsletter are aware that Denlow was a remarkable man who met the challenges of his disease with grace and good humor.
During the final six months of his life Denlow focused his energy on preparing for the end. Most important to him was recording for his young daughter Hannah who her father was. His diagnosis happened shortly after her birth, consequently his illness was very much part of her life from the beginning. He’d witnessed with sadness the space that had been growing between them as Hannah’s life took her outside of their home and his growing incapacity made it ever more difficult for him to engage with her when she was at home. He hoped to document his life through photos, videos, music and the written word. The final months of his life he devoted his limited energy to finishing a project that in reality could never be finished. There was simply too much to say.
He also worked with me during those months to prepare for his memorial service. We reviewed his poetry to see what might be suitable to the occasion. He explored his extensive collection of songs, creating a playlist he called “The Mourning After.” We laughed and we cried as we reflected on the fact of this end to his life.
The focus of my work with Denlow throughout the time we met together was quite simply encouraging him to remain open in the face of whatever was happening in his body as it gradually failed him. Early in our meetings Denlow focused on the fear of being breathless, of essentially suffocating. The subject occupied his dreams and eventually his poetry. He wrote about a snake wrapping its body around him after it had paralyzed him, then squeezing the breath and life force from his body. Those fears gradually diminished but as his breathing became labored and occasionally failed him, the challenge remained to keep open to each moment. Denlow did so with remarkable grace.
The day Denlow died was a day I was scheduled to meet with him. I’d agreed to offer respite to Denlow’s beloved caregiver Joe after Melissa returned to working a few days each week at her employe’s office. For the first few years of their journey together, Melissa had telecommuted from home, so she was always available to give Joe a break. Providing “chair side” nursing support is not typically part of being a volunteer with the Living/Dying Project and I certainly had some apprehension the first day I assumed my new duties. Yet, I was aware when Melissa asked if I were willing, that the bond of love that had grown between Denlow and me over the years we’d been meeting, made it easy to say yes.
On this particular day, however, the paramedic’s van pulled up just as I arrived. I didn’t know precisely what had happened but I was aware there had been many emergency visits in the past. I led them to where I expected Denlow would be waiting. He was seated in his wheelchair gasping for breath, a mask over his face as Joe attempted to give him relief with bottled oxygen. The paramedics quickly determined that Denlow needed to go to the hospital. I followed and after convincing hospital staff my presence might be helpful to them since he couldn’t communicate without his computer, they permitted me to join Denlow in the emergency room.
Clearly, I had nothing to contribute to this moment apart from the relationship Denlow and I had created over the hundreds of hours we’d spent with one another. I stood at his shoulder, my hand on his arm or holding his hand. I was able to tell hospital staff what I knew of his condition and directed them to Melissa for more detailed information. Beyond that I simply gazed into Denlow’s eyes and encouraged him to remember that he was more than this body that was failing him at the moment. With the efforts of the staff and perhaps my calming presence Denlow was gradually able to calm down. When Melissa arrived an hour later it seemed Denlow had stabilized and that this latest episode would conclude without further incidence. Before leaving I spoke with Melissa about coming to meet with Denlow in two days.
I received a call from Melissa later that same evening. She told me Denlow had died in his bed shortly after returning from the hospital. I immediately drove to their home and joined her in Denlow’s room. I noted the photo of me he’d taped to the wall next to his bed as I rested my hand on his now cold head. The journey had finally come to an end. Melissa and I comforted one another.
As Melissa and I collaborated to prepare the memorial service she spoke of her loss. In truth, Denlow’s passing represented a relief for her and her family. I knew from my time in their home how extraordinarily hard she’d worked to provide the care her husband needed. She spoke of how her loss was truly for the man whom she’d married and with whom she’d shared the years before his diagnosis with ALS. She had been grieving that loss throughout the years of his illness.
I never knew Denlow when he was healthy, so my grief was for the man in the wheelchair whom I visited each week for two years. He became a beloved presence in my life. I still think of him every Friday. Sharing his journey was a great gift for which I will always be grateful.