When my husband left this world in the twilight hours of May 25, 2022, he roared like a lion. His arms were stick-straight, precisely parallel to his body, fists clenched and holding a posture not unlike a daredevil cliff diver heading feet first into some sort of otherworldly, aquatic abyss.
It was a frightening, beautiful, and fully fitting exit for a wildly charismatic, lifelong musician who had already been described as a living legend many years before he was diagnosed with the laryngeal cancer that took his life.
He had been battling that horrific disease for 18 painful months and was under in-home hospice care for six weeks. I was alone with him when that roar erupted from the hospital bed in our living room: a cold, clinical apparatus I attempted to warm and soften with yellow roses, flickering candlelight, photos of loved ones, and the faintest sounds of classic country music emanating from our stereo.
As appropriate as that roar was, it was also the final punctuation on an agonizingly long, painful, and traumatic sentence. So long, painful, and traumatic, in fact, that nearly every hospice worker that entered our home remarked that they had never seen a death process so difficult.
During the last six weeks of Al’s life, he had a pain pump delivering a continuous stream of Dilaudid directly to his bloodstream and was receiving strong doses of Thorazine every few hours to control his terminal agitation, a heartbreaking end-of-life condition that leaves a patient drowning in inexorable anxiousness and confusion. I was also giving him multiple syringes of liquid morphine every hour and constantly rotating cold compresses from his head to his chest in effort to control the relentless fevers which further fueled his terminal agitation.
This avalanche of pain medications caused cascading side effects simply too horrific for me to restate here and worst of all, they weren’t sufficiently alleviating his suffering. Al’s cancer had spread ruthlessly to his chest cavity and beyond, creating pathological fractures in his ribs and settling most cruelly around his pelvis and tailbone, making virtually any position excruciating.
Toward the end he became a major fall risk because he would wake up in pain, stand up to relieve the pressure on his tailbone, gripping whatever was in front of him for stability until he’d fall asleep again and totter over, crashing to the floor. I took to sleeping at his feet with my arms interlocked around his legs to prevent this.
For months prior to his death, Al and I had countless candid conversations about the inevitability of his death and what he did and didn’t want. Al wanted to live more than anyone I’ve known, but his life had essentially already been taken from him. His cancer was incurable. There was no light at the end of the tunnel, just a locomotive of anguish heading our way.
Understandably, he did not want to suffer even more after nearly two years of surgery, radiation, chemo, and immunotherapy. Aside from not wanting to endure that suffering, he did not want me to be traumatized by assisting and witnessing a protracted, difficult death. If the life he loved was being ripped from his hands despite his dogged, determined fighting, it only seemed fair that he should have some way to control his own death.
As articulated by the nonprofit advocacy organization Compassionate and Choices, medical aid-in-dying (MAID) is a “trusted and time-tested medical practice that allows a terminally ill, mentally capable adult with a prognosis of six months or less to live to request from their doctor a prescription for medication they can decide to self-ingest to die peacefully in their sleep.”
MAID is sometimes incorrectly referred to as assisted “physician suicide,” “physician aid in dying,” or most agregiously, “euthanasia.” MAID is not assisted suicide or euthanasia. These terms are misleading and factually incorrect.
With the help of our death doula, we educated ourselves about any and all assisted end-of-life options in and outside Arizona. At one point we considered working with Final Exit Network, a right-to-die organization that provides guidance and consultation for patients who live in states without MAID laws. We felt immense relief and a sense of hard-won empowerment.
On our way to have dinner with my parents that evening, we began discussing how essential it was to have right-to-die options and that more people needed to understand why it was so essential. Impassioned and emphatic, Al told me to be sure his obituary stated he had died via medical assistance in order to raise awareness about the importance of this option — that this choice was humane, honorable, and something that should be the right of anyone facing a terminal illness.
But after further research, we concluded that the murky methodologies of Final Exit Network didn’t sit right with either of us. The heartbreaking fact is that Arizona currently has no legally sanctioned MAID options, even in cases like Al’s where a person is experiencing nightmarish and unnecessarily drawn out pain and suffering.
Because of this absence of humane options, Al suffered unspeakable horrors at the end of his life and I’m now as traumatized as he feared.
Al’s death may have been a tragedy, but his life was a triumph.
Over the course of his 50 years on this mortal coil, Alan Lewis Curtis overcame a bleakly violent, impoverished childhood in Hyde Park, Boston and went on to live a richly adventurous, extraordinary life, primarily under his stage name, Al Foul.
He toured Europe for decades and gained a particularly devoted following in France. His reputation for charming showmanship and ribald humor made the mayhem of his performances unforgettable and eventually iconic.
Initially as Al Foul and The Shakes shortly after he arrived in Tucson, and eventually as a one-man band augmented by a rotating cast of supplemental players, he grew a regional following and a reputation for mind-bendingly raucous live shows. Annual European tours weren’t just a step up in his career but an important enhancement of his character. He credited overseas travel with expanding his cultural horizons, cultivating an appreciation for the visual arts, and perhaps most notably, teaching him to be more polite and express gratitude.
His brash stage persona belied his sincerely sweet, disarmingly sensitive side and it was this unexpected hybrid of traits that drew me to him when we met on the porch of a house party in Tucson and fell in love in the fall of 2015.
He adored animals and antiques and had little tolerance for the conventional trappings of modern masculinity. He believed men should shine their own shoes and suffer no fools and also operate with integrity and open minds. His naturally inquisitive nature and memory for colorful details made him an unparalleled, epic storyteller. He had an uncanny knack for commanding the room at social events but always took the time to engage people personally. Introducing himself and saying “please” and “thank you” mattered to him.
When he moved into my casita within the downtown feminist arts compound Casa Libre, he and our lesbian-poet landlady Kristen Nelson became fast friends. In May of 2021, after Al’s cancer had metastasized and we knew his life would be ending far too soon, Kristen married us in the backyard of the little pink house we had bought in Barrio Santa Rosa. It was our way of raising a middle finger to the Grim Reaper loitering on the corners of our life and grabbing a celebratory moment of happiness with our closest friends and family while we still could.
Shortly after his initial diagnosis in 2020, Al underwent neck dissection surgery, a complex procedure that is just as grotesque as it sounds. This was followed by weeks of radiation directly to his throat, burning the skin over those newly formed surgical scars, and annihilating his taste buds. His weight began dropping and developed chronic anemia that left him perpetually exhausted and cold, even in July. Then came rounds and rounds of chemo, but the cancer just kept blowing past everything.
I was watching a monster eat the love of my life alive right in front of my eyes. One particularly direct nurse looked at his tumor growth markers and said, “Honey, anything that grows that fast is bad news.” Al appreciated her forthrightness, but we were both starting to feel the walls closing in.
Our hail Mary came in the form of two different immunotherapies that kept the monster at bay long enough for us to enjoy one last holiday season. Al’s father had callously canceled Christmas when Al was just eight years old, whereas I’m an over-the-top Christmas nerd. We were able to make up for his lost holiday years and he loved every cookie-making, “Die Hard”-watching minute of it.
In preparation for the inevitable, we had begun working closely with Staci Snyder, a compassionate and wise death doula from Farewell Consulting. She helped us navigate the bewildering world of in-home hospice care and the multitude of spiritual, legal, and fiscal components that would accompany the logistics of dying at home, which was Al’s wish and one I was fiercely committed to honoring.
Having a death doula on our team was probably the smartest decision we could have made. Staci had been a hospice social worker for years before she became a doula and just knowing we had someone on hand who possessed institutional knowledge of the systems, options, and obstacles heading our way allowed us to enjoy what time we had left in some incredibly beautiful ways.
Al took up painting almost immediately after he received his terminal diagnosis and his brush skills blossomed at an astonishing rate. First it was crude renderings of the trailer in our backyard, then still life studies, postcard-sized portraits of roadrunners, and soon he was spending hours painting a meticulous detailed, large-scale painting of the train that ran under the bridge by our house. Even as pain management became the ruling beast in our home, Al found comfort in working on a series of paintings based on photographs he had taken of his beloved “Tequila Taxi”— a 1954 Chevy Bel Air he had owned for decades.
He played two final shows, one in Bisbee and the other in Tucson. To protect his already strip-mined immune system they were held outdoors, and the audiences kept small. His last performance was on the patio at Che’s, shortly before Christmas. He was in so much pain that day but the photos reflect the joy he had in being able to take that final bow with grace and dignity.
If only he had been afforded that same grace when it came to leaving this world five months later.
“As with other terminal clients of mine who experienced tremendous suffering for weeks or months longer than they had hoped for, I was angry that MAID was not an available option for Al here in Arizona,” recalls Staci when I ask her to reflect on her time working with Al and myself. “This is not euthanasia. The terminally ill person must qualify for the prescription after being assessed by two doctors. They must be of sound mind with the ability to administer the medication to themselves. There are many legal, ethical, and medical safeguards in place to qualify.”
“Choosing a death with dignity should not be seen as a person wanting to end their life. Most individuals seeking out a death with dignity desperately want to live and therefore using the word suicide is not appropriate.”
Al wanted to live a long life and had been looking forward to doing so. He had settled into a quieter rhythm in our home, making increasingly beautiful handmade furniture for a small list of lucky clients, tending to our garden, doting on our geriatric cat George Bailey. He also fed the birds that flocked to our yard every morning, a ritual that seemed to put him in an exceptionally peaceful frame of mind. It was not uncommon for me to be immersed in work at our dinner table and he’d bound in from the yard, boisterously announcing, “I love our home, I love our life!”
Medical aid-in-dying must be viewed as a human rights issue, not a moral or religious debate. Where is the morality in dragging our feet when we have the power to alleviate so much suffering?
One of my most vivid and agonizing memories of Al’s death took place after he’d had what would be—unbeknownst to us at the time—his final meal outside of our home: oysters and cold white wine with friends at San Agustin.
When we returned home, he sat down on a beautiful bench he had made in our living room, put his head in his hands and wept a river of tears unlike anything I had ever seen. “I just don’t want to go,” he said. “I love you, I love my friends, I love our life. And if I have to go, I just don’t want it to be awful on the way out.”
Al has been playing Che’s since they first opened in 2000 and it is indisputably his spiritual musical home, which is why we will be holding his public celebration of life there on Saturday, October 15.
In addition to live performances of his songs by local musicians who loved him, I’ve invited activist organization Arizona End-Of-Life-Options (AZELO) to have an educational table on site to share information about how and why we must pass MAID legislation in Arizona.
AZELO is working toward passage legislation is modeled after time-tested laws already in effect in Oregon, Washington, California, Colorado, New Mexico, New Jersey, Vermont, Maine, Hawaii, and the District of Columbia (Montana also has it by court decision), but community involvement is essential to get this on the ballot and voted into law.
My hope is that we can celebrate Alan Lewis Curtis’s extraordinary life with all the revelry, love, and loud music it deserves while also letting the injustice of his suffering elevate the dialog and urgency to pass MAID legislation in Arizona.
It’s what he would have wanted.
Foul Fest: A Celebration of the Life and Legacy of Alan Lewis Curtis w/Kid Congo Powers, Golden Boots, Birds & Arrows, Naim Amor and others
WHEN: 5 p.m. doors; 6 p.m. program starts Saturday, Oct. 15
WHERE: Outdoor stage on Seventh Street next to Che’s Lounge
COST: Free; 21 and older