Kirt Wyckoff died on Monday, October 20 th. at 6:30 p.m. The wound left in the universe is filling in with memories and stories about him – some wrenching, most hilarious – about this young man who will never be forgotten. Kirt would have been 42 years old on October 23 rd. We spent time together three days before his death, where he was bright-eyed and alert. His room reflected the themes that made him smile: Ozzy Osborne, Beavis & Butthead, music, hot cars and fast motorcycles. But next to Ozzy were reminders to breathe, reminders to be calm. We looked at old photographs together: a mischievous boy climbing trees, being goofy, playing with his adorable sister Stacey, and his long haired mom…..a teenager riding bikes and motorcycles, clearly loving the speed and agility provided by the wheels and his expert handling…..a happy boy wrapped around his wriggling dog.

This boy turned into a young man with ever-changing hair styles on head and face. A “ Cleveland metal head,” he loved the music of Rush, The Scorpions, Iron Maiden and Ozzy. He was cool with dark shades and a beautiful girlfriend on his arm.

High school led to 11 years of service in the U.S. Navy. Kirt was called for Reserve duty in the Persian Gulf in 1990.

In hindsight we are so wise. Looking back there were subtle signs – little vocal tics, preoccupations….

Suzanne had left Kirt and Stacey’s dad, John, when Kirt was 10 years old. The only information about John filtered to Suzanne from her sister-in-law, with whom she remained in touch. Tragically, Suzanne learned of her sister-in-law’s illness and ultimate death from Huntington’s disease in 1984.

When Kirt returned from the Gulf in 1991, it was believed he might have suffered from a toxic exposure, with the onset of seizures and a stiffness of gait and problems with balance. The war can certainly impact mind, body and spirit.

With the understanding that HD was in the family, Kirt underwent a neurological evaluation at the Cleveland Clinic, which supported the diagnosis of HD. In August of 1993, Kirt joined Suzanne, Stacey and Stacey’s husband to be in San Francisco . In April of 1996, DNA analysis confirmed Kirt’s diagnosis. In January 1997 Suzanne found out from Social Security that Kirt’s dad had died on 10-30-96 of HD.

Kirt’s wheels served him well for years – the speed and agility of motorcross and his all-terrain bicycle were gradually replaced by the stability of walkers and wheelchairs – a 20 year history of sabotage to a body once exuberant. The competition turned from actual to virtual, with Kirt becoming a master video game player.

The wit and humor, sly smile, charm and playfulness remained. Kirt was a born prankster. He nailed it every time with one- liners that rocked the room.

In July 1997 Kirt’s needs required another change and he moved into his own room at the VA Hospital. He was still quite able to visit home, attend workshops and support groups, loving the socialization. His friends and family were always there, with food, music, games and movies. It was never a chore to see Kirt because he did not complain – he did not feel sorry for himself nor did he blame others. You felt full after a visit, never depleted. He had good days and terrible days. His medications tried to keep pace with the relentless progression – the tremors were as disabling as the rigidity. At some point, even wheelchair access was too difficult. Kirt’s world narrowed to his bed and the amazing people who felt blessed to help care for him. As Suzanne would say, Kirt was an “angel magnet.”

His doctors, nurses and adjunct therapists at the VA were amazing. Combined with the integrative approach of massage, acupuncture and visualization, Kirt’s life was rich with color, textures and nuance.

Each time Kirt became sick, the end felt close. But Kirt wasn't ready. Kirt wasn't ready until the fall of 2003. It had clearly stopped being fun and Kirt started preparing for the most gracious demise – with the support and understanding of his family, friends and Suzanne.

Suzanne and Kirt - Peanut butter and jelly. Suzanne and Kirt understood each other with such perception it was palpable. Their partnership bristled with humor, compassion and brutal honesty. Suzanne had provided Kirt with a life worth living. She fed him and made sure that when she could not be there, he would be fed with love and patience. She arranged all the adjunct care – seeking every possible treatment from traditional western medicine to vitamin supplements to esoteric devices.

Suzanne and Kirt never gave up hope until Kirt clearly expressed to her that it was time. And then Suzanne gave her son an invaluable gift. Her energy shifted to insure that his wishes would be honored. Through the wisdom and love of his Nurse’s Aide, “Mama Lilly,” and Dr. Cantwell, Kirt embraced a spiritual path that dissolved his fears. One wall of his room was adorned with a rendering of Jesus, surrounded by flashing, colorful lights. There was no doubt that his newly found spirituality provided Kirt with the strength and courage to say goodbye. He was happy to imagine himself an angel, playfully guarding his mom.

As Thomas and I left the VA that Friday before his death, I kissed Kirt’s sweet face and asked him if there was anything he needed or wanted. Kirt and Thomas looked at each other, and, as though it were a treasured ritual – a well rehearsed prank, Thomas winked and said, “He wants you to send in the dancing girls!”

Kirt died peacefully with his mom and best buddy, Steve by his side.

Kirt is loved and missed dearly.

Andrea Zanko, MS, UCSF