May you rest in perfect peace, Sean Patrick Tagert (Sept. 14, 1978 – Aug. 6, 2019). Sean passed away peacefully at his home in Powell River, B.C., surrounded by his family and loved ones, shortly after 3 p.m. yesterday. He was perfectly lucid, having refused most painkillers, and courageous to the last.

Sean was diagnosed with ALS in March 2013. For years he endured the steady deterioration of his abilities, until suffering cardiac arrest in late Oct. 2017. He was resuscitated and placed on a ventilator, and lived since then on life support, completely immobile, communicating only via an eye-tracking computer setup. Finally, with his health rapidly deteriorating, Sean opted for a medically assisted death. His family gives special thanks to those medical professionals who helped ease his suffering with grace and steadiness. The family would also like to express their heartfelt gratitude to Dr. Stephen Burns, Sean’s longtime doctor, for his continual care and devotion; to Jennifer Goodson, Sean’s occupational therapist and a ray of sunshine in dark days; to the many caregivers who lovingly tended Sean’s needs over the years; and to the ALS Society of British Columbia and the Caya Society for their support of families in crisis. Per Sean’s wishes, there will be no funeral or memorial service, but those who would like to remember him are encouraged to donate to these organizations.

Ensuring consistent care was a constant struggle and source of stress for Sean as a patient. While he succeeded, with the help of many, in piecing together a suitable care facility in his own home (including an expensive saliva-suction machine, needed to prevent him from choking, obtained with the help of donations raised online), gaining the 24-hour care he required was extremely difficult, especially as the provincial government refused to fully fund home care. The few institutional options on hand, Sean pointed out, would have offered vastly inferior care while separating him from his family, and likely would have hastened his death. We would ask, on Sean’s behalf, that the government recognize the serious problems in its treatment of ALS patients and their families, and find real solutions for those already suffering unimaginably.

Those who knew Sean will remember him as particularly funny, active and vibrant. As a kid he was always one to take a dare, delighting in tricks on his BMX bike, skateboard or snowboard. He always kept himself fit; in fact he first noticed something was wrong physically because when he was weightlifting, one side of his body seemed to getting weaker rather than stronger. He was extremely capable, working as a large-engine mechanic, and loved cars, in particular his 2001 Honda S-2000, tearing around with the top down and music blasting. Even when he had lost the ability to speak, he retained his sense of humor, recording a Youtube video of himself in the hospital drinking a Guinness via his feeding tube.

While born in Texas (his father is American), Sean spent most of his life in Canada. He grew up in Mackenzie, B.C., and worked in the sawmill until moving away to Edmonton, Alberta. Raised as a Jehovah’s Witness, Sean met his wife, Sharlene, at a dance organized by congregation members there. Soon they had a son, Aidan, the light of Sean’s life. Later the family moved to Arizona, where Sean developed a love of Mexican and Latino culture, food and music. After four years there, the family decided to return to Canada, living first in Langley, B.C., and then Powell River.

Above all else Sean was devoted to his son, Aidan (who is the spitting image of his father, in appearance and personality). Sean often said that Aidan was his reason for living, and had a close relationship with him right to the end. In fact some of Sean’s last words of conversation (via his computer), in the very hour of his death, were to and about Aidan. Aidan and Shar were talking about a vacation the family had taken to Mexico, and the food they liked, and others chimed in to discuss Mexican versus Hawaiian papayas. “I love papayas,” Aidan said.

“I don’t think it was papayas,” Shar replied. “I think it was mangoes from one of the street vendors. You ate like three of them.” And Sean wrote:

You lovvved the Mexican mangoes with the chile spice
the vendor was amazed
it was
like an animal at a bone

Of course he said more, over and over expressing his love for his family. We love you too, we replied, holding his hands, rubbing his arms and shoulders, kissing his forehead. We always will.