Dave L

I was Annie’s partner for 31 years and for both of us every one of those years was filled with life, its joys, and its challenges. It was never boring. Our mutual love of the written word brought us together and rarely a day passed without my reading something out loud to Annie. Despite a series of seemingly unrelated health issues throughout her life, when we began our relationship, her life was filled with activity, cycling, walking the dog, and a social life that I found challenging. She was a well-known massage therapist with a client list that contained many household names. All that began to unravel when, about three years into our relationship, she began to experience pain and fatigue that had no definable cause. Annie’s own research led her to suspect fibromyalgia and chronic fatigue, but at that time the medical system had no clear diagnostic criteria for these conditions and it took two more years for the diagnoses to become official. By 1995, Annie had been forced to stop working and had begun to curtail many of her other activities.

In the early years her pain was episodic, sometimes with no apparent cause, sometimes with definable triggers. Almost from the beginning, Ann found the pain could only be managed by severely restricting her activity and she was eventually forced to seek relief from opioid pain medication. From its onset the pain was at times severe enough for her to voice the desire to end her own life if it became much worse.

Between 1995 and 2010, there was a gradual decline in her ability to live a ‘normal life’ and by 2010 she had to give up her favourite activity, walking the dog. The inability to exercise led to other painful conditions, severe arthritis in one hip and spinal stenosis. She developed diabetes, which would lead to neuropathy that, in the last three years of her life, became one of the dominant sources of pain. By 2014, she was 80% bedbound. By 2016 she was unable to negotiate the stairs, and by 2017 she couldn’t take a bath. In 2019, she was having difficulty in making it to the bathroom on her own, and in that year,she applied for MAID for the first time and was refused on the grounds of not foreseeable death.

In July of 2021, she attempted to take her own life. When this failed, she was persuaded to apply for MAID again and was successful in being granted Track 1.

For various reasons, Annie’s journey through MAID took longer than she would have liked, about two months between acceptance and her death. Two notable things happened; immediately after she was accepted, her pain became worse, and her energy level became much higher. As her full-time caregiver, thanks to COVID, this had far bigger impact on me than I anticipated or even noticed at the time. Even with the help of Emily, our loving friend and caregiver, caregiving at this level depends on a fine balance between the needs of the person being cared for and the energy available to the caregiver. The increased pain required more caregiving, and the extra energy meant less rest, a combination that we could have dealt with better had we seen it coming.

Knowing, without fear, when and how you are going to die is a rare gift given to few people and this experience gave us both deep insights into how misunderstood and how poorly death is handled in this world. “Death is so ordinary,” Annie said, in the middle of some routine caregiving, and she was right. We all die, but we push it away until the last minute and then it is too late to do the things that should be done and say the things that should be said. Annie spent those two months assembling packages of photographs, old letters, and possessions she wanted her friends and relations to have. She shared her journey in many conversations. “Who else gets to attend their own memorial service and hear all those nice things people say about you?”

On her last full day, Annie woke at 8 a.m., without pain and full of energy. It was the best day together we had had in many years, a beautiful sunny afternoon on the deck, reflecting, reading poetry, laughing. In the evening we sat in her window and watched the harvest moon. At midnight she sent me to bed so she could make some phone calls.

The next morning, she woke early, still out of pain, but with less energy. The MAID process was due to start at 1 p.m. and while I prepared her room, she lay in my bed. When I was done, I joined her and joked about a note I’d found that said, “When I’m gone, the drains need bleach.” There was so much ease and love lying together for the last time.

When the time came, the MAID provider asked Annie again if she wanted to die and without hesitation she answered, “Yes!” As I held her hand and looked into her eyes, her joy at finally being free of the pain that had held her in its grip for many years was so apparent. In her final moments of consciousness, her last words were, “I love you. Don’t forget the bleach.”

We offer deep gratitude to the caring support of the MAID providers who helped us on this journey and for the loving support of family and friends.

Afterword: Unshackled from the body, Annie’s spirit is still with us. A week after her death I received the first of several cards expressing her love and reminding me of the things I must do. On Hallowe’en, Annie’s favourite celebration, one of her friends organized a pumpkin parade and dressed in costume we placed jack-o-lanterns on her grave. Who knows what next year will bring?