Some years ago I volunteered for hospice Toronto and worked with a woman who had ALS. She was an acquaintance that I knew outside of the hospice. Volunteering for her saw me doing everything from washing dishes and cleaning cat litter to lifting a woman (significantly taller than me) in and out of a wheelchair and feeding her through a “J-Tube”. In my time working with her I organized a fundraiser for her. With the help of people like Roben Goodfellow, Stephanie Lang, and many, many others, we successfully raised just over 12,000. I found a path to a new career. I learned many things and gained some perspective on some others.

After a 16 year battle with a disease that usually kills within two years, She died yesterday just before noon Toronto time.

She died about one hour too soon for me to visit her one last time.

I’m not terribly broken up about the fact that I did not get a chance to see her one last time. By all accounts she was not conscious and would not have been aware of my presence. And in truth I said goodbye to her quite some time ago.

Working with the dying can be a richly rewarding calling, but it is not for everyone and it is not always easy. When I first thought of someone “dying at home” an image came to mind of a united peaceful family gathered around the bed of the patient, incense and candles burning softly, harp music in the background.
The reality is not so pretty. The family is devastated, the patient is in pain, sometimes so weak and incapacitated they cannot toilet themselves.

The smells are not of incense and candles.

Unlike in the book “Tuesdays with Morrie” the dying patient is not necessarily at peace with their fate. My ALS Client was not ready to die. She fought death with a tenacity and spirit that was a wonder to behold. She chose interventions that I would not have tolerated, choosing to live with a respirator and a feeding tube rather than let death creep forward any faster than she could beat it back. I believe she lasted as long as she did because of the sheer force of her formidable will.

Even though I did have a chance to say goodbye to her there are some things I would have like to say again. I believe it’s possible that she may still be able to hear me. If that’s the case then this is my message to her:

I want to thank you for the time we had together. Even though it wasn’t always easy, it stretched me and challenged me and in many ways shaped me and changed my life.

You inspired me to create the fundraiser for you, we raised over 12,000 dollars and got responses from your former PR clients including Phill Collens, Liam Neeson, and Loreena Mckennitt. I saw astounding examples of generosity, kindness and altruism. I discovered leadership and organizational skills I had no idea I possessed.
You inspired me to go outside of my comfort zones to take on challenges. You also taught me to say no, to take care of myself, to define and stick to my boundaries. Through work I did with you I discovered that I was happiest when I was helping people and that lead me to the career I have now.

You made me think about my own mortality, and inspired conversations with my family and loved ones about our thoughts and wishes regarding resuscitation, end of life care and funeral arrangements.

I can’t say that I would have made the same choices that you did but in your presence I was reminded to not be judgemental, and to be respectful of someone else’s wishes, choices and beliefs.

In end I hope that life was not so much a battle, and that fear gave way to peace.
Rest well.