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.

Final Exits

Two weeks ago my mother called me and told me that someone that she worked with committed suicide. Last weekend someone at the Hospice I volunteer with committed suicide.

I did not know her very well, my few interactions with her were not particularly wonderful, and she was reprimanded for the way she treated me.

Even though logically, I know that my one encounter with her and the subsequent dressing down that resulted, did not cause (what was described to me as) a profound depression.

I can’t help but feel a little guilty. It was not the straw that broke the camels back, but it was no doubt one of the straws that helped.

One of the staff I spoke to today told me that the on going theme since they found out what happened and also at the funeral was “If Only”

“If Only” I hadn’t.
“If Only” I had.
“If Only” she told me…
“If Only”
“If Only”

I went to the memorial today and was struck by two things:
One: I seemed to be the only one crying. What am I? Some sort of “super suck”?

Two: And more importantly why had no one thought of putting some sort of professional help, crisis line phone numbers, support of any sort in place for the volunteers who may have been shocked and distressed by this.

Statistically, in workplaces and schools where a suicide has taken place a “copy cat” is likely.

What the fuck? Don't these fuckers read?

When I called the hospice last week asking about what had happened, the woman I spoke to said something to the effect of, “I guess she didn’t feel she could reach out to any one." That comment rankled me a little bit. Of course she didn’t feel she could reach out to any one. Any one who has ever been the slightest bit depressed knows that no one wants to be around you when your down. It doesn’t help that depression twists your perspective enough that little or nothing brings you pleasure and the brightest most hopeful of days look bleak.

They say that 50% of people have suicidal thoughts at some time in there lives. I don’t know if the woman I was speaking to that morning had ever had suicidal thoughts, but it seemed to me if she did, it was a long time ago. I think she lost touch with that soulless black emptiness that engulfs one at such times.

I’ve seen the edges of that ugly place, I pray that I, and you, and yours, never, never truly understands that level of despair.


And just in case you’re worried,
I’m fine, thank you.

A little pissed, a little freaked, but fine.

St. June

Early on the morning of Saturday April 14th, June Callwood, Known as “The Conscience of Canada”, Died.

My introduction to June Callwood was through one of her 30 books “Twelve Weeks in Spring” Twelve Weeks in Spring is a moving account of the formation of the founding care team that eventually grew in to Hospice Toronto.

As well as thirty books, June wrote 1500 magazine articles and 450 news paper articles. But she was best known for her activism. She founded Casey House, one of the first AIDS Hospices in the world, Jessie's Centre for Teenagers, Digger House, Nellie's hostel for abused women, PEN Canada, the Canadian Civil Liberties Foundation, and Feminists Against Censorship. She was awarded numerous honours, including more than 15 honorary doctorates, the Order of Canada, Officer, the Order of Ontario , the Canadian News Hall of Fame and the Toronto Arts Foundation Lifetime Achievement Award.

On Tuesday April 17th I joined some 1000 others in a candle lit procession from Jessie’s Center to Casey House.

I was saddened and thoughtful as I walked, holding my little lantern in my hand. I had always wanted to meet June Callwood. It wasn’t just the loss of a cultural icon that saddened me that night, Junes death was a symbol of endings of other sorts.

It struck me, as I walked, with a profound sense of finality that I have left behind a carrier. I will not earn my living doing in any form of social work. And while I am glad that I have made the choices that I have, and I am thrilled about my prospects with school and massage, I would have been damn good as a Volunteer Manager, or as a Client Services Coordinator. That boat has sailed.

The other thing that struck me is that emotionally I have left Hospice Toronto. I just have to make it formal by sending in a letter of resignation. For the longest time I thought that I was being too fussy about the way that the hospice has treated me, but I had a conversation with Pete Bevin that changed my mind. I told Pete about my experiences, how I felt, and the fact that I was thinking very seriously about leaving. I half expected Pete, whom received a great deal of support from the hospice when his wife was dieing, and subsequently became a volunteer him self, would tell me to hang in and stick it out.

He didn’t.

Pete told me that he agreed with me and he felt that something fundamental about the hospice had changed.

It wasn’t the same place any more.

I am hesitating to write that letter of resignation. Not because I don’t want to leave the hospice or I am afraid to express my opinion, (Quite the opposite I hope that by telling the hospice how I feel that hopefully some change my come about.)
I am hesitating because I have a client, a sweet 63 year old lady who is very slowly dieing of esophageal cancer. She really doesn’t need me around but she is lonely and I can see that I fill a void in her life right now. I may resign from the hospice but keep the client.

Sigh

On Wednesday I went to St Michael’s Catholic Church. I’m not a Christian, and certainly not a catholic, but Catholic Churches hold a certain air of reverence, ritual, (dare I say), Holiness. I can’t stand mass, because I fundamentally disagree with so many of the core edicts of Catholicism. But I like Catholic churches. The lingering smell of incense, flickering candles, the quiet, and the soft murmur of voices in personal prayer. I found a shrine to Saint Jude, patron saint of lost causes and lit a candle for June Callwood, Social Activist, champion of AIDS sufferers, pregnant teenagers, homeless children, abused women and so many other “Hopeless Causes”.

I sat in a pew, and meditated on my candle as it flickered to life. I never met June Callwood, and never knew her, but I am glad to have known of her.

Thank you, Saint June.

Goodbye Mrs O

A block away from my clients house I was accosted by the VON nurse who let me know that my client had died (She recognized me from previous visits). Me and the nurse exchanged pleasantries for a moment and I continued toward the house. A moment later my cell rang. It was the hospice calling they had gotten an urgent message from the family the night before, but it was left in the wrong mail box so they where just getting to it at noon. Could I please call back and tell them what had happened.?

I got to the house and Mrs. O’s Husband greeted me. Mrs O, was still in her hospital bed in the living room. Someone had tucked her in with a lovely quilt and she looked restful and at peace.

With red welling eyes, Mr O thanked me profusely for my help and promised to send the arrangement details to the hospice.

I felt almost guilty accepting his thanks. Mrs O was a very quiet, easy to care for client. She had been struck with melanoma that had metastasized to her brain. She demanded nothing and was very grateful for the very few things she would let me do for her. Most of the time I sat by her bed side and knitted while the two of us watched TV.

Goodbye Mrs O
Rest In Peace