August 22nd, 1991. St-Mary’s Hospital. Mother and son (me).
When my mother asked me to write the second part of her final blog, I knew that it would be my eulogy to her.
In her last blog, she describes her many losses. The gradual decline of her health, quality of life, and autonomy. I know from our conversations that this chipping away at her ability to live was the most emotionally taxing part of this whole experience.
For me, they represented a sequence of little deaths, each accompanied by a period of grief.
I mourned my mother’s ability to ever feel well and healthy again, and gained a deeper gratitude for the privilege I still possess.
I mourned my mother’s mental clarity, what she called “Chemo Brain”. A very real and disheartening phenomenon.
I mourned the deterioration of her physical strength, and her appreciation of her own luminous beauty. First with the effects of treatments on her hair, then the inescapable indignity of a wonky colostomy bag.
It was hard to see my mother’s ability to read and write without hinderance slowly vanish.
Harder still, I mourned my mother’s ability to live a pain-free life. That is, until she was placed in palliative care.
But I was also witnessing something awesome.
After four years of suffering, anxiety, and cancer eroding my mother’s mind, body, and soul, I discovered what remained; who my mother really was at her core.
Despite it all, the woman I visited in room 105 was kind, patient, easy-going, and generous. She was lovely. She was love distilled. Not only did these parts of herself survive the process, but the darkness in which they were set made them shine brighter. The bitterness, and the resentment at the cruelty of life that was robbing her of her future, weren’t there. She had her moments of sadness, of shuddering under the weight of all those losses, but these feelings inevitably passed through her.
My mother in palliative care. Photo taken by me, Christian Daoust.
Among my mother’s many passions was teaching. I would say it was her calling, one she found later in life. She was the kind of teacher who got to know her student’s life stories. The names of their partners, the names of their children, and grandchildren. The trials and tribulations which led them to leave their home countries and come to Quebec. Here’s a little story about my mum.
Years ago, now, she was beginning her career teaching French as a Second Language at an adult education school. It was mid-December, almost the end of term, and she heard that a student of hers–a young single-mother who was struggling to make ends meet–couldn’t afford to buy her child Christmas presents. The very same day, my mother went out and bought some. She wrapped the presents, and brought them to the school’s director, requesting that they be given anonymously to her student. She told no one about this. The only reason I know it happened is because I was home when she walked in with the packages.
In the grand scheme of things, this small act of kindness is just a drop in the bucket. It certainly didn’t rescue this woman—my mum’s student—from her difficult circumstances, but it did ensure that a child would feel special on Christmas, and I can only imagine how important that is to a parent.
Photo taken by me, Christian Daoust.
With my mother’s passing I have lost more than a parent. I have lost a great friend (my very best friend, in fact), a confidante, a font of wisdom and love, my writing partner, my ideal reader, and a vital part of my support network.
The two of us on Portobello Road, London, UK. 2015. Photo taken by me, Christian Daoust.
I think that for all who knew her, she was more than one thing. Always more than just a friend, a teacher, a sister, a daughter, a neighbour. If nothing else, that’s something remarkable to aspire to.
I love you, mum. The best in me, came from you. Au revoir.
The following was dictated by my mother, Michelle Payette Daoust, between April 7th and May 19th, 2022 in room 105 of the Vaudreuil-Soulanges Palliative Care Residence. She passed away on May 22nd at 17:40. She was surrounded by people she loved, and who loved her.
Taken by Francis Séguin.
So much time has gone by since the last “Moonshadow” approached and I thought I would be unable to finish this blog.
The reason is that I’ve become a palliative patient.
Here I am in a place I would never have imagined. And I know, now, that I can share with you and tell you what I’m living. That it will make you feel good.
It’s interesting how, as I come to the end of my life and of my story—of “this is moment”—what I’m short of, what I am having a hard time finding are the words to describe this experience of moving towards death. Yes. But moving towards something else too. A something I never expected to find.
So here I am, edging closer to the end of my life, which I can’t quite feel yet because of all the meds, and all the wonderful power of care. It has created the illusion that I can remain in stasis, in a kind of never changing, always peaceful, state of being. But that isn’t the way we die. We die incrementally. I will slowly begin to lose the things that keep me in this world. Eventually the tumors and everything else will create pain so strong that palliative drugs (which I hope will work) will knock me out and I will start to just disappear.
I have begun living with this backward count of saying; how long can I feel this way? Well, how long can things continue along this path? It’s a matter of time before losses make themselves more known and unavoidable. Well, what do I do about that? I think mostly I just have to keep steady where I am and do the work with Christian over the next two, three, four, five, however many days I can squeeze out before illness and pain push me beyond the boundaries of being able to do what I want to do.
These thoughts are starting to intrude a bit because it starts to feel unreal to be here and to feel so well. In fact, of course, I don’t feel well underneath the medication. My body is very sick and I’m being spared a lot of suffering by some very good medical practice. The truth is that I’m in deep shit. I’m in trouble here in this chair where I record these words.
If someone were to simply walk away with the little pump that keeps me in such good equilibrium, everything would be gone. Everything would have been taken from me. I have to remember that, right? That this medicine is keeping me in this beautiful place, helping to keep me here as myself. These thoughts are intruders, intruders that can disrupt the peace I feel. I’ve come to realize that this peace is the only gift I want to give to the people around me. Perhaps that’s how I should frame things from now on; not being so focused on what might be taken away, simply living every heartbeat of my present condition. And feeling gratitude.
I am trying to put into words this jump from living with pain and loss, to living one of the most wondrous things I’ve ever experienced in my whole life. With this very last blog I hope to share with you whatever insight I’ve gleaned from this experience in palliative care.
In this building you know you are accompanied. There are other people making this journey parallel to yours. But it’s private. Our doors can stay open or our doors can close. We can ask for either, and it will be respected. But even though we know that we’re not alone, we’re basically all moving through time in this house, in this home, in a way that we’ve never done before. I’d love to try to explain to you how changed I am by my living here and how unfathomable it is to me that this should have happened almost instantly and so easily. One moment I was in our house and everything was painful, not from a care point of view, but just from the situation. And the next moment that was over. I say it over and over because I don’t remember how, I don’t know how that happened. I do in a basic sort of way, yes, getting meds straightened out and putting people into palliative medicine. I understand that. But so much more has happened to me. And I’d like to share it with you. I think it’s important.
Taken by Francis Séguin.
Falling
How exactly did I end up in palliative care? Well, about a month ago now, I was going up the stairs to my bedroom, and my left leg just gave out under me. I fell backwards down the stairs and hit the floor like a bag of bricks. After a trip in the back of an ambulance, and a night in the Valleyfield Hospital Emergency Room, I was told I had fractured my collarbone.
Though painful, and unlikely to ever heal, the broken collarbone was an almost incidental development. What wasn’t incidental was being presented with the fact that I couldn’t live at home anymore, that I was palliative. It was too much, and too difficult to transform the house into something where I would feel safe. I also realized that it wasn’t fair for me to put Simon (and Cindy) through the stresses of what could happen to me every time I tried to get up from my bed, or from a chair, or from the toilet.
My whole existence has been pain management for the last couple of months, going from the sofa in the living room, to my bed, and back to the sofa. And that was enough. Without any of the details, most of which were unpleasant and took place in an overwhelmed hospital, I wound up here back in Hudson, back home, except not my home with Simon and Cindy, but my new home in palliative care, at the center.
I don’t remember how I arrived at the Palliative Care Center. I don’t remember if it was in a car or in an ambulance. I don’t remember the day. I don’t remember the weather. I don’t remember what I was wearing.
I have no memory of not being at my house or leaving our house to come here, which is just a few minutes down the road. My sons would tell me easily how it happened and how I was. But it’s all a blur to me. What matters was arriving here in palliative care, in this beautiful little town of Hudson. In a building hidden behind trees and making itself quite discreet despite its size. And everything begins here. A new roof. I seem to have fallen out of time.
Losses
If you’ve been following this blog for any time, you’ve, of course, realized that what I’m talking about is a series of losses. Some of them I’m experiencing because of cancer, but not just because of cancer, because of cancer treatment, because of an experimental treatment forcing me into a stricter scientific environment. This meant rarely deviating from the path that Bristol Myers Squibb—the sponsor—wanted me to follow. The latter became increasingly difficult as the years went by, just as the losses have also been incremental and devastating in their own right. Ever since then I’ve been followed by a moon shadow. The first loss has been the inability to live outside of pain. The tumor in my rectum has been causing, very serious, very debilitating pain. There was a question of me returning for radiation treatment on the fourth basement of the CHUM. And I did go.
All of this happened at the same time as the accident, the fall that eventually led me here. If you look at losses, well, some of the most painful ones have not been loss of mobility or those kinds of things, although they’ve been terrible. Not being able to help, and not being able to be a full person in this house with the people I love who could have for years and years and years counted on me to be there when they needed my help.
The first loss was my vision. As I speak to you, I’m blind in the right eye, and my left has developed some serious issues. The result of all this is that I can no longer sit in front of my computer and write, or read. That I can’t read should’ve been torture for me, but because it happened gradually, I was able to adjust to it as it happened with the help of audiobooks. But not being able to read, specifically reading over my own writing has meant that I can’t write, or make notes. My good eye fatigues and I can never see my laptop screen properly. The kind of “writing” that I can do is by recording my voice on my phone, and relying on Christian to transcribe it for me. This is what I’m reduced to. That and also reduced to a very porous memory and a lot of difficulty keeping things very clear in my head. It’s a little more like Swiss cheese. The dreaded “chemo brain”, has evolved into “end of life pain management brain”. And so here I am trying to finish the blog, the final blog of this journey and having been robbed of most of the tools to do so.
This same cocktail of drugs that goes into me also has the effect of making me feel sleepier. Its delivery mechanism is ingenious, though. It’s just this little box that we put in a pouch, and this little box has a syringe in it that sends little shots of medicine into me every 10-12 minutes or so. I want you to know, to understand how many obstacles we’re trying to get over and around to get to the end of the story. Loss of eyesight, loss of the ability to write, loss of the ability to read and then mobility. Right now, I can still walk but I can’t get out of a chair by myself. I have to call and ask for help so that I don’t hurt myself. All of these things are more serious to me than any other loss.
Taken by Francis Séguin.
Nests
When people come into my room for the first time, whether it’s staff, whether it’s a mistake, whether it’s family or some kind of outside support, everyone reacts the same, which is that they let out, “Oh, my God! What a beautiful room!” At first, I thought, it had everything to do with the dozens of beautiful bouquets, and the collection of potted plants that I’ve received from friends, family, and even people I’ve never met before in person. And it’s true that people were struck by the flowers, by the color and the fact that it didn’t smell like that sort of cloying flower water that needs to be changed, but that isn’t the whole story. It was very subtle and lovely.
As time has gone by, the room has been decorated more and more by my sister Danielle, by Penelope and Graham, by everyone and anyone. Now, no matter which wall you look on, there’s something beautiful to see. My grandson, Graeme, must have spent a whole afternoon on a Sunday or Saturday creating a poster with all kinds of pictures of the times that we spent together, the three of us, and of course, all the other people they love. But the three of us, which means a lot to me. It’s important to mention that this feeling of walking into this room and everyone feels it’s warmth and everyone feels what a good place it is, thanks to the thoughtfulness of my sons, my grandchildren, my beautiful and talented daughters-in-law Anne and Vickie.
It’s a beautiful spot. It’s a beautiful nest. And I’m very lucky that at this time of year the birds sing right next to me through the beautiful bow window in my room. They are busy making families of their own. My own family is already made, and has been made for quite a long time, and is rich, and is deep, and, for a while longer I’m very happy to say, is mine. I can’t have more than four visitors in my nest at the same time, but I think that arithmetic applies to a lot of the birds outside too.
Tears
Tears have a different meaning for me now. They‘re often filled with a sudden and strong emotion—which rarely carries with it sadness.
It’s almost always beautiful or a little overwhelming: something more that my mind has brought up to the surface. All of a sudden, I get this lump or perhaps a cheeriness and something bigger than both. And I just hope that the people around me understand what it isn’t, and why I reach out to it all with such awe; with such eagerness.
There was one night, it was about two in the morning, I think, and I had woken. There’s a nurse here named Francis. If I say Francis, it sounds like a woman’s name, but Francis is very much a masculine French name. And he’s very young.
He’s twenty-three, which means that he was sent straight out from a CEGEP (from his college training). He got right smack into COVID in the worst possible circumstances because it would have been three years ago. Eventually, he worked his way back here to palliative care, where he’s extremely happy. He’s shy—as I was that evening—reserved and unassuming and speaks in a way that’s very soft, humble and quiet.
That night, he happened to come in when I had just started to cry. So, there I was, alone in the dark in my bed with sniffles and tears coming down my face. When he walked in, I thought oh, gosh, he’s going to see something that, first of all, I wasn’t particularly wanting witnessed, but secondly because, and I can’t explain it really, it just felt good to cry. These were strong emotions, a shedding feeling that came up and woke me out of my sleep. He had come in and he stood there and said:
I’ll say it first in French, “Vous savez Madame, des fois c’est juste une pensée qui nous fait pleurer… “ which translates to “You know, Madame, sometimes it’s just a thought that turns into tears like this.”
It was exactly right. He was exactly in the moment. Without saying anything more, he left the room.
This is an example of what it’s like to be here—the freedom to be.
Sunsets
This is the end of my story. The final chapter of my life. I am sixty-three years old. Two months away from my sixty-fourth birthday, and another year away from officially being a senior citizen. And you know what, that’s not too bad, isn’t it?
Here’s what I know: If you don’t get knocked off were the real is, where the true is, and where the love is, then you’re going to have a good life. Even if you suffer, even if you’re sick, even if you have pain, you’re going to have a good life.
I want you to know, every day that I’m alive, I’m super happy to be alive.
This happiness is not making me say “Fuck, fuck, fuck, I don’t want to let go.” That’s something. That’s a short time. Yes, I started in 2018—that helped—but four years ago I wasn’t anywhere near being where I am today.
So you can know, rest at ease, that I will have lived and died happy and at peace.
REEF 