Yesterday in school, we had to do an exercise where you paired up with someone in class you don’t know and told them “your death story”—i.e. the story of a death that changed your life and, for many people, the reason they decided to become a Funeral Director. The idea was to experience how difficult it is to share something sad and personal with a total stranger, to simulate what a family might feel the first time they walk into a Funeral Home and meet with you after their loved one has passed away.
The person I paired up with was very nice, and shared with me a story of a boyhood classmate who had drowned, teaching her at the awkward age of 13 how short and random life can be. She then listened wide-eyed as I explained a bit about Stella. I talked about the day she was diagnosed and the day that Aimee and I left our bouncing girl at home playing happily with friends while we drove to Mount Pleasant Visitation Centre and planned her funeral and how amazing the staff there were. I spoke about how “good” her death was, how full of love and support and how she inspires me in what I do and say every single day. I shared with her that I feel Stella’s death has made me better in many ways.
Afterwards, we debriefed in the class about our mutual experiences. Many people had gotten extremely emotional in telling their stories. Some were angry, many wiped tears from their eyes and one woman wept as she recalled having to put her beloved horse down. One person didn’t even do the exercise as speaking about his personal loss was too raw. He left the classroom instead. When my partner was asked about her experience with me, she furrowed her brows slightly and said…”Well…the story was sad, I mean it should have broken my heart, but Mishi was smiling the whole time she was telling it…glowing almost”. My partner seemed perplexed by this and I immediately turned beet-red. It wasn’t a criticism, it was just that she was surprised I spoke so effortlessly and unemotionally about something so tragic. I let her words sink in and have spent the last several hours mulling them over in my head. I suppose the reason I tell Stella’s story with a smile on my face is because I have rewritten parts of the narrative of how she died. I have turned her story into the Happy Ending type that I prefer to read. Knowing and loving Stella and talking about her makes me happy, but that’s only because of what I choose to remember and tell people about.
Sometimes when we’re talking, Aimee will bring up something to do with Stella’s diagnosis day, or cancer, or funeral planning and I will have absolutely no recollection of what she’s talking about, leading her to make jokes about how I only remember the things I want to— but she’s not wrong. I find that my brain has sieved through all the experiences of the time since Stella was diagnosed, and chosen only to keep the ones that stop me from falling to my knees, my chest exploding with grief. When I tell Stella’s story, I focus on all the good things. I talk about how happy she was and how, as a family, we found a way to laugh and live around Stella’s cancer. The story I tell is about how Stella didn’t seem to mind when she lost each of her faculties, she still smiled and laughed and communicated with us. I have memories of her playing with her friends and cousin Gracie even after she couldn’t walk or talk anymore. I remember days spent in the sunshine under the tree in our front yard visiting with people, reading books and painting Stella’s toenails. When Stella couldn’t see he pictures anymore, I would tell her the story of Cinderella. She always smiled when the clock started to toll midnight, “DING-DONG”. I think about ice cream and Timbits for breakfast. I remember how it seemed every single person we knew, or who found out about Stella, did kind things for us. I witnessed more acts of selfless generosity and love in those 16 months than I knew existed in the world. Even now, a year after her death, people still send me trinkets that make them think of Stella and write me that they have not forgotten her.
I remember the moment she died as being very peaceful and quiet. A tiny last breath as Aimee and I sat on either side of her, cushioned on “the big girl bed”. If I am honest with myself and reach deeply into the recesses of my brain, I can remember how horrific the days were as we waited for that last peaceful moment. Watching Stella’s eyes glaze over with a red film, suck in a half open-half closed state. Watching her chest rise and fall, panting. How she didn’t eat or drink for 12 days and it looked like she was starving to death. How her body started to bruise all over from blood coagulating as she lay on one side, everything slowing down. I try not to think about having to clean her mouth out with special solutions because it was getting thick and fuzzy from bacteria and lack of moisture. If I think very hard, I remember hurting so much I couldn’t breathe. I remember escaping to the basement to sleep for hours on the day she finally died because I couldn’t be with her anymore. Couldn’t watch. It was all my most precious dreams panting, dying, starving right before my unblinking eyes. And now as I write this, tears stream down my face and pool into my neck because it hurts so much to remember.
When I tell Stella’s story, I don’t focus on the nightmare of those first few weeks after diagnosis, when I couldn’t stand to be in the same room with Stella because the pain was overwhelming and made me vomit where I stood. I never tell people (unless they read the blog from the beginning, I guess), about how jealous and angry I would sometimes get watching her friends run circles around her. I don’t talk about how frustrating it was for all of us— Stella included— when she began to lose her ability to speak. When something that once came so easily was something that needed to be pushed out painfully one syllable at a time, and often after all her efforts that left her panting and wide-eyed, we had no idea what she was trying to say. Finally, one day, no more sounds came out. Except laughter. Right to the end, if she wasn’t too tired, she could always make a cackle-y laugh that ended with an out-of-tune series of three little giggles.
I have chosen to rewrite parts of Stella’s story, not to change anything that happened, but to leave some things out so that I can share the good, positive parts of her life and death.
The experience that my partner had in class, was of me being happy and proud of the life and death we gave Stella. I have told her story so often and so publically— written on the blog, a couple of articles, given speeches at schools and Church, that it has become a narrative—a planned out, chronological, “feel good” story. I’ll never forget when I was asked to speak to a group of 7 and 8th graders for Terry Fox Day last year and the Principal cautioned me that he wanted the speech to be “uplifting” as opposed to sad. That’s what people want to hear. They want to be inspired and feel good at the end of a story. They want to believe that even though Stella died of this horrible monster called DIPG, her story is not a sad one. And that is my mantra when I tell people about her. The title I often use for stories and speeches is Stella Joy- A Love Story, because for me, that’s what it has become. I suppose that’s one reason that this blog is important for me and Sam and Hugo to have. I have never gone back and re-read anything I wrote, but I know that within these type-written pages, there are those pushed-aside feelings of anger and grief and frustration and horrific sadness. They are all here, easily read and acknowledged. Each entry of this blog builds on the last and forms the full story of Stella and what happened to her. Catherine Porter’s articles and E-Book about Stella are the same, chronicling the ups and downs of our experience. But the story I have written for Stella, the one I choose to tell when people ask me, is not a sad story. It has sad parts to it, but it is the story of overcoming pain and learning to embrace life in small moments, not big chunks. It is about love and community and believing that good things can come from horrible situations. It is about honouring a life lived by focusing on the beauty, not the ugly, twisted tumour that stole my daughter’s life.
I have often said that my life mantra has become, “Find the Joy”. But perhaps, more accurately, it should be: “Find the Joy. And if you can’t find it, make it up”.
Sam and Hugo play with some special wish stars that a blog reader from the UK kindly sent us this week:
Stella, Summer 2010:
Stella and I, a few days before she died: