Jen Stevens left this world on Tuesday, July 26, 2022. In today’s program, her daughter Darshan Stevens talks about Jen’s life, her medically assisted death (MAID) and the changes that came about throughout this process.

“My biggest grief was when my mom received her diagnosis of inflammatory breast cancer and my longest grief is probably what I was going into now, after she’s passed,” explained Darshan. 

“That initial shock and devastation of finding out what my mom had, I’ve never had a moment like that before in my life! I guess I’ve been quite privileged and lucky to not have any other close family members die. I was absolutely wrecked. I was incoherently babbling. My mom told me on the phone and she didn’t know what it meant, and I just held it together when she told me. After I got off the phone with her, I looked it up. Then I knew how bad it really was, that there was very little chance that she would have more than two years.”

Jen lived in a cabin on her daughter’s property during the last decade of her life. They were very close, almost like partners. You can hear that intimacy in Darshan’s voice, as she lists some of the things she appreciates about her mom in the podcast above. 

“Being down for life, that’s my mom — she’s down for living! She gives a big resounding ‘yes’ to being alive and she walks right into life. That’s not necessarily my way of being in the world, I’ve always been a bit of a reluctant liver of life. So that is an inspiration for me.”

“Part of the way that she did that, to be more specific, is that she’s extremely community oriented.  I like to say, she had basically no internalized capitalism. She had no value on making money and getting somewhere in life. She liked crafting and making gnomies. When she worked as the play school teacher, she put in double the amount of hours that she got paid for doing crafting and little extracurricular stuff. She just didn’t even think about it.”

Dashan has been more success oriented. She suspects this is because she is the eldest of Jen’s three children.

“I have succeeded a lot in my life in a lot of different ways, but my mom would’ve been perhaps even more happy if I had spent more time making gnomies with her.”

“She really liked doing things that were childish and fun and exciting and impulsive.”

Darshan listed some of the activities Jen would have liked her to join in on: making ‘silly little watercolour paintings’; watching ‘bad television’; or riding the current in Mansons Lagoon (which was one of her favourite things to do).  

“She kept on trying to get me to go and I’d always be like, ‘eh, no, I don’t think so Ma.’” 

Darshan and her husband, Alex, used to laugh about the way Jen initiated conversations with blatantly obvious observations. For example, when he was mowing the lawn she came over and said, “You’re mowing the lawn!” To which Alex responded, “Yes, I’m mowing the lawn.” Jen used to approach everyone that way, which prompted Darshan to say, “Oh Mom, You know how you’re coming off right now?”

“When you see how many people she’s got at her funeral, it really gets you thinking  there might be something to that way of engaging in the world, the joy in connecting with people.”

Jen was diagnosed with breast cancer in 2018. The doctor removed a lump from her breast and she did some of the recommended chemotherapy. She also tried some alternative treatments, but didn’t fully follow through on them either. Never-the-less, they thought Jen had beaten the cancer. 

“She was one of the healthiest people you’d ever meet in your life. Her vitality was very strong,” remarked Darshan. 

Two years later, Jen’s breast was inflamed. They initially thought it was mastitis and she was put on antibiotics. When the swelling didn’t go down, the doctor performed a biopsy. That’s when they discovered it was  inflammatory breast cancer (IBC). 

Jen phoned Darshan when she was returning home from Campbell River. She didn’t comprehend the implications of IBC. Up until that moment the only one who suspected this might be coming was Alex, who had googled inflammation of the breast. Not wanting to upset Darshan, he didn’t tell her  this was a possibility. Now, as something akin to shell shock came over his wife, he simply held her.    

“I had this very common experience over and over again where my mom would tell me some piece of news and my whole body would go completely cold and frozen. That was one of the really severe times that it happened. So that was the piece of very bad news. Then she did a CT scan and they saw something in her hip that they hoped was just some scarring or something,” said Darshan.

It was metastatic cancer.

“We’re very similar in most ways, but our orientation towards the world is very different. My mom’s very much an optimist, whereas I’m very much pessimist. My mom was very hopeful throughout all of her two years of treatment and two years of her symptoms, progressively getting worse and worse. Whereas every time her symptoms got worse, I felt we’re getting close to the end,” explained Darshan.

 “It was hard for me that she was so hopeful about this new treatment, or this new bandage for her arm that was going to stop the swelling. Whereas for me, I was able to pull out and see from a bigger perspective that nothing had ever gotten better from the initial diagnosis. Everything had only progressively gotten worse, but she never really saw that.” 

Alex kept telling Darshan to let her mother keep her hope, which for the most part she did. This was a two edged sword, because there were times Darshan wished Jen would make better use of her time while she was still able.

When the initial diagnosis came, Darshan hoped she might have another 10 years with her mother. Though not ‘a praying person,’ Darshan prayed for this as she swam in Hague Lake that summer. 

“I would go under the water and I would pray for my mom to have 10 years. Then I’d come up again, then I’d go under and do it over and over again.  Swimming has always been like a big cleansing for me and very settling for my nervous system. It’s like a reset. My mom has always been very passionate about swimming too.  It’s something that we share.” 

As Jen’s cancer worsened, the window of time her daughter hoped for kept decreasing. First it was 10 years, then 5. 

“Then, this past Christmas,  I thought, ‘Wow, mom’s gonna die soon, Mom’s dying.’ I was the only one that thought that, but she went through a spell that to me seemed really bad and I thought just two years.”  

“I think that my mom weaved in and out of how real it was for her. Sometimes she would say things like when I take Cove to play school, when Cove is walking, when Cove is talking. Referencing my son further down the road in times that I knew that my mom wouldn’t be around for. Cove is my nine month old son. Perhaps that was just a way for her to have a little  reprieve from the reality of knowing that wasn’t gonna be the case for her. Just allowing herself to have that imagining of being in our lives for that long, because there’s nothing she wanted more than to be a big part of Cove’s life. There were probably other things she wanted equally as much, but maybe there was nothing I wanted more than for her to be a big part of Cove’s life growing up.”

The reality of Jen’s situation came home on Thursday, July 22. That was when she announced, “I’m ready to be MAID and I want to do it as soon as possible.” Jen spoke to each member of the family in turn, each time crying ‘I’m not going to get better, I’m not getting any better.’ 

“It was almost like there were parts of her that were only just getting that. I think there were other parts of her that knew more logical parts, but I think it’s so not even just hard, but actually impossible as human beings to come to terms with dying.”

Jen’s decision was sparked by a conversation she had with Darshan the night before. 

Darshan had said, “Mom, you’re barely eating. You’re starting to starve.”

To which Jen responded, “What are you talking about? I’m eating.” 

So Darshan proceeded to list everything her mother had eaten that day, “It amounted to a few tablespoons of food, maybe a little bit more than that, but very little food we’re talking here.” 

Jen had been with people who were dying before, she knew they stop eating when the dying process begins. She wanted to leave this life while still in full possession of all her body and mental faculties. Once the decision was made, she wanted to do it as soon as possible. Jen initially wanted her last day to be Monday, but the family persuaded her to wait until Tuesday, July 26.  

Darshan’s reaction was mixed, “On the one hand, it was very painful for me to see. On the other hand, it was a relief for me to see her finally coming to terms with that reality that I felt like I had grappled with and I had held on my shoulders alone for quite a while before that.” 

To some extent, their roles had become reversed. There were times Darshan felt like the parent. 

“She so much didn’t want to die and she fought so hard for that. I felt so helpless that I couldn’t fix that for her. I tried to fix so many things for my mom and succeeded in a lot of them, but I couldn’t fix that.”

Suddenly, Darshan didn’t have to try anymore, “I’ve never felt that much relief about anything in my life before.” 

The morning of her death, Jen ate blueberry pancakes for breakfast. This was one of her favourite meals, even though she only ate a very small portion. 

Then her children, Darshan, Sterling and Forest, gave her a final bath. 

“There’s so many last things, my mom’s last bath, the last time she would eat, the last time she would talk to each person, the last time she would hang out with my dog, or with my baby,” said Darshan. 

The doctor arrived shortly after that.  

All of the family was assembled by this time: both of Jen’s parents, her two  brothers and her sister-in-law, Jen’s three children, Darshan’s husband Alex, her best friend, her baby Cove and her dog.

Darshan had told everyone to think of something to tell Jen, but there was no opportunity. 

“She used all of that time to give everyone her last words of wisdom. She brought each person up individually and talked to them. I overheard what she was saying to my aunt and uncle about how, ‘now that your daughter’s going to be in Victoria, maybe you can spend more time with Sterling.’ It’s just so my mom to be constantly bringing the family together.  Her very last words were about like trying to get people more together in the family. So she did that.”

MAID is a complex procedure, which normally takes about 10 minutes, but Jen’s passing was almost immediate. The doctor explained that this was because she was already so close to death. 

“Your mom gave every last ounce of everything she had to do all those things with you guys this morning, and talk to you. It seemed like she had that energy to do that with you, but  really you have no idea how far gone she actually was,” he said.

Darshan adds, “ I know that I might get some pushback in talking so openly about MAID, but that’s okay with me because I feel quite strong about how much dignity agency autonomy gives people to be able to make that decision. I think it’s an incredible thing for people. My mom knew right away that’s the choice she would make, and I know for myself that I would probably make that same choice.” 

“My mom didn’t have to go through things she didn’t want to go through. She didn’t want to go through not being able to do her toileting, and having someone else do that for her. She didn’t want to go through the incredible suffering that a lot of us go through when we do actually die.”

She had already battled cancer for two years, especially in that last year, and endured a great deal of suffering. 

“That was more than enough. Why would we ever wish that someone would have to go through even more suffering if they didn’t want to? That’s the way I feel about it,” said Darshan.

“After my mom passed away, I was so exhausted. It was like all of the past two years just fell on top of me and it felt like I couldn’t move. I just laid down in my mom’s house.”  

The Cortes DeathCaring Collective took over much of the preparation for the funeral, especially Yasmina and Emma.

Ironically, Jen had previously purchased the material to make a shroud for the collective sometime prior to this. No one suspected it would be used for her own burial. Now family members were invited to embroider the shroud, if they wished. 

Jen’s body lay on a bed of cedar boughs, in her cabin, the day after her death, but Darshan could not bear to see it.   

She had to go on the third day, because Jen was to be buried that evening at 6:30 PM. Darshan asked her best friend and her sister-in-law to accompany her. Entering the cabin, Darshan just sat down and cried for a while. Then her friend started chanting and pretty soon all three women were singing. Alex entered the room, and joined them. 

There were flowers throughout the house, and Darshan proceeded to take them out of their vases and place them around her mother’s body. They added decorations from the altar. Darshan took some of the ashes belonging to one of Jen’s friends and made a bindi, which she put on her mother’s forehead. Then she crowned her mother with one of her felted crowns, and covered her with gnomies.  

“I had no idea when I went in there that I was going to do that, but it just came over me that was the most natural thing to do. Once my mom was decorated with all of these colourful flowers and her bright red crown with her bumblebee on it and all of the gnomies and all of her things, I was like, that’s my mom with all of her silly crafty stuff all around her.  It felt so much more natural to see her there like that, instead of just with just the plain cedar boughs, which were beautiful, but all of the colourful stuff was so her, and it was incredibly cathartic and therapeutic.”

Part of Jen’s daily ritual was to make a cup of green tea every morning. Now Forest made green tea, poured it into his mother’s favourite cup and passed it around to everyone present.

“All of us had green tea in honour of my mom. We sang and we cried and I decorated her body. I understood this was why we keep the body for a while, because I wasn’t ready until then.”

Darshan’s good friend David Ellingsen was in the procession, when they carried Jen’s body to the cemetery. Darshan had photographed his mother Ginnie’s funeral two years ago and those pictures are cherished by his family. Ellingsen is also a photographer. He was not on Cortes very often, but Ellingsen was able to return the favour and photograph Jen’s funeral. 

“I’m not really a big believer in things like fate but if I did believe in that, I would think that was just the most perfectly fated, wonderful thing to happen,” said Darshan. 

She feels a kinship with Ellingsen, because he felt so close to his mom, in the same way that she felt close to Jen.

Shortly after the funeral, he told Darshan, “I wish I could tell you that it gets easier.”

 “That was exactly the right thing to say at the time. I’m grateful for that.”

Darshan believes that the Western world is trying to sanitize the death process, by taking the body away and trying to protect families from grief.  

“If we face it head on, which is what we did with my mom’s death and with other deaths here in the community, it’s very difficult, very painful and very confronting, but we’re actually with it and we move through it. I feel like DeathCaring collective here on Cortes Island is reclaiming the death process,” she said.

“We’re doing that by not looking away from death itself, the illness and how difficult it is before death looking after someone before they die. Doing it ourselves, instead of putting them in hospital or having someone else take care of them.”

Darshan described being with her mom’s body and watching them put her coffin in the ground was one of the most difficult experiences of her life, but at least it doesn’t feel like unfinished business. 

“When people talk to me about their loved ones dying and how they couldn’t sleep, I think sometimes not always, but sometimes that’s because that death process has been taken away from us.” 

Going through her mother’s death with the community led death care has changed her life in ways she did not expect, anticipate or know were possible.

“Before this happened I was a person who was always trying to be something, or do something, or achieve something as though I’m actually going to get somewhere, as though there’s somewhere to get. I suppose there are parts of me that will continue to do that because that’s part of being human, I think, and a part of my nature. But I think that a large part of that has died off of me now,” she said. 

“The way that I’m moving forward in the world is becoming different. It’s becoming less about getting anywhere, because life is incredibly short and there’s nowhere to get.”

She added, “It’s so hard to change that orientation in my life from achieving something to just enjoying the moment. Like being with my baby. For example, just for the sake of being with my baby, rather than it going towards something greater or more meaningful. So I’m on a learning journey.”

Top image credit: Jen and Darshan Stevens – Photo courtesy Darshan Stevens

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