Just a few days after Kelsie first talked with Maya for the podcast, Kelsie's husband, Chris, was rushed to the hospital after he didn’t wake up from a nap. He died a few days later, as a result of complications from ALS. Eight months later, Kelsie reached out to say she wanted to share what life has been like for her since then, as she handles a new phase of mourning—what she calls “quiet grief.”
To hear more from Kelsey, check out her podcast, “Sorry, I’m Sad.” If you want to hear more experiences of caregiving, you might also enjoy our episode, “I Gave Up Asking 'Why Me'?”
Connect with Maya on instagram @DrMayaShankar.
Pushkin, I'm maya Shunker and this is a slight change of plans, a show about who we are and who we become in the face of a big change. This is my second conversation with writer Kelsey Snow. If you haven't heard the first one yet, it's in our show feed, and I suggest you start there. During my first conversation with Kelsey, we spoke about her years of caring for her husband, Chris, who was diagnosed with ALS in twenty nineteen. ALS is a progressive neurodegenerative disease. It can leave people unable to move, talk, eat, and breathe on their own, and it currently has no cure. Just a few days after our conversation in September of twenty twenty three, Chris sustained severe brain damage and was declared brain dead as a result of complications from ALS. Kelsey and her two children were at Chris's bedside before he was taken off life support. Eight months later. Kelsey reached out to say she wanted to share what life has been like since then as she handles a new phase of mourning what she calls quiet grief. We started our conversation with Kelsey reflecting on Chris's final days.
Chris had had sort of just a low grade little cold for a while. It was nothing to make him worried, to make me worried, And yeah, he was napping. He fell asleep sitting up. I checked on him a few times, and I had gotten a text that the grocery delivery was here, and so I came upstairs and as I was caring a box of groceries from the front door to the island, I looked over at him and his lips were blue. So that started, you know, the whirlwind of of what you do in an emergency, right nine one one CPR, ambulance, fire trucks, first responders. He did not have a pulse when they got here, and I was talking to a firefighter who was sort of just sitting by me, and I asked if I could touch Chris. He said yes, of course, and I went over and I held his arms sort of at his elbow. And after like ten seconds, they've been working on him for some minutes and no pulse, and I put my hand sort of on the kirk of his elbow and I could feel his pulse come back, and I said, oh, he has a pulse, And so then they were rushed once they got the pulse established to go to the emergency room in the hospital's three minutes from our house, and when we got there, his pulse was in and out again. They sent me to like a waiting room while they worked on him. At one point the doctor who was leading the charge or whatever he came in and asked me, told me that he Chris did not have a pulse again and I should I should come see him. And I walked into like a scene from Er Gray's Anatomy, like doctors everywhere, and I'm over to him and I held his hand again and I was talking to him. They rushed him to get a CT and it was pretty immediately after that that the doctors told me He's not going to come back from this. So I made all those phone calls I arranged for whoever had my kids to bring them that I had to tell them that dad wasn't going to wake up. And it wasn't long after that that we we realized he could be an organ downer, which we did not know that he could do that, and that gave a lot of comfort. That was as good of a death as I think Chris could have had. The reality is like he was never going to give up, no matter how hard it got, because he would never have been able to choose to leave us. And so in my mind, taking a nap in your house that you loved, there are worse things. Yeah, it felt for me like he gave us the chance to really have a lot of really beautiful moments with him in the hospital. You know, my kids got to see their dad and he had colors, cheeks, and his hands were warm, and we got to spend a lot of time with him like that and do a goodbye in that way versus you know, them not ever seeing their dad in the way that they remembered him. Yeah.
In the immediate aftermath of Chris's death, there were so many logistical things for you to take care of, right, planning a funeral, planning a memorial service. Can you paint me a picture of what that memorial service was like.
So we decided to have it at this large Catholic church that he really enjoyed. There were four eulogies. Yeah, four eulogies. I wanted someone from each part of his life to speak to that part of his life. He had asked that only thing I knew about his funerals that he wanted me to give a eulogy, which I was like, thanks, there's a reason why, like spouses don't usually eulogize. But his sister gave a beautiful eulogy about their childhood and who Chris was and growing up together. And then one of his best friends from university gave a eulogy about their time working with the student newspaper together and the boss that Chris had. He eulogized Chris, and then I did. In the days that followed his service, I found myself almost obsessively asking people like I think I even asked you in a text, Yeah.
Was it good?
Was do you think he would have been proud of it? Did? Was it enough? And I was like why do we keep asking people this? And I realized this because like the one person that I wanted to ask was him, and I couldn't. Yeah. Something I said in the eulogy was about how I have never believed in a person more than I believe in Chris. Like this is probably why his death was so shocking to me, because I believed in him so completely that when he said I'm not going anywhere for a very long time, I believed him, and over the course of his illness, our relationship shifted in the sense that he came to me a lot more for reassurance, and I sort of became his barometer, whereas i'd always made him the barometer. And what I realized and said in my eulogy is just that I realized he'd spent the last four and a half years like making mean that he believed in just as much as I believed in him. Yes, and now in this world that I walk without him, I just take him with me everywhere, and I hear what he would say about all the things I'm doing, and I know how completely he believed in me, and that bollives me a lot on days when I feel unsure.
Yeah, there's such a physicality around grief, and I wonder if you can talk a bit about the physical sensations and how they can just hit you out of nowhere.
Yeah. I think we love in such a visceral way that it makes sense that we would grieve in that same way. Think about those feelings you have in love, right, like the butterflies and that floating feeling and that high, that adrenaline, right, and then just put the total opposite spin on it in death. For me, it's very much in my chest. In the days after Chris died, it was so sharp and so hard that I found myself actually like applying counter pressure to it. And I've wrote about a lot like I take my sadness with me and it's my companion and my grief, my sadness that's always there. It's something that I carry to the grocery store and to hockey and everywhere in between. Like it's a physical weight, but it's not a bad weight. It's like when I would wear my kids when they were babies. It's heavy. After a while, it might feel heavy, but it's love.
We'll be back in a moment with a slight change of plans. Chris passed away in September. Can you tell me about how the holidays unfolded for you as a family.
Yeah. I expected that I would have a hard time with Christmas, right, like all the decorations and the all of that. For the most part, that was better than I thought it was. There were a couple of real stumbling blocks for me, like his stocking and whether or not we hang that up, Like how do we do these things?
And how did you just I mean for those listening who are going through similar challenges like, yeah, how do you decide in those moments like what is the framework or even thinking about this?
Yeah, I do think that there is a doing it right, and the doing it right is just like completely swaddling yourself in grace. And so and you see those stockings, whether you hang his stocking up or not, who knows. Who knows if you're going to make the right decision, because there isn't a right decision. All of it is just grace in that moment you make the decision and if later you think, well, you give yourself grace. And I think that's the only way to get through grief in a way that doesn't completely destroy you.
Yeah.
Yeah, so I don't know. I don't We did the Christmas. My mom has always made us. I have two sisters made us ornaments using pictures that of when we were kids, babies, toddlers, whatever, and then a're so special and my kids love to look at them when they take them out every year, and it's like you get to see this picture and then you put it away and then you remember it again the next year. So it makes it kind of special and so I decided I would make them for I'd make them each twenty five ornaments of pictures of them with Chris. Every morning they opened a new ornament, and there are pictures from all different parts of his life, when he could smile, when he couldn't smile, all those things. And so we joked that it was our like Christ, because it was like all.
Dad fitting that it's a dad joke.
Yeah, I know dad jokes for moms. I'm here for that novel. I have to do it and my responsibility.
Of course, of course you've talked about how by early January many of the logistics and other tasks related to Chris's death had been resolved, and so suddenly your to do list is much more empty than it was before. So what was that time period like for you?
Yeah? What I realized is that I had never grieved without a to do list, and so I was really I had become very good at grief on the fly, if that makes sense, like grieving in motion. Like I had to care for the kids, I had to care for Chris, and the care for Chris was very twenty four to seven, and so I would give myself these spaces to be sad or to be angry or to be burnt out or whatever. And I was good at that kind of grief. But I had never had to just sit in my grief. And so I realized I knew how to do a busy grief, but I did not know how to do quiet grief. And that is what really January and February looked like for me was getting up in the morning and getting the kids to school. And I mean, I still I'm a solo parent, and so I have a lot of tasks, but during those school hours, I could decide, you know, I have the real privilege of not having to go back to work right now, I have the privilege to grief, and like, I want to move forward while still giving my self permission to be still. It's a weird sort of conundrum. I haven't figured it out yet, but I'm trying.
I'm curious to know if there are surprising things you found about what works best for you, or ways that you found that are better to grieve just for you specifically, you know, because it's a process of self exploration.
Yeah, I found that one thing that was really really good for me was getting up early and having that quiet, dark I would turn like one light on in the house, and I'd make my coffee, and my French press is sitting there right by my you know alexa, and I would scroll through the photos on the Alexa of Chris that we had played at his memorial service and look at just these different parts of him and his life. And then I'd sit on do a little bit of journaling and read whenever it was that I was reading, And that was a really good thing for me. I stopped drinking in January. That was a distraction that I didn't think was helping me at that point. And even though I drink, but not often and not much, whereas before I was sort of like a beer while I make dinner kind of a person. I find that my sleep is better, my clarity is better. I just like the idea that whatever I'm feeling, it's not a feeling produced by any anything but my own brain. So that was really good for me. I like physical reminders. I hardly ever wore my wedding drinks before Chris died, and I have hardly taken them off since he died. I feel very married, and I think without him by my side, it's the only way that I can let people know that I still feel very married. I got a tattoo which I had never.
Noticed that on your arm.
Yeah, yeah, it's beautiful, so it's thank you. It's four corn flowers. The cornflower is the symbol for als, and so four for each of us, and I wanted it in a place that i'd see it every day.
I'm curious to know whether since losing Chris, you've changed in any ways that have surprised you.
Yeah. I am somebody who doesn't like love, confrontation, or just wants everybody to like her. I have really given myself permission to no longer be that way.
I mean, that's huge.
I have unread text messages and un listened to voice messages from the days and weeks after Chris died, still on my phone. I don't know if I'll ever listen to them, and I have given myself permission to be like, that's okay. I saw one of Chris's, one of our good friends, and when we were in San Diego, and I asked him. I was like, were you at this service? And he was like, oh, yeah, I saw you. I hugged you. I was, and I was like, I'm so sorry. I totally forgot, and normally in my brain I'd be like, oh my god, I can't believe I did that, and I was just like, whatever.
I forgot, yeah, yeah.
So more so for me it's been I think it's that feeling of belief that Chris had in me and believing that myself, like having a real solid footing in who I am, and that this is the time in my life when I tell people that's not good for me, or I don't tell them anything at all if it doesn't feel right, and not feeling like I need to apologize for whatever decision I made.
Go Kelsey. I love this new energy from you. It's just as your friend. I'm like ron On girl. You know one thing you had shared when we last spoke for the podcast. You talked about feeling like a grief misfit, and I'm wondering, can you tell us what you meant by that and how that's evolved.
I was grieving in this slow motion and I was preparing for this grief, but I couldn't fully know what it was going to be like. And I wasn't on either side. I wasn't on the side of somebody who's blissfully unaware that your life is so fragile, and I wasn't. On the other side of like, I have lost the biggest thing, and I think what that can look like. That in between part is like it can look like a lot of silver linings. You can sort of negate your grief because well, I have Chris. I have Chris. Even though I've lost all these very vital parts of what I fell in love with, I still have Chris kind of a thing. And so I think being on the other side of this, there's an immense amount of guilt. Like, first of all, I was Chris's caretaker. My job was to keep him alive. I failed. That's the first element of grief.
It's painful to even hear that.
There's a logic brain and there's an emotion brain, right, and my logic brain knows that, but my emotion brain wins most of the time. The other part of the guilt is that, like there were many times like be a caregiver, the way that I was a caregiver is very, very painful. I could not be Chris's wife and he couldn't be my husband in those times, and that really really is unfair. And there were many times when I thought, I just need a break. I want a break. I want to be able to fall asleep on the couch reading a book and not have to get up because Chris needs is forty five. I've been at bedtime routine like I just want a break. And in the days after Chris died, your brain says, well, you wanted a break, and now you got it, and you're horrible, Like that's what your brain is telling you right like you asked for this. The truth of the matter is that when Chris died, the nuts and bolts of my life got incredibly more easy. The emotional stuff got a lot harder. But the caretaking it's like constant and chaotic and everywhere, and your brain can't it's just boom boom, boom boom everywhere. You've got something that somebody needs right now, all the time, and you're that person's arms, and you're that person's voice, and you're that person's just everything. And the caregiving is like these million things that are just like ping pong balls bouncing around everywhere, and then all of a sudden, all the ping pong balls stop moving. They just fall to the ground. And what you're left with is this massive void, but what you do with your day is all of a sudden up to you again. And I said in therapy yesterday something that feels awful to say, but like when Chris died, I got my life back and the guilt associated with that feeling and that'll take your breath away. So it's hard. It's hard. I know that he wouldn't want me to feel that way. I'd know that, but caring for your person and then losing them is very complicated. Yeah, so it's a different saying this side of grief for sure.
Yeah.
Yeah. It wasn't long after Chris died. I think that I came across a poem by Donna Ashworth and there's many beautiful lines, but the the end of it is, grief came to you, my friend, because love came first. Love came first, and it came for me earlier than it does for a lot of people. But I am always bolstered by the fact that I'm not the only one here in this world of grievers. And it's a different sort of understanding about life once you've lost something like that, but you're not alone in it, and then, you know, I think that's why I've been moved to have conversations about about grief with people is just because it's the most human of all things to die, and nobody wants to talk about it. It's very much like me talking about caregiving, right, Like, the only way that we normalize these things for people is to talk about them. And it's true, we've all loved, we're all gonna hopefully we're all lucky enough to love somebody so much that it just wrecks you when you lose that love. And I think about that a lot when I'm in my sort of like lowest periods of grief, like where I'm really feeling like I don't want to put one foot in front of the other, Like what a thing that I'm this sad? I loved him that much.
Hey, thanks so much for listening. If you found this episode valuable, we on the Slight Change team would be so grateful if you could share the episode with someone you know. If you want to hear more experiences of caregiving, you might also enjoy our episode called I Gave Up Asking Why Me. We appreciate your helping to spread the word about our show, and if you're looking for more stories of change, you can always check out our back catalog. Thanks so much. A Slight Change of Plans is created, written and executive produced by me Maya Shunker. The Slight Change family includes our showrunner Tyler Green, our senior editor Kate Parkinson Morgan, our senior producer Trisha Bbida, and our engineer Eric o'huang. Louis Scara wrote our delightful theme song and Ginger Smith helped arrange the vocals. A Slight Change of Plans is a production of Pushkin Industries, so a big thanks to everyone there, and of course a very special thanks to Jimmy Lee. You can follow A Slight Change of Plans on Instagram as doctor Maya Shunker. See you next week.