Speaker 1: Pushkin, I'm maya Shunker and this is a slight change
Speaker 1: of plans, a show about who we are and who
Speaker 1: we become in the face of a big change. This
Speaker 1: is my second conversation with writer Kelsey Snow. If you
Speaker 1: haven't heard the first one yet, it's in our show feed,
Speaker 1: and I suggest you start there. During my first conversation
Speaker 1: with Kelsey, we spoke about her years of caring for
Speaker 1: her husband, Chris, who was diagnosed with ALS in twenty nineteen.
Speaker 1: ALS is a progressive neurodegenerative disease. It can leave people
Speaker 1: unable to move, talk, eat, and breathe on their own,
Speaker 1: and it currently has no cure. Just a few days
Speaker 1: after our conversation in September of twenty twenty three, Chris
Speaker 1: sustained severe brain damage and was declared brain dead as
Speaker 1: a result of complications from ALS. Kelsey and her two
Speaker 1: children were at Chris's bedside before he was taken off
Speaker 1: life support. Eight months later. Kelsey reached out to say
Speaker 1: she wanted to share what life has been like since
Speaker 1: then as she handles a new phase of mourning what
Speaker 1: she calls quiet grief. We started our conversation with Kelsey
Speaker 1: reflecting on Chris's final days.
Speaker 2: Chris had had sort of just a low grade little
Speaker 2: cold for a while. It was nothing to make him worried,
Speaker 2: to make me worried, And yeah, he was napping. He
Speaker 2: fell asleep sitting up. I checked on him a few times,
Speaker 2: and I had gotten a text that the grocery delivery
Speaker 2: was here, and so I came upstairs and as I
Speaker 2: was caring a box of groceries from the front door
Speaker 2: to the island, I looked over at him and his
Speaker 2: lips were blue. So that started, you know, the whirlwind
Speaker 2: of of what you do in an emergency, right nine
Speaker 2: one one CPR, ambulance, fire trucks, first responders. He did
Speaker 2: not have a pulse when they got here, and I
Speaker 2: was talking to a firefighter who was sort of just
Speaker 2: sitting by me, and I asked if I could touch Chris.
Speaker 2: He said yes, of course, and I went over and
Speaker 2: I held his arms sort of at his elbow. And
Speaker 2: after like ten seconds, they've been working on him for
Speaker 2: some minutes and no pulse, and I put my hand
Speaker 2: sort of on the kirk of his elbow and I
Speaker 2: could feel his pulse come back, and I said, oh,
Speaker 2: he has a pulse, And so then they were rushed
Speaker 2: once they got the pulse established to go to the
Speaker 2: emergency room in the hospital's three minutes from our house,
Speaker 2: and when we got there, his pulse was in and
Speaker 2: out again. They sent me to like a waiting room
Speaker 2: while they worked on him. At one point the doctor
Speaker 2: who was leading the charge or whatever he came in
Speaker 2: and asked me, told me that he Chris did not
Speaker 2: have a pulse again and I should I should come
Speaker 2: see him. And I walked into like a scene from
Speaker 2: Er Gray's Anatomy, like doctors everywhere, and I'm over to
Speaker 2: him and I held his hand again and I was
Speaker 2: talking to him. They rushed him to get a CT
Speaker 2: and it was pretty immediately after that that the doctors
Speaker 2: told me He's not going to come back from this.
Speaker 2: So I made all those phone calls I arranged for
Speaker 2: whoever had my kids to bring them that I had
Speaker 2: to tell them that dad wasn't going to wake up.
Speaker 2: And it wasn't long after that that we we realized
Speaker 2: he could be an organ downer, which we did not
Speaker 2: know that he could do that, and that gave a
Speaker 2: lot of comfort. That was as good of a death
Speaker 2: as I think Chris could have had. The reality is
Speaker 2: like he was never going to give up, no matter
Speaker 2: how hard it got, because he would never have been
Speaker 2: able to choose to leave us. And so in my mind,
Speaker 2: taking a nap in your house that you loved, there
Speaker 2: are worse things. Yeah, it felt for me like he
Speaker 2: gave us the chance to really have a lot of
Speaker 2: really beautiful moments with him in the hospital. You know,
Speaker 2: my kids got to see their dad and he had colors, cheeks,
Speaker 2: and his hands were warm, and we got to spend
Speaker 2: a lot of time with him like that and do
Speaker 2: a goodbye in that way versus you know, them not
Speaker 2: ever seeing their dad in the way that they remembered him. Yeah.
Speaker 1: In the immediate aftermath of Chris's death, there were so
Speaker 1: many logistical things for you to take care of, right,
Speaker 1: planning a funeral, planning a memorial service. Can you paint
Speaker 1: me a picture of what that memorial service was like.
Speaker 2: So we decided to have it at this large Catholic
Speaker 2: church that he really enjoyed. There were four eulogies. Yeah,
Speaker 2: four eulogies. I wanted someone from each part of his
Speaker 2: life to speak to that part of his life. He
Speaker 2: had asked that only thing I knew about his funerals
Speaker 2: that he wanted me to give a eulogy, which I
Speaker 2: was like, thanks, there's a reason why, like spouses don't
Speaker 2: usually eulogize. But his sister gave a beautiful eulogy about
Speaker 2: their childhood and who Chris was and growing up together.
Speaker 2: And then one of his best friends from university gave
Speaker 2: a eulogy about their time working with the student newspaper
Speaker 2: together and the boss that Chris had. He eulogized Chris,
Speaker 2: and then I did. In the days that followed his service,
Speaker 2: I found myself almost obsessively asking people like I think
Speaker 2: I even asked you in a text, Yeah.
Speaker 3: Was it good?
Speaker 2: Was do you think he would have been proud of it? Did?
Speaker 2: Was it enough? And I was like why do we
Speaker 2: keep asking people this? And I realized this because like
Speaker 2: the one person that I wanted to ask was him,
Speaker 2: and I couldn't. Yeah. Something I said in the eulogy
Speaker 2: was about how I have never believed in a person
Speaker 2: more than I believe in Chris. Like this is probably
Speaker 2: why his death was so shocking to me, because I
Speaker 2: believed in him so completely that when he said I'm
Speaker 2: not going anywhere for a very long time, I believed him,
Speaker 2: and over the course of his illness, our relationship shifted
Speaker 2: in the sense that he came to me a lot
Speaker 2: more for reassurance, and I sort of became his barometer,
Speaker 2: whereas i'd always made him the barometer. And what I
Speaker 2: realized and said in my eulogy is just that I
Speaker 2: realized he'd spent the last four and a half years
Speaker 2: like making mean that he believed in just as much
Speaker 2: as I believed in him. Yes, and now in this
Speaker 2: world that I walk without him, I just take him
Speaker 2: with me everywhere, and I hear what he would say
Speaker 2: about all the things I'm doing, and I know how
Speaker 2: completely he believed in me, and that bollives me a
Speaker 2: lot on days when I feel unsure.
Speaker 3: Yeah, there's such a physicality around grief, and I wonder
Speaker 3: if you can talk a bit about the physical sensations
Speaker 3: and how they can just hit you out of nowhere.
Speaker 2: Yeah. I think we love in such a visceral way
Speaker 2: that it makes sense that we would grieve in that
Speaker 2: same way. Think about those feelings you have in love, right,
Speaker 2: like the butterflies and that floating feeling and that high,
Speaker 2: that adrenaline, right, and then just put the total opposite
Speaker 2: spin on it in death. For me, it's very much
Speaker 2: in my chest. In the days after Chris died, it
Speaker 2: was so sharp and so hard that I found myself
Speaker 2: actually like applying counter pressure to it. And I've wrote
Speaker 2: about a lot like I take my sadness with me
Speaker 2: and it's my companion and my grief, my sadness that's
Speaker 2: always there. It's something that I carry to the grocery
Speaker 2: store and to hockey and everywhere in between. Like it's
Speaker 2: a physical weight, but it's not a bad weight. It's
Speaker 2: like when I would wear my kids when they were babies.
Speaker 2: It's heavy. After a while, it might feel heavy, but
Speaker 2: it's love.
Speaker 1: We'll be back in a moment with a slight change
Speaker 1: of plans. Chris passed away in September. Can you tell
Speaker 1: me about how the holidays unfolded for you as a family.
Speaker 2: Yeah. I expected that I would have a hard time
Speaker 2: with Christmas, right, like all the decorations and the all
Speaker 2: of that. For the most part, that was better than
Speaker 2: I thought it was. There were a couple of real
Speaker 2: stumbling blocks for me, like his stocking and whether or
Speaker 2: not we hang that up, Like how do we do
Speaker 2: these things?
Speaker 1: And how did you just I mean for those listening
Speaker 1: who are going through similar challenges like, yeah, how do
Speaker 1: you decide in those moments like what is the framework
Speaker 1: or even thinking about this?
Speaker 2: Yeah, I do think that there is a doing it right,
Speaker 2: and the doing it right is just like completely swaddling
Speaker 2: yourself in grace. And so and you see those stockings,
Speaker 2: whether you hang his stocking up or not, who knows.
Speaker 2: Who knows if you're going to make the right decision,
Speaker 2: because there isn't a right decision. All of it is
Speaker 2: just grace in that moment you make the decision and
Speaker 2: if later you think, well, you give yourself grace. And
Speaker 2: I think that's the only way to get through grief
Speaker 2: in a way that doesn't completely destroy you.
Speaker 1: Yeah.
Speaker 2: Yeah, so I don't know. I don't We did the Christmas.
Speaker 2: My mom has always made us. I have two sisters
Speaker 2: made us ornaments using pictures that of when we were kids, babies, toddlers, whatever,
Speaker 2: and then a're so special and my kids love to
Speaker 2: look at them when they take them out every year,
Speaker 2: and it's like you get to see this picture and
Speaker 2: then you put it away and then you remember it
Speaker 2: again the next year. So it makes it kind of
Speaker 2: special and so I decided I would make them for
Speaker 2: I'd make them each twenty five ornaments of pictures of
Speaker 2: them with Chris. Every morning they opened a new ornament,
Speaker 2: and there are pictures from all different parts of his life,
Speaker 2: when he could smile, when he couldn't smile, all those things.
Speaker 2: And so we joked that it was our like Christ,
Speaker 2: because it was like all.
Speaker 1: Dad fitting that it's a dad joke.
Speaker 2: Yeah, I know dad jokes for moms. I'm here for
Speaker 2: that novel. I have to do it and my responsibility.
Speaker 1: Of course, of course you've talked about how by early
Speaker 1: January many of the logistics and other tasks related to
Speaker 1: Chris's death had been resolved, and so suddenly your to
Speaker 1: do list is much more empty than it was before.
Speaker 1: So what was that time period like for you?
Speaker 2: Yeah? What I realized is that I had never grieved
Speaker 2: without a to do list, and so I was really
Speaker 2: I had become very good at grief on the fly,
Speaker 2: if that makes sense, like grieving in motion. Like I
Speaker 2: had to care for the kids, I had to care
Speaker 2: for Chris, and the care for Chris was very twenty
Speaker 2: four to seven, and so I would give myself these
Speaker 2: spaces to be sad or to be angry or to
Speaker 2: be burnt out or whatever. And I was good at
Speaker 2: that kind of grief. But I had never had to
Speaker 2: just sit in my grief. And so I realized I
Speaker 2: knew how to do a busy grief, but I did
Speaker 2: not know how to do quiet grief. And that is
Speaker 2: what really January and February looked like for me was
Speaker 2: getting up in the morning and getting the kids to school.
Speaker 2: And I mean, I still I'm a solo parent, and
Speaker 2: so I have a lot of tasks, but during those
Speaker 2: school hours, I could decide, you know, I have the
Speaker 2: real privilege of not having to go back to work
Speaker 2: right now, I have the privilege to grief, and like,
Speaker 2: I want to move forward while still giving my self
Speaker 2: permission to be still. It's a weird sort of conundrum.
Speaker 2: I haven't figured it out yet, but I'm trying.
Speaker 1: I'm curious to know if there are surprising things you
Speaker 1: found about what works best for you, or ways that
Speaker 1: you found that are better to grieve just for you specifically,
Speaker 1: you know, because it's a process of self exploration.
Speaker 2: Yeah, I found that one thing that was really really
Speaker 2: good for me was getting up early and having that quiet,
Speaker 2: dark I would turn like one light on in the house,
Speaker 2: and I'd make my coffee, and my French press is
Speaker 2: sitting there right by my you know alexa, and I
Speaker 2: would scroll through the photos on the Alexa of Chris
Speaker 2: that we had played at his memorial service and look
Speaker 2: at just these different parts of him and his life.
Speaker 2: And then I'd sit on do a little bit of
Speaker 2: journaling and read whenever it was that I was reading,
Speaker 2: And that was a really good thing for me. I
Speaker 2: stopped drinking in January. That was a distraction that I
Speaker 2: didn't think was helping me at that point. And even
Speaker 2: though I drink, but not often and not much, whereas
Speaker 2: before I was sort of like a beer while I
Speaker 2: make dinner kind of a person. I find that my
Speaker 2: sleep is better, my clarity is better. I just like
Speaker 2: the idea that whatever I'm feeling, it's not a feeling
Speaker 2: produced by any anything but my own brain. So that
Speaker 2: was really good for me. I like physical reminders. I
Speaker 2: hardly ever wore my wedding drinks before Chris died, and
Speaker 2: I have hardly taken them off since he died. I
Speaker 2: feel very married, and I think without him by my side,
Speaker 2: it's the only way that I can let people know
Speaker 2: that I still feel very married. I got a tattoo
Speaker 2: which I had never.
Speaker 1: Noticed that on your arm.
Speaker 2: Yeah, yeah, it's beautiful, so it's thank you. It's four
Speaker 2: corn flowers. The cornflower is the symbol for als, and
Speaker 2: so four for each of us, and I wanted it
Speaker 2: in a place that i'd see it every day.
Speaker 1: I'm curious to know whether since losing Chris, you've changed
Speaker 1: in any ways that have surprised you.
Speaker 2: Yeah. I am somebody who doesn't like love, confrontation, or
Speaker 2: just wants everybody to like her. I have really given
Speaker 2: myself permission to no longer be that way.
Speaker 1: I mean, that's huge.
Speaker 2: I have unread text messages and un listened to voice
Speaker 2: messages from the days and weeks after Chris died, still
Speaker 2: on my phone. I don't know if I'll ever listen
Speaker 2: to them, and I have given myself permission to be like,
Speaker 2: that's okay. I saw one of Chris's, one of our
Speaker 2: good friends, and when we were in San Diego, and
Speaker 2: I asked him. I was like, were you at this service?
Speaker 2: And he was like, oh, yeah, I saw you. I
Speaker 2: hugged you. I was, and I was like, I'm so sorry.
Speaker 2: I totally forgot, and normally in my brain I'd be like,
Speaker 2: oh my god, I can't believe I did that, and
Speaker 2: I was just like, whatever.
Speaker 1: I forgot, yeah, yeah.
Speaker 2: So more so for me it's been I think it's
Speaker 2: that feeling of belief that Chris had in me and
Speaker 2: believing that myself, like having a real solid footing in
Speaker 2: who I am, and that this is the time in
Speaker 2: my life when I tell people that's not good for me,
Speaker 2: or I don't tell them anything at all if it
Speaker 2: doesn't feel right, and not feeling like I need to
Speaker 2: apologize for whatever decision I made.
Speaker 1: Go Kelsey. I love this new energy from you. It's
Speaker 1: just as your friend. I'm like ron On girl. You
Speaker 1: know one thing you had shared when we last spoke
Speaker 1: for the podcast. You talked about feeling like a grief misfit,
Speaker 1: and I'm wondering, can you tell us what you meant
Speaker 1: by that and how that's evolved.
Speaker 2: I was grieving in this slow motion and I was
Speaker 2: preparing for this grief, but I couldn't fully know what
Speaker 2: it was going to be like. And I wasn't on
Speaker 2: either side. I wasn't on the side of somebody who's
Speaker 2: blissfully unaware that your life is so fragile, and I wasn't.
Speaker 2: On the other side of like, I have lost the
Speaker 2: biggest thing, and I think what that can look like.
Speaker 2: That in between part is like it can look like
Speaker 2: a lot of silver linings. You can sort of negate
Speaker 2: your grief because well, I have Chris. I have Chris.
Speaker 2: Even though I've lost all these very vital parts of
Speaker 2: what I fell in love with, I still have Chris
Speaker 2: kind of a thing. And so I think being on
Speaker 2: the other side of this, there's an immense amount of guilt. Like,
Speaker 2: first of all, I was Chris's caretaker. My job was
Speaker 2: to keep him alive. I failed. That's the first element
Speaker 2: of grief.
Speaker 1: It's painful to even hear that.
Speaker 2: There's a logic brain and there's an emotion brain, right,
Speaker 2: and my logic brain knows that, but my emotion brain
Speaker 2: wins most of the time. The other part of the
Speaker 2: guilt is that, like there were many times like be
Speaker 2: a caregiver, the way that I was a caregiver is very,
Speaker 2: very painful. I could not be Chris's wife and he
Speaker 2: couldn't be my husband in those times, and that really
Speaker 2: really is unfair. And there were many times when I thought,
Speaker 2: I just need a break. I want a break. I
Speaker 2: want to be able to fall asleep on the couch
Speaker 2: reading a book and not have to get up because
Speaker 2: Chris needs is forty five. I've been at bedtime routine
Speaker 2: like I just want a break. And in the days
Speaker 2: after Chris died, your brain says, well, you wanted a break,
Speaker 2: and now you got it, and you're horrible, Like that's
Speaker 2: what your brain is telling you right like you asked
Speaker 2: for this. The truth of the matter is that when
Speaker 2: Chris died, the nuts and bolts of my life got
Speaker 2: incredibly more easy. The emotional stuff got a lot harder.
Speaker 2: But the caretaking it's like constant and chaotic and everywhere,
Speaker 2: and your brain can't it's just boom boom, boom boom everywhere.
Speaker 2: You've got something that somebody needs right now, all the time,
Speaker 2: and you're that person's arms, and you're that person's voice,
Speaker 2: and you're that person's just everything. And the caregiving is
Speaker 2: like these million things that are just like ping pong
Speaker 2: balls bouncing around everywhere, and then all of a sudden,
Speaker 2: all the ping pong balls stop moving. They just fall
Speaker 2: to the ground. And what you're left with is this
Speaker 2: massive void, but what you do with your day is
Speaker 2: all of a sudden up to you again. And I
Speaker 2: said in therapy yesterday something that feels awful to say,
Speaker 2: but like when Chris died, I got my life back
Speaker 2: and the guilt associated with that feeling and that'll take
Speaker 2: your breath away. So it's hard. It's hard. I know
Speaker 2: that he wouldn't want me to feel that way. I'd
Speaker 2: know that, but caring for your person and then losing
Speaker 2: them is very complicated. Yeah, so it's a different saying
Speaker 2: this side of grief for sure.
Speaker 1: Yeah.
Speaker 2: Yeah. It wasn't long after Chris died. I think that
Speaker 2: I came across a poem by Donna Ashworth and there's
Speaker 2: many beautiful lines, but the the end of it is,
Speaker 2: grief came to you, my friend, because love came first.
Speaker 2: Love came first, and it came for me earlier than
Speaker 2: it does for a lot of people. But I am
Speaker 2: always bolstered by the fact that I'm not the only
Speaker 2: one here in this world of grievers. And it's a
Speaker 2: different sort of understanding about life once you've lost something
Speaker 2: like that, but you're not alone in it, and then,
Speaker 2: you know, I think that's why I've been moved to
Speaker 2: have conversations about about grief with people is just because
Speaker 2: it's the most human of all things to die, and
Speaker 2: nobody wants to talk about it. It's very much like
Speaker 2: me talking about caregiving, right, Like, the only way that
Speaker 2: we normalize these things for people is to talk about them.
Speaker 2: And it's true, we've all loved, we're all gonna hopefully
Speaker 2: we're all lucky enough to love somebody so much that
Speaker 2: it just wrecks you when you lose that love. And
Speaker 2: I think about that a lot when I'm in my
Speaker 2: sort of like lowest periods of grief, like where I'm
Speaker 2: really feeling like I don't want to put one foot
Speaker 2: in front of the other, Like what a thing that
Speaker 2: I'm this sad? I loved him that much.
Speaker 1: Hey, thanks so much for listening. If you found this
Speaker 1: episode valuable, we on the Slight Change team would be
Speaker 1: so grateful if you could share the episode with someone
Speaker 1: you know. If you want to hear more experiences of caregiving,
Speaker 1: you might also enjoy our episode called I Gave Up
Speaker 1: Asking Why Me. We appreciate your helping to spread the
Speaker 1: word about our show, and if you're looking for more
Speaker 1: stories of change, you can always check out our back catalog.
Speaker 1: Thanks so much. A Slight Change of Plans is created,
Speaker 1: written and executive produced by me Maya Shunker. The Slight
Speaker 1: Change family includes our showrunner Tyler Green, our senior editor
Speaker 1: Kate Parkinson Morgan, our senior producer Trisha Bbida, and our
Speaker 1: engineer Eric o'huang. Louis Scara wrote our delightful theme song
Speaker 1: and Ginger Smith helped arrange the vocals. A Slight Change
Speaker 1: of Plans is a production of Pushkin Industries, so a
Speaker 1: big thanks to everyone there, and of course a very
Speaker 1: special thanks to Jimmy Lee. You can follow A Slight
Speaker 1: Change of Plans on Instagram as doctor Maya Shunker. See
Speaker 1: you next week.