Pushkin Hay Slight Changers. This is part one of two conversations I've had with writer Kelsey Snow. It was recorded in late September of twenty twenty three.
I was twenty one and I was in love. And think about how you felt when you were twenty one. Right, there's nothing stopping you. You feel invincible. You don't think anything but good things are going to happen to you.
When Kelsey first met Chris, she fell hard. They soon fell in love, got married, and had two kids. But then Chris received a devastating diagnosis.
You have to learn to live while the person you love is dying, and nobody wants to believe that that could happen to them.
On today's episode, the complex grief of being a caregiver, 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. Kelsey's husband, Chris Now, was thirty seven years old when he was diagnosed with ALS, a progressive neurodegenerative disease. ALS can leave people unable to move, talk, eat, and breathe on their own, and it currently has no cure.
Kelsey would later become Chris's full time caregiver. Kelsey has chronicled her family's experience in a podcast she hosts called Sorry I'm Sad. That's how I first came across her story, and I was drawn to her warmth and her ins. I reached out to Kelsey over Instagram and over the years we struck up a friendship. I'm honored that she was willing to share her story with all of us. Kelsey first met Chris when she started her internship in
the sports department at the Boston Globe. Chris was the Red Sox beat writer, and he would offer her rides to Fenway, the Red Sox ballpark.
He'd text me if I was working there that day, and he'd say, do you want to ride? And my friend Adam said, snow never gives me a ride to Fenway. That's what I thought, Oh, yeah, maybe he likes me. He invited me to go to the gym after we'd been at Fenway, and then we went and got like smoothies or something, and at one point we were in his apartment and he said, well, I like, you know whatever, you I said, what, And so then of course I
decided i'd like to marry him. I think I probably knew at that point.
About a month into getting to know Chris, he mentioned to you that he had a family history of Alaska. Tell me how that conversation played out.
He had had one uncle at that point who had died of ALS a couple years before I met him. Ten to fifteen percent of ALS is genetic, the rest of it is sporadic. And I remember him telling me that and saying that at that point, I think his dad had had the genetic tests, and his dad knew that he had the genetic mutation. And I just think I was twenty one and I was in love, and I do think I misunderstood a little bit the implications
of having the genetic mutation. It's a fifty to fifty chance, it's a coin flip whether it has passed on to you from your parent. But if you have the genetic mutation, almost one hundred percent chance interesting that you will have ALUs become symptomatic at some point in your life. That's the part I didn't really understand. I don't know if he really understood it at that point either. Think about how you felt when you were twenty one, right there's
nothing stopping you. You feel invincible. You don't think anything but good things are going to happen to you.
Yeah. So let's move forward in time to twenty nineteen. You and Chris are married, You have two young children. He's thirty seven, you're thirty five. What were the first symptoms that he noticed?
He started to have some like intermittent numbness in two fingers on his right hand.
He's right handed, and.
We sort of thought, well, that's not really how this disease presents. ALS is a process of elimination diagnosis. There's no test for it, and the doctors thought it was not ALS. They thought he had a pinched ulner nerve from just like the positioning of his arms and typing and working on his computer and things like that. We leaned very hard into that, hope.
Yeah, what did that look like? The leaning and.
Heart It looked like trying to match up every symptom with this. It looked like avoidant googling as well, like there were certain things I wouldn't google. I would never google together the words pinched all their nerve and ALS because I didn't want to know whether it was a
common sort of mistake misdiagnosis. Then I finally did that Google search, and the first study that popped up was a thirty something year old woman who doctors thought had pinched all their nerve and ultimately they realized it was ALS. And the study it was two paragraphs. You know, patient died shortly after Oh gosh. And so there are a couple of tests that you can do that are really hallmarks for this disease. And one is a test where they put needles into your muscles and they gauge the
way your nerves are interacting with your muscles. And this doctor just did test and didn't say a word, and afterward finished and said, I think you have some form of motor neuron disease. And then your world is just poof wow gone. Yeah.
So you ended up flying to Miami to get an expert opinion, and the doctor there says it is, in fact the very early stages of ALS. It's fatal, it's fast moving, and it's the same type of ALS that runs in Chris's family, right. It actually had killed four of Chris's family members. I mean, what did it feel like to hear that news.
Stick to my stomach?
And then you have to figure out how to make life possible still when you know, we thought that Chris was going to die and die quickly, and our kids were so.
Little, and how do you tell them that?
And yeah, it was very that was very hard, and I think you I felt like people don't want to believe you, Like there's not a way out of this disease.
There's not.
There's not a treatment for this, right, And so in my mind, I thought, you know, I kind of have to convince people this is not gonna especially my family. You know, my mom, she's scared that I'm gonna She's like, no, that can't be right, you know.
Yeah, and it's no, it's right.
The doctors told you at that point that Chris's life expectancy was somewhere between six and eighteen months. That there was a bit of good news in there, which is the doctor also said there was a new clinical trial that Chris might be eligible to join. Can you tell me more about that.
That is not a typical situation for an als patient. Clinical trials are very hard for people to find, and oftentimes it's taken them so long to be diagnosed that they fail the screening because maybe their breathing is already too poor or something like that. So I always say like, we won the shit luck lottery. And we left Miami thinking, you know, maybe Chris will be the first person to survive this disease.
So how did Chris end up responding to the clinical trial?
So Chris started in the clinical trial of July of twenty nineteen, and so we lived in that little bubble for nine months where he really didn't have any progression at all, and we kind of moved along in that space until April. It's that still sledding season in Canada. So we were out snow sledding and our daughter had,
I don't know, fallen or something. She had a bunch of snow in her helmet and I wanted to take a picture of them, and I said, he smiled, and I had my phone out and I took the picture and I looked at it and I was like, you're making a weird face to Chris. I said, you're making a weird face. Let's take another one. So I did it again and I said, you're still making a weird face.
And then I said one more. I took it again and I went, oh shit, and yeah, I just had this little droop on one side of his smile, and that was like being diagnosed all over again, because we thought maybe we would just stay the way we were.
When did you tell Chris that? Or did you tell Chris that day? Because you have this information you were carrying in your brain taking this photo, I'm presuming you didn't share that in front of your fan, like your kids and him in that moment.
I think it was more of like we looked at each other, like I show the photo, and we just sort of looked at each other and knew okay, and we walked home then pulled the kids on the sled with this like, you know, horrible feeling of dread. And so then it was just it was pretty quick the loss of his smile. And Chris had such a good smile,
and everybody would comment on Chris's smile, everybody. I mean, he was little, his parents called him guy Smiley like he was not only did he have a beautiful smile,
but he was always smiling. And you know, always see he works in professional sports, so in a team picture, while these guys were very serious, and Chris was always you know, huge white teeth, big smile, showing happy, just a happy guy, positive, optimistic, and whether he remained those things or not, it didn't come across that way because now he'd had no facial expressions. I mean, not only could he not smile, he all of his facial muscles
atrophied pretty much completely. He can't blink. He can open his eyes, but he can't close them all the way. He can't raise his eyebrows, he can't make facial expressions at all.
Yeah, when you think about smiling in the context of everything else, als can rob a persona that can seem trivial. But I know from reading your work and listening to interviews with you, this was a massively painful loss.
Yeah, it's very hard, whether you want to believe it or not. You often end up assuming the worst in that person's mood. And I'm an adult and I have a hard time with that. So then you know that is even more difficult.
For our kids.
Yeah, meaning you assume that Chris is in a bad mood when he might very well not be. He's just not able to show you his joy.
Yeah, or are you tired or do you feel off today? Because he can't show me a different feeling and no, his smile, I don't know how you can rank like the hard parts of this, but.
I think a lot. I just wish you could still smile.
We'll be back in a moment with a slight change of plans. A few months after the sledding photo, Chris told Kelsey he was experiencing a new symptom.
He told me that he had noticed that he sometimes had to swallow twice. It's called double swallowing, which is a very common first symptom that an als patient is losing their ability to swallow or having progression, and they're swallowing muscles. So he's losing his smile. He's losing his ability to swallow. That fall of twenty twenty was incredibly hard for our family. We had some choking things. It
was quite traumatic for our kids. For me, they got to the point where every single day we were taking something off the list of foods that he could eat.
He was losing weight. He was really.
Spending six hours a day trying to consume enough food to not lose weight. And in late November of that year he got a feeding tube, which was revolutionary for us, and he did very well with the feeding tube. Pe gained a bunch of weight back. It was going really well, and then he started to reflux stomach contents and then aspirate it. So an aspiration event is basically anytime you say, oh,
that went down the wrong way, you aspirated. So when you're swallowing, muscles weaken, you're more likely to get things in your lungs, whether it's water or food, And anytime you get something in your lungs, there's a risk of you developing an ammonia.
And over a.
Period of thirteen months, he was in the hospital eight times with aspiration events and that got very, very scary for us. It spiraled pretty quickly to the point where he was admitted to the ICU. He ended up on a ventilator two times, and he had a bacterial.
Pneumonia, a viral pneumonia.
Influenza A, and a staff infection. He was in the ICU for two weeks. And when he went into the ICU, he could drive, he could go to work by himself, he could do everything he needed to do. And when he got out of the ICU, he went from being I would say ninety percent independent before to one hundred percent dependent on me after the ICU, and that never changed. He can type with two fingers on his left hand,
and that's how he works. He still works full time, but it went from him doing almost everything by himself to any single thing you do in a day, zipping up your hoodie, going to the washroom, washing your hair or your body in the shower, arranging your blankets in bed, you name it, I do it for him.
You know, you were already in the mode of caregiving, obviously raising two young kids when this all started. And what was it like to take on this new identity of caregiver for your young spouse?
Yeah, in his early forties. Yeah, Yeah.
I remember having conversations with my friend Sondra because her husband was more progressed than Chris, and I remember her talking about caregiving.
In a way that felt like, I hope that's not true.
I hope I hope that I don't find it as awful as she's finding it.
But it it is. It is awful. It's horrible.
Yeah, that's not the right word caregiving.
I would find it completely excruciatingly horrible.
Okay, for what it's worth, it is.
You don't want to say that because it's your person, but it's okay to say that.
Kelsey. Yeah, it's so hard.
You can't be a wife and a caregiver at the same time. So they just this person just starts to be a patient for you, you know, in.
The real, true sense of like being totally open about this.
You start to like dreave coming home because you know they're going to ask you for all the things they've been waiting to have done, you know, and they're not. It's not like they're asking you for extra things, but they need help with everything. And we don't have any family here, so I have, you know, I have some wonderful friends, but it's not we know, that's not the same thing as family. Our son just turned twelve, our daughter turns nine at the end of this month. They're
very busy. I'm the only driver in my house. I am trying to get you know, dinner ready, which I'd hardly ever cook anymore. It's so consuming, it is so draining, and a huge part of it is feeling like nobody is taking care of you, and there's all sorts of complicated emotions involved in it. You can't say to somebody, this is going to get better, because what does that mean if my responsibility is as a caregiver giveitter.
That's because my.
Husband has died, so caregiving is very hard. It's hard on everybody, and I think that a lot of things can be true. At the same time, I remember before I really was actually being a caregiver for Chris, saying like it's an honor to care for Chris. And I've thought about that a lot, sort of like, oh, you're fucking idiot, Kelsey, you know, to say that out loud because you didn't get it.
And at the same time, it is.
You know, you've written about feeling resentment as a caregiver, and yeah, just talk to me about that feeling. I mean, how do you engage with it.
I'm not jealous of Chris, obviously, but I'm jealous maybe of the fact that he has somebody who cares for him like I do. So I do have resentment, but you know, it's probably that I'm the only parent. It's that I'm I'm just the one who everything falls on. If the load of laundry needs to get done, if the toilet is clogged, if the lawn needs to be mowed, if the dishes are in the saink if whatever it is.
Every single thing is on me, and oftentimes that also looks like the emotional labor of what's going on for my kids and their mental health, because this is not an easy thing for them either.
You know, we.
Feel very confident that Chris is going to live for a long time still, but they have a dad who can't play catch with them. They have a dad who can't coach their sports teams. They have a different dad, you know, a dad who is in the hospital a lot and misses their sports games because the rink is too cold and that's hard on his body or whatever it is. And so I feel the weight of that a lot. I had hit a very low point, probably
my lowest point in the spring. I went into my therapist and I said, I'm just having a really hard time managing my stress. And I started to describe all all of these things to her that I was feeling, and she looked at me and she said, Kelsey, that's not stress anxiety, And she said, maybe you want to consider trying medication. And so in April I started taking Zoloft and did in the summer hire a caregiver who
started in August, and that's been life changing. I left home one day and I came back and I don't have so many hours that I hadn't seen christ and also I hadn't been on call, because there's two different things with caregiving. When you're actively doing it and knowing that you're the one who has to do it at
a moment's notice, both of the things are exhausting. And I walked in the door and I realized I had missed him and I hadn't missed him for months because I hadn't been a position too, because normally I'd walk in the door and feel dread. Now I've been gone, and now I'm going to have to do all of these things. But I walked in and our caregiver was with him. They were doing the things, and I was like, oh,
that's right, you're my husband. And medication was the root of all of that, because the medication pulled me out of that sort of permanent fight or flight that I was in, and that was what allowed me to troubleshoot the things that were going on and say what else can I do here? Because I wasn't constantly, you know, in that anxiety fueled frenzy.
You know, it strikes me that because the kind of grief you're facing isn't sudden, like what might accompany the death of a loved one, but instead it's the gradual loss of the Chris that you once knew that. There may be unique challenges associated with dealing with the situation like this in terms of the way that you process grief, the way that those around you process grief, And I'm wondering if you can reflect a bit on what it's like to handle that kind of grief situation.
Yeah.
I was messaging with a young mom in Ontario who whose husband has als and she has a toddler, a little girl, and we were talking about how we feel like grief misfits because we aren't widows, but we aren't like our friends, and it's this sort of weird middle space.
I did a podcast episode with.
A mom in my neighborhood who lived for about six years with metastatic breast cancer, and I remember her saying that the longer she lived, the more she felt like people would see her and be like, you're not dead yet. And it is very hard for people to look at a disease like this. They don't want to see prolonged suffering. They don't want to see that. You might have to
learn how to live. You have to learn to live while the person you love is dying, and nobody wants to be that could happen to them, And so it is a very weird space for grief. And I feel like there are two sides to it. One is that you don't want people to forget about you, that you're still here and you're still it's that you're on this hard road and that you don't want people to like
look at you with sad eyes all the time. That's a hard thing for people to figure out how to be because it's sort of a narrow path to walk.
I was wondering, you know, as you reflect back over the last four years, and like you said, you know, you kind of one the bad luck lottery in terms of having these four years of Chris. What has this experience taught you about yourself and how you navigate uncertainty, how you navigate change.
I never thought I'd be the kind of person who would manage well in a crisis. You know, how you think about something going wrong and you say, like that person steps up and they can handle it, and the other people are like frozen or retreat. I thought I would be a frozen person, and.
I am not, and.
I think I really spent a lot of years not giving myself enough credit. Chris has always been my barometer, and I've known him for so long. If he says it's going to be okay, okay, it'll be okay, and I could lean on him for that. And then when he was diagnosed, I remember having a very vivid realization that I have to do that now for him. I have to be the one in my house to say, we're going to be okay. This is hard, this hurts, and we're going to be okay. We'll figure out a
way through it whatever it looks like. And I'm I think I'm pretty good at it. And while being a caregiver is incredibly hard, I will forever be so proud of myself for the way that I've cared for my husband. And we'll continue too, and that we always keep trying to be better versions of ourselves, even in the middle of what feels often like an impossible circumstance, We're still always striving to do better with what we have.
We don't give up, and we don't.
Cower, and we put our shoulders back and we go through it.
Two days after I recorded this, conversation with Kelsey. Chris was napping at home and never woke up. Eight months later, Kelsey let me know that she wanted to share what her grief has looked like since then. That's our next episode. I'm so grateful to Kelsey for being willing to share, and I think we have so much to learn from her.
Also a quick note, I've already mentioned that Kelsey and I are friends, and for the sake of openness, I wanted to share with listeners that in the immediate aftermath of Chris's death, I started an online fundraiser for her family. If you know someone who's a caregiver and would find this conversation helpful, we on the Slight Change team would be grateful if you could share this episode with them. 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 Bobida, 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 at doctor Maya Shunker. See you next week.