August 5, 2024 • 25 mins
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.
See omnystudio.com/listener for privacy information.
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Episode Transcript
Available transcripts are automatically generated. Complete accuracy is not guaranteed.
Speaker 1 (00:14):
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,
(00:35):
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.
(00:57):
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
(01:17):
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
(01:40):
reflecting on Chris's final days.
Speaker 2 (01:44):
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
(02:05):
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
(02:25):
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
(02:50):
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
(03:11):
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
(03:32):
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
(03:54):
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,
(04:17):
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
(04:38):
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.
Speaker 1 (04:50):
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.
Speaker 2 (05:09):
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
(05:35):
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,
(05:55):
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.
Speaker 3 (06:08):
Was it good?
Speaker 2 (06:09):
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
(06:31):
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
(06:51):
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
(07:12):
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.
Speaker 3 (07:35):
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.
Speaker 2 (07:48):
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
(08:13):
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
(08:40):
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.
Speaker 1 (09:04):
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.
Speaker 2 (09:25):
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?
Speaker 1 (09:45):
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?
Speaker 2 (09:56):
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,
(10:16):
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.
Speaker 1 (10:35):
Yeah.
Speaker 2 (10:36):
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
(10:58):
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.
(11:18):
And so we joked that it was our like Christ,
because it was like all.
Speaker 1 (11:23):
Dad fitting that it's a dad joke.
Speaker 2 (11:26):
Yeah, I know dad jokes for moms. I'm here for
that novel. I have to do it and my responsibility.
Speaker 1 (11:31):
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?
Speaker 2 (11:51):
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
(12:13):
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
(12:35):
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
(12:58):
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.
(13:19):
I haven't figured it out yet, but I'm trying.
Speaker 1 (13:22):
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.
Speaker 2 (13:36):
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
(14:00):
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
(14:23):
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
(14:47):
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.
Speaker 1 (15:07):
Noticed that on your arm.
Speaker 2 (15:09):
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.
Speaker 1 (15:25):
I'm curious to know whether since losing Chris, you've changed
in any ways that have surprised you.
Speaker 2 (15:34):
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.
Speaker 1 (15:45):
I mean, that's huge.
Speaker 2 (15:48):
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
(16:09):
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.
Speaker 1 (16:18):
I forgot, yeah, yeah.
Speaker 2 (16:20):
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,
(16:44):
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.
Speaker 1 (16:56):
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.
Speaker 2 (17:20):
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.
(17:43):
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
(18:05):
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.
Speaker 1 (18:22):
It's painful to even hear that.
Speaker 2 (18:24):
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
(18:49):
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
(19:10):
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
(19:36):
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.
(19:57):
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
(20:20):
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
(20:45):
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
(21:09):
them is very complicated. Yeah, so it's a different saying
this side of grief for sure.
Speaker 1 (21:17):
Yeah.
Speaker 2 (21:17):
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
(21:43):
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,
(22:06):
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
(22:26):
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
(22:48):
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.
Speaker 1 (23:39):
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
(24:01):
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
(24:21):
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
(24:45):
special thanks to Jimmy Lee. You can follow A Slight
Change of Plans on Instagram as doctor Maya Shunker. See
you next week.
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,
(00:35):
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.
(00:57):
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
(01:17):
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
(01:40):
reflecting on Chris's final days.
Speaker 2 (01:44):
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
(02:05):
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
(02:25):
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
(02:50):
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
(03:11):
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
(03:32):
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
(03:54):
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,
(04:17):
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
(04:38):
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.
Speaker 1 (04:50):
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.
Speaker 2 (05:09):
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
(05:35):
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,
(05:55):
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.
Speaker 3 (06:08):
Was it good?
Speaker 2 (06:09):
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
(06:31):
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
(06:51):
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
(07:12):
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.
Speaker 3 (07:35):
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.
Speaker 2 (07:48):
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
(08:13):
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
(08:40):
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.
Speaker 1 (09:04):
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.
Speaker 2 (09:25):
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?
Speaker 1 (09:45):
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?
Speaker 2 (09:56):
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,
(10:16):
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.
Speaker 1 (10:35):
Yeah.
Speaker 2 (10:36):
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
(10:58):
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.
(11:18):
And so we joked that it was our like Christ,
because it was like all.
Speaker 1 (11:23):
Dad fitting that it's a dad joke.
Speaker 2 (11:26):
Yeah, I know dad jokes for moms. I'm here for
that novel. I have to do it and my responsibility.
Speaker 1 (11:31):
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?
Speaker 2 (11:51):
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
(12:13):
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
(12:35):
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
(12:58):
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.
(13:19):
I haven't figured it out yet, but I'm trying.
Speaker 1 (13:22):
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.
Speaker 2 (13:36):
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
(14:00):
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
(14:23):
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
(14:47):
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.
Speaker 1 (15:07):
Noticed that on your arm.
Speaker 2 (15:09):
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.
Speaker 1 (15:25):
I'm curious to know whether since losing Chris, you've changed
in any ways that have surprised you.
Speaker 2 (15:34):
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.
Speaker 1 (15:45):
I mean, that's huge.
Speaker 2 (15:48):
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
(16:09):
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.
Speaker 1 (16:18):
I forgot, yeah, yeah.
Speaker 2 (16:20):
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,
(16:44):
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.
Speaker 1 (16:56):
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.
Speaker 2 (17:20):
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.
(17:43):
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
(18:05):
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.
Speaker 1 (18:22):
It's painful to even hear that.
Speaker 2 (18:24):
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
(18:49):
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
(19:10):
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
(19:36):
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.
(19:57):
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
(20:20):
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
(20:45):
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
(21:09):
them is very complicated. Yeah, so it's a different saying
this side of grief for sure.
Speaker 1 (21:17):
Yeah.
Speaker 2 (21:17):
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
(21:43):
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,
(22:06):
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
(22:26):
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
(22:48):
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.
Speaker 1 (23:39):
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
(24:01):
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
(24:21):
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
(24:45):
special thanks to Jimmy Lee. You can follow A Slight
Change of Plans on Instagram as doctor Maya Shunker. See
you next week.
Host
Dr. Maya Shankar
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