June 9, 2020 • 23 mins
A documentary filmmaker with a rare neurological disorder draws strength from a community of people who know what it’s like to live with chronic illness.
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Episode Transcript
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Speaker 1 (00:07):
I'm Danny Shapiro and this is the Way We Live Now.
Today is day ninety one since we've forgotten what a
belt is, and day forty one of this podcast. I've
been thinking a lot about where people were in their
lives when the pandemics struck. Some of us were ill
undergoing treatment, Others in the middle of breakups or divorce.
(00:30):
Others were grieving losses that had nothing to do with COVID.
And then there were those with extreme chronic illnesses. How
were they coping and what might we learn from their resilience.
My guest today is Kimberly Warner, a documentary filmmaker who
is dealing with a profoundly unsettling chronic illness. Kimberly was
(00:51):
in the midst of making her documentary Unfixed, when she
had to shift gears and make her film in an
altogether different way. Kimberly, thank you so much for joining
me to talk about the way we live now. Thank
you so much for having me. I'm just thrilled to
(01:12):
be able to share a little bit of time with you. Danny.
Well same here. Describe your surroundings to us. Um, where
are we finding you? What do you see around you
as we're speaking. Well, in this exact moment, I'm in
a parking lot in a small rural town in Oregon. Um.
(01:33):
It's about ten miles down the road from where my
husband and I live, which doesn't have really good WiFi,
So I thought I'd probably be better off coming down
to our veterinarian's parking lot, um to have a clear
conversation with you. But even though it sounds a little dismal,
I actually am looking right at um, a giant sequoia
(01:58):
right in front of me, and then I grow of
at least a hundred year old doug furs. Off to
my left. There are azaleas and blooming rhododendrons and a
big maple tree on my left. Um, So this is
my home office for our conversation, even though where I
(02:20):
where I wish I were was in my home office
seven miles ten miles from here, where I'd be looking
at our veggie gardens and our chickens running around the yard. Um,
But this will have to do for today. Well, you
are not my first guest to call me from our
parking lot. This is and many of us find ourselves
(02:41):
in our cars for various reasons. Um. Sometimes just hiding.
So tell me what you were doing when the pandemic hit. Oh,
that's an interesting question. I was actually on a film shoot. Um.
This was February twentieth, so this is early into the pandemic. UM.
(03:03):
I was with my film crew and we were spending
two days with one of our subjects, a wonderful man
up in Olympia, Washington, and we were spending the time
with his family and him and four of us ended
up getting really sick and we uh were finished the shoot.
(03:27):
But within days of that shoot, all of us were
down for the count and at least for four four weeks.
And of course at that time there weren't tests, um
that we could get more readily available, um, and so
we just wrote it out. But definitely had kind of
the respiratory issues. So you think that that was likely
(03:50):
in early early cases of COVID, Well, we thought, because
as the month progressed through March, we were wondering. Of course,
at that point we were under lockdown, and um, we
thought this is we had been quarantining ourselves since February
twenty if not because of even thinking that we had COVID,
but because we were so sick. We just weren't leaving
(04:12):
our homes. UM. It turns out actually I did get
an antibody test just a week ago and tested negative.
So whatever would add um it was it was a beast,
but we didn't have that. That being said, we were all, um,
pretty isolated from February on and um, including my husband
(04:34):
because my husband was helping out on that shoot. So UM,
we've been living in our quiet, little rural homestead for
months now, UM, without a lot of contact with the world.
So tell me about the documentary that you were working on.
It's it's titled Unfixed, and you were interviewing people who
(04:56):
have extreme chronic illnesses. Um. We is something that you
yourself also are dealing with exactly. UM. I decided that
I needed to find people that were learning how to
thrive with what they had, and this came about from
my own struggles. UM. I spent about two years pretty
(05:18):
much stripped away from the identity that I once had known,
feeling confident in my body, feeling continent, confident, and the
way I moved through the world. UM, and that isolation
and confusion around what I was experiencing, which now I
know it's called condition called m d D. S um
(05:40):
Maldave de Bachmann syndrome is the longer term, but it's
a neurological condition that is basically makes you feel like
you're a constantly on a boat. So um, like right
now I'm sitting in the car and the car is
kind of bobbing up and down a little bit. And
it goes from varying degrees of oak gentle sees to
(06:03):
wild turgulencies and um, it just throws people off in
every aspect of their lives as you can imagine. Um.
And so it's taken me five years to really adapt
to these sensations and they never go away. It's not
something that you can lay down and oh yeah it's better. Um.
(06:26):
So anyway, I got to a place of feeling so
alone in my experience of this, and I thought, after
exploring all the different possibilities of fixing it, which is
more my mi amo, I've got to find the right doctor,
which doctor heal or medical doctor neurologists. I went to everybody,
(06:48):
and when I couldn't find a cure, I first fell
into a deep state of grief and then, um, somebody
told me one day, what would it be to live
with this? For the rest of your life. And I
didn't like that suggestion, but I it's planted a seed
(07:10):
in me. And when I was ready to start watering
that seed, I am allowed myself that possibility of what
it would be like to move through the world unfixed.
And I thought, well, if I'm going to do that,
then I need to find some people that are doing it.
(07:30):
So I started just searching and they came out of
the woodworks. It didn't take very long. This started last
September of twenty nineteen, and within a few months I
had over fifty conversations with people from all over the country,
including a few people in the UK who wanted to
(07:51):
share their own stories. And by no means are we
all like you know, we're on fixed and this is
great and we're waving our flags. It's more of how
do we do this every day? And some days it
feels broken, in some days it feels like we can
hold gratitude alongside the brokenness. Um and it has been
(08:12):
such an rich journey. And then you add the pandemic
that was not expected, that was not part of the
film plan of getting into people's lives right. It never
is part of a film plan, but it's so interesting
because you went from trying to connect in a way
(08:34):
that was in person, doing these doing these interviews and
getting to know these other people who were contending with
their own chronic illnesses, and then having to stop that
and pivot into another way of gathering and of telling
(08:56):
these stories. So I'd love for you to talk about that,
because I've gone online and looked at what your project
looks like in its current iteration, and it's really beautiful
and special, and I think it has so much to
teach people. Well, thank you, Danny. Um. I do feel
(09:16):
like there has been some blessings in this. First of all,
so there are twenty people now that are in what
we're calling me unfixed community. I don't really like to
call them subjects because it sounds so clinical. So I
we talked about I talked about them as well my
friends members. UM. So there are twenty of us, and
(09:38):
prior to the pandemic hitting, we already knew that we
were going to do some self recorded videos. But alongside
that I was going we had a production calendar where
I was going to be traveling to a number of
these people throughout this year. All the way we had
things booked all the way through October and all over
the world, all over the country, all over the country.
(09:59):
For we had all over the country and that all
you know, a lot of them were on the East coast,
and um, that was going to involve two or three
day film shoots with a larger crew and just you know,
following them around in their lives and having interviews. And
because that's not happening, UM, alongside the self recorded videos
(10:21):
that we were already planning on doing, we are only
doing the self recorded videos. So every month, UM, I
on the first of every month, I send out an
email with the prompt questions that relates something to chronic
illness and what their experiences are. We are into our
fifth month now, and because of the pandemic and because
(10:43):
I'm not on the plane traveling all over to some
of these people, we are just going into the stories
with a little more depth. And I actually last month
asked them to create some bevill alongside their self recorded videos.
And they're getting quite good at turning the camera out
and filming their experiences of life. And what I'm really
(11:07):
realizing is that it's forcing me to be less of
a leader and show up more vulnerably with all of them.
I mean that it actually it just brings tears to
my eyes because I feel like they're they're letting me
into their hearts in a way that I don't think
I would have had had we showed up with our
(11:27):
big crew, um and you know, our fancy gear, and
they're coming to me saying, how are you? Because you
know I'm struggling with my own you know, brain likes
to bounce around and unusual ways, and so, UM, I
think they're recognizing that we're in this together. That's become
(11:49):
That's been such a beautiful, unexpected part of making this film. Um,
I couldn't have scripted it. Can you give a sample
or two of what these prompts have been? Yeah? Well,
last month we actually the one I invited them to
share some b roll alongside their interview was to just
(12:12):
to talk about what a good day is like and
what a bad day is like and knowing that those
terms are very subjective. UM, and you know, how do
we hold those experiences together? Because to some a good
day really maybe a bad day um and vice versa.
So we explored that concept and UM and for me,
(12:37):
it's some of our participants have invisible disabilities, and so
it is especially interesting to see, Okay, what is it
like when I look at you? You look totally normal?
So can you show me with your camera what you're
experiencing inside of your your body right now? And it
(12:58):
was so beautiful to receive, UM, you know, shots of
screens with rain behind them and the screen kind of
muddying the scene, or someone else took UM electrical cables
and put them together so that they created these shocks UM.
And that was our actually our subject in Olympia who
(13:21):
has a condition called tregeminal neuralgia and it creates these
lightning bolt shocks in his brain. And for myself, I
always do them too. To share with them, I put
a piece of plastic monkey in a jello mold and
I shook the jello and like this is on a
bad day, I feel like I'm a monkey inside of
(13:41):
a jello mold that's being wobbled around. And this month
I'm looking forward to what they share. I just sent
out the prompt and I want them to talk about
their caregivers and or their friends, family members, UM, neighbors,
anybody who has shown up for them in a positive,
(14:01):
loving way, and UM I feel like I definitely don't
want to ignore some of the negativity that is part
of living with conic illness. But we have a lot
of that in the world right now, and I thought, let's,
without sounding to cliche, we need more love in this world.
So let's hold our hearts and gratitude and think about
(14:23):
the people that have really been there for us and
what did they do and how did they do it?
And I think for me, the biggest lesson in all
of this, for myself, has been learning to love the difficulties,
learning to love the unpredictability, the uncertainty of my own condition,
(14:45):
and then expanding that outwards into my community and other
people that are experiencing suffering and holding it in my heart,
allowing them to be room for all of it. Growing
up as a you know, Perfectionisticvalle Arena, I didn't have
a lot of room for the ugly stuff. So peace
(15:06):
happens for me in my heart when I stopped resisting
the difficult stuff. That's such an important thing to say.
And you know, I'm struck too by by what you
said about what is a good day for one person
might be a bad day for another, and vice versa,
and I'm wondering what you think about the way that
(15:30):
contending with a chronic illness and sitting in the question
of what would it be like if this is it right,
if this is the way that you're going to be
living the rest of your life, what does that do?
During these times? I mean, I've I have found myself
(15:52):
thinking a lot about you know, people who were and
are sort of emotionally really unprepared for the challenges that
we are all globally living with, and people who somehow
have had more resilience or sort of muscles for it,
which of course changes day by day. It's not like
(16:14):
there's just one fixed way of being. It seems like
it's to step forwards, you know, one step back for everyone.
But is there anything that you and your community talk
about in terms of dealing with these challenges during this
challenging time, which is like an overlay on top of
the challenges that you were already contending with? Yes, um, well,
(16:36):
you know, we did actually a video on coping during COVID.
It was our COVID nineteen toolkit, and I didn't specify
let's you know, how do you how are you mentally coping?
How are you physically coping, how are you spiritually coping?
I just let them speak from their own toolbox, because
they've all had to learn, um to contend with uncertainty
(16:59):
and i'm predictability in their own lives, and they're experts
in a lot of ways. And so it's a great
question because I think we can be turning towards people
with chronic illness right now and saying how do you
do it? And so you know, I actually we got
a really mixed bag from a lot of mental health. UM,
(17:19):
working with your thoughts and positive thinking and self practicing,
self compassion, it was a huge one. And UM, joyful thinking,
finding moments and things to be grateful for in our
lives and balancing that out with what is real pending
in the moment. Like I said earlier, it's like being
(17:40):
able to hold gratitude in one hand and pain in
the other and allowing those both to coexist. Um. And
then we have we have our resident comedian who says,
you know, humor has to be a part of all
of this, otherwise everything is too depressing. And he has
been living in isolation for over ten years with a
(18:01):
traumatic brain injury. And it was a professional photographer, world
renowned photographer, and um has his approach is humor. I
mean my inbox is filled with jokes from him, and
that is we're coping. You know. The one that really
struck me the most that we had a few members
that really talked more about the spirituality and the element
(18:24):
of service and how even in the smallest ways, if
we can turn our attention outwards, because We're always going
to be suffering on some level. I'll always be feeling
this feeling of bobbing up and down, and you know
what it does to my nervous system and the anxiety
of that. But if I can turn my attention outwards
(18:46):
toward my cat, or my husband, or this community of
lovely humans, and how can I care for them in
the smallest ways today, or at least show them that
I love them. It doesn't make the symptoms go away,
but it fuels me and fuels us in such a
profound way. So service was something that a few members
(19:10):
really emphasized. Um. I mean, the list could go on,
but they're all teachers to me right now and to
so many more, and I my hope is that I
could just follow them for the rest of my life.
I don't know if that makes for a very good documentarian.
I've heard stories that are good documentarian is a bit
(19:31):
of a jerk, but I've I've you know, I'm not
following those rules. I've fallen in love with every single
one of them and I care deeply about their lives.
So we'll see how this this unfold. Maybe it'll be
a series. Yes, I would love that it would honor
their stories, um in a in a very profound way.
(19:54):
So my last question for you, and in a way
you've been answering it during this conversation, but what's you
hope not just during this time, but in general, what
feels hopeful? I love that question, and I've been listening
to all of your guests responses, and I guess for me,
(20:14):
I reflect back onto what I've experienced these past five
years and how through suffering and through the darkest night
of my own soul, I was able to find peace
that isn't as shakable as it used to be, and
that was indirect result of the suffering of the agony
(20:41):
that I was feeling. And so my my hope and
what is actually making me feel hopeful is that people
are quieting down and listening to these experiences of sadness
and grief and loss in their own lives and the
lives around them. And I feel like we're all getting
(21:02):
heart surgery in a way, and our hearts are expanding
to allow more breath and more space for this experience
of being human as well as the positive and the good.
And we want it both. But I think if we're
afraid of this, the yucky yer stuff, then we can't
(21:24):
have compassion for it in another And so I am
hopeful that we're all going to come out of this
with expanded hearts that can hold it, hold the bigger picture. Yeah,
that's really lovely, Kimberally, thank you so much for for
talking to me today and for sharing wisdom, um, because
(21:45):
that's what that's what you have, and I'm looking forward
to seeing Unfixed continue to unfold. Ah. That's beautiful, Danny.
I love that to me too. All right, thank you
so much. Take care, all right, thank you, thanks for
(22:10):
listening to the way we live now, tell us the
way you're living now. We want to hear call us on.
You might want to a pen for this nine O
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(22:33):
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Live Now Pod. We are creating a community here and
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find me on Instagram at Danny Ryder. The Way We
Live Now is a production of I Heart Radio. It's
produced by a Lowe Brulante. Bethan Macaluso is executive producer.
Special thanks to Tristan McNeil and Tyler Klang. For more
(22:56):
podcasts from my Heart Radio, visit the I heart Radio app,
Apple Podcasts, or wherever you get your podcasts.
I'm Danny Shapiro and this is the Way We Live Now.
Today is day ninety one since we've forgotten what a
belt is, and day forty one of this podcast. I've
been thinking a lot about where people were in their
lives when the pandemics struck. Some of us were ill
undergoing treatment, Others in the middle of breakups or divorce.
(00:30):
Others were grieving losses that had nothing to do with COVID.
And then there were those with extreme chronic illnesses. How
were they coping and what might we learn from their resilience.
My guest today is Kimberly Warner, a documentary filmmaker who
is dealing with a profoundly unsettling chronic illness. Kimberly was
(00:51):
in the midst of making her documentary Unfixed, when she
had to shift gears and make her film in an
altogether different way. Kimberly, thank you so much for joining
me to talk about the way we live now. Thank
you so much for having me. I'm just thrilled to
(01:12):
be able to share a little bit of time with you. Danny.
Well same here. Describe your surroundings to us. Um, where
are we finding you? What do you see around you
as we're speaking. Well, in this exact moment, I'm in
a parking lot in a small rural town in Oregon. Um.
(01:33):
It's about ten miles down the road from where my
husband and I live, which doesn't have really good WiFi,
So I thought I'd probably be better off coming down
to our veterinarian's parking lot, um to have a clear
conversation with you. But even though it sounds a little dismal,
I actually am looking right at um, a giant sequoia
(01:58):
right in front of me, and then I grow of
at least a hundred year old doug furs. Off to
my left. There are azaleas and blooming rhododendrons and a
big maple tree on my left. Um, So this is
my home office for our conversation, even though where I
(02:20):
where I wish I were was in my home office
seven miles ten miles from here, where I'd be looking
at our veggie gardens and our chickens running around the yard. Um,
But this will have to do for today. Well, you
are not my first guest to call me from our
parking lot. This is and many of us find ourselves
(02:41):
in our cars for various reasons. Um. Sometimes just hiding.
So tell me what you were doing when the pandemic hit. Oh,
that's an interesting question. I was actually on a film shoot. Um.
This was February twentieth, so this is early into the pandemic. UM.
(03:03):
I was with my film crew and we were spending
two days with one of our subjects, a wonderful man
up in Olympia, Washington, and we were spending the time
with his family and him and four of us ended
up getting really sick and we uh were finished the shoot.
(03:27):
But within days of that shoot, all of us were
down for the count and at least for four four weeks.
And of course at that time there weren't tests, um
that we could get more readily available, um, and so
we just wrote it out. But definitely had kind of
the respiratory issues. So you think that that was likely
(03:50):
in early early cases of COVID, Well, we thought, because
as the month progressed through March, we were wondering. Of course,
at that point we were under lockdown, and um, we
thought this is we had been quarantining ourselves since February
twenty if not because of even thinking that we had COVID,
but because we were so sick. We just weren't leaving
(04:12):
our homes. UM. It turns out actually I did get
an antibody test just a week ago and tested negative.
So whatever would add um it was it was a beast,
but we didn't have that. That being said, we were all, um,
pretty isolated from February on and um, including my husband
(04:34):
because my husband was helping out on that shoot. So UM,
we've been living in our quiet, little rural homestead for
months now, UM, without a lot of contact with the world.
So tell me about the documentary that you were working on.
It's it's titled Unfixed, and you were interviewing people who
(04:56):
have extreme chronic illnesses. Um. We is something that you
yourself also are dealing with exactly. UM. I decided that
I needed to find people that were learning how to
thrive with what they had, and this came about from
my own struggles. UM. I spent about two years pretty
(05:18):
much stripped away from the identity that I once had known,
feeling confident in my body, feeling continent, confident, and the
way I moved through the world. UM, and that isolation
and confusion around what I was experiencing, which now I
know it's called condition called m d D. S um
(05:40):
Maldave de Bachmann syndrome is the longer term, but it's
a neurological condition that is basically makes you feel like
you're a constantly on a boat. So um, like right
now I'm sitting in the car and the car is
kind of bobbing up and down a little bit. And
it goes from varying degrees of oak gentle sees to
(06:03):
wild turgulencies and um, it just throws people off in
every aspect of their lives as you can imagine. Um.
And so it's taken me five years to really adapt
to these sensations and they never go away. It's not
something that you can lay down and oh yeah it's better. Um.
(06:26):
So anyway, I got to a place of feeling so
alone in my experience of this, and I thought, after
exploring all the different possibilities of fixing it, which is
more my mi amo, I've got to find the right doctor,
which doctor heal or medical doctor neurologists. I went to everybody,
(06:48):
and when I couldn't find a cure, I first fell
into a deep state of grief and then, um, somebody
told me one day, what would it be to live
with this? For the rest of your life. And I
didn't like that suggestion, but I it's planted a seed
(07:10):
in me. And when I was ready to start watering
that seed, I am allowed myself that possibility of what
it would be like to move through the world unfixed.
And I thought, well, if I'm going to do that,
then I need to find some people that are doing it.
(07:30):
So I started just searching and they came out of
the woodworks. It didn't take very long. This started last
September of twenty nineteen, and within a few months I
had over fifty conversations with people from all over the country,
including a few people in the UK who wanted to
(07:51):
share their own stories. And by no means are we
all like you know, we're on fixed and this is
great and we're waving our flags. It's more of how
do we do this every day? And some days it
feels broken, in some days it feels like we can
hold gratitude alongside the brokenness. Um and it has been
(08:12):
such an rich journey. And then you add the pandemic
that was not expected, that was not part of the
film plan of getting into people's lives right. It never
is part of a film plan, but it's so interesting
because you went from trying to connect in a way
(08:34):
that was in person, doing these doing these interviews and
getting to know these other people who were contending with
their own chronic illnesses, and then having to stop that
and pivot into another way of gathering and of telling
(08:56):
these stories. So I'd love for you to talk about that,
because I've gone online and looked at what your project
looks like in its current iteration, and it's really beautiful
and special, and I think it has so much to
teach people. Well, thank you, Danny. Um. I do feel
(09:16):
like there has been some blessings in this. First of all,
so there are twenty people now that are in what
we're calling me unfixed community. I don't really like to
call them subjects because it sounds so clinical. So I
we talked about I talked about them as well my
friends members. UM. So there are twenty of us, and
(09:38):
prior to the pandemic hitting, we already knew that we
were going to do some self recorded videos. But alongside
that I was going we had a production calendar where
I was going to be traveling to a number of
these people throughout this year. All the way we had
things booked all the way through October and all over
the world, all over the country, all over the country.
(09:59):
For we had all over the country and that all
you know, a lot of them were on the East coast,
and um, that was going to involve two or three
day film shoots with a larger crew and just you know,
following them around in their lives and having interviews. And
because that's not happening, UM, alongside the self recorded videos
(10:21):
that we were already planning on doing, we are only
doing the self recorded videos. So every month, UM, I
on the first of every month, I send out an
email with the prompt questions that relates something to chronic
illness and what their experiences are. We are into our
fifth month now, and because of the pandemic and because
(10:43):
I'm not on the plane traveling all over to some
of these people, we are just going into the stories
with a little more depth. And I actually last month
asked them to create some bevill alongside their self recorded videos.
And they're getting quite good at turning the camera out
and filming their experiences of life. And what I'm really
(11:07):
realizing is that it's forcing me to be less of
a leader and show up more vulnerably with all of them.
I mean that it actually it just brings tears to
my eyes because I feel like they're they're letting me
into their hearts in a way that I don't think
I would have had had we showed up with our
(11:27):
big crew, um and you know, our fancy gear, and
they're coming to me saying, how are you? Because you
know I'm struggling with my own you know, brain likes
to bounce around and unusual ways, and so, UM, I
think they're recognizing that we're in this together. That's become
(11:49):
That's been such a beautiful, unexpected part of making this film. Um,
I couldn't have scripted it. Can you give a sample
or two of what these prompts have been? Yeah? Well,
last month we actually the one I invited them to
share some b roll alongside their interview was to just
(12:12):
to talk about what a good day is like and
what a bad day is like and knowing that those
terms are very subjective. UM, and you know, how do
we hold those experiences together? Because to some a good
day really maybe a bad day um and vice versa.
So we explored that concept and UM and for me,
(12:37):
it's some of our participants have invisible disabilities, and so
it is especially interesting to see, Okay, what is it
like when I look at you? You look totally normal?
So can you show me with your camera what you're
experiencing inside of your your body right now? And it
(12:58):
was so beautiful to receive, UM, you know, shots of
screens with rain behind them and the screen kind of
muddying the scene, or someone else took UM electrical cables
and put them together so that they created these shocks UM.
And that was our actually our subject in Olympia who
(13:21):
has a condition called tregeminal neuralgia and it creates these
lightning bolt shocks in his brain. And for myself, I
always do them too. To share with them, I put
a piece of plastic monkey in a jello mold and
I shook the jello and like this is on a
bad day, I feel like I'm a monkey inside of
(13:41):
a jello mold that's being wobbled around. And this month
I'm looking forward to what they share. I just sent
out the prompt and I want them to talk about
their caregivers and or their friends, family members, UM, neighbors,
anybody who has shown up for them in a positive,
(14:01):
loving way, and UM I feel like I definitely don't
want to ignore some of the negativity that is part
of living with conic illness. But we have a lot
of that in the world right now, and I thought, let's,
without sounding to cliche, we need more love in this world.
So let's hold our hearts and gratitude and think about
(14:23):
the people that have really been there for us and
what did they do and how did they do it?
And I think for me, the biggest lesson in all
of this, for myself, has been learning to love the difficulties,
learning to love the unpredictability, the uncertainty of my own condition,
(14:45):
and then expanding that outwards into my community and other
people that are experiencing suffering and holding it in my heart,
allowing them to be room for all of it. Growing
up as a you know, Perfectionisticvalle Arena, I didn't have
a lot of room for the ugly stuff. So peace
(15:06):
happens for me in my heart when I stopped resisting
the difficult stuff. That's such an important thing to say.
And you know, I'm struck too by by what you
said about what is a good day for one person
might be a bad day for another, and vice versa,
and I'm wondering what you think about the way that
(15:30):
contending with a chronic illness and sitting in the question
of what would it be like if this is it right,
if this is the way that you're going to be
living the rest of your life, what does that do?
During these times? I mean, I've I have found myself
(15:52):
thinking a lot about you know, people who were and
are sort of emotionally really unprepared for the challenges that
we are all globally living with, and people who somehow
have had more resilience or sort of muscles for it,
which of course changes day by day. It's not like
(16:14):
there's just one fixed way of being. It seems like
it's to step forwards, you know, one step back for everyone.
But is there anything that you and your community talk
about in terms of dealing with these challenges during this
challenging time, which is like an overlay on top of
the challenges that you were already contending with? Yes, um, well,
(16:36):
you know, we did actually a video on coping during COVID.
It was our COVID nineteen toolkit, and I didn't specify
let's you know, how do you how are you mentally coping?
How are you physically coping, how are you spiritually coping?
I just let them speak from their own toolbox, because
they've all had to learn, um to contend with uncertainty
(16:59):
and i'm predictability in their own lives, and they're experts
in a lot of ways. And so it's a great
question because I think we can be turning towards people
with chronic illness right now and saying how do you
do it? And so you know, I actually we got
a really mixed bag from a lot of mental health. UM,
(17:19):
working with your thoughts and positive thinking and self practicing,
self compassion, it was a huge one. And UM, joyful thinking,
finding moments and things to be grateful for in our
lives and balancing that out with what is real pending
in the moment. Like I said earlier, it's like being
(17:40):
able to hold gratitude in one hand and pain in
the other and allowing those both to coexist. Um. And
then we have we have our resident comedian who says,
you know, humor has to be a part of all
of this, otherwise everything is too depressing. And he has
been living in isolation for over ten years with a
(18:01):
traumatic brain injury. And it was a professional photographer, world
renowned photographer, and um has his approach is humor. I
mean my inbox is filled with jokes from him, and
that is we're coping. You know. The one that really
struck me the most that we had a few members
that really talked more about the spirituality and the element
(18:24):
of service and how even in the smallest ways, if
we can turn our attention outwards, because We're always going
to be suffering on some level. I'll always be feeling
this feeling of bobbing up and down, and you know
what it does to my nervous system and the anxiety
of that. But if I can turn my attention outwards
(18:46):
toward my cat, or my husband, or this community of
lovely humans, and how can I care for them in
the smallest ways today, or at least show them that
I love them. It doesn't make the symptoms go away,
but it fuels me and fuels us in such a
profound way. So service was something that a few members
(19:10):
really emphasized. Um. I mean, the list could go on,
but they're all teachers to me right now and to
so many more, and I my hope is that I
could just follow them for the rest of my life.
I don't know if that makes for a very good documentarian.
I've heard stories that are good documentarian is a bit
(19:31):
of a jerk, but I've I've you know, I'm not
following those rules. I've fallen in love with every single
one of them and I care deeply about their lives.
So we'll see how this this unfold. Maybe it'll be
a series. Yes, I would love that it would honor
their stories, um in a in a very profound way.
(19:54):
So my last question for you, and in a way
you've been answering it during this conversation, but what's you
hope not just during this time, but in general, what
feels hopeful? I love that question, and I've been listening
to all of your guests responses, and I guess for me,
(20:14):
I reflect back onto what I've experienced these past five
years and how through suffering and through the darkest night
of my own soul, I was able to find peace
that isn't as shakable as it used to be, and
that was indirect result of the suffering of the agony
(20:41):
that I was feeling. And so my my hope and
what is actually making me feel hopeful is that people
are quieting down and listening to these experiences of sadness
and grief and loss in their own lives and the
lives around them. And I feel like we're all getting
(21:02):
heart surgery in a way, and our hearts are expanding
to allow more breath and more space for this experience
of being human as well as the positive and the good.
And we want it both. But I think if we're
afraid of this, the yucky yer stuff, then we can't
(21:24):
have compassion for it in another And so I am
hopeful that we're all going to come out of this
with expanded hearts that can hold it, hold the bigger picture. Yeah,
that's really lovely, Kimberally, thank you so much for for
talking to me today and for sharing wisdom, um, because
(21:45):
that's what that's what you have, and I'm looking forward
to seeing Unfixed continue to unfold. Ah. That's beautiful, Danny.
I love that to me too. All right, thank you
so much. Take care, all right, thank you, thanks for
(22:10):
listening to the way we live now, tell us the
way you're living now. We want to hear call us on.
You might want to a pen for this nine O
nine three that's nine nine seven eight nine nine five
and record your story and we might just use it
on the pod. Also, you can join our Facebook group
(22:33):
at facebook dot com slash groups slash the Way We
Live Now Pod. We are creating a community here and
we would love for you to join us. You can
find me on Instagram at Danny Ryder. The Way We
Live Now is a production of I Heart Radio. It's
produced by a Lowe Brulante. Bethan Macaluso is executive producer.
Special thanks to Tristan McNeil and Tyler Klang. For more
(22:56):
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