December 8, 2025 • 39 mins
This episode takes a candid look at disability as an endurance sport—where identity, resilience, and community reshape what care and compassion mean.
We explore the emotional and physical endurance of living with a disability, framing daily life as a constant act of adaptation. Our conversation delves into how identity evolves through loss and uncertainty—especially within medical systems that often lack answers. We reflect on how we cope with fundemental changes to our sense of self and how resilience is forged from adversity.
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Episode Transcript
Available transcripts are automatically generated. Complete accuracy is not guaranteed.
(00:00):
You just never, ever, ever, ever, ever getting off that
treadmill of having to like struggle through this shit and
it and it's also not static. It's changing all the time
because we're changing. We're getting older, we have
injuries, we have ups and downs.We get sick, we get better and
our disability changes with all of that.
(00:22):
So you just never know. Hello and welcome to Looking Up
From Here, a podcast adventure where Angelique, Laura and I
explore the all-encompassing experience of living with a
disability. In this podcast, we delve into
(00:42):
how disability influences our interactions with the world
around us and how the world responds to us.
Along the way, we share our personal journeys and open up
about how our lives and identities have been shaped by
our reliance on wheelchairs for mobility.
Thank you for joining us and ourguests for these heartfelt and
(01:02):
often humorous conversations where we hope you'll gain a
deeper understanding of what it takes to navigate life on wheels
and maybe learn something about just living your best life, no
matter what challenges you're facing.
Hi, I'm your host, Samantha Geary.
(01:23):
I was diagnosed with multiple sclerosis in my 20s and have
lived with its ups and downs forover 30 years, including many
levels of disability, and I've used a wheelchair full time
since 2020. Hi, I'm your host Laura Hallesy.
I live in West Quirk in Ireland.I was born with a condition
called Spina Bifta and I have been in a wheelchair for about
(01:45):
30 years. Hi, I'm your host Angelique
Laylay. I used to perform as an aerial
artist and I fell while I was training.
I was paralyzed from the hips down.
I've been in a wheelchair since 2012.
You can learn more about us on our website
lookingupfromhere.com. Thanks for joining us today.
(02:08):
So I get nerve pain on and off. I don't like have it intensely,
but I'll go through a period. It's a bit right Is such strange
because they pretty much know what's happening when you're a
kid. They're like, OK, this is this
trajectory, but like there's notreally any like sort of real
(02:28):
system as an adult. They're like, right, there's no
game plan. Everything is like.
What? Could be, could be that.
And you're like, well, if one person could tell me, even if
it's a lie, I don't care. I'll take it.
Right. Just tell me the consensus.
When I looked up, I started started getting nerve pain and I
(02:49):
started like Googling it and those words they're like some
people at the age will get it and some people won't.
And I was just like, that's not an answer guys.
This is not an answer. Like it's so frustrating.
And they're like just take a percentage of people with and
you're like, why am I always in the percentage?
Like what's going on? If it's bad news, I would just
(03:11):
like to know the answer. And they're very much like 5050.
Thanks. It's not 5050.
It's not 5050. 50 what? OK.
Yeah, when when I was diagnosed with Miss, there were no
treatments, grandmas. So I was told, here's here's
(03:34):
your diagnosis. See you in six months.
Like there was nothing to be done.
And mass is very individual and the only person I knew had it
was my dad. And he had, it turns out, a
different form of it than I'd do.
(03:55):
He had something called chronic progressive.
So he had a slow degradation of the nervous system over time
without like plateaus or, or improvements.
And, and for me, I had a lot of ups and downs.
It's, you know, more of a, I'd have a bad period of time and
then a good period of time than bad.
(04:15):
And, you know, up and down, up and down, up and down, but tends
to overtime look like a, a flight of stairs rather than a
going up to baseline. Oh, but everybody's different.
And I, you know, since I've beeninvolved in the Ms. community
for a long time, being a boy is a different like I have, I've
(04:36):
talked to so many people, all ofwhom have had very different
trajectories. And so just that immense and
uncertainty of just nobody beingable to tell you what it's going
to mean, that's an existential crisis, right?
I think for anybody to like at any age to be suddenly sort of
hit with the here's a real thingthat you're going to have to
(05:00):
deal with. And we don't know exactly what
this is going to mean for you. I mean, it's a, it's a universal
truth that you just learn earlier than you might
otherwise. Like, I think people learn that
as they kind of age into learning about that if they're
lucky. But when you're so young and
(05:23):
you're, you're, you're grapplingwith this big question of
uncertainty and how to live yourlife in this uncertainty, in
this uncertain body. You feel it in a way you never
get a chance to, to live withoutit.
And I mean, Laurie, you really had that.
I had a period of time where I had the all the physical
(05:47):
confidence and whatnot, and thenI just had the rug pulled out
from under me. At some point, all three of us
have had that rug pulled out. Yeah, It's interesting though,
because, you know, for me, and this is just my experience, I'm
not like saying this is experience for everyone with the
same condition as me, but like there was a lot of attention, a
(06:09):
lot of care and a lot of appointments.
And this is what we'll do when Iwas a child, right?
So it was, it was a kind of a game plan, you know what I mean
of here's what this will be likeand whatever.
And, and I was very like, OK, and and then I aged out of P
like the pediatric whatever. And then it was just like, you
(06:33):
have fun there on your own. No, it's just like what?
Like I have found it way lonelier as an adult, that's
all. Just kind of like figure it out
on your own. And I'm like.
Absolutely. Like, I don't know how to do
that people. And it's been helpful for me to
meet so many people with different disabilities who are
(06:54):
in that same boat of like, well,we're just basically figuring
this out. We're.
All figuring it out on our own. Why is that?
It's crazy. I think it's because they don't
know that much about. I think it's because really,
really people don't know that much about as much about the
body or. I think it's that we don't.
I think it's that we don't. Our medical system doesn't treat
(07:17):
the whole person. We keep parts true people.
You know, you go to the gynecologist to treat your lady
bits. You go to a cardiologist to
treat your heart. You go, you know, like they,
they just go and they treat the part of you that needs to be
addressed. And disability is a full body
experience. Yeah, no matter what.
(07:39):
And it and it, and you are extremely aware of how all of
these things fit together, whether it's, you know, the
level cortisol in your system and how well you sleep and how
that affects your skin and how that affects your muscles and
how it affects your pain. And, and then how do you do do
(08:03):
something for one part of yourself that will help other
parts of yourself? That holistic look is not
something that our medical system excels at.
No, like you need a team when you're when you have a
disability. You do.
You do need a team. And teams of doctors that talk
to each other. They don't talk to each other.
No, they don't. Talk to each other and I, I
(08:24):
don't, I mean like obviously can't speak to the US, but I
know that in Ireland like there is kind of a, my experience was
that there was a lot more of a conversation going on when I was
a child because. Right, You had a team as a
child. Is a team.
It's kind of like, OK, well, youknow, and then you're an adult.
(08:47):
They're like, nobody talks to each other.
And you go in and you're like, why am I having the same
conversation five times? And it's so much repeating
yourself. This is the thing that drives me
mad. I had that conversation with
another doctor a month ago. And why can't you just ask him?
I'm tired of talking about it. Right.
(09:09):
I mean. You know that in Samantha way
you, if you're going in and you're getting, you're not being
diagnosed. You're basically just going over
everything over and over and over again and you're just like,
that's exhausting. You're like, I can't talk about
this anymore. And yeah, there's there's very
little communication between different departments in adult
(09:31):
care. Well, departments, you know,
offices, nobody talks to anybodyelse.
I mean, I always, I have this fantasy that if I had had a
clear accident and gone into wheelchair, like somebody would
have taught me something about using a wheelchair.
(09:51):
I've never had anybody to talk to about using a wheelchair
like. Yeah.
Yeah. And P in PT we learned about
using a wheelchair and then theytaught me how to do wheel.
I didn't really like do full on wheelies but they taught me some
stuff about wheelies and jumpingup on curbs and things like
(10:12):
that. Well, and also probably
transfers, like I have had to teach myself everything.
Like I just go on websites and Ilearn and I look at what the
equipment I was like, oh, so there's a board, a transfer
board. And then I'm just like, I wonder
how that works. Like I don't know.
Nobody teaches you this shit. If you if it just happens in the
(10:35):
background, it's not part of an event where you go to the
hospital and everybody's like, OK, now we got to teach her how
to deal with this or. Like I remember this is a small
thing, but I remember. Physical therapy, sorry.
You should be able to go to physical therapy to learn I.
Mean I go to physical therapy every single week but and I have
for. For.
(10:57):
Almost 2 decades and nobody has ever.
You got it. Also depends where you are and
who's doing honest. But like, I remember when I was
learning to drive, I learned to drive when I was like 19.
And I remember the guy who taught me this, right?
He's a really good teacher and he's teach for like the Disabled
(11:17):
Drivers Association. And there wasn't that many
people who drove who who were like specifically taught to
teach people with disabilities how to drive.
And up until that, my dad had been, my dad taught me and my
sisters like just, you know, thenormal stuff that, you know.
And I remember going to him and I had like been learning to
(11:39):
drive for months at that stage or whatever, maybe even a year.
And he sat in the car with me and I was kind of veering over
like a little bit to the right. And he said to me, he have
scoliosis. And I said, yeah, I do.
Yeah. And he said, OK, So he got
little statue and he put it up in the front of the car, like
underneath the windscreen. And he said you think that the
(12:02):
center of the Windstream is herebecause you've got scoliosis and
your posture is this way, but actually it's here.
And he moved it over a couple and he's.
So if you could just adjust whatwhere you think the middle is,
is not the middle. Laura.
Wow. And he was, I was like, oh, and
he's like, so that's why you're driving very close to the white
(12:25):
line because you think middle. Is.
And he was like, so we just haveto like reorganize your thinking
because he said the way you're sitting, it's the middle is not
the middle is not the middle. Do you use your feet to drive or
hand controls? No.
It's hand controls, but it really helps me because I was
like, he's like you're just slightly over to the did that.
(12:49):
Change like everything. Everything.
Out on the. Street and.
Right after that I was like, oh OK, I can see where the problem
is, right? Because my dad.
Would be like, Laura, you're over too far and I'd like I'm
not. Over too far.
Like Laura. And he just was like, it's
because you, the middle is, yourmiddle is not our middle.
It's not. Our middle Angelique, do you
(13:11):
drive? No, Nope, I never learned and I
I mean no, I I used to drive, but I.
Was you drove? You drove before the accident.
I drove. Before the accident, yeah.
And you? Don't and and you haven't
learned to drive, no. I, I wish, I wish I had now, but
yes and no. I mean, I my goal was always to
(13:34):
live in a town where I didn't need a car.
Right and. I didn't realize I was going to
be living with my dad and then Ishould have been able to drive
so that I could get him around. Also, when I, when I was such
an, such an angry driver, like Ijust don't know, driving in LA
(13:56):
after driving in LA for so long,I just became such an angry
driver that whenever I stopped driving, it was such a relief.
And then I would just like, I know metro mobility was kind of
a pain sometimes, but I loved them.
And even if it took a while, I would just sit there and just
let them drive and I would listen to podcasts and, you
(14:21):
know, just take my time and I knew I wasn't getting angry
about anything. And I would just get home when I
got home. And that was how that is so.
Zen, that's. Nice it is nice it.
Was better than it. Was it's.
It's actually driving is an interesting question too,
because I also see that a lot inthe aging of like the thing that
(14:44):
people when they get to be in their 80s and 90s, they don't
want to give up driving and all that, that, you know, talk about
identity, you know, somebody who's able to drive and with all
the freedom and the flexibility and all of that comes with that,
that is just like a really hard thing for people to let go of.
(15:07):
Well, there's a freedom in the, you know, sort of.
I could just leave. I can just go.
Like I could just leave, right? Right.
Yeah, I don't. Know I have this fantasy though,
that like, I don't know how you guys feel about this, but like,
you know, in the movies when like people have a fight and
like screaming each other and the slam, they like walk out,
(15:30):
slam the door. And I'm like, when you're
disabled, like you can't do that.
Just wait 10 minutes while I getmy chair in the car.
Like it loses. Oh, if I live somewhere where I
could just like go out in the street and I don't know, go, but
like to sit in my driveway and be like, go, take me 10 minutes,
go to the car. Really, it takes the sting out
(15:52):
of the water. Even getting out a door and
slamming it like just. Yeah.
That statement. You're always like, never get
out fast enough. Yeah, no.
You can't. That's whenever.
I see that in the movies. I'm like, oh, I love to be able
to do that. And I saw someone the other day
saying who was born in the 80s and she was like, I really miss
(16:14):
the phone with the cord because you could slam the phone down
like right. Mobile.
Phones you just it's not as satisfying.
That's true. And she's like, she's like,
there was a great the feeling and like slamming the phone
there was like. There was.
Yeah, I know. It's one of the great pleasures
that our our youngsters will never know how young.
(16:36):
People don't know. Yeah, it's true.
Well. I wanted to circle back around
to the this topic that we started on about identity and
and loss. And because I I do want to just
explore a little bit this idea of so you lose all of these
(16:58):
parts and is there. How have you felt about what has
replaced it? Like do you feel as strong a
don't know what the word is association with the newer self
(17:19):
selves then you did the older self like has that is there a
balance there? Are there are there Silver
Linings even in, in the that those trade-offs I.
Am not sure for me yet. I mean, there's some parts of me
that I've that I feel like I've lost that.
(17:43):
I. Really do miss.
And I'm not sure that like the way I've set my life up that I'm
really going to get it back, youknow, and, or that I even want
it back at this point. But that's a hard one.
(18:03):
That's a hard one. I mean, you know, when I think
about the fact, when I think about where I am right now, like
looking after my dad, you know, being here, I never thought I'd
be here living in Florida. Like I wouldn't want to be
anywhere else. Ever.
Like as much as like I hate the humidity, like wreaks havoc on
(18:27):
my body. I know I complain about it all
the time, but like, I wouldn't want to be anywhere else in a
million years. I wouldn't want to be anywhere
else. I'm glad that I didn't have
don't have a relationship because it wouldn't allow me to
be able to spend the time that Ican spend with and for my dad.
So there and there. So yeah, yeah.
(18:52):
So yeah, there are things that Idon't have that I gave up, but
those are things that that that were given up like right from
the get go that I never even thought would be gone.
Right. Well, how could you?
Yeah, so I was. Listening to Apbs special last
(19:16):
night with my husband called theWisdom Keepers and they
interview a variety of spiritualleaders.
And one of them is Richard Rohr,who is a Franciscan Friar and
he's written lots and lots of books and it's a spiritual
(19:36):
teacher and he got talking aboutidentity and that we have our
our sort of what I would call social identity, you know, the
things you relate to. I'm a, you know, 50 something
white woman, American, whatever,like those are all identity
(20:01):
things. And he asks.
He says, well, what? Who were you before you were
those things? And and then he said it's the
answer to that question is sort of the root of true spirituality
that that there's a there is a core self that precedes
perceived identities that come later.
(20:23):
That is at the heart of our our spiritual life.
And I thought that was just an interesting thing to think
about. I'm still, I don't know the
answer to that question, although I sort of it's
something I think you feel your way into because I don't know if
words could really describe it. But I do think that there's
(20:45):
maybe some of that, that question can be part of the
disabled experience because if you're willing to go there, you
can you're, you're, you are thrust into those questions by
the things that happened to you and you can explore that to some
(21:06):
level. Yeah, I think it's like, you
know, Angelique was saying it there as well, like, you know,
and I was saying it a little bitat the beginning, but like there
are sometimes when I'm like, oh,we'll fight if I'd known that or
something. But I mean, you know, because
sometimes being disabled is like, it's a good thing that you
(21:32):
don't know certain parts of it when you get started.
Right if. I had, if I knew some of it or
when I was young, I'd be like, Oh my God, that's really
terrifying or something. But you live into it in a way
that is like this is part of thewhole thing of the body is like
(21:53):
I was moving away from it because I was like, I don't want
to. I'm not interested in whatever
it has to be teaching me. Like I feel I've learned a lot.
No for that now, right? And but realistically, if I
really hang out here, it knows how to.
Be disabled. Knows how to be in this body and
(22:15):
figure out the things that has to be figured out on a daily
basis. Like if there is some wisdom
that you know that your body gets after a while, it's like if
you live in it long enough, it learns to adapt and it's not
horrifying. You kind of like, oh, OK, I've,
I've, I've worked out how to live with this or I've worked
out how to live in this situation well.
(22:38):
That's ability, right there is aright there's.
There's ability at the heart of that.
Sure, and there's wisdom and yes, the fact that it knows how
to cope with that. You know, I remember being
enemies and you careful now I have not to mention anyone's
(23:01):
name or anyone who like I would,you know, I don't want to say
anyone without their permission.But I remember someone who had a
disability and another person who was doing the yoga training
was kind of, you know, finding it emotional and and upsetting
to see them in, you know, pain or whatever.
(23:22):
And I remember Matthew Sancho saying he knows how to live in
his in this body. It's it's you that are finding
it uncomfortable. Yeah.
Because I think the outside experience of it is like, oh
God, that must be really hard for you.
And it's like, no, no, it like my body knows what it's doing.
(23:44):
Like it's, it's been here a longtime.
Do you know what I mean? I do know what you mean.
So very much so it's very much the, that there's a, a seed in
that idea that I think is reallyimportant and worth talking
about more. Because I think it's from that
seed that grows the overcoming story, the the courage story,
(24:09):
the, the thing that we've talkedabout both in MBS with Matthew,
with each other that we have this sort of fraught
relationship with. But it comes from somewhere.
And I think it comes from that, that when you're in the fight,
you are able to see and feel your way through it and you are
(24:35):
able to do it and you know that you are able.
And until you're tested in that way, you don't know and.
It's also like when I was a kid,I remember, I remember when I
was a kid learning that like as you get older that you're that
your hair goes Gray and that like you have to dye your hair.
(24:57):
And I remember when I was a little kid being like you.
Have to dye your hair? Clearly.
That's not true anyways, like. If you want to keep your hair
from going. And I'm never being like, Oh my
God. Like, And I remember saying to
my mom, do you have to do that? She's like, yeah.
And I was like, I remember beinglike, that's horrifying.
(25:22):
Like saying earlier when you when you're a kid and you see,
like, my sister has two young kids.
And like I was saying I was 40 this year.
We went to my birthday party andmy sister said to them, do you
think 40 is really old? And they were like, yeah.
Like they were really like, oh, my God, you're young.
You're like, that seems terrible, you know, but you just
(25:44):
like as you get older, you're like, oh, all those things.
Oh, yeah. It's.
Always like 5 years older than where you are.
I know what I. Mean and it's fine as it goes
on, but it's like the idea of something can sometimes feel
like, Oh my God, that doesn't seem like a good idea, you know?
My grandfather lived to be 102, almost 103 and I remember
(26:08):
sitting on apartment talking. He was amazing.
He was just using human. He, he said to me, you know, I
just, it's like I just can't, I still can't wrap around my mind
around the fact that I'm this old because inside I'm like 24,
you know, like I, I will sometimes pass a mirror and I'll
(26:32):
see myself and I think, who's that old guy?
I think that there is this sort of inner identity that we have
no matter what. And our bodies change in all
these different ways for all these different reasons.
And there's some inner us that'sthey're always there just coping
(26:53):
with all of these, these changes, all these things.
Most of my 20s and 30s and stillfelt like that 12 year old.
You know, I would be surprised when I saw myself then I'd be
like, I still feel like I'm 12. My brother and I used to joke
about that. And then when I got like later
into my late 30s and I was like,I think, I think I'm finally
(27:14):
like 20. I think I'm finally 20 or 30 and
now I'm like, wait, wait, where am I?
I know. Yeah.
It's like you just, you don't have the perception of yourself
like that. And if you are lucky enough to
be well enough to, you know, healthy enough to get on with
(27:34):
your life in that way, then you,you feel the same.
You know what I mean? Like as you do.
And every so often, your body reminds you you are not.
You're like, OK. Yeah, you know.
I see now what's happening. I guess it's the same with, I
think it's the same, very similar thing being disabled.
It's like you, if I knew certainthings that I would have to do
(27:55):
or certain things that would getharder to do younger.
I'm kind of glad they didn't tell me about those parts,
right? Right.
Well, it's like that Garth Brooks song.
I'm glad I didn't know the way it all would go.
Yeah. You know.
Because it would have given you a choice that you wouldn't have
been prepared to make. It would have been a.
(28:18):
False choice. You don't need.
You don't need to know those things.
It's like those people would say, you know, what's that movie
when there's a movie when he's like, you know, if you were, if
you were told what day you were gonna.
Oh yeah. What is that movie Die?
Or whatever. It's like there's a, there's a
better, it's better to not know a certain amount of measures
(28:39):
like, OK, because you and also you have more ability and more
strength and more capacity than you think you do.
Like if you told me at 20 that Iwas going to have to do XYZ, I
was like, no, I don't think I'm up to, I don't think I'm up for
that. You know what I mean?
Right. But you do, you know you figure
out the same. Thing as when people say, if you
(29:02):
know, if I went through what youwent through, I'd probably kill
myself and you're like we all. I used to think the same thing,
but turns out no. Because, you know, I'm still,
I'm still here. I'm still.
Here wasn't. Even a thought in my head, you
know, like and it. Turns out that there's a lot
more beauty in this than I thought, you know what I mean?
(29:26):
Like that's why we. Need to get what?
What is her name? Chloe.
Who wrote the book Easy Beauty Beauty.
Oh. Yeah.
I mean, there's so much in that book that's so fabulous about,
you know, to not to mention the way she opens it, like she's
sitting in a bar with two friends who are talking about
whether her life is worth living.
Oh. Yeah, for sure, right.
(29:48):
And that's sort of a construct for the whole book, which would
be a great conversation, by the way, that we could have at some
point, which is, you know, this like what's worth it?
And not in a not in a macabre way, but just like with that,
that what we would have thought before.
I know what I thought in my 20s when I was given my diagnosis
(30:12):
and then you sort of where I am now, and it's something that I
think about a lot of sort of someone, you know, had told me
how this was going to go. I have lots of thoughts about
how I might have responded to that.
But I kind of knew like what waspossible.
I knew what was could have been in the cards.
(30:34):
Like I feel like I got away witha lot before things got really,
really hard. Also, if you'd have told me
like, you know, when you when you're born with a disability,
you sort of eventually go like, you know, it's terrible thing to
say now. And I I don't feel like this
now. Just I want a caveat.
(30:54):
This amazing. Like when I was young, I used to
be like, yeah, well, I have that, but I'm really glad that I
don't have that one. Like it's almost like a
comparison of like, well, yeah, well, I have this disability,
but like that one will be worse.You know, they're kind of and.
Like one of my very favorite sayings is when you think of all
the things that you don't have that you want, think of all the
(31:17):
things that you don't have that you don't want.
Right. But The thing is that horrifies
me. But that I was like, I mean,
I've gotten to know so many different people with different
disabilities and we have I, you know, there were times when I
looked at that some of what theyare living with and we're like,
oh, that that must be way harder.
And it's, it's it's own, everyone has its own brand of
(31:40):
heart, right. Yeah.
Like yours is a brand of heart. Mine is a brand of heart.
Angelique's is a brand of heart.Like everyone has their own
struggle with it. And everyone gets off lately in
certain areas that others don't,you know, like they're all their
own kind of thing. And, and now when I think when I
see those people or talk to people and I, I go, I, I feel
(32:01):
shamed that I was like almost comparing.
Well, at least I don't have because I think that's not a
that's really not a nice way to perceive other people because I
do it as well as. People do it to you too, right?
Like I've had people who've beentelling me about something hard
and they're like, well, I don't mean to complain because it's
not like you know how much your life sucks.
(32:22):
Like they don't say exactly, butthat's kind of what they're
saying. And I'm just like.
Loud because I had it said to me.
But I would be lying if I said that.
There hasn't been times where I've thought that.
And now I chastise myself for that as an old molder, because
I'm like, first of all, you haveno idea.
Right. It's like to live inside that
person's body, like you have no idea.
(32:45):
And we all kind of make an assumption because I think my
brand of it is OK and I can manage it and this is how I
figured out how to live in this body.
But we're all doing that. Right, I had a friend of mine,
he worked at a pizza place. That's the background.
He usually dropped off my pizza when I would order, so I was
excited to see him when he dropped it off.
(33:06):
Turns out it was somebody else who dropped off the pizza.
And I was like, oh, I thought myfriend Andrew was going to drop
off. He goes, oh, no, but he told me
about you. And I was like, oh, cool.
And then he goes, yeah. He's like, man, you've had so
much tragedy. And I was like, oh, OK, all
right, see you later. Bye.
Oh. Man.
(33:28):
I mean, and I'm sure my friend Andrew was like, yeah, man, you
know, it sucks. Her mama's Alzheimer's, she lost
her brother would just like, I'msure he just like told him, just
like a little bit about his friend who he doesn't think of
as a tragic figure. Right, right.
Who knows? That's how the take away, yeah.
That's now that's how I am seen.It's like, what the fuck?
(33:49):
Why would you say that to somebody?
Why would you say that to somebody?
I don't understand. I will never understand people's
idea of saying that to your facelike, but you know what I mean.
It isn't a. Tragedy they must.
Know that that doesn't make you feel good.
You know what I mean? But they're not.
Thinking about what you feel at all, that's not even.
(34:12):
I think they're trying to show some sort of compassion, like,
Oh yeah, I'm so sorry, but. Weird.
As if that we walk around all the time with that like front
and center, you know? Please feel sorry for me
worrying. About it, That's weird.
Anyway, I just think, like everyone you know, you don't
(34:36):
have an idea what you can manageuntil you're doing it.
Yeah, but then let's let's just take a moment to say I've hate
the expression. What doesn't kill you makes you
stronger. And for years now, for years
now, I've been like, you know what?
I am strong enough, thank you very much.
I do not need to be any stronger.
So just fuck off. I've I've done what I need to
(35:00):
do, like just leave me alone. Let me just like me I I I've got
what I need and whatever these lessons were, I think I've
learned them. Thank you I.
Remember going, it was like Christmas time.
I remember I was doing, I was working, I was doing some work
in the were in the university where I used to go school and I
(35:20):
was doing some work over the Christmas holidays.
And it was just like the weatherwas terrible.
And I was going there, driving there and I had to get to the
place and you know, you like you're in your chair, you're
soaking wet, you're trying to get in and out.
And it was dark. So I was really not feeling it
was, it was a slack. Anyway, I remember we had this,
(35:42):
we had this MBS group and I decided I would do it in the, I
would go on the phone in the carand I would listen in.
And I remember that was like, how are you getting on Laura?
What was your day like? And I said, I just feel like
whoever is up there, they, they thought that I was, I was
(36:04):
equipped for this job and I am not like they saw me and they
thought I'll give this to her because she can handle it like,
and I was like, and I just want to tell that person that I do
not have the skills for this job.
I don't, I am not the person forthis job and I'm not qualified
(36:27):
to be disabled. I'm not qualified for it.
Other people are better at it. I would like to.
Motion please. I think they should have picked
somebody with better coping skills as well.
I want to go. Back to cashier.
I'll go back to cashier bagging groceries.
Thank you also. I really appreciate that you
think that I'm able for this shit, but I'm really just not.
(36:49):
I was just really. I'm not.
Not today. I can't handle it, not today.
Someday. Yeah, I get that.
He's like, it was like, put someone up there thinks that I
have an enormous amount of scalethat I clearly don't have.
Like, OK, yeah. Yeah, sometimes that well goes
dry. There are a lot of bad
(37:11):
expressions, though. There's so many of them that we
should retire. Yeah, I heard.
I heard one the other day. It was like, God only gives you
as much as he knows you can handle.
And I was like take issue with that one too.
Actually, I don't think that's true.
I think we have a lot of examples of of that but not
(37:33):
being true. But anyway, and just.
The idea though, that it makes you, I don't know if it does
make like it is, it feels cruel.Right.
It feels like that there's sort of a sense of being punished for
being strong and. Also a kind of a dismissal of
how you feel, right? Right, right.
(37:55):
Yeah, Don't like that either. Hey, before we go, we want to
tell you about a very special organization that brought the
three of us together five years ago.
It's called Mind Body Solutions.They offer live online adaptive
yoga classes, a YouTube library,unique student only gathering
spaces, and special live events hosted by founder Matthew
(38:19):
Sanford. There's no feat participate and
no yoga experience required. At MBS, you can connect with
others who have disabilities andreconnect with yourself.
That's their mission, to help people live more vibrantly and
more connected, both in mind andbody.
MBS has helped each of us discover new ways to live, work,
(38:40):
move, and simply be in the bodies we have.
And they can help you too. So if you're listening and
living with a disability or knowsomeone who is, check out their
website at mindbodysolutions.org.
It's free, it's hopeful, and there's room for everybody.
(39:01):
Thatsmindbodysolutions.org. You can also connect with them
through our lookingupfromhere.com resources
web page. Thank you.
You just never, ever, ever, ever, ever getting off that
treadmill of having to like struggle through this shit and
it and it's also not static. It's changing all the time
because we're changing. We're getting older, we have
injuries, we have ups and downs.We get sick, we get better and
our disability changes with all of that.
(00:22):
So you just never know. Hello and welcome to Looking Up
From Here, a podcast adventure where Angelique, Laura and I
explore the all-encompassing experience of living with a
disability. In this podcast, we delve into
(00:42):
how disability influences our interactions with the world
around us and how the world responds to us.
Along the way, we share our personal journeys and open up
about how our lives and identities have been shaped by
our reliance on wheelchairs for mobility.
Thank you for joining us and ourguests for these heartfelt and
(01:02):
often humorous conversations where we hope you'll gain a
deeper understanding of what it takes to navigate life on wheels
and maybe learn something about just living your best life, no
matter what challenges you're facing.
Hi, I'm your host, Samantha Geary.
(01:23):
I was diagnosed with multiple sclerosis in my 20s and have
lived with its ups and downs forover 30 years, including many
levels of disability, and I've used a wheelchair full time
since 2020. Hi, I'm your host Laura Hallesy.
I live in West Quirk in Ireland.I was born with a condition
called Spina Bifta and I have been in a wheelchair for about
(01:45):
30 years. Hi, I'm your host Angelique
Laylay. I used to perform as an aerial
artist and I fell while I was training.
I was paralyzed from the hips down.
I've been in a wheelchair since 2012.
You can learn more about us on our website
lookingupfromhere.com. Thanks for joining us today.
(02:08):
So I get nerve pain on and off. I don't like have it intensely,
but I'll go through a period. It's a bit right Is such strange
because they pretty much know what's happening when you're a
kid. They're like, OK, this is this
trajectory, but like there's notreally any like sort of real
(02:28):
system as an adult. They're like, right, there's no
game plan. Everything is like.
What? Could be, could be that.
And you're like, well, if one person could tell me, even if
it's a lie, I don't care. I'll take it.
Right. Just tell me the consensus.
When I looked up, I started started getting nerve pain and I
(02:49):
started like Googling it and those words they're like some
people at the age will get it and some people won't.
And I was just like, that's not an answer guys.
This is not an answer. Like it's so frustrating.
And they're like just take a percentage of people with and
you're like, why am I always in the percentage?
Like what's going on? If it's bad news, I would just
(03:11):
like to know the answer. And they're very much like 5050.
Thanks. It's not 5050.
It's not 5050. 50 what? OK.
Yeah, when when I was diagnosed with Miss, there were no
treatments, grandmas. So I was told, here's here's
(03:34):
your diagnosis. See you in six months.
Like there was nothing to be done.
And mass is very individual and the only person I knew had it
was my dad. And he had, it turns out, a
different form of it than I'd do.
(03:55):
He had something called chronic progressive.
So he had a slow degradation of the nervous system over time
without like plateaus or, or improvements.
And, and for me, I had a lot of ups and downs.
It's, you know, more of a, I'd have a bad period of time and
then a good period of time than bad.
(04:15):
And, you know, up and down, up and down, up and down, but tends
to overtime look like a, a flight of stairs rather than a
going up to baseline. Oh, but everybody's different.
And I, you know, since I've beeninvolved in the Ms. community
for a long time, being a boy is a different like I have, I've
(04:36):
talked to so many people, all ofwhom have had very different
trajectories. And so just that immense and
uncertainty of just nobody beingable to tell you what it's going
to mean, that's an existential crisis, right?
I think for anybody to like at any age to be suddenly sort of
hit with the here's a real thingthat you're going to have to
(05:00):
deal with. And we don't know exactly what
this is going to mean for you. I mean, it's a, it's a universal
truth that you just learn earlier than you might
otherwise. Like, I think people learn that
as they kind of age into learning about that if they're
lucky. But when you're so young and
(05:23):
you're, you're, you're grapplingwith this big question of
uncertainty and how to live yourlife in this uncertainty, in
this uncertain body. You feel it in a way you never
get a chance to, to live withoutit.
And I mean, Laurie, you really had that.
I had a period of time where I had the all the physical
(05:47):
confidence and whatnot, and thenI just had the rug pulled out
from under me. At some point, all three of us
have had that rug pulled out. Yeah, It's interesting though,
because, you know, for me, and this is just my experience, I'm
not like saying this is experience for everyone with the
same condition as me, but like there was a lot of attention, a
(06:09):
lot of care and a lot of appointments.
And this is what we'll do when Iwas a child, right?
So it was, it was a kind of a game plan, you know what I mean
of here's what this will be likeand whatever.
And, and I was very like, OK, and and then I aged out of P
like the pediatric whatever. And then it was just like, you
(06:33):
have fun there on your own. No, it's just like what?
Like I have found it way lonelier as an adult, that's
all. Just kind of like figure it out
on your own. And I'm like.
Absolutely. Like, I don't know how to do
that people. And it's been helpful for me to
meet so many people with different disabilities who are
(06:54):
in that same boat of like, well,we're just basically figuring
this out. We're.
All figuring it out on our own. Why is that?
It's crazy. I think it's because they don't
know that much about. I think it's because really,
really people don't know that much about as much about the
body or. I think it's that we don't.
I think it's that we don't. Our medical system doesn't treat
(07:17):
the whole person. We keep parts true people.
You know, you go to the gynecologist to treat your lady
bits. You go to a cardiologist to
treat your heart. You go, you know, like they,
they just go and they treat the part of you that needs to be
addressed. And disability is a full body
experience. Yeah, no matter what.
(07:39):
And it and it, and you are extremely aware of how all of
these things fit together, whether it's, you know, the
level cortisol in your system and how well you sleep and how
that affects your skin and how that affects your muscles and
how it affects your pain. And, and then how do you do do
(08:03):
something for one part of yourself that will help other
parts of yourself? That holistic look is not
something that our medical system excels at.
No, like you need a team when you're when you have a
disability. You do.
You do need a team. And teams of doctors that talk
to each other. They don't talk to each other.
No, they don't. Talk to each other and I, I
(08:24):
don't, I mean like obviously can't speak to the US, but I
know that in Ireland like there is kind of a, my experience was
that there was a lot more of a conversation going on when I was
a child because. Right, You had a team as a
child. Is a team.
It's kind of like, OK, well, youknow, and then you're an adult.
(08:47):
They're like, nobody talks to each other.
And you go in and you're like, why am I having the same
conversation five times? And it's so much repeating
yourself. This is the thing that drives me
mad. I had that conversation with
another doctor a month ago. And why can't you just ask him?
I'm tired of talking about it. Right.
(09:09):
I mean. You know that in Samantha way
you, if you're going in and you're getting, you're not being
diagnosed. You're basically just going over
everything over and over and over again and you're just like,
that's exhausting. You're like, I can't talk about
this anymore. And yeah, there's there's very
little communication between different departments in adult
(09:31):
care. Well, departments, you know,
offices, nobody talks to anybodyelse.
I mean, I always, I have this fantasy that if I had had a
clear accident and gone into wheelchair, like somebody would
have taught me something about using a wheelchair.
(09:51):
I've never had anybody to talk to about using a wheelchair
like. Yeah.
Yeah. And P in PT we learned about
using a wheelchair and then theytaught me how to do wheel.
I didn't really like do full on wheelies but they taught me some
stuff about wheelies and jumpingup on curbs and things like
(10:12):
that. Well, and also probably
transfers, like I have had to teach myself everything.
Like I just go on websites and Ilearn and I look at what the
equipment I was like, oh, so there's a board, a transfer
board. And then I'm just like, I wonder
how that works. Like I don't know.
Nobody teaches you this shit. If you if it just happens in the
(10:35):
background, it's not part of an event where you go to the
hospital and everybody's like, OK, now we got to teach her how
to deal with this or. Like I remember this is a small
thing, but I remember. Physical therapy, sorry.
You should be able to go to physical therapy to learn I.
Mean I go to physical therapy every single week but and I have
for. For.
(10:57):
Almost 2 decades and nobody has ever.
You got it. Also depends where you are and
who's doing honest. But like, I remember when I was
learning to drive, I learned to drive when I was like 19.
And I remember the guy who taught me this, right?
He's a really good teacher and he's teach for like the Disabled
(11:17):
Drivers Association. And there wasn't that many
people who drove who who were like specifically taught to
teach people with disabilities how to drive.
And up until that, my dad had been, my dad taught me and my
sisters like just, you know, thenormal stuff that, you know.
And I remember going to him and I had like been learning to
(11:39):
drive for months at that stage or whatever, maybe even a year.
And he sat in the car with me and I was kind of veering over
like a little bit to the right. And he said to me, he have
scoliosis. And I said, yeah, I do.
Yeah. And he said, OK, So he got
little statue and he put it up in the front of the car, like
underneath the windscreen. And he said you think that the
(12:02):
center of the Windstream is herebecause you've got scoliosis and
your posture is this way, but actually it's here.
And he moved it over a couple and he's.
So if you could just adjust whatwhere you think the middle is,
is not the middle. Laura.
Wow. And he was, I was like, oh, and
he's like, so that's why you're driving very close to the white
(12:25):
line because you think middle. Is.
And he was like, so we just haveto like reorganize your thinking
because he said the way you're sitting, it's the middle is not
the middle is not the middle. Do you use your feet to drive or
hand controls? No.
It's hand controls, but it really helps me because I was
like, he's like you're just slightly over to the did that.
(12:49):
Change like everything. Everything.
Out on the. Street and.
Right after that I was like, oh OK, I can see where the problem
is, right? Because my dad.
Would be like, Laura, you're over too far and I'd like I'm
not. Over too far.
Like Laura. And he just was like, it's
because you, the middle is, yourmiddle is not our middle.
It's not. Our middle Angelique, do you
(13:11):
drive? No, Nope, I never learned and I
I mean no, I I used to drive, but I.
Was you drove? You drove before the accident.
I drove. Before the accident, yeah.
And you? Don't and and you haven't
learned to drive, no. I, I wish, I wish I had now, but
yes and no. I mean, I my goal was always to
(13:34):
live in a town where I didn't need a car.
Right and. I didn't realize I was going to
be living with my dad and then Ishould have been able to drive
so that I could get him around. Also, when I, when I was such
an, such an angry driver, like Ijust don't know, driving in LA
(13:56):
after driving in LA for so long,I just became such an angry
driver that whenever I stopped driving, it was such a relief.
And then I would just like, I know metro mobility was kind of
a pain sometimes, but I loved them.
And even if it took a while, I would just sit there and just
let them drive and I would listen to podcasts and, you
(14:21):
know, just take my time and I knew I wasn't getting angry
about anything. And I would just get home when I
got home. And that was how that is so.
Zen, that's. Nice it is nice it.
Was better than it. Was it's.
It's actually driving is an interesting question too,
because I also see that a lot inthe aging of like the thing that
(14:44):
people when they get to be in their 80s and 90s, they don't
want to give up driving and all that, that, you know, talk about
identity, you know, somebody who's able to drive and with all
the freedom and the flexibility and all of that comes with that,
that is just like a really hard thing for people to let go of.
(15:07):
Well, there's a freedom in the, you know, sort of.
I could just leave. I can just go.
Like I could just leave, right? Right.
Yeah, I don't. Know I have this fantasy though,
that like, I don't know how you guys feel about this, but like,
you know, in the movies when like people have a fight and
like screaming each other and the slam, they like walk out,
(15:30):
slam the door. And I'm like, when you're
disabled, like you can't do that.
Just wait 10 minutes while I getmy chair in the car.
Like it loses. Oh, if I live somewhere where I
could just like go out in the street and I don't know, go, but
like to sit in my driveway and be like, go, take me 10 minutes,
go to the car. Really, it takes the sting out
(15:52):
of the water. Even getting out a door and
slamming it like just. Yeah.
That statement. You're always like, never get
out fast enough. Yeah, no.
You can't. That's whenever.
I see that in the movies. I'm like, oh, I love to be able
to do that. And I saw someone the other day
saying who was born in the 80s and she was like, I really miss
(16:14):
the phone with the cord because you could slam the phone down
like right. Mobile.
Phones you just it's not as satisfying.
That's true. And she's like, she's like,
there was a great the feeling and like slamming the phone
there was like. There was.
Yeah, I know. It's one of the great pleasures
that our our youngsters will never know how young.
(16:36):
People don't know. Yeah, it's true.
Well. I wanted to circle back around
to the this topic that we started on about identity and
and loss. And because I I do want to just
explore a little bit this idea of so you lose all of these
(16:58):
parts and is there. How have you felt about what has
replaced it? Like do you feel as strong a
don't know what the word is association with the newer self
(17:19):
selves then you did the older self like has that is there a
balance there? Are there are there Silver
Linings even in, in the that those trade-offs I.
Am not sure for me yet. I mean, there's some parts of me
that I've that I feel like I've lost that.
(17:43):
I. Really do miss.
And I'm not sure that like the way I've set my life up that I'm
really going to get it back, youknow, and, or that I even want
it back at this point. But that's a hard one.
(18:03):
That's a hard one. I mean, you know, when I think
about the fact, when I think about where I am right now, like
looking after my dad, you know, being here, I never thought I'd
be here living in Florida. Like I wouldn't want to be
anywhere else. Ever.
Like as much as like I hate the humidity, like wreaks havoc on
(18:27):
my body. I know I complain about it all
the time, but like, I wouldn't want to be anywhere else in a
million years. I wouldn't want to be anywhere
else. I'm glad that I didn't have
don't have a relationship because it wouldn't allow me to
be able to spend the time that Ican spend with and for my dad.
So there and there. So yeah, yeah.
(18:52):
So yeah, there are things that Idon't have that I gave up, but
those are things that that that were given up like right from
the get go that I never even thought would be gone.
Right. Well, how could you?
Yeah, so I was. Listening to Apbs special last
(19:16):
night with my husband called theWisdom Keepers and they
interview a variety of spiritualleaders.
And one of them is Richard Rohr,who is a Franciscan Friar and
he's written lots and lots of books and it's a spiritual
(19:36):
teacher and he got talking aboutidentity and that we have our
our sort of what I would call social identity, you know, the
things you relate to. I'm a, you know, 50 something
white woman, American, whatever,like those are all identity
(20:01):
things. And he asks.
He says, well, what? Who were you before you were
those things? And and then he said it's the
answer to that question is sort of the root of true spirituality
that that there's a there is a core self that precedes
perceived identities that come later.
(20:23):
That is at the heart of our our spiritual life.
And I thought that was just an interesting thing to think
about. I'm still, I don't know the
answer to that question, although I sort of it's
something I think you feel your way into because I don't know if
words could really describe it. But I do think that there's
(20:45):
maybe some of that, that question can be part of the
disabled experience because if you're willing to go there, you
can you're, you're, you are thrust into those questions by
the things that happened to you and you can explore that to some
(21:06):
level. Yeah, I think it's like, you
know, Angelique was saying it there as well, like, you know,
and I was saying it a little bitat the beginning, but like there
are sometimes when I'm like, oh,we'll fight if I'd known that or
something. But I mean, you know, because
sometimes being disabled is like, it's a good thing that you
(21:32):
don't know certain parts of it when you get started.
Right if. I had, if I knew some of it or
when I was young, I'd be like, Oh my God, that's really
terrifying or something. But you live into it in a way
that is like this is part of thewhole thing of the body is like
(21:53):
I was moving away from it because I was like, I don't want
to. I'm not interested in whatever
it has to be teaching me. Like I feel I've learned a lot.
No for that now, right? And but realistically, if I
really hang out here, it knows how to.
Be disabled. Knows how to be in this body and
(22:15):
figure out the things that has to be figured out on a daily
basis. Like if there is some wisdom
that you know that your body gets after a while, it's like if
you live in it long enough, it learns to adapt and it's not
horrifying. You kind of like, oh, OK, I've,
I've, I've worked out how to live with this or I've worked
out how to live in this situation well.
(22:38):
That's ability, right there is aright there's.
There's ability at the heart of that.
Sure, and there's wisdom and yes, the fact that it knows how
to cope with that. You know, I remember being
enemies and you careful now I have not to mention anyone's
(23:01):
name or anyone who like I would,you know, I don't want to say
anyone without their permission.But I remember someone who had a
disability and another person who was doing the yoga training
was kind of, you know, finding it emotional and and upsetting
to see them in, you know, pain or whatever.
(23:22):
And I remember Matthew Sancho saying he knows how to live in
his in this body. It's it's you that are finding
it uncomfortable. Yeah.
Because I think the outside experience of it is like, oh
God, that must be really hard for you.
And it's like, no, no, it like my body knows what it's doing.
(23:44):
Like it's, it's been here a longtime.
Do you know what I mean? I do know what you mean.
So very much so it's very much the, that there's a, a seed in
that idea that I think is reallyimportant and worth talking
about more. Because I think it's from that
seed that grows the overcoming story, the the courage story,
(24:09):
the, the thing that we've talkedabout both in MBS with Matthew,
with each other that we have this sort of fraught
relationship with. But it comes from somewhere.
And I think it comes from that, that when you're in the fight,
you are able to see and feel your way through it and you are
(24:35):
able to do it and you know that you are able.
And until you're tested in that way, you don't know and.
It's also like when I was a kid,I remember, I remember when I
was a kid learning that like as you get older that you're that
your hair goes Gray and that like you have to dye your hair.
(24:57):
And I remember when I was a little kid being like you.
Have to dye your hair? Clearly.
That's not true anyways, like. If you want to keep your hair
from going. And I'm never being like, Oh my
God. Like, And I remember saying to
my mom, do you have to do that? She's like, yeah.
And I was like, I remember beinglike, that's horrifying.
(25:22):
Like saying earlier when you when you're a kid and you see,
like, my sister has two young kids.
And like I was saying I was 40 this year.
We went to my birthday party andmy sister said to them, do you
think 40 is really old? And they were like, yeah.
Like they were really like, oh, my God, you're young.
You're like, that seems terrible, you know, but you just
(25:44):
like as you get older, you're like, oh, all those things.
Oh, yeah. It's.
Always like 5 years older than where you are.
I know what I. Mean and it's fine as it goes
on, but it's like the idea of something can sometimes feel
like, Oh my God, that doesn't seem like a good idea, you know?
My grandfather lived to be 102, almost 103 and I remember
(26:08):
sitting on apartment talking. He was amazing.
He was just using human. He, he said to me, you know, I
just, it's like I just can't, I still can't wrap around my mind
around the fact that I'm this old because inside I'm like 24,
you know, like I, I will sometimes pass a mirror and I'll
(26:32):
see myself and I think, who's that old guy?
I think that there is this sort of inner identity that we have
no matter what. And our bodies change in all
these different ways for all these different reasons.
And there's some inner us that'sthey're always there just coping
(26:53):
with all of these, these changes, all these things.
Most of my 20s and 30s and stillfelt like that 12 year old.
You know, I would be surprised when I saw myself then I'd be
like, I still feel like I'm 12. My brother and I used to joke
about that. And then when I got like later
into my late 30s and I was like,I think, I think I'm finally
(27:14):
like 20. I think I'm finally 20 or 30 and
now I'm like, wait, wait, where am I?
I know. Yeah.
It's like you just, you don't have the perception of yourself
like that. And if you are lucky enough to
be well enough to, you know, healthy enough to get on with
(27:34):
your life in that way, then you,you feel the same.
You know what I mean? Like as you do.
And every so often, your body reminds you you are not.
You're like, OK. Yeah, you know.
I see now what's happening. I guess it's the same with, I
think it's the same, very similar thing being disabled.
It's like you, if I knew certainthings that I would have to do
(27:55):
or certain things that would getharder to do younger.
I'm kind of glad they didn't tell me about those parts,
right? Right.
Well, it's like that Garth Brooks song.
I'm glad I didn't know the way it all would go.
Yeah. You know.
Because it would have given you a choice that you wouldn't have
been prepared to make. It would have been a.
(28:18):
False choice. You don't need.
You don't need to know those things.
It's like those people would say, you know, what's that movie
when there's a movie when he's like, you know, if you were, if
you were told what day you were gonna.
Oh yeah. What is that movie Die?
Or whatever. It's like there's a, there's a
better, it's better to not know a certain amount of measures
(28:39):
like, OK, because you and also you have more ability and more
strength and more capacity than you think you do.
Like if you told me at 20 that Iwas going to have to do XYZ, I
was like, no, I don't think I'm up to, I don't think I'm up for
that. You know what I mean?
Right. But you do, you know you figure
out the same. Thing as when people say, if you
(29:02):
know, if I went through what youwent through, I'd probably kill
myself and you're like we all. I used to think the same thing,
but turns out no. Because, you know, I'm still,
I'm still here. I'm still.
Here wasn't. Even a thought in my head, you
know, like and it. Turns out that there's a lot
more beauty in this than I thought, you know what I mean?
(29:26):
Like that's why we. Need to get what?
What is her name? Chloe.
Who wrote the book Easy Beauty Beauty.
Oh. Yeah.
I mean, there's so much in that book that's so fabulous about,
you know, to not to mention the way she opens it, like she's
sitting in a bar with two friends who are talking about
whether her life is worth living.
Oh. Yeah, for sure, right.
(29:48):
And that's sort of a construct for the whole book, which would
be a great conversation, by the way, that we could have at some
point, which is, you know, this like what's worth it?
And not in a not in a macabre way, but just like with that,
that what we would have thought before.
I know what I thought in my 20s when I was given my diagnosis
(30:12):
and then you sort of where I am now, and it's something that I
think about a lot of sort of someone, you know, had told me
how this was going to go. I have lots of thoughts about
how I might have responded to that.
But I kind of knew like what waspossible.
I knew what was could have been in the cards.
(30:34):
Like I feel like I got away witha lot before things got really,
really hard. Also, if you'd have told me
like, you know, when you when you're born with a disability,
you sort of eventually go like, you know, it's terrible thing to
say now. And I I don't feel like this
now. Just I want a caveat.
(30:54):
This amazing. Like when I was young, I used to
be like, yeah, well, I have that, but I'm really glad that I
don't have that one. Like it's almost like a
comparison of like, well, yeah, well, I have this disability,
but like that one will be worse.You know, they're kind of and.
Like one of my very favorite sayings is when you think of all
the things that you don't have that you want, think of all the
(31:17):
things that you don't have that you don't want.
Right. But The thing is that horrifies
me. But that I was like, I mean,
I've gotten to know so many different people with different
disabilities and we have I, you know, there were times when I
looked at that some of what theyare living with and we're like,
oh, that that must be way harder.
And it's, it's it's own, everyone has its own brand of
(31:40):
heart, right. Yeah.
Like yours is a brand of heart. Mine is a brand of heart.
Angelique's is a brand of heart.Like everyone has their own
struggle with it. And everyone gets off lately in
certain areas that others don't,you know, like they're all their
own kind of thing. And, and now when I think when I
see those people or talk to people and I, I go, I, I feel
(32:01):
shamed that I was like almost comparing.
Well, at least I don't have because I think that's not a
that's really not a nice way to perceive other people because I
do it as well as. People do it to you too, right?
Like I've had people who've beentelling me about something hard
and they're like, well, I don't mean to complain because it's
not like you know how much your life sucks.
(32:22):
Like they don't say exactly, butthat's kind of what they're
saying. And I'm just like.
Loud because I had it said to me.
But I would be lying if I said that.
There hasn't been times where I've thought that.
And now I chastise myself for that as an old molder, because
I'm like, first of all, you haveno idea.
Right. It's like to live inside that
person's body, like you have no idea.
(32:45):
And we all kind of make an assumption because I think my
brand of it is OK and I can manage it and this is how I
figured out how to live in this body.
But we're all doing that. Right, I had a friend of mine,
he worked at a pizza place. That's the background.
He usually dropped off my pizza when I would order, so I was
excited to see him when he dropped it off.
(33:06):
Turns out it was somebody else who dropped off the pizza.
And I was like, oh, I thought myfriend Andrew was going to drop
off. He goes, oh, no, but he told me
about you. And I was like, oh, cool.
And then he goes, yeah. He's like, man, you've had so
much tragedy. And I was like, oh, OK, all
right, see you later. Bye.
Oh. Man.
(33:28):
I mean, and I'm sure my friend Andrew was like, yeah, man, you
know, it sucks. Her mama's Alzheimer's, she lost
her brother would just like, I'msure he just like told him, just
like a little bit about his friend who he doesn't think of
as a tragic figure. Right, right.
Who knows? That's how the take away, yeah.
That's now that's how I am seen.It's like, what the fuck?
(33:49):
Why would you say that to somebody?
Why would you say that to somebody?
I don't understand. I will never understand people's
idea of saying that to your facelike, but you know what I mean.
It isn't a. Tragedy they must.
Know that that doesn't make you feel good.
You know what I mean? But they're not.
Thinking about what you feel at all, that's not even.
(34:12):
I think they're trying to show some sort of compassion, like,
Oh yeah, I'm so sorry, but. Weird.
As if that we walk around all the time with that like front
and center, you know? Please feel sorry for me
worrying. About it, That's weird.
Anyway, I just think, like everyone you know, you don't
(34:36):
have an idea what you can manageuntil you're doing it.
Yeah, but then let's let's just take a moment to say I've hate
the expression. What doesn't kill you makes you
stronger. And for years now, for years
now, I've been like, you know what?
I am strong enough, thank you very much.
I do not need to be any stronger.
So just fuck off. I've I've done what I need to
(35:00):
do, like just leave me alone. Let me just like me I I I've got
what I need and whatever these lessons were, I think I've
learned them. Thank you I.
Remember going, it was like Christmas time.
I remember I was doing, I was working, I was doing some work
in the were in the university where I used to go school and I
(35:20):
was doing some work over the Christmas holidays.
And it was just like the weatherwas terrible.
And I was going there, driving there and I had to get to the
place and you know, you like you're in your chair, you're
soaking wet, you're trying to get in and out.
And it was dark. So I was really not feeling it
was, it was a slack. Anyway, I remember we had this,
(35:42):
we had this MBS group and I decided I would do it in the, I
would go on the phone in the carand I would listen in.
And I remember that was like, how are you getting on Laura?
What was your day like? And I said, I just feel like
whoever is up there, they, they thought that I was, I was
(36:04):
equipped for this job and I am not like they saw me and they
thought I'll give this to her because she can handle it like,
and I was like, and I just want to tell that person that I do
not have the skills for this job.
I don't, I am not the person forthis job and I'm not qualified
(36:27):
to be disabled. I'm not qualified for it.
Other people are better at it. I would like to.
Motion please. I think they should have picked
somebody with better coping skills as well.
I want to go. Back to cashier.
I'll go back to cashier bagging groceries.
Thank you also. I really appreciate that you
think that I'm able for this shit, but I'm really just not.
(36:49):
I was just really. I'm not.
Not today. I can't handle it, not today.
Someday. Yeah, I get that.
He's like, it was like, put someone up there thinks that I
have an enormous amount of scalethat I clearly don't have.
Like, OK, yeah. Yeah, sometimes that well goes
dry. There are a lot of bad
(37:11):
expressions, though. There's so many of them that we
should retire. Yeah, I heard.
I heard one the other day. It was like, God only gives you
as much as he knows you can handle.
And I was like take issue with that one too.
Actually, I don't think that's true.
I think we have a lot of examples of of that but not
(37:33):
being true. But anyway, and just.
The idea though, that it makes you, I don't know if it does
make like it is, it feels cruel.Right.
It feels like that there's sort of a sense of being punished for
being strong and. Also a kind of a dismissal of
how you feel, right? Right, right.
(37:55):
Yeah, Don't like that either. Hey, before we go, we want to
tell you about a very special organization that brought the
three of us together five years ago.
It's called Mind Body Solutions.They offer live online adaptive
yoga classes, a YouTube library,unique student only gathering
spaces, and special live events hosted by founder Matthew
(38:19):
Sanford. There's no feat participate and
no yoga experience required. At MBS, you can connect with
others who have disabilities andreconnect with yourself.
That's their mission, to help people live more vibrantly and
more connected, both in mind andbody.
MBS has helped each of us discover new ways to live, work,
(38:40):
move, and simply be in the bodies we have.
And they can help you too. So if you're listening and
living with a disability or knowsomeone who is, check out their
website at mindbodysolutions.org.
It's free, it's hopeful, and there's room for everybody.
(39:01):
Thatsmindbodysolutions.org. You can also connect with them
through our lookingupfromhere.com resources
web page. Thank you.
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