Latest / Unbalanced with Cerys Davage / 42. Two girls, One diagnosis, Zero filter (ft. Kae Tran)

Transcript

42. Two girls, One diagnosis, Zero filter (ft. Kae Tran) · Unbalanced with Cerys Davage

0:10
Hello everyone, happy Sunday and welcome back to another episode
0:14
of Unbalanced with Me, Kera Savage.
0:17
I hope you're all doing well. Hope you're all having a good
0:20
day. I certainly am because I've got
0:22
another interview episode for you guys.
0:25
I'm meeting someone that I've been in contact with on
0:28
Instagram for a while, but I'm really excited to fully get to
0:32
know Kay on a deeper level per SE.
0:35
So let's welcome Kay. Hi.
0:37
Hi. How you doing?
0:40
Great. I'm so excited to chat with you
0:42
today. Me too.
0:43
I've been wanting this for so long so I'm really glad we've
0:47
been able to set this up. Can you tell us a bit about
0:50
yourself? Who are you and where are you
0:51
from? Well, my name is Kay and I am
0:54
from Toronto, Canada. I wear many hats.
0:58
I am a model. I am a multidisciplinary
1:01
creative freelancer and I advocate for people with
1:04
disabilities and for accessibility practises while
1:08
raising awareness for our disease Muscular.
1:12
That's, that's great. That's a really good summary.
1:13
Well done. It's a handful.
1:16
Sometimes it's difficult to summarise yourself in a couple
1:19
of sentences, but we'll definitely get into all the
1:22
little bits that you do. But I guess the main thing I
1:25
know about you right now is that you do a lot of work to raise
1:28
awareness on Instagram and obviously that's how we got in
1:32
contact. And yeah.
1:34
Could you share a bit about your experiences with your Instagram
1:37
life? Actually, how did you find me?
1:42
Through hashtag or through other community members?
1:44
I. Think someone also with LGMD
1:47
sent me your account and was like like this girl also has
1:50
LGMD you should get her on your podcast.
1:53
So I followed you for a while and I feel like the content you
1:58
post is very similar to the content that I really enjoy
2:01
anyway, like aesthetic stuff, weekly round UPS, but also
2:04
talking about like really honestly about your current
2:08
journey with muscular dystrophy. And so yeah, I just knew I
2:13
needed to talk to you. I needed to get to know you.
2:15
So. And yeah, I think, I think
2:17
that's how I found you actually. Oh, that's good.
2:19
OK, so it's working because I purposely put #muscular
2:23
dystrophy hashtag life with MD #LGMD.
2:26
And I don't know if hashtags are dead, but I did that because I
2:29
want to be a resource for people like us to be able to know that
2:33
we're not alone in this. Because I know for me, I had no
2:36
one. And the first thing I did going
2:39
through it was I looked it up online and I found maybe only
2:42
three people and none of that was local.
2:44
No one I knew in real life. It was still isolating, but it
2:47
was it was a glimmer of hope to know that I wasn't really alone.
2:50
There's other people like us somewhere out there in the
2:52
world, whether even though it's not in our city or country.
2:56
But yeah, I, I started self advocating online because I felt
3:00
like I had no choice. I dealt with a lot of
3:02
discrimination, a lot of judgments and it was very, it
3:07
was very tough because our disease is semi invisible.
3:10
We don't look traditionally or stereotypically disabled and but
3:15
we're really losing our mobility.
3:16
But we look fine on the outside. But once you see us move, it's
3:20
really tough. And no matter how much I try to
3:23
explain to my close friends and family and I think because I
3:25
didn't complain and I just try to act normal or a body passing,
3:30
I don't think they realise how much I was struggling.
3:32
So it got to the point where I was at my lowest point in life
3:36
where no one, even my closest friends didn't understand me.
3:39
And I thought if they don't understand me, of course
3:41
strangers wouldn't. So I started writing about it
3:43
online so people could really know what it's like being us.
3:49
And and that's when I came out of the disability closet is what
3:51
I like to call it. I initially had hidden it from
3:55
everyone except for close friends and family.
3:58
And I got to the point where I couldn't hide it anymore.
4:01
And I was tired of it, of being judged.
4:04
And I, yeah, came out of the disability closet on rare
4:07
disease day. And I think I was 27.
4:09
So it was much later in life. Yeah.
4:12
And so from there, it was like this weight was lifted off my
4:15
shoulders. Like, the burden of keeping this
4:17
secret was like, not mind hold anymore.
4:20
I felt instantly lighter and yeah, things changed ever since
4:23
I came out of the closet. So I think that's part of being
4:26
authentic to yourself, right? Yeah, yeah.
4:28
It's like it's part of being authentically yourself.
4:30
Because I think I was in denial for so long because it's so
4:33
slow, progressive. You kind of think it's not going
4:35
to hit me yet. Like I'm not going to really
4:37
lose mobility. But then, yeah, it does.
4:40
It catches up. Yeah, I mean, I saw so much of
4:43
myself in that story that you just said before I came out.
4:48
Like you said, like, I guess my podcast was my way of letting
4:52
everyone know about my, about this disability.
4:56
No one really knew except my close friends and family.
4:59
But again, my friends didn't get it because, I mean, yeah, we
5:03
were young. We were in high school and you
5:05
know, you don't really understand things as much at
5:08
that age. And they just like couldn't.
5:10
I just felt like I wasn't taken seriously because I look fine
5:14
and even though I struggled with things, I couldn't really
5:16
communicate it that well because I was still learning about it
5:20
myself and still adjusting to things that I suddenly couldn't
5:24
do anymore. So.
5:25
Exactly, Yeah, exactly. Right.
5:27
Like I, I heard your your podcast and I thought I went
5:30
through the same thing, but I'm about like a decade older than
5:32
you. But you had come to terms with
5:34
it a lot sooner than I did. But I think back, back in my
5:37
day, we didn't have that same kind of resource or, or
5:41
community and like disability culture wasn't really a thing.
5:44
So I had no one to talk to about it with.
5:46
And I also grew up in a predominantly White City.
5:52
So I was kind of ready trying to fit in being a person of I was,
5:55
you know, I'm Asian. So it, it was, I just didn't
5:58
want to draw more attention to the fact that I was different.
6:00
And because I was starting to lose ability to walk and climb
6:04
stairs and I would hide that I isolated myself even more.
6:07
But I was just, I didn't, I didn't even want to look up the
6:10
symptoms. Like when I got my diagnosis, I
6:12
didn't want to look it up because I was so scared of
6:14
seeing what that meant for my future.
6:16
And you know, when I talk to old friends now, they come to me and
6:20
they're like, I feel bad. Like we never talked about it.
6:22
And I said, it's not your fault. Like I also didn't know how to
6:24
talk about it. So it's very interesting now as
6:28
you get older and you have come to terms with who you are and,
6:31
and what your life is like, you have people around you were
6:33
like, I also feel bad that I didn't know how to support you.
6:36
And so now I'm learning it is part of teaching those around
6:40
you to support you in the way you need.
6:42
It's a lot of communication, right?
6:44
So it's great that, you know, you and I are starting this
6:46
thing online where we're talking about it more and we need more
6:49
of that. Definitely, yeah.
6:51
And that's something I'm really pushing for with this podcast is
6:54
just to get, you know, get more information out there, but also
6:57
connect with more people. But that sounds really
6:59
difficult, what you went through.
7:01
And I can't imagine like receiving the diagnosis.
7:04
And, you know, at that age, you don't really know what what to
7:06
do with it. And if you're adjusting to it
7:09
yourself, how are you supposed to communicate that with your
7:11
loved ones? And how are they supposed to
7:13
understand if you don't even understand it yourself?
7:16
And do you mind telling us a bit about, you know, how old you,
7:20
how old you were when you got the diagnosis and, and what that
7:23
process was like? Yeah, so my symptoms started off
7:27
gradual, as whole LGMDS do. It was probably about three to
7:33
four years before I finally got a diagnosis.
7:37
And it was my oldest brother who had told me to go see his
7:40
doctor. And I did a blood test and my CK
7:43
levels were very high. And then they just confirmed
7:45
that I had the same disease as him.
7:47
And he's seven years older than me.
7:49
And we, we grew up in different homes and cities.
7:51
So I had no idea he was also going through the same thing.
7:55
But because he was older and he had seen how I was walking, he
7:59
he told me to go see his doctor. So I don't know if it wasn't for
8:01
him that I would have known, known what to do or, you know,
8:04
obviously it's been so long, but I was 17 when I finally got a
8:07
diagnosis. I was almost 18.
8:09
So it was my final year of high school.
8:13
And I thought, well, there's no point telling friends now.
8:15
Like, I don't know what this is like.
8:16
I'm going to leave and never see these people again.
8:18
Like, I just try to, you know, be normal.
8:21
But my brother did a muscle biopsy, and I didn't have to do
8:25
that because I'm related to him. So they said a simple blood test
8:28
would verify that we had the same thing.
8:30
Does that make sense? I mean, I'm glad that he went
8:32
through that so that you didn't have to.
8:34
Yeah, yeah, yeah, he goes. You're so lucky you didn't have
8:36
to do it because I have a giant scar down my leg.
8:39
But I have. Yeah, I have four siblings and
8:42
only one of them has it. Yeah.
8:44
So it's just my oldest brother and I, Yeah.
8:46
And the rest we don't. So.
8:48
Just you guys with the unlucky ones.
8:50
I know. But you know, our, our
8:54
experiences were different. Like we actually didn't really
8:57
lean on each other that much because of the age gap and
8:59
because I was just entering university, he was living in a
9:03
different city. And so we didn't really talk
9:06
about it. And I, I, we handled it very
9:08
differently and our progression was very different.
9:11
So even though I have a brother with it, I still felt very
9:16
alone. And it wasn't until 2019 when I
9:19
finally found someone that's similar in age to me, that was a
9:22
female that was like, you know, going through the same
9:25
experiences. I was just a young woman and
9:28
that's when I truly felt seen. And that was so, that was like I
9:32
was probably 2028 or 29 by the time I finally found someone I
9:36
could relate to. Oh, that's such a long time to
9:39
go through that alone and going through that alone must have
9:42
been so, so tough. And I guess I was really lucky.
9:45
Like my mum signed us up to the registry straight away, like me
9:48
and my sisters who also have it and, you know, try to make
9:51
connections as soon as possible even though they didn't live
9:54
close. I guess I have to my mum to
9:56
thank for all the connections, but that must have been really
9:59
difficult to through it alone for so long.
10:03
My family didn't know what to do and you know, they're an
10:05
immigrant family, so they didn't really know to like go to the
10:07
doctors or anything like that. So I went to all my doctor
10:10
appointments alone. I had to do all the, you know,
10:13
find all the resources alone. I had to find all the tools to
10:16
cope alone. And that's why I think it took
10:18
me so long because I did it alone.
10:20
But now I look at, you know, people your age and I think
10:23
that's incredible. You guys are so strong.
10:25
I'm so impressed because you guys were able to come to terms
10:27
with it a lot sooner. But I also think back like the
10:30
climate is different today than it was in my my youth, right?
10:33
Like I didn't have the same resources and access to that.
10:37
Like no one was really speaking up as often.
10:38
Social media wasn't as big. Like, I think we only had
10:41
Facebook back then and, and I don't think I really knew what
10:44
advocacy was, you know, and even when I started, I didn't know
10:48
that was still a viable career or anything, right?
10:50
I just knew I had to just tell everyone, OK, I have LGMD and
10:55
I'll like I'll have to stop hiding and making up excuses for
10:58
why I can't join you today or why I can't do something or why
11:00
I wasn't able to find work. Like this is what I'm going
11:03
through. And that was probably the best
11:06
thing that has ever happened to me by just coming out of the
11:08
closet, the disability closet and saying, you know, this is
11:11
what I'm going through. This is what I have and you
11:14
know, do with it. But you will be.
11:16
This is who I am now. Yeah, yeah.
11:18
It is such a good thing to do. I feel like for so long I wasn't
11:22
sure, you know, who I would, who I should tell and you know, as
11:25
if it was some big secret, but I was like, exactly have to deal
11:28
with it at some point. I might as well just make a
11:30
podcast about it. I love that it's very it's very
11:33
healing too, right? Like when you are sharing your
11:36
truth, it is very healing because as part of you is being
11:39
authentic and it's just an outlet to, I think, like, work
11:43
through those emotions. Right.
11:45
Yeah. Yeah, I do find that it's kind
11:47
of like a vocal journal, and I'm not very good with writing as
11:50
much as I am with just rambling. So this is kind of my outlet,
11:55
you know, anything that's on my mind, anything that's happened,
11:58
I can just kind of let it out. And I know that someone out
12:01
there hopefully will be able to relate to me.
12:04
But I guess nowadays, you know, maybe not as much back in your
12:08
day, but now, you know, advocacy is such a big thing and
12:12
awareness and, you know, people are raising awareness about all
12:15
sorts of conditions and diseases and you name it.
12:19
You know, like there's some kind of resource out there now for
12:22
anything, which is really, really good.
12:23
But I can imagine it must have been quite difficult for you in
12:27
those years where, you know, social media wasn't as big, that
12:30
you had to advocate for yourself and not have any resources or,
12:34
you know, anyone else with MD to back you up on that, you know?
12:40
Yeah, I mean, I only had my brother, but we still went
12:43
through it so differently, right?
12:44
Like if he's seven years old or he's a boy, like we were just so
12:48
different. And so I think if people around
12:51
us didn't really know how to handle it, we kind of just want
12:54
about our life because it was so slow progressive that we were
12:57
just like, Oh well, like we'll just live our life.
12:59
But I had nothing. I really, I I think that's why I
13:02
tried to fit myself in this able body cultural expectation,
13:08
right? Like I was like, I'm going to
13:09
pretend I'm, I'm healthy and normal and I'll just get a job
13:13
and I'll tell them I need accommodation because I'm trying
13:15
to like get my foot in the door in the workplace.
13:17
Like I was just trying to put myself to the same standard as
13:21
able bodied people, but that's it was so unfair and it was
13:23
exhausting and it was really difficult and it was really
13:26
stressful because I had all these barriers that no one else
13:28
had. And I'm still facing those
13:31
today. But the the difference is now
13:33
it's like I'm using what I thought was my weakness to be
13:36
something that's my like advantage now.
13:38
That is my superpower. That is what makes me me and
13:41
unique. And I have this incredible
13:42
perspective now. And accessibility and disability
13:45
is really applicable to every aspect of life.
13:48
It's technically rare, but we are the largest minority group
13:51
that anyone can become a part of.
13:53
And it's it's, it's a very universal human experience.
13:56
So I think that's actually like a really advantageous thing to
14:00
have. Like people need to value us
14:02
more in the workplace and in general, right?
14:04
But This is why we need to share our voices online, because if we
14:08
don't keep speaking up for ourselves like they're, we're
14:11
never going to make room for us. They're going to keep leaving us
14:12
out because they're going to forget that we exist.
14:14
But we are here. So I love what like today has
14:17
become. I do want to know what your
14:19
symptoms were kind of growing up and then we'll move on to higher
14:23
effective now. Right.
14:25
It started off with not being able to tippy toe.
14:30
I couldn't jump as high, I couldn't run as fast.
14:33
I started having trouble climbing the stairs.
14:37
I would kind of have sudden falls.
14:39
I didn't know I was limping. But people would be like, are
14:41
you OK, You're you're limping? I'd be like, OK, something is
14:44
going on, you know? But it was very gradual.
14:46
And I think my symptoms were in the eighth grade, 9th grade.
14:52
And then by grade 10, I had trouble climbing up the stairs.
14:57
I was like dragging myself up the stairs.
14:59
And then from there on, it was just, I avoided climbing stairs
15:05
at school with anyone around. So I would always just like be
15:09
late for class. So I have the stairwell to
15:10
myself so I can just like take my time dragging up the stairs.
15:14
And I, you know, it was, it was a lot of sneaking around just to
15:17
to be normal and so I wouldn't have to, you know, raise any red
15:20
flags with friends and then be alienated in school.
15:23
So that's how I started and then I got my diagnosis and then I
15:28
had one year left of school and graduated.
15:30
I chose a university that was quite accessible.
15:34
And from there on I still continue to hide it because I
15:37
just want to live a normal life. And now I'm 33 and I can still
15:44
walk, but I, I do the thing where it's got like furniture
15:46
walking. So I hold on to like the wall or
15:49
you know, any table as I'm walking along.
15:51
And as soon as I leave my apartment, I usually hold on to
15:54
someone and I walk with them with my cane or now I use my
15:57
wheelchair. And now I'm also noticing my
16:01
upper body's affected. So like lifting it to put a
16:03
shirt on or washing my hair or to put my hair in a ponytail,
16:06
it's like really tiring. So lifting my arm is now
16:09
affected. So the lower part went first, I
16:12
would say, and now the upper is catching up.
16:14
But I use my upper body a lot to make up for my legs.
16:17
Like I push myself off the chair, the bed, everything, the
16:21
toilet. And I think what's hard is if I
16:24
lose my upper body, it's going to stress me out because then
16:27
I've got nothing. So that's kind of where I'm at
16:30
right now. But like I, like you've
16:33
mentioned your podcast, like a wheelchair has saved me a lot of
16:36
energy and I'm still pushing myself to take steps, even if
16:40
it's a, you know, not not much, but it's, it's a win for me.
16:44
I'm still trying to use it so I don't lose it, but within
16:46
reason. So a lot of it now is managing
16:49
my energy levels and being safe about it.
16:51
Yeah, Well, thank you for that. Thank you for sharing.
16:54
And it honestly feels like you're me just a few years
16:57
ahead. I mean, you are a decade older
16:59
than me. So no, I I definitely feel that
17:03
I use my upper body a lot to compensate for my lower body.
17:07
For example, with stairs, which I'm absolutely terrible at.
17:11
Oh, I avoid that, only trying to.
17:14
Oh yeah. Where where possible, stairs are
17:18
absolute no, like I need to use up to lift the elevator, but if
17:22
I absolutely have to, it's my arms that make it possible for
17:26
me to climb stairs. My legs just don't work, you
17:30
know, I, I need to hold on to a rail or a wall or something and
17:34
I need to literally lean against it and like pull myself up using
17:38
my upper body. It's really quite a dehumanising
17:43
experience. And I really, really don't enjoy
17:46
doing that at all. But I guess like you said, you
17:49
know, you need to try and stay as active as possible.
17:52
I don't encounter stays luckily in my day-to-day life anymore.
17:55
But if I do, I'm like, you know what, let's do it.
17:59
You know, I'm going to have to at some point.
18:01
But I know I will lose that ability and I know I will end up
18:06
using my wheelchair more and more.
18:07
And I think something I'm really struggling with is just getting
18:12
used to the wheelchair as a part of you as an aid and not
18:15
something to fear and something to feel really anxious in and
18:18
worry what other people think. What's your journey been like
18:22
with using mobility aids? I used the cane for the first
18:25
time when I was 26. That's pretty young, you know,
18:28
like, I remember being I I felt nervous at first using it, but
18:33
then I thought it's a safety thing and now a visual indicator
18:36
to be like, I need help and I'm slow and you're going to need to
18:38
expect that. And but that with that, I would
18:41
also get a lot of like, Oh my God, what happened to you?
18:43
I hope, like, hope you won the fight or like, did you hurt
18:46
yourself or hope you get better? And so I got a lot of those
18:49
comments. Yeah.
18:50
And then now I got my wheelchair.
18:52
Yeah. Yeah.
18:52
I. Find out.
18:54
So funny. Like when people say I hope you
18:55
get better. I'm only going to get worse, but
18:58
fine. I know, I, I know, I know,
19:01
right? So I just say thank, you know, I
19:03
know they mean well, they don't like our disease is very rare.
19:06
But at the time I was 26 and I looked even younger than them
19:09
too. So people were very confused.
19:10
They thought it was like a temporary disability.
19:13
Now I got my wheelchair two years ago.
19:16
It's like a foldable power wheelchair.
19:19
And two years prior to that, my OT, my occupational therapist
19:23
was, you know, going through the works with me just like, OK,
19:25
well, we'll need to apply for this.
19:27
Maybe do this, Like, maybe you get your wheelchair.
19:29
And I remember when she said that, I was stunned because I
19:32
was not mentally and emotionally ready for that, which I knew
19:35
would happen because my brother was in it.
19:36
I've met other people in it. I just felt like I could delay
19:40
this further, you know, like I could just wait a little longer.
19:42
But I thought, OK, you know what, like I'm not writing it
19:46
yet, but let me let me think about it.
19:48
And I think a year later, I finally applied for it.
19:50
And I knew I wanted to get a wheelchair that not only worked
19:53
in my living situation and just to have like ease of transport,
19:57
but I wanted something that looked good because I'm still
20:01
relatively young. I like to look stylish.
20:03
I like to look good. So I wanted a wheelchair that
20:06
reflected that. So that was the big part of
20:08
helping me transition was finding something that not only
20:11
worked, but looked good and reflected my, my aesthetic.
20:14
I think the biggest resistance. For me, getting 1 was just
20:18
having to succumb to the reality that we are getting weaker and
20:21
that we are going to lose our independence.
20:22
And I think by resisting getting one made me feel like I was
20:27
still like, okay, I'm still not there yet.
20:29
Like I could, you know, like I felt I could fight that, but
20:32
eventually I shifted my perspective and I knew like,
20:35
hey, if I get it, it doesn't mean I always have to use it.
20:37
It's just situational, right? And that's an option because
20:40
there were many times where I missed out on spending time with
20:44
my loved ones because I didn't have a wheelchair and so I
20:46
couldn't go. So now I have the option.
20:48
And like you said in your previous podcast, it was, it's
20:51
situational, right? Sometimes you can't use it
20:52
because the space was too narrow.
20:54
We don't have the car for it. And so like, the good thing is
20:57
it's an option. And now that I use it, it's
21:00
like, Oh my God, I, I wish I got it sooner.
21:02
Actually, like, I really wish I got it sooner instead of denying
21:06
this like mental resistance, like I was so afraid of what it
21:09
represented. But it, it really does offer
21:11
freedom and more experiences. And now you can participate in
21:15
life. So I almost don't want to go
21:17
anywhere without it, even though I know I might not use it.
21:20
I just like, if I'm able to bring it, I will bring it
21:22
because it gives me the option. Like maybe today I want to save
21:24
my energy. So it's like been really nice
21:28
and I actually get a lot of compliments where people like at
21:31
least once a once a day, like if I'm ever in it, like we'll be
21:34
like, that's a really cool chair.
21:36
I've never seen that before. Nice chair.
21:38
And so it's nice people do stare, but maybe they're staring
21:41
for a number of reasons. The point is like, and I get to
21:44
go outside again and I get to participate in life.
21:46
I will say, even though it's been 2 years of having it, I
21:49
still don't use it like every week.
21:51
I don't use it every day. It's just for certain occasions
21:55
and when I'm in a more intimate social settings, I get nervous
21:59
because you really are the only one in the room with a
22:01
wheelchair and it could be friends of friends you're
22:04
meeting for the first time. That's more intimate.
22:06
To me. That's like a closer degree of
22:08
separation. Whereas like if I'm out on the
22:10
street so someone's staring at me, I'm like, I'm probably never
22:12
going to see you again. But when they get close to you,
22:14
you get a little nervous because you're like, I don't want them
22:16
to think I'm like, you know, like this sad person where I
22:18
have noticed a tone change for sure.
22:20
Some people are super nice and some people are a little
22:22
condescending. Like it's like, it's just what
22:25
it is. And I got that using a cane as
22:26
well. But at the end of the day, like
22:28
my doctors always emphasised throughout my 20s, like safety
22:31
first, safety first. Like that was my experience.
22:34
But I love it. And I think we need to reframe
22:37
how we view it. It is a symbol of freedom and
22:39
it's a tool. That's it.
22:41
Yeah, definitely. I mean, everyone who has a
22:44
wheelchair has said like, I wish I got it sooner.
22:47
I guess my worry is the more I start using my wheelchair, the
22:50
more I might lose my mobility just because I would have the
22:55
wheelchair as an as an option. So why would I not want to use
22:57
the wheelchair? You know what I mean?
22:58
Because I can still walk right now and I'm trying to walk as
23:01
much as I can. I'm really trying to keep my
23:04
stamina going. But I feel like if I use the
23:06
wheelchair more and more, will I just help that progression
23:09
happen quicker? You know what I mean?
23:11
No, that's totally, that's exactly how I felt as well.
23:14
Like even like getting a cane and using one.
23:17
I thought, well, I don't want to rely on and then be afraid to go
23:20
without it. And then I started using it all
23:22
the time. And so that's the hard part.
23:24
Like we don't know if we are emotionally lying on it, like
23:28
relying on it's right versus like, are we progressing and we
23:31
actually need it as we like can't leave the house without
23:33
it, right? Maybe it's both.
23:35
And the same thing is happening with the wheelchair.
23:36
Like I'm noticing I'm getting a bit of anxiety having to leave
23:39
the house without my wheelchair now because I'm so afraid of
23:42
having to go through the the mental and physical work of just
23:45
taking the steps to the parking lot.
23:47
Like I'm like, Oh my God, like it's so it's so strengthening
23:49
with some my mind, like I can't hear you when I'm walking
23:52
because I'm so focused on not falling in terms of like, I
23:55
don't hear you at all. So it's like, but then you know,
23:58
when I do finally leave the house, I'm like, Oh, that wasn't
24:00
so bad. And so I think it is a balance.
24:02
Like I was nervous about that too.
24:04
But sometimes I do challenge myself to not take it today,
24:06
like don't use the wheelchair today.
24:08
We'll we'll walk to the the car and sometimes I'm like, there's
24:11
no choice. We can't fit the wheelchair.
24:12
So you have to push yourself. So it's exhausting, not gonna
24:16
lie. And it's very tough to figure
24:18
out what words and what doesn't. Yeah, but I guess it's there for
24:22
bad days, because we all have good days and bad days.
24:25
Exactly. It's nice to have that as an
24:26
option. Like if you can't do something,
24:28
you don't feel like you've suddenly lost your independence
24:31
for that day. You know, it is there for you.
24:33
But I guess, well, like you said, you know, we have a semi
24:37
invisible disability. So sometimes I get comments
24:40
where I need to use the lift to go up one floor and people are
24:43
like, why are you? Why are you not just taking the
24:45
stairs? And then I have to explain that
24:47
I have a disability in that way because you can't see it.
24:50
And then I get the other side where people have comments, you
24:53
know, about the way I walk. Like, are you OK?
24:55
Like, have you broken your leg or something?
24:58
And I know most of it is out of concern or just out of
25:01
curiosity, but I've just learned to just put on a face to be
25:05
like, no, it's OK. I've got a.
25:06
Disability, yeah. Yeah.
25:08
So I got that a lot with. That's why I got a cane.
25:11
It actually helped people stop questioning as often, but I
25:15
would still occasionally get it because it would bring
25:17
attention. But you know, I think it comes
25:19
with experience and age, like time, because you just get to
25:23
the point where you're like, yeah, I got MD.
25:24
So what? Like you just tell them and
25:26
explain it to them and then have most of the time they're like,
25:28
oh, I feel like an idiot for asking you because it just
25:30
correct their behaviour and their attitude a bit, right?
25:32
So you're gonna be like, I have this, I can't do that.
25:34
And they're gonna be like, oh, OK, sorry, I didn't know.
25:37
Right. Like it's like we're just, you
25:39
just have to come from a standpoint of like, this is who
25:41
I am. This is what I need, this is
25:43
what I can't do. And I'm going to tell you about
25:46
it. And then if they don't react
25:47
kindly, then you know, you know, that's not for you.
25:50
But with wheelchairs, like it's funny because you can look at
25:54
someone with a disability and be like, yeah, that's no problem.
25:57
They need it. Who cares, right?
25:58
Like it's easy on the outside, but once you're in the
26:01
wheelchair, it's so different. Like the experience is
26:04
different. You yourself, you look at people
26:06
using it and you're like, that's not a problem.
26:08
I don't even think twice. But then when you're in it,
26:10
you're like, Oh my God, it's so scary using it because people do
26:13
stare. People do treat you differently.
26:15
But that's something unfortunately, we just have to
26:17
push through until, I don't know, forever, I guess.
26:20
Like, I don't know. I see that as a way of just
26:23
advocating for other people that may not be able to say that and
26:26
be that open. Exactly.
26:28
And and it is a muscle. Ironically, it is a muscle we
26:31
have to like strengthen because it does take courage to share
26:34
our story and to talk about our vulnerabilities.
26:36
Like it is human nature to want to be healthy and strong.
26:39
And there's something, you know, and innately shameful about
26:42
being like, I'm, I'm like falling apart, you know, like
26:45
it's not a good feeling. But I do it because I want to
26:49
help people like me. I went through it alone all in
26:51
my 20s and teens. Like I didn't want, I don't want
26:53
anyone to feel that. It was like the darkest feeling
26:55
I've ever felt. And so through this, I've gained
26:58
purpose and community, which is such an incredible, like,
27:01
feeling like I, I feel good doing what we're doing, but
27:04
unfortunately it's sharing my lived experiences.
27:06
I have to turn my pain into some kind of helpful resource for our
27:10
people because we do need each other.
27:12
We can't do it alone. And I think I, all I have to say
27:15
is from, from, you know, your older sister, it takes time and
27:18
practise and give yourself some grace because it's never easy.
27:21
And for me, like I can't get out of my wheelchair without help
27:24
and I am visibly getting skinnier.
27:25
So I can't that I've experienced someone being like, oh, you're
27:28
faking it. You can walk out of this
27:30
wheelchair. Like for me, I'm visibly like
27:32
struggling now. But I am hearing from a lot of
27:34
people who are ambulatory wheelchair users and they're
27:37
like, people are calling me fake or that I got better.
27:40
And it's so annoying. And, and I can't relate to that
27:42
because I'm now using it where I need it more.
27:45
But I think that's something you're going to have to learn to
27:47
like shut out and just know that you are doing this for you and
27:51
you can only educate. And then you just got to move
27:52
on. You know, like it can't affect
27:54
us anymore. That's what all I've done in my
27:55
20s and it was the most heaviest ever.
27:58
So just live your life, do what you got to do to be safe and
28:00
have fun. That's all we can do now.
28:02
That's. Such a nice piece of advice.
28:04
I like that. And you're you're speaking from
28:07
a place, you know, you've been through the darkness, you've
28:10
been through the worst things because of it.
28:14
And so, I mean, yeah, you're just doing it because you don't
28:17
want other people to go through the same thing as you.
28:18
But I guess that's made you stronger.
28:21
Well, yeah, I worried so much about what people would think,
28:24
and I thought that's no way to live.
28:25
It was affecting my mental health honestly.
28:27
Like this disease obviously is as as mental as it is physical,
28:31
right? We have to be so strong to be
28:33
able to keep pushing through in a body that won't cooperate,
28:36
right? So like I've been through that
28:38
and it it's like we can't control what people think.
28:40
We can only educate and like hope they have some empathy and
28:43
compassion. But I think back, I'm like, why
28:46
wasn't I just unapologetically me?
28:47
You know, it's so easy to look back and be like, I should have
28:50
just said, I have LGMD and this is who I am and you know,
28:52
accommodate me will learn to work together.
28:55
But instead I had internalised all that ableism because that is
28:59
what we've been taught in society.
29:00
I just want to say it's easier said than done, but you just
29:04
kind of have to be unapologetically you, use that
29:06
wheelchair, do what you got to do and just live your life
29:09
because our life is already hard.
29:11
So my advice is just have fun exactly when you do what you
29:14
gotta do. Life is too short, you know?
29:17
And what I love is that even though our bodies may get worse
29:22
as we go on, our minds and our voices are still gonna be as
29:26
strong as ever, if not stronger, as we get weaker.
29:29
So that's why it's just so important to keep sharing, keep
29:32
enjoying life and keep in contact with, you know, other
29:35
people And yeah. Disabled Joy is also a kind of
29:38
advocacy, like they think, you know, disabled people are just
29:41
at home living a miserable life. But no, we're allowed.
29:43
We do have a good life, and our life isn't over just because we
29:47
got a disability. It's just different, right?
29:49
So by sharing our personal stories, we're showing how
29:54
there's no one way of living life.
29:56
And that's going to show other people like us that like, yeah,
29:58
we can continue thriving. Like we can continue on.
30:02
Nothing about us without us. You know that saying.
30:05
No, I haven't. Actually, so you know, typically
30:09
able bodied people are creating the disability policy or doing
30:13
the accessibility consulting or doing things and speaking for
30:16
us, but they don't have our lived experiences.
30:19
So we must keep speaking up for ourselves.
30:22
So true. And one of the best ways you're
30:24
you're doing that is through your Instagram.
30:26
And for me, it's just really nice to see someone.
30:29
Obviously I know you've got the same condition as me, but it's
30:32
just nice to see, you know, disabled representation in like
30:36
modelling. I know you do a lot of
30:37
modelling. Does it feel good to like kind
30:40
of be a face of someone disabled like in the creatives?
30:44
I guess because there is definitely a lack of that, isn't
30:47
there? Yeah, but but you know, it's
30:51
funny because I am signed as a disabled model.
30:55
However, again, like we don't look disabled without our
30:58
mobility aids. So now what's ironic is that I
31:01
purposely show them in my photos to signal that I'm disabled.
31:05
And it's like, unless you see video and you see me moving, but
31:10
I have to purposely show them in photos now.
31:12
And one thing I'm actually still encountering is like there is
31:16
still a barrier in representation because I think
31:18
brands still want to show that visible.
31:20
Like, how can you show it in photos?
31:21
So it's like someone who is missing an arm or leg or they're
31:24
they're in a manual wheelchair or something, right?
31:27
And like I don't get cast as often because in my photos, I
31:31
don't think I look disabled enough.
31:33
My agency thankfully believes in my messaging.
31:36
It's just a matter of the casting director, the brand,
31:39
what you know, who they want. And, and because I have actual
31:42
physical requirements for accommodations, like I, I have
31:45
those needs, I find that a lot of them don't want to provide
31:49
that as well. Like I've been cast as a
31:51
disabled model and then I show up on set and it's got all these
31:54
stairs. And So what I'm learning is it
31:57
doesn't matter. Like, yeah, yeah.
32:01
So what I'm learning is like, it doesn't end the the educating,
32:06
the advocating, you know, for people like us, we're going to
32:09
have to keep doing the work. And it's exhausting, but
32:12
someone's got to do it. And it's got to be us because we
32:14
know we know best. But.
32:16
They just don't think about it, you know, like that.
32:18
Things that they take for granted.
32:20
We have to really like, work our lives around it, you know?
32:24
So we have to let them know what we need because otherwise they
32:27
just wouldn't even think about it.
32:29
But it's frustrating because I feels like a checklist.
32:31
Like I find I went from being invisible to a checklist.
32:34
So it's like Lynn Griddle is very funny like that because I
32:37
feel like we're still in the middle.
32:39
We're still visible, invisible. I, I still find till this day,
32:42
I'm still trying to teach people closest to me because it is
32:45
progressive. So what was true last week isn't
32:48
true today. Like I didn't know I was also
32:50
going to have a bad sleep last night.
32:51
Like we just don't know with our body and energy levels.
32:54
And it's like kind of constant. You're going to have to always
32:57
advocate for yourself, is what I'm learning.
32:59
So yeah, and just always adjust to how you're feeling because I
33:04
guess sometimes it's really frustrating if I want to make
33:06
plans tomorrow and then I wake up and tomorrow is a bad
33:10
physical day and I can't commit to that, you know?
33:12
And I'm a very social person, so I hate counselling plans.
33:15
I hate when my body can't keep up with my mind and my, my
33:19
social calendar. And so that's definitely
33:22
something I'm, I'm adjusting to as well.
33:24
It's just listening to my body and putting myself first, as
33:27
hard as that is. You have to because it is a very
33:31
tough disease to live with. I will be honest, I have hard,
33:35
hard days where I'm like, Oh my God, what is this?
33:38
Like this sucks. Why me?
33:40
And then I have other days where I'm like, oh, this is my new
33:42
normal now. Like it's all good.
33:43
And then until the next time it progresses or I notice some kind
33:46
of ability being lost and then I start having a breakdown and
33:49
then I go through the cycle again.
33:50
It is literally this like cyclical process of having LGMD
33:54
because it's progressive. And I always tell myself if this
33:57
didn't progress, I think life would be a lot easier.
34:00
But because we're always having to evolve and adapt and learn
34:03
and and then readjust, it is exhausting.
34:05
Like it is hard, but that is part of the journey, isn't it?
34:09
Definitely why we I. Wish I could talk to you forever
34:13
about this because I know that there's there's so much we could
34:15
share and so much that we probably have in common.
34:18
And but I know we've talked about a lot of the negative
34:21
parts of LGMD, but what's something positive you've gotten
34:25
out of it? I would say community for sure,
34:27
purpose, and I don't think my spirituality would be as strong
34:31
as it is. So I would say those three
34:34
things I've gained out of having a disability.
34:36
I think I'm incredible. Like perspective on life.
34:41
I know what really matters and I move with purpose now.
34:45
Like I want to help and be a part of this amazing community
34:48
that helps the betterment of humanity.
34:51
Like we're, we have each other and it's so special because
34:53
we're all in the same fight. So knowing that we can provide
34:57
our lived experiences to someone who was lost like I was a decade
35:02
ago, the younger version of me like is really nice because we
35:05
shouldn't and we can't do life alone.
35:07
Whether or not you have a disability, we just can't do
35:09
life alone. So.
35:11
It's. The community, yeah.
35:13
So the community like finding, you know, you found me and then
35:16
now we're friends and we have so much in common.
35:18
Was like, this is so nice. And knowing that even though
35:20
you're across the world from me, we have so much in common.
35:23
And it's just nice knowing that we just, we just relate to each
35:27
other without really having to talk about it.
35:29
We can just like there's this connection already, right?
35:31
No, yeah. We just know.
35:33
Yeah. But yeah, purpose and
35:36
spirituality is my my biggest thing.
35:39
That's really. How about you?
35:40
Yeah, oh, I would say community is like 100% the best thing.
35:45
I don't think I would even know how to deal with it if it wasn't
35:49
for other people being like, don't worry, girl, I know
35:51
exactly how you feel. And yeah, I guess perspective on
35:55
life and just being grateful for things that we take for granted.
35:59
You know, if I'm having a bad physical day, that makes me, you
36:03
know, think I took that one day where I could walk to the
36:07
nearest shop for granted. You know, you really do get your
36:10
perspectives changed like all the time, you know, with every
36:14
experience that you get. And it just makes you so
36:17
grateful for the things that you do have in your life.
36:19
And I see people, you know, obviously LDMD effects people in
36:23
different ways. And I see people that are the
36:27
ones that are affected, you know, with a very early onset.
36:29
And even though they have the same thing as me, you know, they
36:33
got affected a lot earlier in life, you know, from children or
36:37
I see other disabilities and conditions that, you know, makes
36:40
me just really grateful for what I still can have, even though
36:43
I've lost a lot, You know, it's OK to grieve that.
36:46
But it's just really important to be grateful for what you
36:50
still have because, again, you never know when you might lose
36:54
that ability to do something. So I just, yeah, try and stay
36:57
grateful every day. I think that's something.
36:59
Yeah, that's, that's, that is an important part of dealing and
37:03
living with this disease because in my 20s, I focused on so much
37:06
of what it was taking away from me that that really took a toll
37:10
on me. Like I was, I, I was depressed
37:12
because I kept thinking about, Oh my God, I can't, I can't
37:14
write anymore. I can't, I don't know about
37:16
motherhood. I don't know about dating.
37:18
I don't know we're working. I thought about every single
37:20
thing that just made me go crazy because I was so like, I was
37:25
always worried and anxious and fearful.
37:28
And now that I'm, I don't know if this comes with age, but now
37:31
that I'm in my 30s, I've really worked on that.
37:34
And it is about counting your blessings and being great for
37:37
the little things. And it really helps.
37:38
It really does. Because, yeah, we don't know if
37:41
we're gonna lose that tomorrow. And I find that I don't know
37:43
about you, but I find that little things that other people
37:47
find a big deal is not a big deal to me.
37:49
So I am more cool and level headed now because I'm like
37:53
that. You don't know real struggle,
37:55
like you have nothing. Yeah.
37:58
I think an experience for me that really changed my
38:01
perspective is I was late catching a train and the
38:06
elevator was broken so I had to take the stairs.
38:09
And because of that I missed the train because it took me so long
38:14
to get up the stairs and then across the platform and down the
38:16
other side that I missed the train.
38:18
And I got so upset and I was like, there's literally nothing
38:21
I can do about this. I can't blame myself.
38:24
I have no one really to blame apart from whoever broke the
38:28
elevator. Why should I get upset about
38:30
miss train? There's going to be another one
38:32
in like 5 minutes. So now I just take things at my
38:35
own pace. You know, if I miss a train.
38:39
OK, fine, I'll just get the next one.
38:41
But here's the thing too. Because like, things happen for
38:43
a reason. Maybe you missed that.
38:45
Like I always believe now, like things I like, things happen and
38:48
flow. It's the the burnt toaster fact,
38:51
right? Is that what it's called?
38:53
Oh, yeah, yeah, yeah, yeah. I mean, if you guys don't know,
38:57
search it up. There's a whole like, you know,
38:59
explanation of it, but it's kind of basically whatever happens,
39:02
even though you may not see it as a good thing it.
39:05
Exactly. You know have saved you from
39:07
something really terrible. You never know.
39:10
So yeah, like that, something like that really keeps a
39:13
positive mentality for me. But I do want to end the episode
39:18
on a question that I ask everyone.
39:20
And I know you talked a lot about, you know, you in your 20s
39:23
or when you first got the diagnosis.
39:26
What piece of advice would you give that version of you that
39:29
was really going through it? Or anyone else that's struggling
39:32
with a diagnosis? Oh man, I know I mentioned it,
39:36
but I think the biggest thing for me that I struggled with
39:38
when I first got diagnosed was I didn't talk about it.
39:41
I didn't seek support, I didn't have support.
39:44
I internalised everything. And I think if you are newly
39:49
diagnosed, don't be afraid to learn about it and don't be
39:53
afraid to talk about it. Know that life is not over, it's
39:56
just different. So there are ways to.
40:00
Live this unique life, but it doesn't mean that it's over.
40:03
I love that that's, that's just so nice to end it on.
40:07
I feel like even though obviously we've only recently
40:11
met, we have like connected like on such a deep level.
40:15
And I know that, you know, if we did meet up or whenever we end
40:19
up talking again, we'll just go, we'll click right back to where
40:22
we were and there'll be a lot of.
40:24
Cinemas, conversations, yeah, we can go on and on and on.
40:28
Yeah, I would love to and come to Toronto and maybe we can meet
40:32
up someday, yeah. We'll do it in Part 2.
40:37
Yeah, we'll be in touch. I'm just saying definitely.
40:41
And where can we find you on social media?
40:45
You can find me on my website is www.ktrend.com or on Instagram
40:50
or most social media is at letter 11.
40:53
Definitely give her a follow because I'm absolutely loving
40:56
your content. Please keep it coming.
40:57
It's very inspirational but also aesthetic and I love an
41:01
aesthetic Instagram. Oh, thank you.
41:03
It's funny because this year I actually took AI was very slow
41:06
with it. But I always, you know, it's
41:07
funny you say that like I think you sound very confident on your
41:11
podcast and you said this is a you're still working through it
41:15
and me too, right? And people see that with my
41:17
social media. But I get nervous posting about
41:20
our disease still to this day, still to this day, it feels like
41:23
I'm talking into the void, like no one gets that right.
41:27
But. I think that's why people think
41:29
I'm so like at peace with my condition because I use the
41:34
podcast as like a vocal journal I guess, and I just speak my
41:39
thoughts out onto it. But actually, I still struggle
41:42
with it every day, you know, every little encounter with a
41:44
stranger, every little bit of mobility that I'm losing, you
41:49
know, it's it's still something I'm really coming to terms with
41:53
every day and still struggling to accept it fully.
41:57
So if you guys listening think that we like have it together,
42:02
have it together, we really don't.
42:04
And like if you're struggling to deal with the way the your
42:08
condition is affecting you right now, like we totally get it.
42:11
Like I completely understand and we are still going through it.
42:14
Yeah, it doesn't. And the grievance doesn't end
42:17
like it. We really are just going to have
42:19
to work through that as we go on.
42:21
I think we always will lose a part of ourselves and that's
42:24
that's OK. And I think we need to accept
42:26
that, but we might not ever accept it.
42:28
You know, it is a process. Yeah.
42:31
Don't believe in social media fully.
42:32
I guess that's what I'm. Saying exactly.
42:34
And This is why it's so important to, like, stay in
42:36
touch with people that are going through the same thing as you,
42:39
because I feel like you're my older sister.
42:41
I feel like you're my therapist. We need to like, yeah, we need
42:45
to stay in touch because it, you know, at least then, you know,
42:48
you're not the only one. You're not going crazy.
42:49
You're not exactly thinking that you're alone because yeah, it
42:52
just makes it so much. Easier only we understand.
42:55
Exactly. Well, thank you guys so much for
42:58
listening. If you made it to the end of
43:00
this episode, don't forget to follow and balanced on your
43:04
favourite podcast platform and to rate it five stars because
43:08
that really helps me out. Don't forget to share this
43:11
podcast with your friends and family and I hope to be back
43:14
with you very soon. Until then, have a lovely couple
43:17
weeks. Bye.