Latest / Unbalanced with Cerys Davage / 79. More than Duchenne (ft. Conor McAuley)

Transcript

79. More than Duchenne (ft. Conor McAuley) · Unbalanced with Cerys Davage

0:10
Hello everyone, welcome back to another episode of Unbalanced
0:14
with me, Kara Savage. I hope you're all doing well.
0:17
I'm excited to get to know Connor today.
0:19
Connor all the way from Ireland. Hello, how are you?
0:22
I'm good, I'm good. I'm delighted to be on here and
0:25
thanks for having me on. I really appreciate it.
0:27
It's really cool. First Irish guest, am I right?
0:31
Very excited. That's really cool.
0:33
That's good to know. You're representing that
0:35
community for us, but you're also representing another
0:38
community today, the Duchenne muscular dystrophy community.
0:42
Please tell me a bit about yourself.
0:44
Where are you from and what do you do?
0:47
Yeah, so I'm Connor. I'm a 24 year old man from
0:50
Ireland and I live about 40 minutes outside of Dublin.
0:54
And because I know a lot of people know where Dublin is,
0:56
like I love my music, I love being outdoors and I love
0:59
getting for like a swim when I can.
1:01
And I do love sports. I'm a massive Liverpro fan, but
1:05
I'm also a content creator and a disability activist.
1:08
So I sort of share my own story on social media to raise
1:13
awareness about Duchenne muscular dystrophy.
1:15
And I hope and I fight for the rights of people with physical
1:20
disabilities. Amazing.
1:21
That's naturally how we met. Of course, the disability
1:24
community online is a huge place to be, and I'm so glad that our
1:29
paths have crossed because I really, really enjoyed your
1:32
content and I'm really looking forward to diving into that.
1:35
But first of all, what is Duchenne muscular dystrophy?
1:38
For those who don't know, can you give us a brief overview of
1:41
it? Of course.
1:43
So Duchenne muscular dystrophy. It's a progressive muscle
1:46
wasting disease and it's caused by the mutation in the
1:49
dystrophin gene. It can be inherited from a
1:51
mother who is a carrier, or it can happen randomly, and that
1:54
happened in my case randomly. And so some people call it
1:58
fluke. It doesn't only affect the
2:00
muscles though, it can also affect learning and or their
2:04
abilities such as attention span and verbal memory and sort of
2:08
like emotional processing. And then there's also a higher
2:12
chance of having ADHD, autism and anxiety when you have douche
2:18
and not all of them but you know either one or the other.
2:22
Gosh, so it really is kind of like a double whammy in a way.
2:25
Like you've you've got this, but you may have a lot of other
2:28
things as well. Yeah, exactly.
2:30
Yeah, that's the thing. Wow, OK.
2:32
How were you diagnosed? Like what kind of age were you?
2:34
Well, for me, I was 3 1/2 and when I finally got a diagnosis
2:39
back in 2005, and it was sort of like a long journey for me to
2:43
get diagnosed. And it started when my mother
2:46
noticed I was struggling with things like getting up from the
2:49
floor and I would naturally just grab onto furniture and I also
2:53
walked on my toes. I also had like speech
2:56
difficulties and I couldn't pronounce certain words.
2:58
And so with all that stuff happening and my mother, she
3:03
brought me to various doctors and for it was about a period of
3:07
a year, but many of the doctors that she brought me to, they
3:11
would just say I was lazy, especially because I actually
3:14
have a twin sister. And they taught that true,
3:18
having a twin sister, that I just relied on her too much and
3:21
I was getting her to do all the work.
3:23
But eventually my CK levels were checked and they were way above
3:30
the normal range. And that's sort of how the
3:33
doctors realised that it was Duchenne.
3:36
Wow, OK, that's so interesting that you're a twin.
3:40
I'm sure like I mean, you'll naturally have that rivalry in
3:44
that competition anyway with siblings, let alone with this as
3:48
well. Can you tell us a bit about
3:49
growing up with Duchenne and your kind of experiences of it?
3:53
I mean, your symptoms sound very like muscular dystrophy has very
3:57
like typical of it as someone also with muscular dystrophy.
4:01
So yeah, I'm intrigued to to know how you found, you know,
4:06
growing up with it and especially in relation with your
4:09
sister as well. Yeah, I think for me, growing up
4:12
with Duchenne, it was tough. I faced many like barriers and
4:16
hurdles. But as a kid, I honestly don't
4:19
remember a lot. I think to be honest, I've sort
4:21
of like blocked out a lot, so that's a pity.
4:24
But I think my memory sort of started from when I was a
4:26
teenager. So one of my biggest challenges
4:29
was sort of accepting that I had Duchenne.
4:32
I, I didn't feel like I fit in with others who had the
4:34
condition and because health wise I was doing better than
4:38
many of them. And so that made me sort of
4:40
question whether I actually had Duchenne or muscular dystrophy
4:43
at all. So I massed my symptoms really a
4:46
lot at that age to try fit in. It's, you know, a big thing at
4:50
that age to try fit in. So I really didn't overcome that
4:54
obstacle overnight. I think I've sort of accepted
4:56
that as time has gone on. But in relation to my twin
4:59
sister, we're very different. And so Caitlin is her name.
5:03
And yeah, it was really tough growing up because when we went
5:09
into secondary school, we were actually in the same school and
5:11
it was a mixed school. And so me and her could have
5:15
classes together or, and she would be friends with people
5:18
that I was friends with. So yeah, for me it was tough
5:21
because sometimes I could see, you know, people found it easier
5:24
with her than they did me and just because I had a disability.
5:27
So yeah, it was this hard thing of sometimes being jealous in
5:31
the sense of her, which, you know, at the time was a big
5:34
thing in my mind. But yeah, it it was tough
5:37
because she could do, you know, the sports and everything, and I
5:40
couldn't. So yeah, it was this weird
5:42
rivalry and jealousy at times as well.
5:44
But we have, you know, a really good relationship now.
5:47
So that's the main thing. I think, you know, these things
5:51
just make it who you are today, so.
5:53
Absolutely, and it's never a linear journey to accepting
5:57
yourself. Even though I'm really open with
6:00
talking about my experiences, I'd say I'm still on that
6:03
journey. It's, it's not, I don't think
6:05
there's ever an end point. You know, there are still some
6:07
days where I'm so ashamed of my disability and I really just
6:12
want to hide it as much as possible.
6:13
I don't want people to know about it.
6:15
And I'm sure, you know, many people listening can relate as
6:18
well. So it is definitely, you know,
6:22
an up and down kind of roller coaster journey.
6:25
But yeah, just finding this community has really helped me
6:28
just accept it a bit more because I don't know about you,
6:31
but I didn't know anyone else really my age with a a
6:34
disability growing up. Yeah, for me actually, we have
6:38
in Ireland, muscular dystrophy Ireland.
6:40
So it's like MDUK, but our version and so true that we
6:45
actually had clubs and when we were kids and we would go to
6:47
them and be me and my sisters and we'd go and meet other
6:51
people with similar or the same disability as me.
6:55
So that was really interesting. But for me actually that caused
7:00
me to be a bit confused because true, me and those people, I
7:03
would see that they had Duchenne, but it was health wise
7:07
they weren't as well as I was. So it was just this weird thing
7:10
of like, OK, you know, I can relate to these people in a way,
7:14
but I can't in another way. And it quite scared me because I
7:17
was only a young kid and I didn't understand, you know,
7:20
exactly what was going on. And so, yeah, I didn't know
7:23
people. But in, in a way, it actually
7:26
for me made it worse. And to see people who were
7:31
struggling more than me because it made me feel, you know, like
7:35
I'm lucky in a way. And, you know, I, I have all
7:37
this going for me. And, you know, sometimes I did
7:40
suffer with depression. So for me, it actually made me
7:43
think, OK, you know, I have all this going for me.
7:45
And then there's me complaining. And so it was this weird like
7:47
battle between myself. But as I've grown up by sort of
7:51
accepting my condition. And it wasn't up until 2020 when
7:55
I started my, you know, Instagram, TikTok and stuff like
7:58
that. And that's when I actually
8:00
started to make, you know, real connections within the
8:02
community. And it's been a really help, a
8:04
big help since then. Yeah.
8:06
Oh, absolutely. I agree.
8:08
I just felt like I was going through this experience alone
8:11
until I found the online community.
8:13
And I'm, I'm surprised I didn't find it sooner.
8:15
I'm kind of annoyed at myself I didn't find it sooner because
8:18
like, it seems that we've all had the same kind of experience,
8:21
you know, trying to fit in. And then I know a lot of people
8:24
have, you know, been kind of grouped together with different
8:28
charities or, you know, different communities, but maybe
8:32
it's not quite worked out or whatever.
8:34
And I guess I just didn't really want to know when I was younger,
8:38
you know, I just, I didn't want to be classed as disabled.
8:41
And because my muscular dystrophy is progressive, I
8:45
wasn't, I didn't count myself as disabled back then.
8:48
So I was like, that's, that's a future thing.
8:50
That's a future problem. But now I guess we're here and,
8:54
you know, I guess it's better to accept it.
8:57
Yeah, exactly. Like you try to fight something
8:59
for so long and, you know, you're just not going to win, so
9:01
you have to just accept your life and just, you know, go with
9:03
it. And that's what I always say.
9:05
I think for me as well, like even when I was younger, I think
9:08
that was the thing, you know, I was being grouped in with people
9:11
and I wasn't fully comfortable with having a disability myself.
9:14
So it was like this thing of like, you have this condition
9:18
and you're meant to be this way, but I was not that way at all.
9:20
So it was like this weird thing of like, I needed a couple of
9:23
years to get comfortable with it.
9:24
And then when I did, it was like, I found this community.
9:27
And yeah, as you say, like, it's progressive.
9:30
So you're like, OK, you know, I won't need that until a certain
9:32
time in my life. But I feel like when I did find
9:35
that, you know, I found at the right time.
9:38
That's good. I'm really glad to hear.
9:40
And it's the same with mobility aids as well.
9:42
You know, you've not only got your disability, you've also got
9:45
like the visual side of it as well and using mobility aids,
9:49
which I do want to get into because you said that your
9:53
sister was always known as the sporty one, but you are really
9:56
into sports. So I'm, you know, it's it's
9:59
great to see that you're not letting your disability hold you
10:02
back, which I think is it still a huge stereotype that needs to
10:06
be smashed in a way. And tell us a bit about that
10:09
your sports journey. Yeah, so for me, like, you know,
10:12
I always grew up and I liked sports and I sort of stopped in
10:17
a sense, like myself, like liking them up until I was about
10:20
12 or 13 when I sort of became comfortable, more so with
10:24
watching sports than actually, you know, having to like play
10:27
them. So for me, I'm like a big
10:29
Liverpool fan and I've been over there to Liverpool about 12 or
10:32
13 Times Now over the last couple of years.
10:35
So yeah, it's been this thing of like, you know, I've had to
10:38
accept that maybe a sports journey is not for me, but
10:41
watching sports is. I also did try wheelchair
10:44
soccer, so that was another thing I did try and that was a
10:46
journey. And I did that for about a year
10:48
and a half, I would say, But I was actually very scared of the
10:53
speed. So I'm a bit of a scaredy cat.
10:55
So I was just a bit like, OK, you know, I can't deal with the
10:57
speed. So that was my sports journey.
10:59
My sports journey right now is just watching, you know, sport.
11:02
But otherwise I did actually try play sport, but it didn't work
11:05
out. That's fair enough, but you
11:08
know, at least you still tried it, you know what I mean?
11:10
Yeah, exactly. That's the thing.
11:12
You know, I tried it. I can say I tried it.
11:14
Yeah, exactly. But that's so cool that you've,
11:16
you know, still been able to travel to Liverpool to go and
11:21
see some games. Do you travel a lot?
11:23
Yeah, I do. Actually.
11:24
I'd say if anybody sort of follows me on social media,
11:26
they'll know I I travel a lot. And so yeah, I've been on a
11:30
couple of trips and I've also done a lot of freelance work in
11:32
my time. So I've done work with the
11:34
Council of Europe and I got to travel to Strasbourg and also
11:39
Budapest to film accessible videos.
11:42
I also do just try go on, you know, little trips here and
11:46
there a lot. So I've been around, I've been
11:49
to a lot of countries in Europe. So it's been really cool.
11:52
I've also been, you know, to America a couple of times.
11:55
So that's been cool as well. So yeah, I do like to travel.
11:58
And of course, I know a lot of people with, I shouldn't say
12:01
this, but I should say more. So wheelchair users, they sort
12:05
of struggle with having that, you know, fear of their chairs
12:08
getting damaged or destroyed on an aeroplane.
12:11
Luckily enough, I haven't really had that.
12:13
But yeah, I, I get why people are nervous, but I'd really
12:16
recommend people to travel while they can.
12:18
You know, it's really cool to experience new cultures.
12:21
And yeah, so if you can travel, I'd just say, you know, just do
12:24
it. That's amazing, thank you for
12:26
sharing that. There's always going to be
12:27
anxiety around travelling. I certainly get that.
12:30
You know, when you land, you're like, I hope my tour made it
12:33
through. Yeah, exactly.
12:35
But you know, it is kind of worth it in the end, just the
12:38
amazing experiences and you, you don't want to deprive yourself
12:41
of that just because you've got that extra hurdle that maybe
12:44
other people don't have. It is annoying that we have to
12:47
like forward plan and do a lot more, you know, planning in, in
12:51
advance and stuff. But yeah, I know it's it's so
12:54
worth it. Yeah, just to get, you know, new
12:56
experiences. They say new cultures is really
12:58
important and I've actually also got to manage to meet people who
13:02
I've become friends are from online, you know, in wherever
13:05
they're from or you know, if I'm nearer there, you know, I'd get
13:08
text and it'd be like, oh, you know, do you want to meet or
13:11
whatever. So I've actually gotten to meet
13:12
a lot of people from this community, which has been really
13:14
cool. That's my goal.
13:15
I really actually want to meet more people face to face.
13:18
As much as I love doing these online interviews and meeting
13:21
people online, like I just want to, I want to give you a hug.
13:24
Do you know what I mean? Like, I want to, I want to see
13:26
you guys in person. I want to hang out.
13:28
I want to go to the pub with you.
13:29
Do you know what I mean? Yeah, exactly.
13:31
Just just saying everyday things, you know, and that's
13:33
that's the thing like, because online is great and I love, you
13:37
know, being able to form connections online.
13:38
But, yeah, I just think there's nothing better than getting to
13:41
finally, you know, meet somebody in person and say, you know,
13:44
I've been talking to you for years, You know, if we come so
13:47
close over, you know, these similar experiences that we've
13:50
had, and it's just really cool. Yeah, that's a great segue into
13:54
your online content. Tell us a bit about your content
13:56
creation and what you do. Yeah, so I'm a content creator
13:59
and, umm, activist. So, umm, it's, it's very funny
14:04
because my content, I can never sort of describe it to people.
14:06
It's like what to do? And I'm like, oh, you know, I'm
14:09
an advocate, but I'm also like, you know, I show my, you know,
14:12
my lifestyle videos as well. So, you know, if I'm on holiday
14:15
or anything, I would show off that as well.
14:17
But I'm a, I'm a huge fan of writing.
14:19
So I love to write my experiences and hopefully
14:22
through that people can and relate to my content.
14:26
And so I sort of class myself as a activist slash lifestyle
14:30
content creator. It's like a big word, but you
14:32
know, that's the sort of stuff that I do.
14:34
It's a bit of everything, just, you know, little glimpses into
14:37
different parts of your life. Yeah, exactly.
14:39
It's just little glimpses. And then, yeah, I think back in
14:44
2020 when I started, it was more so I started because I was born
14:48
during COVID and they thought myself, oh, you know, I may be
14:52
able to help other people. So that's why I, you know, I do
14:55
it. And yeah, it makes the content.
14:58
People can check out my page if they want, and then they'll be
15:00
able to see more of my content because people would always say
15:04
to me, I sort of understand myself.
15:06
So yeah. Absolutely.
15:08
I mean, what is your name on social media?
15:10
Yeah, so on Instagram I'm and my handle is at Con Macaulay, so
15:15
that's CONMCAULEY. I'm also there as well on TikTok
15:21
but I am more of an Instagram fan so I use that more.
15:25
Yeah, me too. It's where like Instagram Ogs I
15:28
feel like. How has the response been?
15:32
How's the response been to your content and how are you finding
15:36
it? Yeah, I, I found my, you know,
15:38
response to my content to be very good.
15:40
And I'm lucky enough that I haven't had to deal with anybody
15:43
who is, you know, trolling me or anything.
15:45
And because they know a lot of people in our community have had
15:48
to deal with that. And so, yeah, I've had a good,
15:52
you know, sort of good reception on my content also as well.
15:56
And people would get in touch with me who have, you know,
15:59
maybe children with the same condition as me or they have,
16:02
you know, a friend or a brother or an uncle.
16:06
And because mostly boys are affected with Duchenne.
16:08
But I love that because it's really cool as a community, you
16:12
know, getting to put myself out there and then other people are
16:16
able to see that. And I hope that just gives them
16:19
a bit of hope. And it can, you know, show that
16:22
I have Duchenne, but I'm not just Duchenne.
16:24
You know, there's so much more to me.
16:26
So yeah, it's it's it's really cool.
16:29
And so, yeah, I've had positive feedback.
16:32
That's great to hear and and I just feel like so proud of you
16:36
because it's not easy to share your experiences online and not
16:39
everyone would do that. You know, it might come easy to
16:42
you if you're used to it, but a lot of people would really
16:45
struggle to open up. And I think you're such a good
16:48
representation for people that might struggle to open up about
16:52
their disabilities, especially with the stigma around men's
16:55
mental health as well. I think it's great to see, you
16:59
know, just men like you talking openly about their struggles,
17:02
but also their daily lives outside of it.
17:04
And, you know, you're not just your disability.
17:07
You are so much more. And to show that you can do so
17:11
much more, well, yeah, obviously bring some hope to a lot of
17:15
people. So thank you for all that you
17:17
do. Thanks so much.
17:18
I really appreciate it and it's really great to hear that from
17:21
somebody you know who has muscular dystrophy themselves.
17:24
Absolutely. I know our conditions are under
17:28
the same kind of umbrella, but obviously they're very, very
17:31
different. Mine is limb Goodall and your
17:34
side to Shan. So can you tell us a bit about
17:37
what your symptoms are now, like how you're doing with it right
17:40
now? With you, Shan, I sort of deal
17:42
with various symptoms and tiredness can be a big one.
17:46
So sometimes I have to just, you know, make sure I get enough
17:48
sleep and make sure I am relax because I find it very hard to,
17:54
you know, stop and also fatigue as well.
17:56
So sometimes I can, you know, want to just grab as much food
18:01
as I can and just, you know, eat because I, I suffer with fatigue
18:05
and also as well calf muscle cramping.
18:08
So sometimes I would be just throughout the day, you know,
18:12
sitting down in my chair and all of a sudden I would get a bit of
18:14
cramping. So that can be a bit tough.
18:18
I also have sort of hip and femur pain and because I've
18:22
broken both of them and I've had to have metal plates put into my
18:26
hip. So those things can also make
18:30
everyday life challenging, but I just try to manage my symptoms
18:33
as best as I can. Wow.
18:36
You've you've broken your bones. That's it.
18:39
I mean, it's scary anyway, but it's especially scary when
18:42
you've got an kind of an underlying condition.
18:45
What happened there? Sorry, I'm being nosy now.
18:48
Yeah, no, you're fine. You're fine.
18:50
I've told the story back when I first started, I'd say my
18:53
council. Yeah, it's been a long time, but
18:56
yeah, so for me, I first of all broke my femur and I was in, I
19:01
was about 16, I would say. I was still full time walking.
19:04
And so I was actually walking home to a friend's house and I
19:10
went over and I fell and I broke my femur.
19:14
I fell out onto the roads. And so that was a really tough
19:18
thing. And also as well at that time
19:19
was hard because I went from walking full time to being a
19:24
full time wheelchair user. And I was so I was so good at
19:27
masking things back then that I would even get questions after I
19:31
was in the chair and be like, you know, when you getting out
19:33
that thing. So that was the first thing, the
19:35
femur. So that was like a big event in
19:38
my life. And then the hip came.
19:41
That would have been I think 2021 and I tripped and I fell
19:45
and I broke my hip and yeah, true that.
19:49
I actually had to get surgery, so I had to get like metal
19:52
plates inserted and stuff. So yeah, like I have to get for
19:56
pain management like every six months, like, you know,
19:59
injections done and stuff like that.
20:00
So that's been a very big thing and a very big thing for
20:04
symptoms because I do suffer with a little bit with pain.
20:08
So yeah, they're my sort of like to break in stories of I broke
20:12
my hand as well. But that was like years ago.
20:14
That was like 10 or 12 years ago.
20:15
So that did not much effect on me.
20:18
Wow, you've you're like crossing off the bingo card there of all
20:21
the different bones you can break.
20:23
Oh, bless you. Well, you're a trooper for going
20:25
through those. And I think you are actually
20:28
inspiring me to use my mobility. It's more like on the days that
20:31
I suffer and I worry that I'm going to fall, I'm like, you
20:34
know what? Sometimes it's not worth it.
20:35
Like, you know, if I fall, I could get seriously injured or
20:39
break a bone. And considering the fact that
20:42
we're not allowed to have casts because if we do have casts, it
20:45
means we can't exercise the muscle from, you know, weeks or
20:48
months or whatever, and the alternative sound really scary.
20:52
So yeah, it just sounds like a much longer and more painful
20:58
process for someone with muscular dystrophy.
21:01
That's it, of course. And yeah, it the thing with me
21:05
is that I've always sort of been a bit rebellious and I'd be
21:07
like, oh, you know what I mean? You know, walk as long as you
21:09
want, do what you want. But it is hard sometimes when
21:12
you're like feeling tired or something, you know, sometimes
21:14
it is good to just say to yourself, OK, I will use my
21:17
mobility aid and I will do this. And even though for someone like
21:20
stubborn, that is really hard to take.
21:23
But for me as well with the femur, they actually did use a
21:26
cast, but they used like this, it was like this cast that they
21:29
made-up sort of. So it was very like lightweight
21:33
and I actually managed to get back up on my feet after
21:36
breaking the femur, but I was mostly walking just in the
21:39
house. And but my foot was never the
21:41
same because I did have, you know, a cast on.
21:44
It was a lighter cast. But yeah, the muscles really did
21:46
get damaged and they never recovered.
21:48
Wow, that's crazy. Well, thank you for going
21:51
through that so that we didn't have to.
21:52
We can learn from you because I'm an extremely seven person as
21:56
well. I, you know, even if I'm
21:57
struggling, I'm like, no, no, no, I want to do it.
21:59
I want to do it all, but sometimes it's not worth it.
22:03
And sometimes, you know, we push ourselves to the extreme and we
22:06
end up suffering. And I need to remember that
22:09
sometimes it's OK to just, you know, take a break or sit down
22:13
or use a mobility aid. You know, having this condition
22:16
in general, I think, you know, it does make us stronger.
22:19
Not physically, obviously, but, you know, mentally and mentally.
22:23
Yeah. And just, you know, and I'm sure
22:26
your family as well and your sister have so much of A better
22:29
understanding because of you. You know, you've brought like,
22:31
so much perspective into their lives as well.
22:34
Yeah, yeah, exactly. That's the thing.
22:36
And it's funny for them because they see these things and they
22:39
see these struggles that I've had and, you know, they really
22:42
fight on my corner and that's, you know, really cool.
22:45
And I think it's fun as well because when they go away
22:48
themselves, like my older sister, she lives actually in
22:50
New York. So when she's there, she would
22:53
be like, you know, saying things to her friends or whatever and
22:56
saying, you know, this isn't accessible and, you know,
22:58
telling people. So sort of like I, I love it
23:01
though, because it's like this thing of like spreading the
23:04
word. So it's like, oh, you know, my
23:06
brother had a dis has a disability.
23:08
You know, I've learned from that and I'm going to, you know,
23:10
bring it somewhere else and bring it to more people.
23:12
So I find that very funny. And but yeah, it, it has, you
23:16
know, my experience has definitely made them more
23:18
resilient and more understanding of, you know, people with
23:21
disabilities. I love that she's basically
23:24
advocating for you from the other side of the world, you
23:27
know, like pointing things out, pointing out inaccessibility.
23:31
And I know that's, you know, especially a problem in big
23:34
cities like New York. There's still a lot of work to
23:36
be done. But I love, I love all my
23:38
friends point stuff out that they wouldn't have known about
23:42
if it wasn't for me. You know, they're like, oh, like
23:44
I went, I went to this place today and I just realised like
23:47
there was a giant step to get in and there was no ramp.
23:49
Like, and I'm just like, thank you for thinking of that, you
23:52
know, that actually the fact that they're even considering
23:55
that, you know, and integrate that into their daily life.
23:58
It's lovely to see because I always think of this like, you
24:01
know, if I had a friend who had a disability who used the
24:03
mobility aid, I would think the exact same way.
24:06
But when you sort of think of it yourself, you sort of feel like,
24:09
Oh my God, they're doing that. You know, you think it's really
24:11
cool. But like, yeah, I would just
24:13
think of that, you know, in a way.
24:14
So it's, it's great though. But that's that shows they have
24:17
really good friends as well. And my friends will be the same.
24:20
So it's it's pretty cool. Absolutely.
24:22
One thing I have yet to do that I'm actually quite excited for
24:26
because I love going out, but I've never gone out in a
24:30
wheelchair before. And I've always been so careful
24:33
when it comes to, you know, drinking or where we go.
24:38
And I'm just really worried that, you know, if I drink too
24:40
much and I end up losing my balance and falling, I might
24:43
like end up in a horrible situation.
24:45
But I'm like, if I go out in my wheelchair I can just get
24:48
carried away. That's it exactly, exactly.
24:50
You know, there's, there's actually some advantages to
24:53
having a wheelchair or mobility aid.
24:55
And because I would have been the exact same actually, you
24:57
know, when I, when I first broke my femur, like 16 or 17, I, I
25:01
shouldn't say I was drinking. I know I technically wasn't
25:04
drinking because I was under 18. So just ignore me on any of
25:06
those points. But when I was going out, having
25:09
a fun time with friends, you know, yeah, when I was going out
25:11
and having a good time with friends, you know, it was that
25:14
thing of where I was nervous and stuff like that.
25:16
I, I remember I actually went to a party and I slipped on tile
25:20
and this random fella came over to me and he just picked me up.
25:23
And I was never, I was never, I was embarrassed in my life and I
25:26
was like, OK, you know, I'm going to never do this again.
25:29
But I did do it again. But yeah, it's that weird thing
25:32
of like you're so afraid of something going wrong that your
25:36
focus turns into that, you know? So I would definitely advocate
25:39
to use a mobility aids and if you're worried about that.
25:42
Yeah, that's actually such a good point.
25:44
You know, it's constantly at the back of my mind and I feel like
25:48
it, it would just use my mind so much and I wouldn't have to
25:51
worry about that aspect of, you know, constantly looking out for
25:54
myself. Or it's especially, you know,
25:57
worse when it's really busy and people bump into you and then
25:59
you could be on the floor like that.
26:02
The only thing I'm still battling with, and I know that a
26:06
lot of people will struggle with this as well, is just going out,
26:08
especially somewhere where, you know, you'll bump into a lot of
26:11
people that you know, but in a wheelchair, you know, there's
26:14
still not many people I see out and about using mobilities or in
26:17
wheelchairs on a night out. And it may be because they're, a
26:22
lot of them are like me and they have invisible disabilities and
26:25
they just, you know, want to hide it or just, I don't know, I
26:28
just want to carry on. But I'm just going to try and
26:32
battle that like inner ableism and just do it.
26:38
Yeah, exactly. It is so hard though.
26:39
Like I don't think people realise how hard it actually is.
26:42
And because you're going from, you know, people that you've
26:45
known for a long time, they've never seen you in a wheelchair.
26:48
To seen you in a wheelchair and all of a sudden your mind is
26:50
like, oh, you know, are they going to treat me different?
26:52
Are they going to talk to me in a different way?
26:54
So it's funny because even with me, with my life, I've always
26:58
thought, you know, it's weird. Like, I see some people I knew
27:01
from the past when I was walking and then I was in the chair.
27:03
And I find it really hard to be comfortable with those people.
27:07
And it's, you know, not a fault of their own.
27:09
But it's just this weird thing within me where I'm like, you
27:12
know, this is awkward. But yeah, it, it's tough.
27:15
It's tough to, you know, overcome that and, and just try
27:19
use your, you know, mobility aids.
27:21
And but I try to say to myself, you know, life is very short.
27:23
So just try do it and just try put yourself out there, you
27:27
know, it's very short. And other people would, you
27:30
know, crave at the chance of that.
27:31
So yeah, that's what I try to say to myself.
27:34
That's very true. And who knows, maybe people will
27:37
all just be jealous of me and they'll all want to go sitting
27:39
in my wheelchair. Exactly, that's the thing.
27:42
They'll be like all kind of a go and stuff like that, you know
27:44
it's. Actually, because I've just
27:45
gotten a electric add on so I can go fast now, you know,
27:50
people will want to go to like whiz around and, you know,
27:52
pretend like they're a Mario Kart or something.
27:55
That's it. Exactly, exactly.
27:57
It's all just these like fun things they have to think about.
27:59
And you know, I always get, you know, my friends would always
28:01
tag me off and stuff like that and be like, you know, oh,
28:03
you're going to get speeding ticket.
28:05
And I'm like, you know. Challenge accepted though.
28:10
Well, thank you anyway, because I think seeing people like you,
28:13
I mean, I am 24 as well, so seeing someone exactly my age
28:17
just going out and enjoying life and you know, you, I know you're
28:20
a sociable person. I know you enjoy going to the
28:22
pub, you know, from your Instagram.
28:24
I might be wrong because you know, social media is not is you
28:28
know, it's not all the the whole truth, but I have seen
28:31
obviously, even I know you like your Guinness.
28:34
It's not something that's on my radar.
28:39
It's an Irish thing. It's an Irish thing.
28:40
You know, you need your Guinness.
28:41
It's just like a it's like our blood at this point.
28:44
But yeah, yeah, I do actually love to go out and go to the
28:48
pool and stuff like that and, you know, go out to nightclub
28:51
and all. And, and it's funny as well
28:53
because when I do get to do those things, I absolutely love
28:56
it. But sometimes I can be a very
28:57
like quiet person, a quite reserved person.
29:00
So it just depends on, you know, who I'm with and if I'm
29:03
comfortable with those people. If I'm comfortable with those
29:05
people, I'll be like, hell yeah, you know, let's go and do this.
29:07
But yeah, if I'm just not really comfortable, I'll sort of go
29:11
into my own self a little bit. So, yeah, it, it is half true,
29:15
half not true. You know, that's the game.
29:17
Like, yeah. So it's it's sort of this funny
29:19
thing of if I feel comfortable with people and, you know, I'm
29:22
around those people, I'll be like, you know, let's go every
29:25
day. And then of them in the
29:26
different situation, it wouldn't be like that.
29:27
So yeah, I think it though, it depends on the day because
29:31
you're obviously you're not going to be going to a nightclub
29:32
seven days a week. Like, I don't think we'd be able
29:35
to keep up a time, no. Absolutely not.
29:38
Maybe, maybe there was a time and I hate when people say.
29:40
Like, oh like. You're so young, you know you're
29:43
still in your 20s. You should be going out all the
29:45
time. I'm like trust me with my
29:47
fatigue there is no getting me out that door multiple times a
29:50
week, let alone once a week. Exactly.
29:53
Yeah, exactly. And if it's too cold though, I'm
29:55
just like, no, I'm not. Bought a bike?
29:57
Honestly, like this kind of time of year when it's freezing
30:01
outside, I really dread to go outside.
30:04
And I'm an extrovert. I love meeting new people, I
30:07
love going out and socialising. But something I've had to learn
30:11
is that my battery doesn't always allow that.
30:14
And I'm just talking about my physical battery, my fatigue
30:17
battery I guess. And there does come a point
30:20
where even though I love socialising, I just can't.
30:23
I'm like, you know what, I have to tap out, I need to go home.
30:27
That you know, you have to listen to your own limits, don't
30:29
you? That's exactly you do.
30:31
And I've learned myself, you know, it's like over the years
30:34
or it's like, OK, you know, I need to just rest now.
30:36
And, and I've sort of mentioned before, like when we were sort
30:40
of talking is that I do like to do everything and I don't like
30:45
to stop. So I can't stop.
30:46
Sometimes I'm just like, oh, you know, you have to stop.
30:49
So yeah, with these conditions, that's another hard realisation
30:52
is that sometimes you need a break and you need to just, you
30:55
know, give yourself time to recover and because, yeah, it
30:59
can cause, you know, a lot of fatigue.
31:01
So for. Sure, absolutely.
31:04
Umm, well, thank you so much for taking your time to chat with me
31:08
too. It's been really nice just to
31:09
get to know you on just like a, a deeper level and just, you
31:13
know, being in different group chats and passing ships on
31:16
social. Media.
31:17
That's it. That's it exactly.
31:19
It's nice just to talk one-on-one because, yeah, I feel
31:22
like we're in our community. Like sometimes you could have
31:24
like group chats and stuff like that and, you know, get to know
31:26
people through that. But yeah, it's, it's really nice
31:28
just to have a chat. Absolutely.
31:30
And it's nice to not just complain.
31:33
I think it's really easy to complain about the worst parts
31:35
of our condition. But there's still so much, you
31:38
know, goodness in our life. And like you said, life is too
31:41
short. So if I do have a bad day, like
31:44
I try to just sit with it for a minute and then just kind of let
31:47
it go because I want to still enjoy life as much as I can.
31:50
And I think social media is a great way to enjoy life.
31:56
But I think, you know, it can be a place where you can easily
32:00
focus on the negative. So it's nice to be able to just
32:04
to chat about the normal things as well.
32:08
But that's exactly, and for me, like I sometimes think of social
32:12
media like I need a break sometimes and you just get off
32:15
it. And even if you do try, you
32:17
know, control your content and stuff like that, sometimes I
32:19
find myself, like, scrolling and it's just these, like, both
32:22
stupidest videos, you know, that you have.
32:24
And, you know, that is fun and that's fair.
32:26
But like, when you're there for like an hour, just scrolling,
32:28
that can become very unhealthy. So yeah, it is nice to just sort
32:31
of step out that sometimes and just, you know, chat.
32:35
Absolutely. It's something I'm trying to
32:36
work on is my screen time and just like doom scrolling.
32:40
And I keep saying to myself, just because I work in social
32:43
media and I obviously we both do a lot of content.
32:46
It's important to step back from that for a set.
32:49
Because I think as content creators, we always think about
32:52
the next thing we want to post and, you know, to try and stay
32:55
active and, you know, provide this content to our followers.
32:58
But actually we still need to take time for ourselves and we
33:02
need to protect ourselves as well.
33:04
Yeah, it's a weird balance. And for me, like I've, I work in
33:08
social media as well. So it's this weird thing of
33:10
like, OK, like you need to switch off now.
33:12
Like stop looking of trends, stop trying to, you know, do
33:14
this or do that. So it's like this thing of like,
33:17
you know, live in the real world.
33:18
You know, it's, it's the online world is great.
33:20
But sometimes, yeah, you do need to switch off.
33:22
Absolutely. So you mentioned that you work
33:25
in social media. Why is that important to you?
33:28
Well, I think it's really important to me because sharing
33:32
your story has a big power and also sharing my own story, it's
33:36
sort of helped me to understand myself better and it also helps
33:41
others feel seen and supported too, which is a big thing.
33:45
I want to show like the reality of living with a disability and
33:48
not just the medical side of things because I feel like a lot
33:51
of people and just see disability as a medical thing
33:55
and there's a human side. And, you know, I want to break
33:57
the stereotypes and show the disabled people can be
34:00
confident. We can, you know, be ambitious
34:03
and also be outspoken. So activism sort of matters to
34:06
me. My social media is a way of
34:09
creating change. And any of the other, you know,
34:11
organisations or companies I've worked on social media, that's
34:15
the way I think as well. It's sort of just to make things
34:17
easier for people or, you know, create change.
34:21
That's incredible, and you're definitely using your platform
34:24
for the better, just to raise as much awareness as possible and
34:27
to kind of break the barrier and not just create content for the
34:31
disability community, which is really important, you know, for
34:34
people to have that representation, but also break
34:37
into the audiences that may not see much disabled content and to
34:41
be aware that, you know, disabled people are still normal
34:44
people and we still have normal lives.
34:45
So that is incredible what you do.
34:48
Thank you. Thank you.
34:49
I really appreciate that. Did you say you work with a lot
34:52
of other like companies or organisations on social media?
34:56
Yeah, like I've done a lot of work with companies and stuff
34:59
like freelance work or I I did an internship in or T, which is
35:02
our version of the BBC. So it's our like national
35:05
broadcaster. So and I was like a social media
35:08
intern there for a while. So yeah, it's really cool.
35:11
Like, I've loved, you know, working in social media, doing
35:13
freelance work, social media. And so, yeah, I feel like that's
35:18
a great thing but also a curse, as you say, as well.
35:21
You know, you're always switched on.
35:22
So yeah. But it is cool getting to do
35:24
that work. The thing is with social media
35:27
creating is people say that scrolling is actually like
35:30
homework. You know, you're actually doing
35:31
research for constant new ideas, which is great.
35:35
But then I feel like I'm just using that as an excuse.
35:37
If I'm scrolling when it's getting really late in bed and
35:40
I'm still scrolling, I'm like, no, no, I'm just getting ideas.
35:42
But actually I should probably. Switch off.
35:45
That's it exactly. I love that.
35:47
I want to ask you a question that I ask all my interviewees,
35:51
which is, is there a piece of advice that you'd give to
35:55
someone else that's maybe just gotten diagnosed or that's gone
35:58
through something like you have like a younger version of
36:01
yourself maybe? Yeah, I would tell anybody who's
36:05
been diagnosed or my younger self, the younger version of
36:08
Connor, and just not to be so hard on yourself and like, you
36:13
don't need to hide your symptoms to try to fit into what you
36:18
think is normal and because you're definitely enough as you
36:21
are for anybody struggling. Like, it just doesn't define
36:25
your value, you know, ask for help when you need it and take
36:28
life one day at a time. And and also don't be afraid to
36:32
smell. Celebrate the small victories.
36:35
And there's real strength in being honest about what you're
36:37
going through. I absolutely love that.
36:41
That is a perfect way to end this episode.
36:44
And I'll be definitely taking that advice for myself.
36:46
I think it's so easy to be hard on yourself with anything, you
36:51
know, not just anything disability related just in life.
36:54
But I always try and treat myself like I would treat a
36:57
friend. Like I would never let my friend
36:59
treat themselves really hard or be hard on themselves.
37:02
So I'm trying to talk to myself in the same way and be like, no,
37:06
I need to give myself a bit of grace, you know, I am trying.
37:10
It's hard, but yeah, sometimes you need to.
37:12
You need that tough love sometimes, you know?
37:15
Yeah. Exactly.
37:17
Thank you, Connor, so much for coming on the podcast today.
37:20
It's been so nice to chat to you.
37:22
It's been an absolute pleasure. It's been a pleasure to be on
37:25
and I really want to thank you for having me on.
37:27
It's been great. And you know, I've really enjoy
37:30
getting to know you over the past couple of years, but also
37:33
now on this one-on-one level, which I think is really cool.
37:35
Like we'll call your friend. So that's the main thing.
37:38
But I also want to just thank, you know, everyone who also
37:41
supports me as well, you know, like my family and friends and
37:44
people who follow my journey online.
37:46
It does mean a lot. So one more thing.
37:49
I also want to encourage, you know, people to learn more about
37:52
disabilities and listen to those living with them.
37:54
And awareness does lead to understanding, and understanding
37:58
leads to change. And to anyone living with
38:00
Duchenne or another disability, your voice definitely matters.
38:04
So do not be afraid to use it. I'm.
38:07
Going to cry. That was so good.
38:08
That was that was amazing. Thank you.
38:11
Yes, your voice absolutely does matter and you're using your
38:15
voice, Connor, to some incredible levels and I can't
38:19
wait to see you continue to grow your platform and just to
38:23
educate people and raise awareness.
38:25
Guys, please, if you're listening and you don't already
38:27
follow Connor, please follow him on social media.
38:30
I will link his at below in the description.
38:34
So please check him out. Thank you guys so much for
38:36
listening to today's episode. If you enjoyed, please don't
38:39
forget to rate this podcast 5 stars and to subscribe if you're
38:43
watching on YouTube and follow the podcast on your favourite
38:46
podcast platform. Thank you so much to Cure LGMD 2
38:50
I and Bridge Bio for sponsoring this podcast.
38:54
I appreciate you guys so much and I will see you guys very
38:56
soon in my next episode. Bye.