Latest / Unbalanced with Cerys Davage / 87. Valuable lessons from my 20s (ft. Jasmine Robinson)

Transcript

87. Valuable lessons from my 20s (ft. Jasmine Robinson) · Unbalanced with Cerys Davage

0:10
Hey guys, welcome back to another episode of Unbalanced
0:13
with Me, Kerastavid. How are we all doing?
0:17
How are we holding up in this heat?
0:19
It is really warm where I am right now in the UK, but I've
0:22
got some water with me. I'm determined to get through
0:25
this because I'm really, really excited to be bringing on an
0:29
LGMD friend that I met online and we've been in touch for a
0:33
while now. She really has become one of the
0:37
closest people ever that I just haven't met in person yet,
0:41
someone that I can confide in and really lean on for advice
0:45
and I think that's so important in the community.
0:48
Welcome Jazz, How are you doing? I am doing pretty good.
0:52
It's pretty hot in Georgia, but for the most part I'm making it.
0:56
You've got it, you've got some water.
0:58
I've got my water. I'm ready to go.
1:01
Obviously I know you a little a little too well by now, but
1:06
introduce yourself to our audiences.
1:08
Where are you from and what do you do?
1:11
Hi, hey everybody, So I am Jasmine.
1:14
I'm originally from Atlanta, GA, but now I live in Winder, GA so
1:20
it's more so like the countryside.
1:25
I'm 30 years old. I just turned 30 back in March.
1:30
I work in healthcare for a major hospital system.
1:35
I'm finishing my degree in healthcare management.
1:39
Outside of work, I absolutely love fashion.
1:43
I love to travel. I love food.
1:46
I love finding, like, accessible ways to still enjoy life.
1:50
Most people are, like, surprised when they learn that I have a
1:53
disability because I stay active and I drive and I work.
1:57
And like I said, I travel and I try not to let my diagnosis
2:01
become like, my entire identity. So yeah, that's a little bit
2:05
about me. I love that.
2:08
I think it's really important to have an identity outside of your
2:11
disability because it takes so much away from us and it
2:15
controls a lot of what we end up doing in life.
2:17
But I think it's important to have other focuses to not be
2:22
like thinking about that and thinking that that's what's in
2:24
control of your life. Exactly.
2:27
Exactly. So you work in a hospital.
2:30
Tell us a bit about what you do there.
2:33
So in the hospital system, I basically work with a team of
2:39
clinical nurses and we're just making sure that the patients
2:44
are actually getting approved for the services that they're
2:47
needing. Like if they come in to the
2:50
emergency room because they, you know, broke a leg, we want to
2:55
make sure that, you know, their insurance is obviously active
2:59
and that we're doing our job and moving quickly to get claims and
3:03
authorizations approved so we can make sure that they get the
3:07
care that they're needing. So basically making sure that,
3:10
you know, overall like the patient is well taken care of at
3:13
the end of the day. I know that most businesses or I
3:18
wouldn't say business, but like in a hospital setting, I know
3:21
that most actually, you know, they care about like the money
3:26
side obviously. But I feel like for me it's more
3:30
still caring about the patient first because being, you know,
3:35
having a disability, I know at first hand how it is, you know,
3:39
to be cared for and the things that, you know, we have to go
3:42
through behind closed doors. I was just thinking that like
3:45
that's such a well suited job for someone who could actually
3:49
relate to the patients and know that they need that specific
3:53
type of care. I think that's so special.
3:56
Yes. Like, for example, I know like I
3:59
was working really hard to help this one lady get like a
4:04
wheelchair and she was saying that, you know, they kept
4:08
denying her. And so, like, I was helping her
4:10
with like, the medical necessity, documentation of
4:14
things. And she was like, oh, my God,
4:16
you know, you never stopped fighting for me.
4:18
Like, God bless you. Like, why are you so sweet?
4:21
Like, why you kept, you know, waking up every day reaching out
4:24
to me. And once I explained to her,
4:26
like, you know, just because you don't see me often, I also have
4:30
a disability. And I also use the same type of
4:32
power chair that you're trying to, you know, receive.
4:36
And she was like, wow, she was just so like, shocked.
4:40
And she was like, you know, we need more people in the
4:42
healthcare feel, you know, that has a disability because you
4:46
guys actually know and you understand.
4:50
And I was like, Yep, that's why I'm here.
4:52
I love that. And you've been working there
4:55
for a while now. You're honestly so busy with
4:57
this, with these shifts. I don't know how you do it, but
5:00
hats off to you. So your degree as well.
5:04
You're, you want to see where many hats, you do a lot of
5:06
different things. You're juggling a lot in your
5:08
life. But tell us a bit about your
5:10
degree as well. So my degree is actually in
5:13
healthcare management, which is perfect for my current role.
5:19
And with this degree, it allows me to just see like the
5:23
management side of things in healthcare.
5:26
And obviously I went to one day work my way up to becoming like
5:29
a director at the hospital in which is like a huge hat.
5:34
But I really feel like, you know, I have, you know, I, I, I
5:38
have what it takes to step into that role of leadership.
5:43
So I'm just really enjoying, you know, this degree.
5:48
I have about 8 to 10 more classes and I will be, you know,
5:53
walking and rolling across that stage.
5:56
Well, that's. Not going to be far away, so
5:58
congratulations in advance. You're absolutely smashing it
6:02
and I really can't wait to see you climb that ladder and just
6:05
keep on working in some way that you're just really passionate
6:08
and really good at. So you have LDMD, but not the
6:11
same subtype as me. Tell us a bit about your subtype
6:14
and when you were diagnosed. So my journey was honestly a
6:22
long one. Looking back, there were signs
6:25
throughout my childhood that something wasn't quite right.
6:29
I struggled with things that seem easy for like other people,
6:34
like getting up from the floor, running, climbing stairs and
6:38
keeping up physically. As I got older, the weakness
6:43
became like more noticeable and it was like really hard to
6:46
ignore at that point. So after years of like questions
6:52
and testing and trying to figure out what was happening to my
6:55
body, I was finally diagnosed with like limb girdle muscular
6:59
dystrophy type 2A in 2020. So mine basically, it affects
7:04
like my shoulders and my heels. But you know, with MD it can
7:09
really feel like all over your body.
7:12
One good thing I will say is that with my subtitles, it
7:16
didn't affect like any of my organs like such as my heart.
7:20
You would you see like quite a few other subtitles.
7:24
Yeah, for the most part it just affect my lambs and just the
7:28
weakness. But you.
7:30
Found ways to adapt to that and I love this community because
7:35
like we can all get tips from each other.
7:37
Do you find that as well? Oh, absolutely.
7:40
Absolutely. And I was just also add to that,
7:44
like, getting diagnosed was bittersweet because it was
7:48
heartbreaking because there was no cure.
7:50
But it was also like a relief because I finally had answers.
7:55
And it's like I wasn't lazy. I wasn't out of shape.
7:59
I wasn't like, imagining things in my head.
8:01
You know, there was that extra reason why my body was
8:04
struggling, you know, during these times.
8:07
And it's just like a even bigger relief now that I have, like,
8:11
some of the most closest friends, you know, that I found
8:15
through, you know, these support groups, you know, such as
8:17
yourself, you know, in a couple of other friends.
8:21
And it's like, wow, you know, I'm not alone and I can reach
8:26
out to you girls like at any time.
8:28
And you guys are there no matter the distance.
8:30
And I just feel like, you know, I can kick MD butt if I really
8:35
want to. That's the best attitude to
8:39
have. So how old were you when you
8:41
finally got that diagnosis? So I was actually 24 when I
8:48
finally got the diagnosis, but my doctor believe I've always
8:52
like, you know, had MB since, you know, a little child, but I
8:56
just wasn't going to start showing more symptoms until like
9:01
I got. Older.
9:03
Well, OK, so how did you find kind of going through your 20s
9:07
now that you finally had your diagnosis, You had your answers,
9:10
but you also then had to navigate kind of a new kind of
9:15
life with this diagnosis. How did you find that?
9:19
Good question. So like the physical challenges
9:22
are obvious, but honestly the emotional challenges have been
9:28
like harder for me. Like watching your body pretty
9:31
much like change year after year to be honest.
9:35
It's difficult. Like, having to give up things
9:38
you want, you know, could do is difficult.
9:41
And learning to like, ask for help was even more difficult.
9:46
So I think one of the hardest thing is like grieving myself
9:49
while, you know, still alive. Every stage of limb girdle
9:53
muscular dystrophy, it requires like a new version of
9:56
acceptance. And I had to really come to
9:59
terms with that. But what really helped me
10:03
overcome it was really like my faith, like my support system
10:08
and really just changing my perspective.
10:11
Like instead of focusing on like what I lost, I started to focus
10:15
on like what I still had. And I may not be able to do the
10:19
things, you know, the traditional way, but I can still
10:22
do so many things. And that mindset really changed
10:26
everything for me. So I just pretty much, you know,
10:29
keep that wolf me like every day I wake up, every day I go to
10:32
sleep. Yeah, I think mindset is really
10:34
everything. It really can change your life
10:37
if you harness the right mindset and focus on things that you can
10:41
still do whilst also balancing grieving the things that you've
10:45
lost. Do you feel that as well?
10:46
Absolutely, girl. Yes, yes.
10:50
It can be really tough, but I think it's important to to
10:54
acknowledge that, as well as acknowledging what you can still
10:58
do and still finding ways to be grateful for all the little
11:01
things in life. What I love about you is that
11:06
you managed to still shine. Your personality still shines
11:09
through despite all the challenges that we've had to
11:12
overcome with this condition. I love that you're such a
11:15
fashion Easter as well. You've been posting a lot of
11:18
pictures in your wheelchair or using mobility aids, but like in
11:22
such a cool way that I'm like, I want that cane, I want that
11:26
wheelchair. And I think it's really
11:29
important to have that representation of like mobility
11:33
aids online worn by young women who just look absolutely
11:39
incredible. So you're definitely that role
11:41
model for me. Oh, thank you.
11:43
I love you so much. I love you, girl.
11:47
We'll be saying that a lot. This happened so much.
11:50
How have you found kind of balancing your your love for
11:53
fashion and dressing up and exploring with different items
11:58
of clothing whilst also like hand in hand with your
12:01
disability or using mobility is at the same?
12:04
Time overall with just like basically like how I'm doing now
12:10
and just you know, enjoy life throughout fashion.
12:14
I would say like I'm doing pretty well, not perfect, but
12:18
well, MD, especially LGMD is progressive.
12:23
So like, I'm definitely weaker than I was a few years ago, and
12:27
I use a wheelchair most of the time now.
12:30
And there are things like, I still need help with that I used
12:34
to do independently. But at the same time, I'm happy,
12:38
I'm growing, I'm working, you know, I'm building these
12:42
relationships, I'm making memories.
12:44
And I think people assume, like, disability automatically means
12:48
like a poor quality of life. And that's just not true.
12:52
It's not true. Like, my life looks different,
12:55
but it's still beautiful. And I have to continue to remind
12:58
myself of those things. And when it comes to that, I
13:04
find myself like full blown enjoy fashion.
13:08
Like I absolutely love fashion as you could see.
13:12
Like I always joke that like longer to did it take away my
13:14
ability to put like the outfit together?
13:17
I always make that joke like I could still dress up even if,
13:21
you know, it looks a little different and I'm not like doing
13:25
anything crazy. I could still dress up.
13:29
I love dressing up, I love expressing myself through
13:31
clothes. I love like travelling, I love
13:34
like trying new restaurants, as I stated, like spending time
13:37
with like my family and friends, you know, creating content,
13:42
advocating for the disability community and just encouraging
13:46
others who may be struggling like be yourself, be bold.
13:51
And I just find myself really enjoying it and especially
13:55
helping people like navigate healthcare because that's
13:57
something I'm like super passionate about professionally
14:00
and personally. Yeah, I think it's so important
14:03
to kind of be that light for people who may not really know
14:06
how to navigate life with a disability.
14:09
And one of the things I love doing is sharing my experiences
14:12
online as as I know you do too. And like you said, you know, you
14:16
can still live a really good life with a disability.
14:19
And, and contrary to a lot of people's beliefs, they think
14:23
that once you're using mobility aids or once you're in a
14:26
wheelchair, then life is over. There's that term like end up in
14:30
a wheelchair. For me, it's not the end for me.
14:33
It's opened so many doors. It's given me so much freedom.
14:37
And as much as I still struggle with being seen in mobility
14:40
AIDS, sometimes, it's that's an internal idolism thing I'm
14:44
trying to battle, right? It just provides so much freedom
14:47
and I feel like I can live again, you know?
14:49
Right. I struggle with like using a
14:53
cane. I remember saying like, no, I'm
14:55
like 20 some years old and that you want me to start using a
14:59
cane. Like no.
15:01
And girl, now I love dressing up with my cane.
15:05
I love matching it sometimes. Like sometimes I would just
15:08
order a random cane just because I'm wearing like a certain
15:12
colour. And I just love it.
15:15
Like it really allows me to be free.
15:17
It allows me to, you know, be who I am with no regrets.
15:21
Now that I look back, I'm just like, jeez, I wasted so much
15:25
time being scared, you know, to show that I have a disability.
15:30
And if I could go back in time, it's like I would do things
15:34
completely different. I mean, you're mature now.
15:39
You're 30. Congratulations for turning 30.
15:42
That's a big right. I feel like I really look up to
15:45
you as like my big LGMD sister. But I hear a lot of things about
15:50
turning 30 and like all these epiphanies you'll get to and all
15:54
these life lessons that you've learnt.
15:56
And we've spoken a lot on FaceTime and you've shared a lot
15:59
of things that you've been navigating and just honestly,
16:03
you could be a motivational speaker.
16:05
The way that you talk, you're just so inspiring.
16:09
But I would love to know the kind of things that you've
16:12
learnt recently since turning 30.
16:15
How different is it and how different is life to you now
16:19
compared to maybe when you were in your 20s?
16:24
Turning 30 literally taught me that peace is more valuable than
16:29
people pleasing and I've learned that not everyone is meant to go
16:34
where you're going and I've learned that boundaries are
16:37
healthy and most importantly I've learned that you can love
16:42
people and still choose yourself.
16:46
Life is very short and my mom passed away when I was 16 and
16:54
living with like a progressive disease reminds me like every
16:58
day that tomorrow isn't promised.
17:01
So now I celebrate more, I travel more, I love harder, and
17:07
I stopped waiting for the perfect time to just enjoy my
17:10
life. So that's really that.
17:14
Wow, yeah, that's a lot of really good advice, like.
17:19
That was a good one. And I'm so glad you, you know,
17:21
you asked that question because it's necessary.
17:25
You only get one life. You're like yellow.
17:28
Yeah. You only live once.
17:29
So like go full blast it on with your life.
17:33
Yeah, sometimes it really hits me that tomorrow isn't promised
17:37
and that just motivates me to just, you know, text all my
17:40
loved ones and be like, just want to say I love you.
17:43
I do want to ask you though, when you said about you can love
17:47
other people but choose yourself, that's something that
17:51
I struggle with because I'm such a people pleaser.
17:54
I want everyone to be happy. I want everyone to be OK.
17:57
I hate like having anyone in my life that's not OK.
18:02
And I will bend, kind of bend over backwards to make sure that
18:05
other people are happy, even if it's at the cost of my own
18:08
health. How would you explain and how
18:11
would you best advise me to love other people but choose myself?
18:17
You have to be selfish because people will continue to use you
18:24
until they can no longer benefit from you.
18:28
And we, as women with a disability such as limb guard or
18:34
muscular dystrophy, we tend to feel as if we have to please
18:40
people because we need something in return, such as our
18:44
independence. Whether it's, can you get my
18:47
wheelchair out of the car? Do you mind picking this up?
18:50
Do you mind grabbing that for me?
18:52
Can you help me, you know, get a pedicure?
18:54
We always feel the need that we have to pour back continuously
18:59
into others because like we need some sort of like physical help
19:05
and we have to stop putting ourself in those type of
19:07
situations. And if they can't truly love you
19:11
for you with no benefit, then they're not for you.
19:14
OK, I love that. I'm going to definitely save
19:17
that. Just I'm going to clip that up
19:19
and just play it every day to remind myself.
19:22
And because I guess the right people will stick in your life,
19:27
they'll still stick around if you if they're the right kind.
19:30
Of exactly, it's going to get very, very lonely because you're
19:35
gonna start seeing so many people drop like flies.
19:38
Like, Oh my God, I, you know, you're just gonna start noticing
19:42
that. Like I used to have so many
19:45
people and I was doing, and that's because I was doing so
19:48
much for other people then in my back over and making sure that
19:51
they were happy and comfortable while I was uncomfortable.
19:54
And I told myself like, I don't want to live like that this
19:57
year. I don't want to make others
19:59
comfortable while I'm walking around.
20:01
Uncomfortable. Like I deserve to have some sort
20:04
of happiness as well. I'm already dealing with like, a
20:07
progressive disability and it's like, life is short, you know?
20:13
Before I know it, I'm gonna be 60 and you're telling me I'm
20:15
gonna, like, waste all these years making other people
20:18
comfortable while I stay uncomfortable?
20:21
No. So if you're not for me, you
20:23
could just move on to the side and make room for the ones that
20:27
genuinely, you know, wants to see me win and wants to see me
20:30
continue to live a healthy, a healthy life, even if it looks
20:34
different. Yeah, absolutely.
20:37
And eventually, you know, if you do commit all your time into
20:41
other people, you're going to burn out and you're maybe not
20:44
going to be a good enough friend for these people because you're
20:47
not looking after yourself. So I think pouring the energy
20:50
back into yourself and making time to look after yourself will
20:54
also benefit the friends and people in your life because you
20:58
can show up for them 100% whenever you're ready.
21:03
To do that, we also need to start showing up for ourselves.
21:06
You cannot expect to show up for others when you cannot show up
21:10
for yourself. And we have to start taking
21:13
better care of our mind and our body with this.
21:15
Like, you know, having limb got the most gladystrophy.
21:18
Like, I poured so much into others, making sure I could be
21:22
there for whatever event or, you know, helping now if they're
21:27
having like a rough time. And I realised like I was
21:30
burning myself so deeply doing that I wasn't taking care of
21:35
like my doctor's appointments, you know, I know that, you know,
21:41
it was hard for me to be able to do certain things around the
21:45
house. And I'm continuing to pour into
21:48
others. And I'm like, pour into
21:50
yourself. Take care of that investment for
21:52
yourself. Prime example, I know I wanted a
21:56
bathtub live for my bathroom so I can get in and out of the, you
22:00
know, the tub and I can enjoy bubble bells.
22:02
And I've had family members and friends where they was going
22:06
through rough times and instead of me pouring into myself, I
22:10
will pour into them. And then I will go months and
22:12
months without getting those type of investments that I
22:16
needed for myself because I wanted to see them happy and I
22:19
wanted to see them, you know, be in a good space.
22:22
And that just wasn't fair because it was never returned
22:24
back to me. The energy was never
22:26
reciprocated. So I say, you know what, I'm
22:29
done. I have to start living this life
22:31
for me. So now I get up, go get a
22:35
pedicure, I go get a ice cream cone, I will get my hair done.
22:39
And I just live for me. And I just leaned on the ones
22:42
that truly support and love me. I love that.
22:46
That sounds like an ideal day, by the way, when I come and
22:49
visit. You we know exactly that full
22:51
day. Also I want I want to try this
22:53
bath lift. Did you?
22:54
I never. Guess we have to show you.
22:56
Yeah, I have a bat, a bathtub, live.
22:58
It basically lowers me all the way in the water and it brings
23:01
me all the way out and I just love it because sometimes I like
23:05
taking a little nice bubble bath and soak my muscles.
23:09
So it was a really good investment.
23:11
It is actually on Amazon for like $300 and they even have it
23:17
for like the UK, Canada. So I'll be sure to, you know,
23:21
send you to Lincoln. Maybe it can help others you
23:24
know who's looking for a way to be able to get in and out of the
23:27
tub if they're not comfortable, like taking a shower.
23:29
Yeah, that's amazing, 'cause I I don't take baths.
23:32
There is a struggle. And I need by my partner.
23:36
It's awful. So I definitely need to look
23:38
into this. And if I do find a link and once
23:42
gals sends me the link, I can put it in the description of
23:45
this episode. So if you're interested,
23:47
definitely check it out. That's actually really cool that
23:51
you've, you've realised it's, it's, it's difficult that you've
23:54
had to go through those experiences and stall looking
23:58
after yourself. But it's so good that you now
24:01
have that mindset of I'm going to pour into my own cup first so
24:04
that so that it's full enough for me to give energy to my
24:09
loved ones. And do you feel like you're in a
24:12
good place now with, you know, the people in your life, but
24:16
since you've had this new mount mindset and set those
24:19
boundaries. Absolutely.
24:20
So much weight is off my shoulder.
24:22
I do not. At first I was feeling so bad
24:26
for telling people no or that's not for me or you're not for me.
24:33
And now I just feel like so much lighter throughout the day.
24:37
It's like I get up and I do not feel any regrets of putting
24:42
myself 1st. And now that I've put myself
24:45
first, I'm seeing so much, you know, of a bigger impact on my
24:51
life personally. Like, I'm taking better care of
24:54
my health, you know, getting some new shoes, always 1.
24:58
I don't have to worry about staying, like, I don't deserve
25:00
this right now because my friend and my family needs this more.
25:04
And you just have to put yourself first.
25:07
Like, I feel much better, like so much better.
25:10
I feel like some days I just wake up glowing.
25:13
If 30 looks like that for me, I will be happy.
25:16
Yep. It's it's like a lot of like,
25:18
you know, learning. But what she's what, she turned
25:21
30. There's going to be so much
25:23
clarity over your life and you're going to be like, you
25:25
know, me and Jazz had this conversations and now I'm
25:30
finally here. And you're just going to wake up
25:33
one day and just not even care anymore.
25:35
Like you come first. Yeah, such a good mindset to
25:38
have and definitely something I'll be revisiting.
25:41
And you're going to have to wait until I 10:30.
25:44
It's still a few years to go, but I'll be messing you like go
25:47
right. I'm such a people pleaser at the
25:49
moment and I'm really trying to work on that.
25:52
And so that advice is actually really, really useful.
25:55
What else can I expect for when I turn 30?
25:57
Any other tips or just anything? Outside of having that clarity
26:02
and putting yourself first, you're just going to just really
26:05
see a different aspect of life. Like a lot of things that you
26:09
thought that mattered in your 20s, once you turn 30 you're
26:12
going to realise that it really didn't matter.
26:16
It didn't matter. Like all of the shame, the
26:19
guilt, feeling sorry for yourself, losing people, none of
26:25
it mattered because at the end, like you was always like the
26:29
strong one deep down inside. I'm going to move on to online
26:32
as well because obviously we met, can't remember exactly how
26:35
we met, but it was definitely through like MD groups or
26:38
something, wasn't it? It's a very, very big community
26:41
now. Like it's actually crazy to
26:42
think like when I was diagnosed, there was like no one else.
26:45
And now there's hundreds of us online all with different types
26:49
of LGMD or just muscular dystrophy in general.
26:52
And it's such a valuable thing for me to know that there's
26:56
other people there that can share advice or share your
27:03
sadness as well that can relate to what you're going through.
27:08
What's been like something that you've really valued from these
27:12
support? Groups from Just Transparency,
27:16
honesty, and encouragement. It's been a beautiful thing to
27:22
see so many things that we say in our heads that we're afraid
27:27
to say out loud. There's someone actually in our
27:30
support group posting the question and being bold and it's
27:34
like, wow, thank you for asking that.
27:35
I was too afraid to ask that question because I didn't want
27:39
to come off as weird, you know, or you know, or Debbie Downer.
27:44
And we're all in this together and it's just been a beautiful
27:48
thing to see. Like there's something that
27:50
we're wanting to ask that we're afraid of, but in reality, there
27:54
are 3040 fifty hundreds of others that's going through the
27:57
same situation. It's just a beautiful thing to
28:00
know that you know we're not alone.
28:02
Yeah, absolutely. And you are such a light in this
28:05
community. You dedicate a lot of your
28:07
energy into supporting other members of the community,
28:11
including myself, sharing some valuable advice, making other
28:15
people feel like they're not stupid, for sharing some, you
28:19
know, some of their experiences or for dishing out advice and
28:22
just being there for them. I have to like give you credit.
28:26
You are just an absolutely incredible human being and to
28:29
know you is I love. You, I'm just so grateful to be
28:33
able to pour back into others. Like, I know what it felt like
28:38
years ago to be just in a dark place before even the diagnosis.
28:44
I didn't know I had MD, but I knew something was wrong with my
28:47
body. And I used to Google like, are
28:51
there any girls out there that's like have a similar symptoms as
28:55
me? And I was like, you know, trying
28:57
to find like, one girl I could relate to and I couldn't find
29:01
anyone. And I feel like I honestly
29:04
stopped living half of my 20s because I didn't want to go out.
29:09
I was too afraid, you know, to ask for help or to let someone
29:13
know, like, hey, I could potentially fall or I can't do
29:17
XY and Z, so I would rather just stay home.
29:20
So I didn't really get a chance to really enjoy my 20s, to be
29:23
honest, because I was just so devastated with like, what I was
29:27
carrying. And now that I'm in my 30s and I
29:31
just turned 30, I have such a huge different outlook on life.
29:35
And I'm like, my 30s is gonna be the makeup from my 20s.
29:39
Absolutely. I mean, they say 30s is the new
29:42
20s anyway. So you're good.
29:44
You're you're going to be like absolutely smashing at this this
29:47
decade. I know that.
29:50
And it's amazing to see how far you've come since that dark
29:55
period a few years ago in your 20s and how your mindset has
30:00
really changed your life. What's next for for jazz?
30:05
What's next for your 30s? Any hopes you know?
30:08
What? Yeah, my biggest hope is that
30:11
there will, you know, eventually be treatments and hopefully a
30:14
cure for LGMD. Personally, I want to continue
30:20
growing my career in healthcare, and I want to continue
30:24
advocating for people with disabilities, not just LGMD.
30:29
And, you know, to see you showing others that a disability
30:32
doesn't mean your life is over. And I really hope to own an
30:37
accessible home one day. That is like, my biggest goal.
30:41
And, you know, pretty much continuing to create a life that
30:45
allows me to remain as independent as possible.
30:48
So that's really like my hopes for the future.
30:51
Absolutely to the accessible home.
30:53
That's my dream. Accessible but chic, you know,
30:57
like not like a hospital kind of accessible, but like looks good
31:01
too. Well, thank you so much for
31:02
sharing your really, really valuable experiences and you're
31:08
such an incredible person. I've said this already, but I
31:12
really really value our friendship and I'm so glad we've
31:15
been able to do the same together.
31:17
And this will be our last. One either?
31:20
Absolutely no. You're always welcome.
31:22
We'll do a party. That's OK.
31:24
Really good. OK.
31:25
Yeah, you guys aren't ready for that.
31:28
To end this episode, I want to ask you a question that I ask
31:31
all my guests, which is is there a piece of advice you'd give to
31:35
your younger self or anyone else that might be struggling with
31:38
their diagnosis? Absolutely.
31:41
I would tell my younger self, stop apologising for what you
31:45
need. Stop apologising for it.
31:48
You don't have to earn your worth.
31:51
You don't have to prove you're strong enough and you don't have
31:55
to make yourself smaller so other people feel comfortable.
31:59
If for anyone struggling right now, please listen to me very,
32:04
very closely. I would tell you that your life
32:08
still matters, Your dreams still matter.
32:12
Your purpose didn't disappear because of a diagnosis, a set
32:16
back or a disability, or just simply like a hard season.
32:20
Keep going and you may not see the purpose yet, but your story
32:25
isn't over, so just keep going. Yeah, absolutely.
32:30
Just keep going. There's there's so much more to
32:32
life than this tough spot right now.
32:35
You know, there's, there's always, always more I.
32:38
Truly want people to understand that disability is not like a
32:43
tragedy. And I think we get ourselves so
32:46
like, wrapped around that. It's not a tragedy.
32:50
And the lack of understanding, accessibility and inclusion is
32:55
often like the real challenge of it all.
32:58
People with disabilities, you have to keep in mind, like they
33:01
are students, they are professionals, they are parents,
33:04
they are business owners, you know, they are travellers, they
33:07
are dreamers, you know, and we deserve a seat at every table.
33:12
So if you aren't listening to this and you're living with like
33:16
limp girdle muscle dystrophy or another disability, I hope you
33:20
know that you're not alone and there's still so much life, you
33:23
know, left to live. So you don't have to stop
33:26
dreaming because your journey looks different than someone
33:28
else. We need to get you on a stage.
33:31
Honestly, you need to go around schools.
33:33
I'm not even kidding. Just like I really, really see
33:35
this for you. Honestly, I'm so captivated by
33:38
the way that you like just motivate us.
33:41
So thank you so much for sharing that.
33:43
I really really. Appreciate you as well.
33:46
It was my speaking with you. Thank everything from this
33:49
podcast and wake up and be the best version of yourself and
33:53
don't hold back. Yolo.
33:54
You only live once. Exactly love that so much and
33:59
where can we find you on social media if.
34:02
So social media, I am starting to be back really, really active
34:06
on Instagram. I got a couple of things up my
34:08
sleeve. So just be prepared and stay
34:10
tuned. So you can follow me at Jazz
34:13
Inspire. So that's JASSINSPIRE and it's
34:21
the thing for TikTok as well. I'm starting to do some things
34:25
over there as well. So I would love for you guys to
34:27
follow me on my journey and I will follow that.
34:30
Yay. Well, I can't wait to see where
34:33
you go because you're already posting some really incredible
34:36
and just inspirational things. So I will add your app into the
34:41
description as well for people to follow you.
34:43
So thank you again for coming on.
34:45
Thank you guys for listening. I hope you guys enjoyed this
34:48
episode. I mean, I'm sure you did because
34:51
how could you not write? That's just amazing.
34:53
Thank you so much to cure LGMD 2 I and Bridge Bio for sponsoring
34:57
this podcast. Your support means the world to
35:00
me. If you guys could like this
35:02
video if you're watching on YouTube and subscribe and follow
35:05
the podcast on your favourite podcast platform and it five
35:08
stars, that would really mean the world to me.
35:11
And I will speak to you guys very soon in another episode,
35:14
but until then, bye.