OneLegUpAlex Talks Adapting To An Ostomy 34 Years Ago 10-5-25

To support the UOAA as referenced on OneLegUpAlex, pls visit https://www.ostomy.org/

Episode Transcript

Speaker 1 (00:00):
All right, Well, we all know the Yanks crap the
bed today, and that's a very fitting toun because it
is OSAME Awareness Day. And that's where I feel like
the silver lining of today is is that even though
the Yanks lost in horrible fashion, I can sit here
and say I'm able to talk about it because of

(00:21):
the story that almost thirty four years ago doctors made
the bold decision to put that osteme on me. Look,
I just shared the Queen's College Secrets thing, but I've
taken that awareness to Washington this year. And as I
sit here, we are in a shutdown again, and I

(00:42):
feel like we've gone through this month after months since
that Washington trip in March. But the fact that organizations
like the United OSME Association of America, the United OSME
Association of America, and the Digestive Disease not to No
coalition exists give me hope that we can run above
these shutdowns and continue to fight for the funding that

(01:04):
has deserved and the accessibility that deserved for people who
may not be able to get their medical supplies in
the right way or the proper way. But personally, I
had never wanted to really lean into the ostome because

(01:26):
you know you can't see it. God forgive me for
saying sometimes you can smell it. It's awful, But that
was his plan, and that is why I'm here today.
An addition of all the support of my mom my dad,
who thirty four years ago had to truly adapt with

(01:50):
me to these ostomy supplies, I'm here because of it,
and there's no doubt about it. So to be accepted
by the UAA, to be advocate on their behalf. Going
from that Queen's College Secrets page to Washington, DC in
twenty twenty five, it's a jump. It's a jump worth doing,

(02:12):
and I'm proud that I was able to be there.
But I'm also grateful to be accepted by the ostuemic
community because I don't often think about it as something
to fight for, but being in DC open my eyes
to the Yes, I'm able to and thankfully able to

(02:35):
get my supplies, but there are millions out there that
may not be able to. So why not fight for
those who aren't able to have that accessibility? Why not
make it more accessible? Why not bring more awareness to
the osteme community, the one million of us. And then
I listen to Anthony Gerdono his story at the golf

(02:57):
outing in June, and it does give me hope that
as I get older, this can sustain. I often wonder,
you know, how long is it all gonna stay together
for this Austin how many years? While Anthony and a
few others give me hope it can last for a

(03:17):
long time. And that is the importance of community and
what I've realized in twenty twenty five. Last year I
was simply just an ambassador, thankfully thanks of Janine Gliba.
But this year I felt like I was in it
to be an advocate and to share my I don't

(03:40):
know if it's dramatic call that testimony, but my testimony
that if the doctors didn't do this procedure almost thirty
four years ago, I don't know if I would be
here talking to you about this vital medical phenomenon known

(04:02):
as the colostomy, iliostomy and the ostomy. So here at
one leg of Alex adapts to the one million plus
that have an ostemey. Today, Happy OSME Awareness Day, and
we won't keep bringing awareness, not just on October fourth,
but every day that there are stories, there are threats

(04:23):
to the supplies and the coverage of supplies. We will
be there to cover it on one leg of Alex
because I've got an interest in it to say, well,
if God blessed me with the right supplies thirty four
years ago, why not pass it on to so many
others that need the support, that need the funding. Because yeah,

(04:46):
Washington may be shut down now, but the fight should
not be shut down. They should not discourage us from
continuing to fight for accessibility and push for it and
do those forums every spring, every fall, because not only
are you advocating with those in Senator Booker's office, Senator

(05:08):
Shower's office like we were, you're also building the connections
in the community and finding out you're not alone in
this and you can adapt because here one legal alex
a reminder is we're always adapting. So happy United Ostomey
Awareness Day. And may that awareness become accessibility driven. For

(05:35):
those in power and in leadership. May they hear us
and say, yes, we understand you, not just when the
government's open, but even when shutdowns happen and the threats
of all this funding happens because of the shutdown. As

(05:56):
my friend Daniel Morgan can attest, we've got to think
that We can overcome that shutdown every time because the
voices of the millions will be the majority, and that
majority is us, we the people, not we the government.

(06:23):
So don't get discouraged this government shut down. This asks
me where to stay, cause there are organizations like the
UA fighting for you.