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FROM DARKNESS TO ADVOCACY: SHARING MY UNTOLD FEELINGS OF HAVING AN OSTOMY THAT HELPED ME GROW AS AN ADVOCATE 8-12-25 · OneLegUpAlex Media

• 0:00
  Speaker 1: Here's your host, Alex Garrett. Well, this one is gonna
• 0:08
  Speaker 1: be a bit of a darker episode. By the way,
• 0:10
  Speaker 1: I cannot wait to hear how today's PC and GA
• 0:14
  Speaker 1: Viscardi Center collaboration went.
• 0:17
  Speaker 2: As you might know, I posted a story.
• 0:21
  Speaker 1: On my one Leg Up Alex dot com developing the
• 0:25
  Speaker 1: conversation I have with John Cassano and Orlando Molinaris and Donopulglici.
• 0:30
  Speaker 2: Last week.
• 0:31
  Speaker 1: I developed that even further on my blog One Leg
• 0:33
  Speaker 1: Up Alex dot com.
• 0:35
  Speaker 2: So check that out.
• 0:38
  Speaker 1: But the connection to the UOAA, and I've never really
• 0:43
  Speaker 1: shared this before, and I'm a little nervous too, because you're.
• 0:46
  Speaker 2: Gonna be like, oh my god, what, Oh my god, what. Well,
• 0:55
  Speaker 2: there were times when my Soma my bag leaks were.
• 1:01
  Speaker 1: So bad, I mean embarrassingly bad. We're talking leaking at
• 1:07
  Speaker 1: the Yankee Stadium lobby bad. We're talking Viscardi Center Medical Suite,
• 1:15
  Speaker 1: major emergency bad. We're talking right here at Salor Media.
• 1:19
  Speaker 1: Even on my twelve year anniversary, I could I could
• 1:22
  Speaker 1: share this. My bag kind of exploded in five dimensions
• 1:26
  Speaker 1: here and we had to clean it up, well, the
• 1:32
  Speaker 1: very patient cleaning staff did. But I find the alliance
• 1:40
  Speaker 1: with the EA, the embracing of the colostomy very intriguing.
• 1:48
  Speaker 2: And sometimes I get these idea thoughts in the shower.
• 1:53
  Speaker 2: Maybe it's because I'm looking at this time. I'm sorry
• 1:54
  Speaker 2: to be graphic, but I do. I have to. It's
• 1:56
  Speaker 2: how I go to the bathroom. I go to the bathroom.
• 2:02
  Speaker 1: But when I was in sixth grade, I was so
• 2:09
  Speaker 1: frustrated by the stoma itself, by the smells, the leaks,
• 2:17
  Speaker 1: not so much the pain, God blessed, I've never felt
• 2:20
  Speaker 1: pain with the stoma. It's really amazing, actually, But the hygiene.
• 2:27
  Speaker 2: And then the.
• 2:31
  Speaker 1: Not the picking on, but the observations, and I would say,
• 2:35
  Speaker 1: the encouragement to go change the bag from my friends
• 2:38
  Speaker 1: of Ascardi. It got me frustrated to the point where
• 2:46
  Speaker 1: I wanted to cut off the soma.
• 2:48
  Speaker 2: I didn't want to deal with it anymore.
• 2:50
  Speaker 1: And it's very daunting to admit that I wanted to
• 2:52
  Speaker 1: cut off my own damn stoma, but I did. But
• 2:59
  Speaker 1: of course I never did be because I felt like
• 3:00
  Speaker 1: why would I do that? But I wonder if that's
• 3:06
  Speaker 1: a dark thought for those who are adapting to stoma's
• 3:08
  Speaker 1: or have had it there all life too, because.
• 3:15
  Speaker 2: As my friend Ashally said, we all have our dark.
• 3:17
  Speaker 1: Moments, and you know I've turned that around and turn
• 3:23
  Speaker 1: that early pain around. Sometimes make jokes about it, but
• 3:31
  Speaker 1: mainly I get up in the morning and I change
• 3:39
  Speaker 1: the bag. Yeah, I changed the stone to make sure
• 3:44
  Speaker 1: the ostome is clear. I do whatever I can, even
• 3:47
  Speaker 1: if there's an inkling of a doubt it'll last through
• 3:49
  Speaker 1: the day. And as I told my friend Ashley, who
• 3:52
  Speaker 1: is a fellow ostemate, I said, I think we got
• 4:00
  Speaker 1: I think I gotta lay lean into this.
• 4:05
  Speaker 2: And then.
• 4:11
  Speaker 1: And as my fellow friend and as Ashley Mann and
• 4:14
  Speaker 1: I were talking about how energized changing the bag actually
• 4:18
  Speaker 1: does give energy, It gives a self dignity, it gives
• 4:23
  Speaker 1: a purpose already for the day, she called it a superpower.
• 4:29
  Speaker 1: It's like a superpower we got, and you too, if
• 4:33
  Speaker 1: you have an astomy and are unaware of the U
• 4:36
  Speaker 1: A way a way, can also have that superpower.
• 4:42
  Speaker 2: But I tear up a little.
• 4:43
  Speaker 1: Bit talking about this because it is it is painful
• 4:45
  Speaker 1: to think about that. I wanted to do away with
• 4:49
  Speaker 1: the stoma because I was so frustrated with it and
• 4:51
  Speaker 1: so frustrated.
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  Speaker 2: That the bag kept breaking.
• 4:54
  Speaker 1: But maybe that was my breaking point in sixth grade
• 4:57
  Speaker 1: when I started to realize, all right, I'm gonna embrace
• 4:59
  Speaker 1: this shit.
• 5:02
  Speaker 2: I'm gonna embrace this shit, and I'm gonna work on being.
• 5:11
  Speaker 1: More dignified with it, cleaning it up, not letting it
• 5:15
  Speaker 1: stink up a joint, and be dignified.
• 5:22
  Speaker 2: Instead of what was me? Why do I have this bag?
• 5:24
  Speaker 2: It became all right, it's part of me. We know this.
• 5:30
  Speaker 2: I'm ready.
• 5:34
  Speaker 1: To face the day now because I have a clean
• 5:39
  Speaker 1: bag in toel. I don't know why I want this
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  Speaker 1: on record for eternity, but I do that. I had
• 5:50
  Speaker 1: that dark moment where I wanted to off my stoma,
• 5:53
  Speaker 1: cut it off.
• 5:55
  Speaker 2: I shivered to think about it now and look at
• 5:58
  Speaker 2: it now.
• 6:01
  Speaker 1: We've made it part of the podcast family through UOA coverage,
• 6:12
  Speaker 1: and more importantly, we're taking that dark moment well at
• 6:16
  Speaker 1: least I am, I guess, and turn into advocating for
• 6:19
  Speaker 1: those who may not be able to get the supplies
• 6:21
  Speaker 1: they need. The UOA helps those get supplies needed, and
• 6:25
  Speaker 1: I love that.
• 6:27
  Speaker 2: And they need to be praised even more for that.
• 6:32
  Speaker 1: So not only am I fortunate to still have this soma,
• 6:34
  Speaker 1: that it's functioning, that it's healthy, but that we can
• 6:39
  Speaker 1: have a voice to it and say hey, if you're
• 6:41
  Speaker 1: lacking supplies, if you need supplies right now, go to
• 6:44
  Speaker 1: UAA their website, and yes, take action as well. We
• 6:55
  Speaker 1: need everybody to have the right access to the medical supplies.
• 7:02
  Speaker 2: And if.
• 7:05
  Speaker 1: We're not there yet, we're gonna get there, one estimate
• 7:09
  Speaker 1: at a time. And I know those are allies of
• 7:20
  Speaker 1: those with ostomes and disabilities will support youoa A in
• 7:25
  Speaker 1: the United OSome Association and the one million Americans with ostome.
• 7:30
  Speaker 1: But writing that article about PS and G supporting UOAA
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  Speaker 1: inspire me to just open up and say, look, I've
• 7:37
  Speaker 1: had my issues with the stoma. I've had my trauma
• 7:42
  Speaker 1: with them, my sadness, but I go back to the
• 7:45
  Speaker 1: main fundamental thing about the stoma.
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  Speaker 2: It saved my frickin life. It saved my life and
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  Speaker 2: it saved millions of other lives.
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  Speaker 1: So whenever you think about the darkest feeling that you
• 8:01
  Speaker 1: have with your ostomy, live in it for a moment
• 8:08
  Speaker 1: if you need to, But then remember that stoma is
• 8:11
  Speaker 1: saving your life right now.
• 8:13
  Speaker 2: It's helping you have a route to keep living. And
• 8:18
  Speaker 2: that's another reason why I'm getting involved with the.
• 8:19
  Speaker 1: ASTHME especially anymore because we need to have the other
• 8:23
  Speaker 1: million estimates living just as well, one estimate at a time.
• 8:31
  Speaker 1: That's how we have one leg up for the OSME community.
• 8:34
  Speaker 1: If we could sport one estimated at a time from
• 8:38
  Speaker 1: darkness to advocacy and remembering that that little stoma or
• 8:46
  Speaker 1: iliosthmey or whatever you might have is saving your life
• 8:49
  Speaker 1: right now. And thanks to PSC and GLI for helping
• 8:53
  Speaker 1: the OA save lives by donating to the cause. And
• 9:01
  Speaker 1: we're hopefully gonna have more partnerships to talk about on
• 9:04
  Speaker 1: UH for World Ostemy Day, which is in October, we'll
• 9:07
  Speaker 1: get more info on that and stay further involved. But
• 9:11
  Speaker 1: I've had my dark moments, I've had my embarrassing moments,
• 9:16
  Speaker 1: but I never lost faith in one thing. The stoma
• 9:22
  Speaker 1: adapt helped me adapt, and not only that, it saved
• 9:27
  Speaker 1: my life. I am here right now because of it,
• 9:35
  Speaker 1: and so I'll gladly change that bag whenever I feel
• 9:39
  Speaker 1: the need. If this is gonna help me live even
• 9:43
  Speaker 1: another day on this planet and help us all have
• 9:50
  Speaker 1: one leg up for each other in the ASTOME community.