Life to the Max Podcast

Life Beyond the LTV: Two Ventilator Users Share Their Journey

• The QuadFather

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0:00 | 7:19

Chance encounters can create the most powerful connections. When the Quadfather met Sabeeh at the Abilities Expo in Schaumburg, their shared experience as ventilator users instantly created a bond that transcends the typical podcast conversation.

"We've got stories to tell," says the Quadfather early in their exchange—and indeed they do. Sabeeh, at 35, reveals her lifelong journey with a rare genetic condition called PAX7 gene, a form of congenital myopathy that has required ventilator support since she was just three years old. Meanwhile, the Quadfather shares his own path to ventilator use following a military car accident nearly a decade ago. Despite these different origins, they discover immediate common ground in using the same LTV ventilator model, both expressing the same fear about switching to newer technology.

What makes this conversation remarkable isn't just their medical similarities but the glimpse into everyday life as ventilator users. From the practical challenges of attending a Taylor Swift concert (complete with portable generators for medical equipment) to finding joy through online shopping during difficult days, Sabeeh and the Quadfather demonstrate that disability is just one facet of their full, complex lives. Their casual mention of Sabeeh's memorable meeting with Taylor Swift reminds listeners that behind every medical device is a person with passions, interests, and remarkable experiences.

The genuine warmth and instant connection between these two strangers-turned-friends serves as a powerful reminder of why representation matters. When Sabeeh says "your strength really gravitates towards me," it highlights how seeing ourselves reflected in others can validate our experiences and inspire resilience.

Like, comment, and subscribe to help amplify disabled voices that deserve to be heard, and as both hosts remind us at the end—take a breath for those who can't do so independently.

Introduction to Savi's Story

Speaker 1

Hey everybody, it's the Quadfather and welcome to this episode of the Abilities Expo Speedcast. Today I'm sitting down with a young lady named Savi who has a rare form of congenital myopathy and, like me, she's also on a ventilator. I know sometimes us event users can be really hard to understand for everybody who's listening, but trust me, we've got stories to tell. Everybody has a story. I hope you find Savisa's story as inspiring as I do, and everybody else that's been on the podcast. If you do, please share this video to help amplify disabled voices that deserve to be heard. Thanks, what's up, everybody? It's Life to the Max Podcast and we are live at the Abilities Expo in Schaumburg, illinois. It is Sunday, june 22nd, and today I have Zabie on the podcast with me. Zabie, how are you today? I'm good. How are you? I'm good as well. I see that we have the same ventilator.

Speaker 2

Yes, we both have the LTV and you know it's crazy because you don't see them very often anymore. They don't make parts for it. And it's, you know, one of the only ones on the market where we can still talk with her.

Speaker 1

But I know there's more.

Speaker 2

One other one out there now. That's a new one, but I'm afraid to switch.

Speaker 1

Me too.

Speaker 2

I've had this my whole life, pretty much I'm so terrified to switch Me too.

Speaker 1

I've had almost 10 years with this family.

Speaker 2

I think I've had this since it first came out Back when it was. I think I've had this since it first came out Back when it was. I think probably late, early 2000s. Early 2000s yes, and I think the first one was actually probably yeah, early 2000s, I think it was. It was a long time ago. How old are you, zuby? I'm 35.

Speaker 1

35? I'm 29. Oh, we're close yeah we're pretty close, yeah, so may I ask what type of disability you have?

Sharing Personal Disabilities

Speaker 2

So I have. I actually have a really rare condition which is called the PAX7 gene, which is basically a rare form of congenital myopathy.

Speaker 1

Okay, and what is congenital myopathy?

Speaker 2

So it, basically has to do with the muscles, kind of like it's basically a class in muscular dystrophy, but mine just affects the muscles where my muscles are. How about you?

Speaker 1

Me. I was in a car accident actually oh yeah. I was in a car accident. I was in the military At the time. This was almost 10 years ago and unfortunately my buddy fell asleep behind the wheel and I was a passenger.

Speaker 2

Oh, my goodness.

Speaker 1

Yeah, nothing compared to what you've gone through. You've been dealing with this for 20 plus years.

Speaker 2

Yeah, I've always been on a trach. I've had my trach in months, probably since I was three years old.

Speaker 1

Wow, I have mad respect for your strength.

Speaker 2

Thank you, yeah.

Speaker 1

So I see you have a great sister. We're supposed to be here with you, your family.

Speaker 2

Yeah, I'm with them. I came with my dad, and my nurse is with me too. This is your first time at the place. I actually have been several years, but it's my first time, probably in the last, probably in the last 10 years. It's been a long time Me too.

Speaker 1

Yeah, it's been since 2018.

Speaker 2

Yeah, I'm so happy we're here today.

Daily Life and Taylor Swift

Speaker 1

Yeah, it's, it's like great to meet you and like I want to let you know that like you're, you're straight, but like really gravitates towards me, so like really think about my life and say, oh, I'm not, I shouldn't be upset about this, I shouldn't be upset about that.

Speaker 2

I think everybody has, you know, different situations and stuff and everyone has a great different outlook. But in the end of the day, we're all here and we're all like grateful for, like the little things and I'm forever grateful for that and it makes us who we are so.

Speaker 1

So when you are, you obviously have down days. I have down days, yeah. What, um? I have down days, yeah. What do you do for fun? Do you try to distract yourself?

Speaker 2

So a lot of online shopping and I watch, you know, Netflix, Taylor Swift's the Heiress Tour. I'm a huge fan of Taylor Swift. I got to meet her back in 2018 on the Reputation Tour yeah, she was really sweet, and I met her mom as well.

Speaker 1

wow, and how was that like?

Speaker 2

oh it was. It was so cool. I was kind of really starstruck at the time so I was like shy, I got all shy, but she was really nice. I have a picture with her too. She's really sweet, and her mom was really sweet too. She thanked me for coming because she knew it was hard for us to get out there, you know, especially with our van, and actually you know there's no like outlets for us. We have our humidifiers and our wheelchairs, so I brought a portable generator and we plugged that in while I was at the show.

Speaker 1

That's what I do. I can't deal with the heat.

Speaker 2

I can't, I can't either. I get sick and we get so dry and we lose our voice.

Speaker 1

Well, thank you so much for coming on to the show.

Speaker 2

Thank you, I'm so happy, we got to meet.

Speaker 1

Yeah, is there anything you'd like to say to the people out there?

Speaker 2

they can follow me on instagram yeah, so my name is cb90 hopefully you get some follow ups. Thank you.

Closing Thoughts

Speaker 1

For everybody listening. If you like this content, please like comment and subscribe and, as always, take a breath for me. Take a breath for me as well. Thank you so much. My best to stay focused. I try to keep it cool. All you lames keep it bogus. I head on a swivel looking out for the locusts, trying to top my opponents.

Speaker 2

Am I the next best thing? But I think.