Tracy DiNunzio
speaker
440 appearances
5 recordings
1 series
first heard Dec 2024
last heard Dec 2024
Tracy DiNunzio’s voice in public audio — every appearance, attributed to the second.
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tough thing to be born with. Around the time that I was born, there were some surgeries developed and interventions developed that would help people live into adulthood and maybe get some mobility. And since then, there have been a lot of advances. So today, a lot fewer babies are born with it.
Those who are have a lot of options for surgery in utero, interventions and surgeries all through childhood that are much better than when I was young. But for me and the other people of my
generation who have spina bifida were medical mysteries in a way because nobody ever did research on adults with spina bifida so every doctor I go to has never seen an adult with spina bifida so I have to be my own doctor and I always was like even when I was a kid eight or nine years old I used to go to the public library after school and read medical journals on microfiche and
try to understand what my doctors were saying and what the decisions were because it was all like a mystery. So yeah, it's serious. And I mostly think I've just been lucky. But I have also worked really hard to train myself to walk and to try to keep a really positive mental outlook because that's a big part of dealing with it too.
Yeah, I'm involved with a few different groups trying to get research done, trying to create community for people who have spina bifida. And even now I'm getting involved in things beyond spina bifida, just understanding that there are so many under-researched medical conditions where people are living with difficulty that can maybe be solved with technology.
And that's just like the entrepreneur in me. I want to use AI and understand what little data exists to help improve life. Life for everybody. I have gotten involved in the community.
It's like you are generally neurologically compromised because there's a mechanical issue at the part of the spine that's affected. So different people who have spina bifida have different systems affected because it depends at what level of your spine the defect or deformity or... It's a hole, right? It's a hole.
And you have to one thing my mom taught me growing up being out of the hospital is you have to laugh, right? You have to laugh. So we joke all the time. Oh, sorry, I'll be right there. It's just the hole in my spine is acting up. And I have another friend who will go on a really slow hike because I can only hike pretty slowly. And he'll just look at me and be like, why are you still faking it?
And yeah, it affects primarily your neurology. So for me, it's like my calves and my feet and certain muscles in my hips don't get nerve signal. So the muscles in those areas are really atrophied and weak and I can't feel my feet at all. So I walk using my eyes and my ears to balance.
So if you ever want to like mess with me, you can just turn the lights off or play a really loud noise and it'll completely throw my balance off.
having to think about they don't most of the time I'm very happy with my life I feel like I cheated a bunch of worse potential outcomes and got to live a very full life and still get to but every now and then I look around and I'm like man everybody should just stop and be really grateful for how you can just walk around and not think about it
I mean, when you're young, your brain is such a sponge, right? And most people set their minds to learning whatever you're learning in school. And I just set my mind to learning like medical research and things like that. So I really got to flex those muscles. And I was like a voracious reader. So I think I have an ability to learn quickly.
When I'm interested in something, I get a huge appetite for information and can process and digest a lot of it, which came in really handy.
Yeah, so... When I started my company, I made a very clear effort to hide the fact that I had a disability. I was very obsessed with, it was really important to me that nobody would see that anything was wrong with me. Why? Because part of what I needed to do to be successful was raise a lot of capital from investors and hire the best possible employees and appeal to customers.
It was a fashion company. And I didn't see anybody with a physical disability able to do... I can't say I didn't see anybody, but it just seemed to me like... You certainly didn't see a woman. Right. I was already a woman without a business background. And now what? I'm going to march into the top venture capitalist's office and have an obvious physical disability?
Like, it didn't seem like anybody would give me money or follow me in terms of wanting to join the company and take equity and believe in our future. if they thought I had anything slowing me down or distracting me.
And so I used to like go on TV to promote the business and I would tape chicken cutlet boob things to my legs because my legs are really skinny from the atrophy, but I wanted the shape to look correct to the cameras. And yeah, I tried really hard. If I really focused, I could not limp at all. So I worked really hard to make sure nobody saw it.
And then I worked too hard, not just at that, but at everything. I was working seven days a week, 24-7. I overworked myself. I got really stressed out. My health got bad. And part of that was that I was not walking as well, and I had to use a cane for a while. And so that was maybe 2019. I started having to tell people that I had something going on. And I thought the world would end.
I panicked about this and I stayed up late nights and I thought about hiring a CEO to replace me because I really had made it in my mind. People would judge me and be disappointed in me and no longer have faith in me. And it was the opposite. I felt like my team and my investors were like, wow. We want to follow you even more. You're like a real human being and we believe in you even more.
But also it was no big deal. It was like I had made it in my head like the whole world was going to care. And the number one rule of life is like nobody actually cares about you that much. People were just like, oh, wow. That's wild. Sorry to hear. Moving on with my life.
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