This is the “I Was a Wheelchair Kid” podcast. It's true stories of people who grew up using wheelchairs after being paralyzed and how they figured out their lives.  

I'm your host, Pete Anziano. And I've been using a wheelchair myself for almost 20 years. Although I wasn't injured as a child. I've spent those 20 years in a job where I help people of all ages adjust to living with paralysis. And I have learned that being injured as a kid brings a whole different set of problems. 

These podcasts are the personal stories about how kids went about finding their own solutions as Children. They're adults now, but their childhood memories are powerful. 

In this episode, Annie tells her story. She's a grown woman now, but her story begins when she was 12 years old and just about to return to school after summer vacation.

The night before seventh grade started, I had a backache. And so, I had like laid out my clothes for the first day of school and, you know, I'd been like swimming and playing outside all day, enjoying the end of summer, but I had a backache. And then my feet started getting these like pins and needles, like when your hand falls asleep or something that pins and needles feeling. And it just like kept coming up and I said something's wrong call 911. And so, they did.

Annie had a very rare spinal stroke. It left her paralyzed from the chest down with no feeling or ability to move her lower body. 

I was in the hospital for 68 days and my parents, I have my mom and dad were divorced and both remarried. So, I have four parents, and they all took shifts. So, the entire time I was in the hospital, at least one of them was with me, which was a double-edged sword, right? Because that's awesome that you have a family support and everything. But also, you're 12 and don't want to be around your parents 24/7. So, they would take turns like spending the night. I got out on October 30th, I think, and I went trick or treating on October 31st dressed as an angel because I had a halo already. 

Annie's halo was actually a light metal ring which was attached to her skull after spinal surgery to keep her from moving her head while her bones were healing. It did make her look like an angel which wasn't hard. Annie was a pretty child.

And then I went to school on Monday the first or second or whatever day that was with my halo, I think it was novel. They (kids) weren't hateful about it. They were just curious about it and like everybody wanted to push the wheelchair. And so, for the most part, people were really kind. The middle school that I went back to was already a pretty new school building. So, it was already wheelchair accessible, which was great. So, it was about as smooth a transition as you could hope for. 

I wasn't one of the popular kids. I was like, people knew who I was because I was the only girl in the wheelchair. So, there was like a notoriety about it, I guess. But it wasn't like I was the cool girl everybody wanted to hang out with.

From the beginning Annie had a very realistic attitude about her injury. It wasn't going to change her, and it wasn't going to stop her.

I don't know what alternative do you have other than like accepting it and moving on? There was nothing to change. The only thing to change was to adapt to the new circumstances. We couldn't change the circumstances, only how we respond to them. 

My parents definitely made it a priority to raise me to be independent. They never let me get away with anything. When I learned how to get in the shower. I was like, “mom, I'm ready to get in the shower.” and she was like, “I can't help you right now.” And I was like, “well then I don't need your help. I'll just do it.”  And then I did it, which was a good thing that I needed to learn. 

I was just lucky that they never let me kind of sit at home alone with a blanket on my lap. Just thinking I couldn't do things. 

I remember being angry and frustrated. I would hit my legs. Like, if I was having trouble like transferring or something, I would like punch my thighs and if my mom saw me, she would always be like, “stop. I love those legs. Don't hit those legs.” But I never thought like, oh, I'm never gonna fall in love or be a mom or not have a job or whatever. I mean, the circumstances had changed, but the end goals didn't change. The end goals were always to be a happy, healthy, independent person, which is all you can hope for really for your kids. To be a mom, to have a partner, to be a contributing member of society. 

But yeah, I never doubted that. Like, I was still going to go to college. The building blocks were all the same, but they're just arranged differently. 

I do my best to live in the moment and I have a pretty good sense of what I'm in charge of and what I'm not in charge of. And I try not to waste energy. And I've always been that way. 

Annie didn't have trouble navigating middle school in her wheelchair, but her high school was a different story.

When I first had my stroke and went back to 7th and 8th grade in the middle school. It was a newer building. So, it was already, it had been built like after 1991. It was as accessible as could be for 1998. But the high school was a really old building. They had like a really old lift that broke all the time. I had to go outside to get from like one hallway to another hallway at a different part of the building. They had to renovate a handicap accessible bathroom for me. They had steps everywhere. It, some parts I had to go like outside to get from one wing to another. There wasn't even like a viable inside route one lift that was really, really old that would break all the time and then I'd get in trouble because I would just have like football players carry me up and down the stairs. 

Teenagers often feel awkward when they encounter someone who's using a wheelchair. They don't know how to act or what to say. Annie discovered her own solution to that problem. 

I think the best thing that you can do when you're like new to a wheelchair is have a service dog. They're the best icebreaker because everybody knows what to say to a dog. If they don't know what to say to the girl in the wheelchair, they know what to say to the girl in the wheelchair's dog. And everybody loves the dog. And if somebody's looking for a way to approach you, whether they want to talk about the dog or not, it's an easy in for them regarding dating. 

Annie believes that honesty from the beginning is the best policy.

I think, like in dating in general, people should be really upfront about like, whatever it is that you need or whatever you think might be an issue because if you know, it's gonna come up at some point and you're worried about it already, like, just throw it out there and get it off your chest. And no, if they're not interested, then that's fine. They're allowed to not be interested. But you also don't need to waste your time hoping that when that situation finally comes up, it's gonna be ok. 

I wear Depends like every day, and I've never once dated anybody and taken my pants off and somebody's been like, “oh God, you're in Depends?” Like, you just have to own it, whatever it is for you, and be honest about it and not try to like hide it or push it off. And like, hope for the best when it comes down the pike because like, you know, it's coming.

I think usually I would just ask a person if they had any questions for me because it's important that they can ask questions and get answers. So, they're not left like wondering because that's not helpful for either of you? Like, what can you feel? What can you not feel? How do you go to the bathroom? How do you drive? 

I probably start off pretty clinical and just be like, I'm a T-3 paraplegic. And what that means is, I don't have any movement or sensation from like my boobs down. And then when people think paralysis, I think they only think like, you just can't move stuff they don't think about. Like you have issues with spasticity. You don't have bladder or bowel control necessarily. It's just hard to keep like track of things that you can't feel - like your feet. I think you have to be really confident and comfortable in yourself. First and foremost, you already know all the answers to their questions, whatever their questions are. And I think it's important if it's somebody you're dating that you can have open and honest conversations about that stuff or if you're dwelling on it and it makes you anxious because you don't know how this person's gonna respond. Like all the more reason to just get it out in the open so that if they do have a problem, they can leave. 

Now with online dating. Annie warns it's important to avoid para-devotees. People who are attracted to people with disabilities.

I think one thing you have to be careful about as a person in a wheelchair, especially a young woman in a wheelchair, are para-devotees. If somebody approaches you and they're only asking about your disability or they want photos of your feet because you don't use them, just be mindful. You don't wanna hang out with somebody who's only interested in your wheelchair any more than you wanna hang out with, you know, somebody who's only interested in you because you're pretty or for one facet of your personality. 

After years of struggle with her high school environment, Annie picked a college that was truly accessible.

After high school, I went to Wright State University in Dayton, Ohio. Wright State is one of the most handicap accessible schools in the country. So even like all of the buildings, once you're on campus, all of the buildings are attached by tunnels underground. So, if the weather is bad, you don't have to go out in the weather. So, it was actually a really nice steppingstone into the real world because I was independent and living by myself in a dorm room, but it was a handicap accessible dorm room. And the campus where I spent the vast majority of my time was all really, really, really handicap accessible. So, it was a nice like steppingstone into real life. 

Annie got a degree in film history, was awarded a scholarship to the Library of Congress, interned at a cable movie channel, and became a highly successful location coordinator for major motion pictures. Annie loves her work and her young daughter. And how does she see herself these days? 

I'm very lucky that I have four parents who not only made it a priority to raise me to be independent, but never limited me in any sense. It was never like you can't do that. It was always, how are you going to do that? And that's a huge difference. You just focus on the how.

I think I'm definitely Miss Independent. 

 This episode was produced by Thea Flaum, Stephanie Lollino, and Anne Hambleton directed and edited by Dan Lombardi, music by Kayman Klaas. And I'm your host, Pete Anziano. 

“I Was a Wheelchair Kid” is a joint project of Facingdisability.com and the Shirley Ryan Ability Lab. It's funded in part by a grant from the National Institute on Disability Independent Living and Rehabilitation Research grant. Directors are Dr. Alan Heinemann and Dr. David Chen. You can find more “I Was a Wheelchair Kid” stories on Facingdisability.com/podcasts and on Apple Spotify, YouTube or wherever you get your podcasts."