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 these 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. They tell us a lot about how kids in wheelchairs can make a future for themselves. 

In this episode, Jorge tells his story. He's a grown man now, but he was injured when he was only nine years old. Afterward, what he wanted most was to find a way to return to normal. 

His story is about discovering a way to do that, to find normal. Here's how it began. 

I was nine years old when my injury happened. I was with my family at a friend's house and all my little buddies were there and someone found a gun and they decided they grabbed it, they picked it up, they're toying with it, and they brought it out to the living room. “Look what I have.”

Our parents don't notice this…and just toying with a gun and, uh, we're playing with it and, you know, we're irresponsible. We're not smart kids at nine years old. And, uh, I decided I'm just gonna walk away and, and as I walked away, they still kept wrestling with the gun and it accidentally fired off. (Bang sound effect)

My mom was there and, she just picked me up and brought me to the hospital. When I got to the hospital, I woke up, with tubes in my nose, everything. And I tried sitting up and since my injury levels at a T-7 level, I don't have the core to sit up on my own. So, I I felt like I was being held down. I didn't know what was going on. I didn't know if my legs were gone. I couldn't feel anything. So, I just started screaming.  

I was panicking. I was freaking out. Some little girl next to me - her name is Francis - I still remember her name. She's telling me, “shut up, calm down!” you know. A little girl is telling me to calm down and, I'm just screaming and freaking out and, my mom rushes in and she's calming me down. 

But that's when I started realizing that my body is not the same, something's wrong. Something's wrong in the hospital. I knew the minute I woke up I didn't have to see a wheelchair. I didn't have to see my legs not moving. I knew something was wrong. At that point it's a physical feeling you don't recognize. And, and at nine years old I didn't know how to react. And I think that's the hardest part that it was just, I didn't know what to do, how to react, how to feel. And even though my mom who's my safe haven is next to me and trying to comfort me, it's not working, it's just not working. I mean, I'm calming down, but the reality is that there's something going on with my body and I don't know what's going on. 

I didn't know I got shot. It's like somebody just taking you from your comfort of your bed and just placing you in the woods and you just wake up to a bear next to you! What do you do? You know what do you do? And that's, that's where I was. 

So that's how I felt at that moment at that moment. So, yeah, when I was in the hospital, I was in, in the acute care and back then you were in rehab for 2 months at a time, 2-3 months being in the hospital during my rehab, I kind of adjusted a little bit in there to what was going on. And the nurses, the patients, the doctors, they all gave me the sense of comfort, you know, that everything's gonna be ok. And, and yeah, the hospital was my safe haven and then it was time to go home. 

So, Jorge found a way to adjust to his injury while he was in the hospital and a way to feel kind of normal. But when it came time for Jorge to go home, it was a different story. He discovered he was facing a whole new world.

And wow, that was a reality check because I go home to, to a whole different environment that I am not used to. Just my neighborhood alone, scared the pants off of me because all my friends walk, you know? All my friends walk. I played freeze tag. I played kick the can. I played hide-and-go-seek and, and now those games are still being played without me. You know, I can't hide with my chair. I can't run up and down the porch. I can't even get out of the house with somebody helping me. 

So, the adjustment of interacting with my friends was pretty scary because now I started feeling a little, a little isolated. I felt safest at the hospital because the normalcy was there. You know, other persons with disabilities were at the hospital, people that were going through the same thing I was were there and I felt comfortable there. I literally wanted to go back to the hospital when I was a kid. I wanted to feel that, that sense of normality. Again, back at the hospital, they're the ones that made me feel normal with this scary new body that I have. 

When I got to my neighborhood with my friends. I felt so odd. I felt so uncomfortable. I felt like I didn't belong. And, and it's funny because my friends, they adjusted to me more than I was adjusting to me. So, they found ways of how to play these games, whether it's guidance through their parents or whatever or on their own, they're figuring it out, you know, they're figuring out well, Jorge can't run that fast. So, we gotta change the rules a little bit. I didn't, I didn't wanna come in there and start changing rules and accommodating people to me. I, I'm trying to just fit back in, you know, and I'm hoping they embraced me and, and shockingly they did. 

My friends were the, the key component of me adjusting to my disability in the beginnings of my injury. It was they who, who actually nursed me back to being a kid again. They were doing what they had to do to get me back in with their circle. And that's what helped me out a lot when my injury happened. 

I was scared, I'm not going to lie about it. I was scared and they're the reason why I was less scared as the days were going by. 

It turns out Jorge's friends in the neighborhood helped him find a way to feel normal. He was lucky. Not all friends are as accepting of a kid in a wheelchair as Jorge's were later. It turned out that the acceptance of his neighborhood friends was only the beginning ahead was a new school with lots of kids he didn't know before.

I ended up going to a school for persons with disabilities. And everybody there had a disability and I kind of felt like, ok, well, this is the environment, this is where I'm thinking this is where I belong, you know, I belong in this environmental persons with disabilities. So I can feel normal, you know, but with or without a disability, I'm just scared of new kids. I can't wait to get back home. And finally think about it when I got discharged from the hospital, I wanted to go back to the hospital to feel normal. But here I am now at a school for persons with disabilities and I wasn't feeling normal because it's a new school. I wanna go back to my neighborhood with my guys, my friends. 

So, in time, Jorge got used to the new school, but he continued to deal with a problem that nagged at him every day. Jorge felt guilty, guilty about the extra burdens he was putting on his family.

I really did feel this huge burden on my family because we were undocumented in this country until the age of 18. So, we had no medical assistance. So, my dad had doctor bills of $140,000 and he was making $5 a month payments. My father is a factory worker. So, my father's working overtime to buy me a wheelchair. My mom had to start cleaning rooms. My brother, after he greets me from school, getting off the bus, he has to pull me up the stairs and then he's got to run to the grocery store to bag groceries just to make ends meet. So even though they never made me feel like I was a burden. Oh, I felt it. 

So, when the day came, when we did fix our residency, our legal documentation, I went to public aid and they said bring us all your doctor bills and we'll see what we can do. (whispers) And they wiped it out - they wiped it out!

And my father worked less hours and my mom spent more time at home and, and my brother could finally be a high school kid and doesn't have to bag groceries. And that's when I knew that things were getting better. 

Finally, some relief for the family. But as it turned out, high school would bring on other challenges for Jorge. The teenage years are a time when everybody feels uncomfortable at some point. But for kids like Jorge, it can be more than just discomfort.

Deep down inside, in high school is when it first hit me, a sense of insecurity. A sense of like just the word, insecure. I've always been a fun kid. I've always been a social person. I've always been the, the class clown. I wasn’t school savvy. I had poor study skills, but I was very confident in my skin because that's what I had to do to, to win the, the respect, the attention of my peers, my friends. 

OK. That's the important thing for me in high school. It wasn't my studies; it was lunch, gym, and girls. That is it. And I had no problem connecting and talking to girls. I had no problems even dating. 

When I had a problem was the intimate part of that, and the sexual part of that, because I have erectile dysfunction. So, I couldn't get the erection. I didn't, I didn't know if I was gonna be able to have, you know, intercourse have sex with these girls. So even though I dated, and girls wanted to back in high school, they wanted to move fast. I didn't want to because I just couldn't, there wasn't anything to, to, to give me that boost - erection. And without that, I felt no confidence, but I never let it be seen. But that was something II I harbored inside, and I really started seeing that maybe the type of an intimate relation that I think is normal is not gonna happen. 

So, I had a lot of - a lot of insecurities because of that. I didn't feel sexy. I knew I was funny, and I was pretty good looking guy, but I wasn't sexy. I didn't feel sexy, and I didn't have problems dating. I just couldn't get to that. What some may call third base. So, what I ended up thinking this is as good as it gets until I met my best friend today, Earl Jordan. And I don't mean just a kid with a disability, a kid with a lifestyle. 

Earl Jordan went to Whitney Young, and he was in a - we called it the normal school, the able-bodied school. He was with able-bodied kids, and I was at just a couple blocks away the school for persons with disabilities. So, I'm thinking he's gonna like frown upon me or something like that. But no, not at all. Not at all. We started hanging out. I went to his neighborhood; I saw a piece of his world and his confidence. I've never met anybody like that. I would have to remind him that he's in a wheelchair. You know, every time I talk to him or see him interact with anybody or anything, including girls, I never saw his wheelchair. I couldn't see it. And every time I talk with girls and people, I see my wheelchair, you know, and I would always see it as, as a flaw. And no, no, not Earl. He started talking to me about intimacy. He had the same issue, but there's other ways to approach it. There's other ways of looking at it and the girls will still love you. 

What I thought was normal now changed. And I'll tell you this. Let me give you an experience. I'm dating this girl. This is, this is so amazing. This moment. My girlfriend looks to me and she tells me she loves me. Right? And I go, yeah, you probably don't even see my wheelchair and, and hear me out, she goes, “I see it every day. I see it every day. I see it when we're together. I see it when we're holding hands, I touch it when we're kissing. And I think it's the sexiest part about you.” That's when it hits, you know, my perspective changes here. I am trying to not picture the wheelchair, trying to omit the chair from perspective, from life, from conversation. Let's not even talk about it. Let's not look at it. You know, and, and then we'll, when we get to that point, we are normal. Not at all. 

If you can look at a person with a disability, if I, if I can look at you in a wheelchair and still value you - wheelchair and all  - you've reached it, you've reached comfort. It's a tough road to get here to be able to embrace your wheelchair that way. Come on. You know, and once you do it is so liberating it really is. 

Today, Jorge is very involved in wheelchair sports, especially baseball. He is a mentor, a father and has a successful career in the medical industry. He is busy all the time and he says he stopped worrying about finding normal years ago. 

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."