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, Molly tells her story. She was a confident, strong -minded,
athletic teenager enjoying a summer day at the beach when a sudden wave changed her life.

I was 15. It was the end of summer. I was about to start my sophomore year of
high school and I was injured diving into Lake Michigan. I was running to dive
underneath the wave as it was approaching and hit a sandbar or a shallow patch and was immediately paralyzed. There wasn't anyone swimming with me, so I was facedown but I couldn't turn over. So I held my breath until I passed out and one of our family friends who was maybe like 10 or 11 at the time found that I wasn't
breathing and when got my mom and the two of them came and pulled me out of the water, prepped my mouth open and then I coughed up a bunch of water and started breathing again. I think immediately afterward it was hard to get a sense of what exactly was happening. I was taken to a local hospital where I got my initial care and then they went to put me on a helicopter and my mom said can I come with and they said how much do you weigh and my mom is very small and these it's like these two huge guys flying the helicopter I'm like how much do you weigh well just leave one of you guys but anyways they said she couldn't come and I remember feeling a little bit scared about going into surgery, not having any family there. I had two surgeries and spent a week in the ICU. So I spent all in all, probably close to 100 days in the hospital. I just remember being focused on specific activities that I wanted to be able to learn to do. We were working on upper body dressing, feeding, things like that. So those are things that I knew that I wanted to be able to do on my own.

So, Instead of thinking about how her injury might change her life, Molly focused
on learning how to care for herself and on creating a plan for keeping up with her
schoolwork.

And I was really focused on keeping up with my classes. So I got hurt in late
July, school normally starts in late August and I didn't come back to school until
late October. So I had missed a lot of the of the first semester. Pretty early on
in the hospital I had figured out what classes I needed to take to get four years
of credit to graduate on time and those were English and math. So my high school
was great and they had two teachers who were willing to actually come to the city
twice a week to tutor me and so I had a geometry teacher and I had an English
teacher as well. So that when I came back in late October right before Halloween, I
basically sort of slotted right into those classes along with everyone else. And I
was able to sort of pick up like I hadn't missed any days at all. And then I did
summer school for the next two or three summers. So I think that combination of
things allowed me to graduate on time.

So Molly kept up with her school work while she was in rehab. At At the time,
Molly used her love for sports to approach rehab from a different angle. She saw it
more like sports practice than therapy. 

I had been an athlete before my injury. I put a ton of sports growing up, anything that I could be allowed to play. So in grade school I had done soccer, softball, volleyball. I put hockey on a boys team with my twin brother until I was in sixth grade. I did track and cross country, basketball, really anything. So working out with something I loved, sports for something I loved, being competitive, was absolutely my jam. 

And so rehab felt to me like something very familiar. And so I just approached physical therapy or occupational therapy rehab in general as a sort of practice. And I think that really helped me sort of figure out how to approach it and also how to make it entertaining, right? 
You always start setting goals and trying to beat them and coming up with like different challenges. And I think my physical and occupational
therapists sort of like saw that that's how I approach things and we're able to
sort of make the rehab environment as competitive as possible. You're only competing with yourself at this point, right? 

There is no like game or whatever that you're
training for and there's not other people to compete against I tried to come up with ways that I could compete with myself from my prior performance as a way to make that engaging and motivating and I think that worked really well for me.
When you go to a rehab hospital, you're in the hospital 24 hours a day and you
typically get one hour of physical therapy, one hour of occupational therapy. So the idea that I would be in a hospital for 24 hours and only work out for two, I
thought was like kind of ridiculous. It seemed like not nearly enough working out. I
was always trying to figure out ways that I could get more rehab. So I asked if,
you know, other people canceled if I could have their appointments, which they never gave me, but they did end up fitting me in group therapy classes on the adult floor. I would go up there every afternoon to do some rehab classes with the
adults. So usually ended up getting in four or five hours of rehab per day, which
to me seemed better than the initial two. And then my family, my family was great.
They would often come and help get me dressed and ready so that when physical
therapy started in the morning, I was ready to go. 'Cause a lot of times the
patient care texts were stretched thin and couldn't get you ready. and I didn't want
to miss any rehab. And so my parents always got there to make sure that I was
dressed, ready in my chair. Then the second the physical therapist was there, we
could get going. 'Cause that's the whole reason that you're in the rehab hospital to
do rehab. I think physical therapists, but especially physical therapists in a rehab hospital setting, really treat you like a patient. I feel like they have the kid gloves on.

Coaches aren't like that. I feel like coaches yell at you, everything's supposed to
be hard. The point is not to be comfortable and for it to be like manageable and
easy. The point is for it to be difficult and for you to like really work and be
challenged.

So turning rehab therapy into sports training was an approach that worked in the
hospital. But what about actually learning to her high school sports program.

I had run cross country in high school. And so the team actually had come down
to the hospital. And then when I got out of the hospital, my cross country coach
had raised money to buy me a hand bike so that I could hand bike with the team.
I would go to practice every day and I would hand bike. Initially I had separate
out from the team because I was so slow, but at some point I would do the same
workouts as the team. 

But I think the important thing for me was that my coach was
very clear that I wasn't a cheerleader, I wasn't a mascot, I wasn't an assistant
coach, that I was a team member, that I was an athlete and that he was gonna
treat me like everybody else. So to his credit I think he was just as frustrated
with me when I was late, he was disappointed with me when I and make the times he wanted. I think he was just as hard on me as everyone else. In some ways, it's
sort of like a sign of respect. Like he doesn't think I'm weak. He doesn't think
I'm less than anybody else. It's said a lot about how he viewed me and my place
on the team. Feeling like I was a full participant in that team and not a sort of
figurehead or like they're just including me to be nice was a really important part
of getting back to and things that I had always loved doing. We did a lot of team
dinners on Fridays, and they were like some people's houses, and people mostly don't live in accessible houses, and so we figured out pretty early on how to transfer me into a manual chair, how to carry me up the stairs.

- Molly figured out how to return to high school sports, but things at home were
not as easy. It's normal for ages to want independence and separation from their
parents. But Molly's mother was her caregiver, and that made it hard for them to do anything else together.

My mom was my primary caregiver, so when I left the hospital, I needed help with
almost everything. I could feed myself, I could get dressed from the waist up,
and I could brush my teeth and brush my hair, but I needed help transferring, I
needed help getting dressed from the waist down. I needed help using the bathroom, showering. I spent a ton of time with my mom, but it was all doing stuff that wasn't fun. It was her helping me use the bathroom, helping me shower, helping me get dressed. And there's no way to be good at that. You're never gonna be able to put on my socks as comfortably as I am. You're never gonna be able to help me shower, use the bathroom in a way that's not, in some ways, uncomfortable or frustrating and so you're not set up to win if you're the mom in that situation. I was often frustrated with her. I think some of it was at the situation and not with her but I think a lot of it got taken out on her and I'm sure she was
frustrated with me because I was not always kind to her you know she didn't deserve that and then I think when I had free time I didn't want to spend it with my mom because I was already spending all of my time with her and so I would do fun
stuff with my brothers or my dad or my friends, but I think that made our
relationship really difficult and I think that that was really the case for all of
high school, which was all the time that I was needing her help to do a lot of
the things that I needed day to day. Things got a lot better when I went to
college. I remember she came with me, we went two weeks early to help get things sort of set up. 

When I came back and saw my family on breaks, things were much better. And I felt like having my mom not be the person always responsible for all of my care and being able to spend time doing things with her that we chose to do, not things that we had to do, helped immensely. And so I think the distance and getting independent really helped our relationship a lot.

So Molly's relationship with her mother improved as she grew more independent. In fact, Molly had made independence her priority from the beginning. She found her own way to finish high school on time and to participate in school sports. And it continued when she went to college.

I was always a pretty independent kid, so my priority was to figure out how to be
independent and then as I started approaching college it became obvious that if I
could for example put myself to bed on my own at night that meant that I could
like go to study groups go to parties go with my friends and now have to worry
about scheduling someone to help me get to bed and so having some amount of
independence really opened up my social opportunities and not having it was really gonna be limiting in terms of what I would need. Becoming independent is also a lot of work. I remember my mom and I had a rule where she would wake me up and then I would get 20 minutes to try to put my pants on. So every day I got 20 minutes and at the end of 20 minutes I never had my pants on. But it takes a lot of patience and a part of the people who are sitting there watching you that could just do it faster if they did it for you. But I don't think I would have really learned to do all the things that I ended up doing independently without them sort of giving me that first shot. I still am learning to do stuff now that I didn't know how to do last year. But I think every time you have different challenges, you figure out new ways to approach them or new ways to do something that you didn't know you could do before.

Molly finished college, she went to medical school, and is now a physician at a
major big city hospital, and works in a clinic that specializes in helping people
with disabilities. She lives independently and takes care of herself on her own.

This episode was produced by Thea Flaum, Stephanie Lollino, and Anne Hambelton. Directed and edited by Dan Lombardi, music by Cayman Klass. 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. Allen 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.