Living my best life despite and because I have Spina Bifida

Much of Spina Bifida Awareness month feels like it is just talking all about the complications, medical stuff, and what makes me different or my life hard because I have Spina Bifida.

The thing is, most people with Spina Bifida that I know at least, don’t go around thinking about that. Sure, we all have our moments of overwhelm, frustration, and pain. But most of us are just finding ways to live our best life.

I dedicated a whole long blog talking about different aspects of life with Spina Bifida from a medical and societal standpoint. Now, I wanted to take a few minutes to share some cool things I’ve gotten to do in my 42+ years. Some of these are despite being born with Spina Bifida, but some of these opportunities are at least in part because I have Spina Bifida.

This is a stock photo of a Corvette Club gathering. The Corvette Club adopted Spina Bifida as one of its causes and many of the Spina Bifida chapter summer gatherings featured members of the Corvette Club taking kids with SB on fun rides in their cool cars. I wish I had pictures of me in these cars somewhere!
Another stock photo. I have no idea who this person is, but it represents something I loved doing up through my teen years. My family went to the lake pretty much every single summer and each summer the local disability community would also have a Fun Day at one of the local lakes near Wichita. I was able to use a Sit Ski, which meant I could be on water skis while sitting down. I was good at going out of the wake and stayed up longer than most participants. When i was with my family, I would ride on the tube and even jet ski later. I consider this one to be both a “because of and despite” Spina Bifida thing.
Most kids learn how to ride a bike, but I couldn’t balance that well and needed extra support. The Optimist Club purchased this adult trike for me when I was a kid and I was known in my neighborhood for riding it all over. I had freedom, fun, and exercise. And our family dog, Angel, loved riding in the basket!
When I was in middle school, junior high, and some high school, I loved participating in track and field events for people with disabilities. I won a blue ribbon every time (I choose to ignore what I realized as an adult that I was usually the only one in my classification in each heat). I was able to travel to events and this gave me a sense of “normalcy”. It gave me a chance to be an athlete.
This is definitely a “because of” experience. I had major hip surgery when I was between 3rd and 4th grade. Part of physical therapy was to take horseback riding lessons. I did this for years and when I was on that horse, I was not a ton different than others. It helped my hips grow in the right direction and strengthened my leg muscles. Such fond memories!
I wasn’t much of a fisher but I did have that opportunity. I was 9 when I caught this 9lb catfish at my grandmother’s lake. I preferred to feed the geese!
This picture represents several things to me. First, that was my mother’s car (that I later totaled but let’s not talk about that). I drove almost like anyone else from the time I got my license at 16. Not a lot of people with SB can say that because they require (or are told they require) special equipment that is incredibly expensive if they are going to be independent. You also might notice I have a letterman’s jacket on. I didn’t care one whip if I got earned that jacket doing a “nerd” sport. I lettered in forensics three of my four years in high school. I won lots of awards and even went to State a couple of times.
Speaking of forensics, I did almost all prose or public speaking events. But our club did do a play my senior year and I played the queen. That was fun to play dress up and pretend to be someone else!
This photo is from a service day my freshman year of college but it represents the many different service projects and nonprofits I’ve had the opportunity to work with. I’ve always enjoyed trying to make a difference for others.
Another opportunity I had was in college when I took broadcasting classes. I was able to DJ at the college’s local station that broadcasts all over NWA. Part of me wishes I found a way to keep up that skill!
This is another “because of and despite of” thing. I won my first public speaking competition in 8th grade. I found ways to continue it in high school through forensics, on the radio in college, in Toastmasters for several years as an adult, as a workshop speaker for many years, and, in this picture, as a TEDx speaker. I spoke on disability etiquette, which is a platform I wouldn’t have without Spina Bifida.
This is one of my favorite social activities as an adult. My friend Sarah owns Something From Nothing Paint Parties and she’s guided me through probably five or six different paintings over the last few years. This one is my most recent and one of my top favorites.

I know there are more opportunities I’ve had both despite and because of Spina Bifida, but that was all the pictures I could find. Many times I was not able to do things the way able-bodied kids could but I was taught to figure out a way I could do my own version of things.

I have rarely, if ever, felt truly left out and “ostracized” because of living with Spina Bifida. Yes, there are things I wish I could do but I choose to focus on what I can do, not on what I can’t.

What are you focusing on that is your “can’t”? I challenge you to find another way to do something you love or find new opportunities to live your own best life.

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