Spina Bifida, There’s One Thing I Like Best About You


Dear Spina Bifida,

You’ve been around for as long as I can remember, but I don’t think of you as a “dark passenger” like Dexter Morgan did in his chilling TV series — that’s probably a good thing. But you are a high maintenance and demanding passenger in my life just the same.

I think of it kind of like if I had to walk around everywhere with Bono. You get attention all the time whether I want it or not, you’re a little all-consuming at times, everyone seems to have a polarized opinion about you and every once in a while, you come up with some insightful gems that make life entertaining and meaningful.

Bono summed it up well in the song “One”: “We’re one, but we’re not the same and we get to carry each other.”

I carry you around because I have to; you carry me to some fantastic free parking and to a different way of navigating life. Statistically, we’re kind of a rare match, but don’t go thinking you’re special, Spina Bifida, because I’m here to tell you that you’re not.

I understand your baggage better than anyone and like any good relationship, I try to work on emphasizing the good in my life while minimizing the bad that you can bring. Especially when you go all “prima donna” and force me to change my plans.

You’ve taught me a lot and you’ve marked my life in important ways that I value, even though you haven’t made it easy for me. But we both know you’re not going anywhere, so I’m glad I decided to just make the best of it.

Despite your Kanye West-styled antics, I’ve managed to do pretty well. I have been working for more than 10 years in corporate communications, got a Master’s degree, own a house, and I even managed to convince Lisa to marry me. But you always do a good job of bringing me back down to Earth when you make me sweat uncontrollably as my legs give out at public functions for tall people, where they decide chairs are not necessary, or when you force me to drop whatever it is that I’m doing to deal with the games you play with my body.

You never let me get too big of an ego, but I never let you win. I guess we balance each other out that way.

The funny part is when I first started off with you 38 years ago, I didn’t realize you were much of a big deal. In fact, that might be the worst part of your scheme. You came to me on the day of my birth, when it was harder for me to know where the Spina Bifida ended and I began…

Remember when I was seven and my family got me that hand-pedaled bike that the police kept pulling me over for riding because they thought I was a toddler due to my short size? They didn’t think I was safe on the road and Mom had to politely explain to them that I was in fact in the second grade and capable of handling a bicycle, even if I did pedal it with my hands…

Remember that time when Mom drove away without me from the preschool when I was four just so I’d be forced to really show you who was boss? I walked home for the first time that day using crutches while Mom stared at me from the window and I went everywhere on them from that day onward. That was a big achievement, but I remember how you almost convinced four-year-old me that I should be mad at her for forcing me to control you.

That’s the mask you wear, Spina Bifida. You like to make other people believe that you’re me. Hell, you’ve even tried to convince me of that lie, but I won’t let that happen.

You might be my passenger in life, but I’m the one who decides where we go. I won’t let you control where I walk, where I go to school, where I work, who I associate with, what I do with my life and I won’t let you take over how I think about myself or other people.

But like Bono, you’re not all bad, Spina Bifida. In fact the thing I like best about you is what you bring out in other people. You’re like an interpersonal truth serum that people unknowingly ingest when they come in contact with you.

Sometimes people say and do awful things when they think I’m you. Remember when I went on that first date with a girl and she categorically told me that she really liked me but totally hated you? I think her words were, “You have half the qualities I want in a man.” She didn’t understand that you’re as much a part of my life as her ignorance was a part of hers.

Or how about the time when I tried to give money to a homeless person on the street and his other homeless friend ran down the street to stop my attempt at compassion because you blinded him. After all, people with disabilities like me couldn’t possibly have any money to spare… right?

That’s why I don’t think you’re special, Spina Bifida. All people have passengers in their own lives. It’s just a case of whether or not they’ve managed to meet them yet.

Of course, many of them don’t have their passenger sitting on the front seat obnoxiously drawing attention to themselves like I do. I don’t know if I’d enjoy not knowing my passenger any better than I do knowing you. That’s an interesting question for another day, but I can say that I think I’ve got you figured out and I’ve adapted to the drama you bring into my world.

You haven’t beaten me in a major way yet, Spina Bifida, but you have slowed me down, confused me, inconvenienced me, fought with me and sometimes changed my priorities in life.

But knowing you like I do, I’ve learned to be patient, thoughtful and quite tenacious and I like that about myself. I’ll always have my eye on you, Spina Bifida, and so will everyone else. You wouldn’t have it any other way, would you?

This post originally appeared on Jon Bateman’s blog.

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