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. I don’t always like you, Spina Bifida, but you haven’t been able to keep me from dragging you along. Still, 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. As I got older I found it odd that lots of people whispered about you while either ignoring me completely or smiling at me strangely. I also thought it was a little weird how some people like my family members stood back and watched while I went to war with you— 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 2nd grade and capable of handling a bicycle even if I did pedal it with my hands. Little did anyone know at the time that I would purposefully ride that bike by the bar every day because a misguided but very kind patron would come out and give me five dollars every time he saw me go by on the way to the candy store. Stories like that went on repeat throughout my childhood. Usually I’d win and not let people see you over me but sometimes I’d let people think I was you if it got me candy, money from strangers or school privileges to stay inside on snow days. Later, I realized doing that only helped you to take over more of me, so I tried my best to stop doing it.
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. Once I made that decision it was easier to see the differences between the people who really know me and those that are blinded by the costume you force me to wear every day. Not everyone understands there’s a real man underneath all your bling but I know better and more and more people are figuring you out too.
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. I’ll admit there are times when I wish you’d disappear or at least blend into the wallpaper a little better but you constantly insist on flashing your brilliance to everyone, everywhere, all the time. 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 that time the stranger in the elevator told us how he was going to kill his wife and it really sounded like he meant it? I asked him if he really wanted to go back to prison and suddenly he seemed to see me differently before he patted me on the back and thanked me for the good advice. 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. Still, you’re a bit of a sneak so I always have to keep an eye on what you’re doing.
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?