A Word About Spina Bifida

I have referenced my disability once or twice in this space, but I usually don’t go into much detail. October is Spina Bifida Awareness Month and all I’ve really done the last couple of years is post a meme/banner on my Facebook page. Then, all the sudden, it occurred to me…I have this space on the interwebs where I can write about anything I want. I’m a little slow sometimes y’all. 

Want to hear something funny?? My father’s name is Jerry, so I am quite literally one of Jerry’s kids. That was pretty amusing back in the day when the Jerry Lewis MDA Labor Day Telethon was a thing. Unlike muscular dystrophy though spina bifida has never gotten its own TV show. Honestly I didn’t even know that the Spina Bifida Association or Spina Bifida Awareness Month existed until fairly recently. I recall being involved with the March of Dimes a little bit as a kid, but it seems that other maladies like multiple sclerosis, cerebral palsy, & down syndrome are more commonly discussed & understood by the masses, which is fine. When I attended basketball games in college they seated all of us wheelchair folks together anyway, as if we were all supposed to know one another. At any rate, I’m glad there is an organization and a whole month dedicated to awareness. Knowledge is rarely a bad thing. 

I don’t talk too much about my…situation…here or anywhere else, for multiple reasons. First, it’s my life…has been since Day 1. I am perfectly aware that I’m not “normal”, but my daily routine is what it is, and for me it really isn’t…noteworthy. Secondly, there’s a saying that I’ve heard in multiple arenas that is basically “why fit in when you were born to stand out” or something to that effect, which is pretty much diametrically opposed to how I do business. I understand the sentiment, but when one “stands out” for being the guy in a wheelchair it’s not a positive. All I’ve ever really wanted was to fit in, although as I’ve grown older I’ve come to understand that no one is really like everyone else and the definition of “normal” is most certainly wide open. And finally, I don’t talk about my disability because I absolutely do NOT want anyone to feel sorry for me. I like people. I enjoy making friends. But I want others to actually like me for all the reasons someone usually likes another person, whatever that may be. I have never sought out sympathy or pity. I’d rather someone leave me alone than feel sorry for me. It should be noted that also applies to this particular epistle. I wish to inform & enlighten…that’s it.

Having said all of that, I must tell you a story that may seem a bit contradictory. When I was in 5th or 6th grade there was a girl that I liked, inasmuch as an 11 year old kid understands such yearning. Unfortunately this girl would not talk to me, and I didn’t know why. Luckily a buddy of mine was her neighbor so I had him do some reconnaissance. He reported back that she was afraid to talk to me because I am in a wheelchair and was concerned that she might say something wrong. In that moment I decided two things: 1) I would never be easily offended by anything, and 2) I would always be the first person to make a completely inappropriate cripple joke. More specifically on the second point I am not the least bit upset by questions and gladly tell anyone what they want to know. Women still tend to steer clear of me, but there are many reasons for that other than my disability. 

I am not a physician or scientist, and I assume there aren’t many of those in The Manoverse, so I’ll try to explain spina bifida (Latin for “split spine”) in the simplest way possible. What it really boils down to is a hole in the spine. There are varying degrees of severity, largely depending on where the spine is open. My “hole” was in the small of my back. A few inches higher and I may not have lived. An inch lower and I may have been able to walk. The cause?? I don’t know. I used to joke that my mother had done drugs in the 1960’s, but anyone who’d ever met her knew that was far from the truth. I’ve also been known to state that I was born in a wheelchair which was extremely painful for my mother. I told you…I’m politically incorrect & mildly inappropriate. At any rate, 1400 babies in the United States annually are born with spina bifida these days. In comparison the CDC estimates as many as 8000 babies are born with fetal alcohol syndrome.

So what does spina bifida mean in practical terms?? How has it affected my life?? 

Doctors told my parents when I was born that I would be paralyzed from the waist down, but actually I do have sensation down to my knees. Obviously I cannot walk and utilize a wheelchair, which means accessibility is an issue I cannot ignore. Stairs are not my friend. Since the pandemic began awhile back I’ve observed many of my social media contacts really enjoying the great outdoors, which is pretty easy to do here in West Virginia…unless one is in a wheelchair. Hiking, boating, fishing, skiing, hunting, swimming, yada yada yada…all rather difficult options. Are they possible if I was really hellbent on it?? Yes, but I’ve never felt the urge to be that outdoorsy anyway. 

Accessibility affected my education as well. I could not matriculate where I was supposed to because the grade school was old & had a bunch of steps to even get to the front door. The board of education had no idea how to handle the situation, and they also assumed that because I was physically disabled I must be mentally impaired as well. They were wrong. There’s no need to dive into the details, but I was bounced around multiple schools for a few years and never attended school in my district. Unlike most kids my classmates & my neighbors were completely different groups of children. It didn’t hit me how odd this was and how much I missed out on until many years later. It is my understanding that things are much better for disabled students nowadays, which is awesome. 

My collegiate experience was far different. I had an older acquaintance who told me when I was first considering college that West Virginia University, which is less than an hour from here, isn’t a good choice because of accessibility (that may have changed by now, but this was three decades ago). That led me to Marshall University where the campus is smaller & flatter. It was there that a buddy from high school invited me to join his fraternity, one of the best choices I’ve ever made. For the first time in my life I was one of the guys. I had friends. I drank, partied, went to football games, & did stupid stuff just like everyone else. Did I neglect my studies and fail to effectively plan for my future as an adult?? Perhaps, but I wouldn’t change much about that time. 

As a matter of fact, I have to tell another story.

One night a bunch of us were going to a place called the 1896 Club. It was an old house that’d been converted to a bar. As a group of my fraternity brothers headed up the steps into the club I was like “Ummm…hey guys”. One of them came back, and though I can’t recall who said it I remember what they said, which was something to the effect of “I’m sorry Sam. Honestly, I just forget that you’re in a wheelchair. You’re just Sam to me.” To this day it is one of the nicest things anyone has ever said to me. Luckily the bar had an accessible back door. Maybe that’s why I don’t remember anything else about that night. 

I won’t bore you with a bunch of medical stuff, but there are several secondary affects of spina bifida, things that have impacted my life significantly. I’ve spent way too much time in hospitals and lost count at 30 surgical procedures. Someone once asked me if I’d ever considered becoming a doctor, and I just laughed. Well okay, I may have rolled my eyes too, which is a little unfair. The inquiry was well intended and the person was being complimentary of my intelligence, which I appreciate. However, I hate hospitals. I respect the job that medical professionals do, but never had the desire to be one of them.

Yes, I can drive. Hand controls are actually fairly simple. I just pull down for the gas & push in to brake. I cannot drive a standard because there is no way to control a clutch. Getting my big ol’ butt and my wheelchair in & out of a vehicle is the more complex issue. Four doors are a no go since getting the wheelchair in would be impossible. I am hopeful that my next vehicle will be a van with a lift, but those are costly and not as available as other cars & trucks. 

Can I procreate?? I think so 🤷🏻‍♂️. No one ever told me I couldn’t. I suppose there might be some medical hoops to jump thru, but it’s kind of a moot point anyway. I’ve never gotten to the point where marriage & fatherhood were on the table, and although it’d be easy to blame that on my disability it really would be an unfair cop-out. I’ve made a lot of mistakes & poor choices that have negatively affected me professionally & romantically, and very little of it is directly connected to spina bifida. That being said, women aren’t typically all hot & bothered by a dude in a wheelchair, and I don’t blame them. Would I like to find someone, settle down, and do the whole white picket fence thing?? Sure, but it doesn’t seem to be in the cards for me and that’s okay. At this point I’d just like to find someone with whom to have dinner, see a show, or simply hang out & watch the ballgame with besides my goofy neighbor (who’s a dude by the way). 

Speaking of propagating the species…

I give all the credit for the positive aspects of my existence to my parents. Today spina bifida can be diagnosed in utero and can sometimes be minimized or fixed…I think 🤔(reminder: I’m not a medical expert). That wasn’t the case when I was born, and I have occasionally pondered my parents at that moment…mid 20s, three year old daughter, their whole life in front of them, at the peak of happiness…and then I came along. Thankfully they rose to the task, never allowing me to feel weird or excluded, and always treating my sister & myself fairly & equally. It couldn’t have been easy. 

It’s called Spina Bifida Awareness Month and I think I’ve accomplished that, so I shall wrap this up. It is always my intention to keep these little ditties easily digestible, although I’m well aware of my own verbosity. Anyway, hopefully y’uns know more about the subject now than you did a few minutes ago, so you got that going for you, which is nice. 

2 thoughts on “A Word About Spina Bifida

  1. iAd someone who just discovered your blog I’m looking forward to reading more of your musings!

    I’ve re-posted this particular entry into my own blog http://www.heartstrings and tailspins.Wordpress.com as part of my October is Spina Bifida Awareness Month series.
    My 29 yr old daughter had similar experiences ; it’s so nice to reflect on the past three decades as her mom , from a different point of view.

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