I was born in 1955 with Meningocele Spina Bifida at L5/S1. At that point in time, no one knew, until the baby was born, if there were going to be any problems. I’m sure my parents were quite surprised, after having four healthy girls, that the first-born son had SB.
My first surgery was done within days of birth, to close up my back as much as possible. The scar on my spine stretches about three to six inches from the center toward either side. I’ve never actually seen what it looks like. Until the advent of cellphones, I would have had to ask someone else to take a picture, and I’m much too shy for that.
Sometime after birth, probably within the first three years, I had another operation to sever the ligaments in my feet, so they wouldn’t draw up and make me unable to stand at all. Subsequently, I have no feeling in either foot.
Not so funny story: when I was an adult, I got up in the middle of the night to get a drink and had to walk from my bedroom thru the living room and into the kitchen. When I walked into the kitchen, I kept hearing this “tick, tick, tick” every time I took a step, which is definitely not normal. Sitting down on the kitchen floor I pulled my left foot up so I could look at it and found that a three-inch craft needle, that I’d been using to make stuffed heads, had gone thru the fleshy outside of my foot and was sticking out of the top of my foot. I didn’t feel a thing, but nearly went into cardiac arrest looking at it!
Back to history: the doctors informed my parents that I probably would never walk and, if I did, then braces and crutches would have to be used. For the first four years, I did nothing but crawl. Our house had all the bedrooms on the 2nd floor, so I learned to climb the stairs and scoot down on my butt, which ended up being my major form of exercise. Getting down the stairs was a hoot… climbing them was a serious pain. What it did, though, was build up my upper body strength, and instill in me a sense of independence/stubbornness that has stayed with me.
At about four, I walked for the first time. We lived in a rural upstate NY town and there was a woman who would come house to house to sell eggs: Helen the Egg Lady. Much to my mother’s chagrin, Helen was the first person I walked to. It wasn’t until later, prior to kindergarten, that I stopped using the crutches & braces altogether.
I started school at the same age as everyone else, but with one significant difference: I am both bladder and bowel incontinent, so I had to wear a diaper for the first 13 years of my life. My parents had chosen a house directly adjacent to the local grade school, so I would come up at lunch to change them. Obviously, there would still be leaks, and unpleasant smells. I was NOT chosen as Most Popular Child at school. This is where I was first exposed to the cruelty that is childhood.
They say “names will never hurt me”… they’re wrong. Being verbally bullied is probably the worst part of being a disabled child. The physical things one learns to deal with and, in some ways, even ignore. Unless, of course, it’s constantly brought to one’s attention in a derogatory manner. But, you learn to deal with it and we all have ways to deal. Mine was to develop my brain, ‘cos my body wasn’t happenin’.
I had no other surgeries (save for a very late circumcision at around 10) until I was in my early teens. At that point, I was running thru shoes like water, because with weak hips, knees, and ankles, my right foot would “turn over” and I would end up walking on the inside of the shoe, more than the bottom. A sliver of bone was taken from my right shin and inserted into the outer ankle joint, making it physically impossible for it to bend. I still could never wear shows without laces and dress shoes didn’t last very long, but at least I was able to wear them. To me, that was an accomplishment!
As I said, I went to school across the street from my home until sixth grade, when I had to transfer to the local Jr/Sr High School. My parents were in a quandary about the incontinence issues, as I obviously couldn’t wear a diaper for a full day. They were lucky enough to come upon what was called a “Bard Urinal Appliance” for men. Essentially, a combination jockstrap / condom, which directed the urine down to a bag strapped to my leg. It was a step up, but it was quite uncomfortable and tended to smell, as well. Again, I learned to cope, in order to try and “fit in” with the other kids.
High school widened my horizons, but also taught me about people and how they limit what we can do. Of course, being bullied doesn’t help one’s self esteem, especially when it’s “true”. I DID smell and I DID “walk funny”. My parents weren’t particularly helpful in that respect, as they wanted me as mainstreamed as possible. It’s a duel-edged sword, but all in all, I’m glad they did. It gave me the coping skills I would need, once I got out on my own.
One major upside to HS was that I met people who DIDN’T bully me, people who treated me as an equal and didn’t go out of their way to make me feel different. Yes, we were all outcasts, but we were all TOGETHER in being outcasts. Nice to belong to a group.
Being accepted to any child and, especially so, to a disabled one. We would go on long bike rides, hikes in the woods, and trips to the mall and at no time did they make me feel different. They would what for me to catch up, with bringing any undo attention to it, and never tried to help unless I asked them, first.
So, adulthood loomed on the horizon. Being disabled is hard, no matter what degree. Being disable and getting a job, in the 70’s, was even harder. I’d go business to business, putting in application after application, and would sometimes get a job interview. But when I walked into the room, it was easy to see the negative reaction of the interviewer and know that this one wasn’t going to work out, either. Eventually, I did get a factory job, but it was only because I was able to sit and that I was an interchangeable cog that could be easily replaced. Good for the ole’ ego, eh?
Then, of course, romance. I’d had crushes on several girls up until my late teens, but never anything that was reciprocated. There were a lot of “you’re just like a brother to me” girls, but no holding hands, no kissing, nada. Obviously, a lot of this had to do with the urinal bag I wore and, until I met my first wife, it kept me from any romance at all.
I met her thru a mutual friend and found out she was born with Cerebral Palsy. Unless she was extremely tired and tended to drag her feet, it was impossible to tell. She was petit, with long brown hair and glasses and I thought I’d won the lottery. We started with a long-distance relationship, as neither of us drove, and I wrote tons of letters, being charming and friendly and eventually wearing her down to a first date which lead to a first kiss and, sometime later, first marriage. I thought I’d grabbed to golden ring, at last.
That marriage lasted over 20 years. The sexual aspect of it was awkward. Spontaneity was out of the question. There were things that had to be dealt with before we had sex and that always took time. Luckily, she was patient. That, and my skills at foreplay are superb…
Well, due to stupidity and cockiness on my part, that one fell thru and I ended up moving out of state which, in the long run, was probably the best thing that ever happened. I cut ties with family and friends and moved across country to start fresh. Starting over in a new place is tough, doing so disabled is harder. ADA and FMLA were brand new and ignored, for the most part. Being persistent, coming back weekly to a business you hadn’t heard from was absolutely necessary. It took almost a year, but I did get a job as a customer service rep, which I still have.
The incontinence issue still hovered over me, so I decided to do something about it and had the Mitroffanoff done in 2000. Hands down the best thing I ever did. Absolutely changed my life. Now I had the freedom to wear shorts, trunks, and, most importantly, have sex at the drop of a hat, figuratively speaking. Not that the women were coming out of the woodwork. The walk was still off-putting, but if I could sweet-talk them past that, I was golden.
So to speak. Long story short, I met my current wife over the internet and we were married a year later.
That’s my story, and I’m stickin’ to it.