Spina Bifida: The Meanest Mom
When you’re born with Spina Bifida, walking around on crutches every day can produce side effects that are both telling and amusing. Quite often, I’ll meet someone at work or at a bus stop who is using forearm crutches for the first time after sustaining an injury. Usually, they’ll see me walking toward them and they’ll sigh or shake their head and ask me how I do it every day? Often I’ll respond that I’ve just had a lot of practice but in my mind I always wonder why they’re even asking me the question. How could I not do this every day? Imagine how awful my life would be if I didn’t?
Usually around this time the person in the temporary situation will lament how difficult the next eight weeks of their life will be until they can rid themselves of the torture devices that bruise their underarms and put calluses on their hands. I’ll smile to myself and try to be positive for them while resisting the urge to lash out and say that I’ve already done 30 years and I’ve probably got another 30 more to go. Eight weeks for me would be a holiday.
Yet, when I compare their eight weeks to my 30 years of experience, I’m always reminded that I adjusted to the process of using crutches on a daily basis as a child when I really didn’t have any idea that life could be any different. For me, carrying my body around on crutches is an automatic process just like brushing my teeth or combing my hair. It’s what I do to get from A to B and whenever I meet someone struggling with life on crutches, I’m always a little bit surprised that they find it to be as difficult as they say. I guess my youthful enthusiasm to get outside to go the corner store and get my latest pack of hockey cards always outweighed the challenge of whatever it would physically take to get the job done. It probably also helped that I was never raised to see my physical disability as any greater of a challenge than what my siblings had to do when they learned to ride a bike or to deliver newspapers around the town. My jobs were different but I never believed they were harder than what anyone else was doing.
For example, when I was a toddler, I wore leg braces up to my hips that were exactly the same as those worn by Forrest Gump in the movie, only mine didn’t magically fall apart and slide off my legs when I went running like they did for Forrest and I couldn’t dance in them either. They were heavy, cumbersome devices that would pinch the skin on my legs whenever I would bend them. I didn’t like my leg braces but they did give me more stability when I would stand upright, so I could see their usefulness especially when it came to holding myself up against the window ledge so that I could see the kids playing street hockey on the road outside. I worked hard to accomplish the task of being able to stand upright, so much so that I actually fell down 45 times (my mother counted) before I could see out the window independently. You might think that difficult or even harsh to watch, but I was just a little boy who wanted to see out a window and I learned what I needed to in order to make it happen. It was that simple for me. Though, I’m sure for my mother it was much more difficult to watch the struggle. Yet, she realized that learning these skills would never be easier for me than it was as a child and that my development and personal independence depended heavily on my ability to adapt to the reality I faced. No doubt, she was right.
It was the same story when I was four years old, when my mother drove away and left me standing alone at the door of my preschool to walk home alone using my first pair of crutches. For weeks before that day, she had coaxed me up and down the attached ramp that had been built down the side of our house using raisins as a reward before she decided to put me to the test by choosing to drive away when I refused to sit in the back seat of the car when she picked me up from school.
Looking back I remember how angry I was when she left. I fumed over how she simply shrugged, walked away and drove the 100 meters to the house, parked the car and watched me with her hands on her hips from the living room window while I still stood there glaring at her.
It’s funny, but I can say I never thought once about how hard it would be to walk home. I just was focused on the fury I’d unleash on the self-proclaimed “meanest mother of the west” when I got there. I don’t know how long it took, but in my memory it seems like mere seconds before I burst down the street, up the ramp and in the door ready to unload on my mother. When I got there though and she came to the door with that huge smile of approval on her face, I forgot my anger and soon was moving right along to settle down with my toys and hockey cards. Maybe that’s why I walked to preschool and everywhere I went after that day.
For me, walking home was just another skill I’d learned and in my house once you’d learned how to do something, you used those skills every day. Like all my siblings, I had expectations that needed to be met and one of those just happened to be walking on crutches along with cleaning my room and picking up my toys. It was just everyday life to me and has been every day since that time. No one in my family had time to fawn all over me or worry about my special needs. All they could do was ensure I had what I needed to succeed and that I was motivated and encouraged enough to learn the skills required. There was no time to analyze the unfairness or compare my life to other kids because everyone has things to do and at my house the best way to recover from any perceived tragedy was just to go ahead and do something about it.
I think what I appreciate most about my parents and family was that they treated me fairly without filling my mind with the idea that I was too special or too in need of protection to not have expectations or rules in my life. They pushed me hard to achieve but at the same time they developed strong lines of communication with me so that I always knew I had a place to go to talk about the more challenging aspects of life with a disability related to social exclusion, loneliness and the emotional impacts of always being different.
Today, as a grown man at 35, I can see how thirty years of using crutches has prepared me for more than just the physical aspects of coping with a disability. I’ve improved my health, conquered accessibility challenges and built strong levels of independence but along the way I also picked up skills in patience, problem solving, tenacity, self-confidence and emotional strength. All of these things together gave me the ability to move out on my own, complete a university degree, secure full-time employment and are helping me to prepare for my own upcoming marriage.