My Disorder Makes me Superman

Apraxia is described as the inability to carry out purposeful activities or movements as a cause of brain damage.

There are various different types of apraxia, the most common being the buccofacial variant i.e. the inability to execute facial movements such as winking; this type is occasionally accompanied by language disorders like aphasia.

I am Mara Wood, I’m fifteen years old and suffer from a combination of ideomotor and ideational apraxia which involve not being able to respond correctly to verbal commands and having trouble carrying out tasks that require the coordination of actions in a certain order, respectively. On more occasions than I care to mention I seem to have been imitating Superman due to the fact that I could not manage to put my underwear on before my trousers: this can be regarded as quite comical or as totally tragic.

I prefer the first, more positive perspective when it comes to facing my condition, despite it being very difficult to not sink into a crippling depression. But, as my good old grandmother would tell me, claiming she was the author of this phrase: “smile and the world smiles with you, cry and you cry alone”. The fact is I have many reasons to be angry, livid even, but it’s exhausting, and I’d much rather be laughing to point of crying than doing the latter purely our of self-pity.

Fortunately for me, although I was permanently brain damaged as a baby, it only affected my ability to execute actions I know I must carry out; my thought remains in tact which means I can think clearly and employ wit and sarcasm  even though I can’t always do as I’m told, literally.

I became brain damaged shortly after I was born. When I say shortly, I mean minutes after I left the safety of my mother’s womb to enter the big, bad world.

A couple of weeks before my due date, my mother and her boyfriend (not my father, but that’s a story I refuse to go into) decided to spend a few weeks in a ranch that belonged to my grandfather. The house was relatively isolated, with the closest town being three miles away. It was totally self-sufficient and the phone lines were often cut-off, so when I ‘decided’ I was ready to be born, my mother and her companion didn’t know what to do.

I guess I could blame myself for not waiting until my dear, sweet mummy and her friend were done having fun…How selfish of me!

Anyhow, when she began to experience contractions, my mum tried to get in contact with the town’s hospital, but it had been rather windy during the past few days and the phone lines had been damaged.

As the contractions grew stronger and more frequent, Dan, my mum’s love interest at the time, took control of the situation like the hero that he is and helped my mum through the birth until I was safe in his arms. However, all did not go swiftly: as my head began to emerge from my mother, my neck became tangled with my umbilical cord which slowly started to choke me. As fast as he could, Dan cut it off and wrapped me up in a blanket. Then, for a moment I stopped breathing and turned a pale blue. In a panic he began to rub my back as midwives do in this situation in order to get my blood flowing regularly, but he was so insistent that, although I was revived, the rough shaking left me permanently brain damaged.

As an infant, my apraxia was hardly noticeable; all children have trouble tying their shoelaces or even bringing a fork to their mouths when their mother asks then to. These things were just a little harder for me.

As I got older, my disorder became increasingly evident: the frequent Superman impersonations, the inability to feed myself, to write properly, to open doors, close them, walk up and down stairs, take items from my pockets, get them in there in the first place, etc. More often than not, I had trouble carrying out the most basic of tasks. Eventually, when my mum finally saw that I wasn’t just clumsy, forgetful or disobedient, I was taken to a specialist.

From then on my mother became a kind of carer, but I made sure it did not mean she had to dedicate her life to me; she’s there to help me do things that most people can do on there own which means she needs to spend a little extra time with me than an average parent of someone my age would. She’s there to help me tie my shoelaces, for instance, when my brain decides to hibernate.

That’s how it feels: every now and then, rather often actually, my mind seems to say “nope, I refuse to work any harder, you’re on your own, I simply will not bother”. No matter how hard I try and no matter how long or ardently I stare at whatever need doing, I simply can’t. It’s frustrating and I often get desperate, but I keep reminding myself that I have people around me who love and care for me. My mum and Dan, who decided to stick around (which has been quite fortunate for both my mum and me), feel guilty for what happened, but I don’t blame them; no one is to blame for what happened. Sometimes I get bitter when I think of what could have been, nonetheless, I know it’s no use and I have come to terms with my condition and even learnt to see in what can be described as a comical fashion.

I have learnt to accept who I am and ignore those who attempt to use my condition against me; I now divert all my attention to my progress. I know I’m strong and I won’t let my condition get in the way (I’m not deluded, I am aware of the array of things I’ll never be able to do, but I’ll do my best with what I’ve got).

I want to travel, see the world. Then, when I’m done, I’ll return home to Riverside, CA, and do as much as I can to help researchers learn more about disorders like mine and about how the brain functions. I would also like to help others in similar situations to come to terms with their condition with a smile on their face, just as I have (and for those with buccofacial apraxia who can’t smile, we’ll just get them feeling as good about themselves as possible).

Although my disorder has been a huge burden, it has its perks, one of which is the ability to get away with just about anything. So despite, I have had my fair share of fun and mischief!

Selma Azzubair del Riego, 1º Bachillerato