26

I was dead for twenty-six minutes. That is how my life started. It sounds like a film that begins at the end. All that ensued was a result of how I arrived in this world. I don’t remember being sat down by my parents, with or without the doctor, and being told I had cerebral palsy. I know that the ‘talk’ must have been when I was young, because I seemed to have had a grasp on at least the minor details of my disability from an early age. But the actual moment of truth was never etched into my brain by my memory engraver. Given my lack of recollection of my first discussion about my cerebral palsy, I can quite safely say that it wasn’t a life-shattering revelation. Nothing suddenly fell into place or suddenly made sense—nor did I fall to my knees and beat the floor whilst crying upwards, ‘Why? Oh why?’ Later on, in my teenage years when frustration and isolation set in, I would ask ‘Why?’ But children are resilient, and in my initial blooming phase I can’t say I wasted too much time being upset about the new words that had been pinned to my chest. I was deprived of oxygen at birth, which led to being a stillborn baby. I was born. I was dead. It sounds like an oxymoron. For twenty-six minutes the doctors tried to resuscitate me. They were just about to stop trying when I took my first breath. It will be no surprise to you when I say that the number twenty-six holds great significance for me. I have the number twenty-six in Roman numerals tattooed on my right arm. Every tattoo I have represents something in my life, but my twenty-six tattoo has a special meaning attached to it because that is where my life started. If I hadn’t started breathing in the twenty-sixth minute, I wouldn’t be writing this book. Being dead for twenty-six minutes is one reason for the title of this book. The other reason has a bit of fate imbedded into it, if you believe in such things. I embarked on the journey of writing this book when I was twenty-six years old. When coupling these two reasons, it seemed to make sense that I simply call the book 26. My disability is imprinted on my soul. As an adult, I know that the cerebral palsy shapes me rather than defines me. Cerebral palsy and I are like two trees that somehow became tangled, and we have had to grow together. When I was younger however, I did not have such understanding. I felt that the cerebral palsy allowed me no quarter, and so I gave it none with my scathing opinion of the condition. I was a ‘cerebral palsy person’ rather than a ‘person who has cerebral palsy’. I tried to hide my disability because I thought it made me look ugly, which, looking back, conjures up an image of attempting to hide an elephant in my back pocket. This was especially the case with people who I was meeting for the first time. I believed they would only see my disability, but in actuality that may have been all I saw at that point in my life. It takes time to come to an understanding with one’s disability, and then, when you think you have struck an accord, your condition—or as I nicknamed it, my body’s housemate—decides that confrontation is so much better than cohabitation. There is no magic wand when it comes to reconciling yourself with any disability; however, after the shackles of conformity are thrown off when one leaves school, it becomes easier to find one’s own way. There is a lot of pressure to fit in at school. It can seem as if you are swimming against a strong current if you feel you don’t fit in. But when school is finished, you can find yourself in a lagoon where there are fewer currents, and you can choose which way to go. Of course, it is not as simple as that, and I have had knocks that have tested my resolve throughout my life. I have tripped up and have had to get back to my feet. Every now and again I will be tested by an obstacle that will lead me to doubt my ability to cope and overcome the situation. As a child, obstacles that would test my resolve were simple things like not being able to ride a two-wheeled bike. By the time I was a teenager, I worried that my disability would scare away girls who might otherwise have been interested. Adulthood rolled around, and I wished I was still worried about riding a bike. Now, I find myself worrying about whether my disability will affect my ability to do a particular job or a simple household task. Dealing with disability can be like riding a bull. As you ride the bull, it bucks one way and then the other, trying to throw you off. If the rider fights the bull, the rider is more likely to be thrown from the animal’s back and hit the floor with a thud. But if riders accept that the bull is going to try to throw them off, and they simply go with the flow, then the so-called ‘most dangerous eight seconds in sports’ become eight seconds of freedom, and they are more likely to stay mounted. My twenties, for the most part, have been about trying not to fight my cerebral palsy symptoms. An example of this would be eating food. My hands can shake or, to use the bull reference, buck, because of my cerebral palsy. I have tried to control these involuntary moments, but that is like trying to control the bull. My hands become two separate entities, and they seem to be in control of the rest of me rather than the other way around. When my hands start to shake whilst I am eating, I now try to breathe deeply, relax, and realise it just may be one of those days when my hands decide that they want to impersonate an earthquake. The trick is accepting that to have one of those days is okay, and it doesn’t make me less of a functioning person. In truth, it actually makes me a higher-functioning human being, as I am able to adapt to the situation and succeed in eating my food. Years pass by and experience stacks up. The food experience may sound cringe-worthy, but it is an example of how my disability trickles through every crack and cranny of my life. For this reason, I didn’t want to merely write a book about my disability but rather how it infuses my life, bringing different adventures to the fore. The very essence of this is being held in your hands at the moment. I am 100 per cent sure that I would not be writing a book about my life if I wasn’t disabled. In the early nineties, an Australian comedian called Steady Eddy came to my family’s attention. This particular comedian appealed to us because he had cerebral palsy, and he was using his condition as material for his act. I wouldn’t say the penny I was holding dropped, but my grip was loosened slightly, and I saw that there just might have been a bit of method to my parent’s madness that was akin to Steady Eddy’s routine. My parents always encouraged a siege mentality based on humour to get me through the trials that life with a disability threw at me. My father, like my own personal Nostradamus, gave me a glimpse into the future when he described a scene that would be reoccurring in my adult social life. Dad told me that one night I would be in a pub, and my unsteady balance and shaking hand would contrive to spill my drink on someone, or I would fall into the person, spilling his or her drink everywhere. Dad said that in those situations and others, I would need to be able to fight or—the safer option—be able to defuse the situation with a joke, quip, or comment. I can still remember the example he gave me. Believe me, if it were on a CD or DVD it would be worn out by now due to the amount of plays it has had. ‘I’d like to see how well you would carry a drink after you’d been dead for twenty-six minutes!’ The ‘put-down’ is as adaptable as an egg and can be applied to many situations, such as, ‘I look good for being dead for twenty-six minutes!’ Some people may call this tactic self-deprecation, but I think that is a little too cut and dried. There is some self-protection at work in that I am disabling the attack. I have taken the ladder from underneath that person, and he or she now has nowhere to go. If anything, I fi