Cerebral Palsy & Me

Meet George Bastow, a writer, blogger, journalist and all-round creative type who rolls through life on a rather snazzy set of wheels.

To learn why he navigates the world on four tyres as opposed to the standard two-footed method, we need to go back in time to the pre-smartphone era of 22 years ago…

 

On 11th January 1997, I made my entrance into this wonderfully chaotic world of ours in a fittingly chaotic manner.

Thanks to a long list of complications and more medical drama than a Holby City Christmas special, I was born 11 weeks prematurely and starved of oxygen at birth. When the doctors removed me via emergency C-section, they discovered that I was in fact quite dead. Tiny, tinged blue, and utterly lifeless.

My prognosis was extremely stark and my mum was told that on the off chance I did pull through, I would be nothing more than a “vegetable.” Clearly political correctness hadn’t quite caught on back then. Fortunately, I managed to survive but, as predicted, I was far from unscathed.

As a result of the traumatic circumstances surrounding my birth, my newborn brain suffered considerable damage, leaving me with a condition called quadriplegic cerebral palsy.

CP is very complex, and it affects each individual differently, but in my case it means the part of my brain which is supposed to send signals to my body, telling it to operate in the traditional mobile manner, is thoroughly kaput. My disability affects every muscle in my body, all four of my limbs and makes me a full-time wheelchair user. The most obvious aspects of the condition are my inability to walk and severely limited motor skills, however these are merely the tip of my CP iceberg.

The complex neurological and physiological complications of my disability mean that my body and mind feel, and often behave, like they are in constant conflict. The mind and body of your average non-disabled person work together like a classic showbiz double act, performing in perfect professional unity day in and day out. My mind and body are like an old married couple, incessantly squabbling for the sake of habit. This analogy makes itself apparent in CP’s multitude of side effects that include muscle spasms, weak immune system and intense bouts of fatigue.

Muscle spasms are particularly irksome things. They can occur at any time and execute a reign of malfunctioning terror upon whichever muscle groups they wish to target. Spasms can take many forms, depending on their level of intensity and chosen body part. For example, when getting a spasm in my arms, one or both of them will begin to twitch violently causing the unsuspecting upper limb (or limbs) to shoot upwards or side ways in a frantically uncontrollable fashion. Any bystander would be forgiven for thinking I was trying to direct imaginary traffic or signalling the pilot of a low-flying aircraft to make an emergency landing. If only the reality was that interesting.

The spasms in my lower limbs are equally unpredictable. My legs will suddenly wake from their usual lead-heavy sleep and begin to frantically convulse, sending sharp muscular vibrations from the top of my hip to the tip of my toes. They can do this singularly or as a duo depending on the mood of my permanently disgruntled body. Sometimes the spasms are isolated to my ankle and foot. When this happens, my foot (or feet) will start knocking mercilessly against the footplate of my wheelchair. I often wonder whether this is my body’s way of thoughtfully tapping out an impromptu jazz solo to add a frisson of culture to my day.

Another consequence of my premature arrival was respiratory distress syndrome. A diagnosis that roughly translates as ‘born too soon, lungs underdeveloped, best of luck for the future.’

It has left me with asthma and a low immune system that mutates every sniffle into a full-blown chest infection and enables the smallest tickly cough to metamorphose into a rasping hack. All my life, germs have gravitated to me like moths to a candle. I’ve had more viruses than a reconditioned laptop and I practically have to be quarantined during flu season. I can’t venture beyond my doorstep unless I’m wrapped up like Scott of the Antarctic. I may have shockingly lacklustre internal defences, but my winter wardrobe is the envy of mountaineers the world over.

Fighting a constant battle against all known germs (as well as most unknown ones) can be exhausting. And then there’s the dreaded fatigue.

I have High Tone. In plain English this means that my body is in a constant state of tension. Even when I’m fully relaxed or fast asleep my muscles are naturally rigid. This perpetual stiffness is just another reality of my condition that I have grown up with and adapted to over time. It’s no big deal, at least until fatigue kicks in. The dastardly devil hits me with all the force of a tidal wave and as if by magic my muscles transform from being stiff as a poker to floppy as a fisherman’s hat. Every ounce of muscle memory that I have retained through a lifetime of physiotherapy suddenly disappears, and I become a wobbling pile of human-flavoured jelly. In this state, even my speech (the one physical ability I seem to have mastered) deserts me, and I start slurring and sputtering like a Shane McGowan tribute act.

Fortunately fatigue isn’t quite an everyday occurrence and it can be avoided, providing I get enough sleep, don’t get too hot, too cold or do anything that pushes my physical form beyond its fickle limits.

As you can see, CP stops me from doing many things. I’ll never be able to walk, run, dance or take a leisurely Saturday afternoon stroll around B&Q when I’m forty. But that’s okay because none of those things really matter. Even with CP I can still do everything that makes life worth living. I can think, feel, love, laugh, and perhaps most importantly of all I can write. 

With the help of some very cool voice recognition software, I can use the written word to make sense of everything. Writing allows me to express myself coherently and definitively in a way I could never achieve physically. It enables me to make peace with and transcend my difficulties. It gives me a purpose and helps me find order amidst the chaos of life. But best of all it means I can connect with awesome people, just like you.