I don't write from or about fear, it's mostly from a permanent state of inner confusion and mostly the writing is in a sense mumbo jumbo which I find myself often throwing away while thinking I think too much.
I really enjoy the process of writing though and continue to persevere. I don't really know what I gain from it other than piling more confusion on top of confusion.
As long as I have been in a wheelchair friends and family have insisted my story is a book in the making. I have been attempting to rise to what I see as a challenge in all that time. I have attempted to put the words together in an order that might just make me believe (in myself!) that this is something I am capable of and not just some vanity project and to make it worth the effort and the telling and the reading for everyone.
I have got to 40,000 words before ditching that draft. It was boring me by then so why would I even think of releasing my complete gibberish to those who might be interested?
My story is not rags to riches nor is it particularly groundbreaking.or adventurous but it is in two parts and there are a number of interesting anomalies and contradictions I still wrestle over, The magnitude of these are somewhat fuzzy or even lost on me as I attempt to simply grapple with my life, batter on regardless and just go with the flow and with what God Intended, if you are that way inclined?
My starting point is that I'm mostly very confused by me!
My life was entirely normal for more than three decades despite being born with the usually debilitating and 'heavily reliant 24-7' condition spina bifida (SB). I was able to walk, run, kick and jump unaided and with freedom for more than half my life when many with SB are not, I went without the need for major surgery, again unusually, until well into my 30s, and by then, I had lived a full and utterly fulfilling life. I have never been living with chronic pain or chugging back dozens of meds. I was outgoing and loved participating in sports, travel, attending concerts, galleries and theatre and working for most of the time in the years following my happy childhood and school years ending.
To look at me back then you would not have known I was disabled and I genuinely didn't think I was disabled myself. The impacts on my health and my life then were minor. My parents rarely felt much need to refer to it and my hospital visits were never directly related to it. Yet my neurosurgeon of the last few years has only ever seen one other case in all his years of research and knowledge like mine.
How lucky was I/am I?
My luck is what I cling on to when I begin to feel sorry for myself today. I volunteer and offer peer support to a national spinal charity after years of just knowing what I know. Now I feel a deep sense of community and gain new perspectives from my peers on areas of spinal injury I felt for long enough that it was just me it related to. Many have endured that permanent injury since birth while many others have been involved in that life-changing accident which when they have came round from they are forced to realise that this is a new reality they face.
My story is having a vague knowledge of being born with a spinal injury but this had so little impact on me that i was able to lock it away at the back of the vault for more than three decades while I could carry on regardless without a care although I recognised as I got older how serious spinal injury can be and while I acknowledged that it had the potential with me that it could rear it's ugly head at any time, I would be well prepared for that when the time came. My form of spina bifida was just being kind to me. It gave me every chance in life while It served me notice! I had the time to prepare for it. In the lengthy run-up to my surgery in 2006, I developed this daft little internal monologue with my spine where I imagined it talking to me as a James Bond villain type character "Ahh Mr Spalding, I have been expecting you!" "Please be seated! You're mine now!" He seemed friendly enough!
Often, my peers don't know how it feels to be independent and feel free. They often have dozens of surgeries and rely on 24 hour care from Day One. They physically can't while I could.
Now I 'CAN'T' a lot more of the time and it can be painful psychologically just as it can be frustrating, fundamentally because I WAS so 'capable' for so long. I used to do this and do that. (I won't bore you with that list!) Now I adapt everything and often I just have to look on and accept while others do for me what I could do fine well for myself before. This never gets any easier.
But I'm still lucky. Frustrated but lucky. I have family and friends and memories. Memories I cherish of being able to... - getting myself out of bed washed and dressed in the morning is the kind of memory I'm talking about.
Walking. Just the art of people walking fascinates me still. I still regularly just sit and watch people walking past me, not in any weird, perverse way, and it's usually so effortlessly easy for them. The mechanics involved. It's just what we do!
I too once took what most of you do every day for granted and without thinking too much about it. I miss it terribly. Things would be so much easier. But I have had my time.
Its the everyday normal I miss.. I know what it's like to be just like most of you reading. I feel guilty for that too. Lucky but guilty to have experienced the life I really wasn't supposed to. Guilty that I now miss it. Lucky to have experienced it at all. Guilty that I can no longer just say yes to everything like I used to. But, the luck always overrides the guilt because it just has to, for my own mental well-being. it's very much the case there's an internal battle between luck and guilt taking place day in day out. I do lose control of the internal monologue sometimes. That is when it can be scary.
I'm just about keeping it together.
Writing helps. Writing my memories help. I feel a pride in what I achieved despite being born with SB. It hasn't allowed me to set the heather on fire nor has it amounted to much to write home about. I think often about never really pushing myself or excelling at anything. I was just bang average but there was a whole lot of luck involved in just being that.
It's a quandary I'm in.
I'm hoping I can work some things out here.
I'll just keep writing and see if whatever it is I'm seeking reveals itself and if I can help anyone out there come to terms with things a little more, this helps me too!
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