Hope is a strange commodity that professionals sometimes give out as if it is another form of medication, but in reality I don’t allow myself to indulge in ‘hope’ as it can cut deeper than any knife, hurt more than any wound or injury, especially when hope evaporates, burnt off like the dawn’s mist by the summer sun. Only with this evaporation there is no warmth to follow, no Mr Blue Sky, no bronzing of UK white flesh exposed to rays. Allowing hope just invites hurt. It is similar to driving; the wonderful sense of freedom one has behind the wheel is equally negatively matched with the reality that you will have an accident, which at the very minimum will shock your confidence to the floor and remove all enjoyment of driving.
But hope can be an insidious quantity that can find its way in as stealth-like as the finest Raffles Cat Burglar, as with the skilled thief it can also take your motivation as all trace of hope leaves without any forensic evidence it was ever there.
There was a time my hopes and dreams were global in nature, probably matching my ego, but this was all before M.S.O.A (metal strapped on arse). Foolishness, over confidence, complete self-belief and even total self-reliance were all phrases I used to describe myself and others used when talking about me; whatever I did I reached the very top of the profession concerned. Like most successful people I had such plans for the future, such hopes on a galactic scale and not a single doubt they were attainable. Why would I have doubt I had exceeded all expectations, including my own. I recall lying next to my Angel, as she slept with the book she had been reading before her mind went into stand-by, on her face, that there was nothing I couldn’t attain if I focussed on getting there. As all the evidence confirmed, to my self serving egocentric mind, that I achieved all I put my mind to, so ‘hope’ was as bountiful as any harvest festival service or as any Christmas day family meal with all the trimmings. But, with hindsight of course, all bountiful blessings come to an end. All egocentric personalities implode, all hope slips away as silently as stardust floating away freely in the great cosmos we reside in.
As my condition progressed my ability to look and plan for the future reduced, almost in equal measures. As prepared as I was for what was to come, what I hadn’t realised was that hope, the dreams for the future hope gives rise to, gives birth and life to, becomes a less frequent visitor to a mind sinking under the degradation brought on by disability, immobility and inability to self-care. Dignity becomes buried under the rubble created by the demolition ball of daily humiliation, and I also realise what also lay K.I.A. (killed in action), under the rubble was any sense of hope.
When one does find hope slipping into one’s mind, not with any conscious recognition that it’s there, one gets floored and so very hurt when it is clear it was a false hope. For example, the greatest lost hope for people with spinal cord base conditions was stem cell research. It was hailed for years in the media and amongst so many professional networks as a golden bullet that could allow people to walk again, regain control of one’s lower half of the body, repair the damage that had been done, or even completely replace the damage for new healthy cells, tissues and nerves. Manipulation of stem cells, even with all the pro-life campaigning against stem cell research shouting so loudly, was a shining beacon of hope that so many people kept going for thousands, perhaps millions.
Ten years on and that once blinding beacon of hope in now faded into a black-hole which draws in questions such as, “What happened, guys?”, or “Where are the miracle cures that you promised?”, and as with all black-holes everything is sucked in but nothing ever escapes from it. Stem cell research has been am unimaginable disappointment to people with spinal injuries & related conditions, and any hope was not only pulled into the blackness but also made one so very resistant to believe in hope in the future.
The best way I can illustrate this is by discussing a recent news item I became excited about, knowing I should know better. The more I listened, the bigger hope grew. The news item was about a dog that had damage to its spine leaving it unable to use its back legs. It certainly made one go “Aaah” at how cute the mutt was. The reporter then talked about how cells had been taken from the pooch’s nasal lining (ouch), grown in a lab and finally injected into the spine and into the site of the injury, as well as above and below this site. Over time the back legs, via the spinal cord, were able to function with the front legs. Even though the mutt was somewhat shaky, almost drunk like in its walking, it was definitely walking – I WAS AMAZED!
Finally there was hope, real hope. It was there in front of me on the television, no doubts, actual proof and, for a moment, a wonderful real hope my hell and the hell of others may be at an end. Of course, I knew it would take a few years to allow testing on humans, hell, I even thought of volunteering, but this was pure diamond bright Hope with a big, fat capital ‘H’.
I’m not sure what happened but the last 30 seconds of the news article thundered in my mind like dynamite exploding in my head; the journalist and researcher said that although significant progress was evident, the back legs had not been able to make a connection with the brain of the pooch, and there you had it – BOOM!
Hope, that fickle yet essential element to be able to keep going no matter what life throws at you, was gone as instantly as it had arrived via the news. In the space of a 4 minute news item I dared to hope I may walk again. To be trebuchet into the middle of despair and self-loathing for being so stupid to allow hope to reside with me, if only for a few minutes. I knew better, stupid, stupid, stupid. You see, when you have such an all-consuming disability hope isn’t just a figure of speech, isn’t just a list to give to father Christmas; to someone like me it is the merest glimmer that something may improve my condition, the slightest glimmer of chance. P.M.S.O.A (post metal strapped on arse). A glimmer of hope that my quality of life may improve. This word ‘hope’ is of such importance that I don’t think I could tolerate having it dangled in front of me and yet again have it evaporate. It’s just too painful and hurts so deeply that I actually think life without hope is better than it being just beyond my outstretched finger tips. This is just torture!
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