A Clear Message
Even in the darkness you see inspiration, but only if you look up and stop staring at your feet. Even when the worst of experiences happen, significant loss for example, there are those who have passed that continue to show you the way forward, to escape the darkness when your own life, your own existence becomes too much to bear, too dark to live in. The problem is that one can become overwhelmed by a long term condition, a degenerative condition, significant illness, terminal prognosis, the gloom closes in and it becomes almost normal to look downward and live in a psychologically stunted place where there is only dull light. As the weeks turn into months and even years you simply don’t remember what living in the light is like. The heavy, thick, smoke black clouds gather slowly and simply don’t go away; casting an impenetrable shadow over the ground I look down on. It is so insidious & treacherous as it comes upon you as if invisible, masking your own awareness, fooling your senses, dulling the consciousness of what is occurring, and before you realise it this state has become the norm. The darkness surrounds you, cloaking you, dampening any self-awareness that this state is not natural, choices hidden from your mind by the oppressive dark clouds. You can’t remember when it happened, was it always like this, what was I like before ‘this’, before when I was not disabled, I was not ill, not covered in the dark shroud shielding where light doesn’t penetrate anymore.
Then, from nowhere, silently as the clouds that moved in to make you dwell in shade, when you feel that nothing will change this ‘norm’ you find yourself in, there is a light, just a sliver to start with. You stare hard to try and look at the rapidly gathering rays brilliant light, forming what can only be described as an exit sign, which you can move towards, that you can reach out and even touch. The more you move in its direction, the better the clarity of it, as the light starts to flood your space. At first it is dazzling, even painful to change ones paradigm to accommodate this light, this truth, but you soon adjust, and there you find colours again, not pixelated greys, clear crisp colours forming contrast, depth and distance. Colours that you haven’t seen for so long, it feels as if you are seeing them for the first time, the brilliance of them merging, separating, forming and reforming. The outline of shapes become crisp and it begins to make sense, a door was opened and you have passed through it into the light, the wisdom that has already changed your life, and will continue to do so. The door was opened by someone very special, someone unexpected, a once in a generation person pushed the door open. You hear the message that has been brought to you, accept it as truthful, and immerse yourself in the meaning of what has been shown you, bathing in the light surrounding you. It is as for a moment, a very special moment like you have seen the sun for the first time, felt its warmth upon your face as you look up for the first time for a very long time. You’re not looking down any more, you see what is around you and the future you are yet to write, the message you will contribute to the story started by Stephen Sutton.
I think most would agree that Stephen Sutton, (Stephen’s Story, https://www.youtube.com/watch?v=MvG3ifEd0t0) taught us all a significant amount about dignity and courage at the end of one’s life. As with millions of people, I was captivated by the message he brought to us, the realisation of the narrative he delivered, which keeps replaying in my head like a wakeup call. To paraphrase Stephen very badly he said that we should not measure life in hours, days, months or years; we should measure life in terms of how we have contributed to making this world a better place for us having left our footprints on this society of ours, regardless of how long we are here. Stephen faced his demise from bowel cancer head on and was determined to make the time he had left count, and he really did, over three million pounds he raised for the Teenage Cancer Trust, another £500,000 was added in the 24 hours following the announcement of his death. Once news spread of his passing the sorrow and admiration echoed round and round both social and traditional media.
The out pouring of sadness was palpable, but it was mingled with joy, as he had shed light into many millions of lives. Even as I wrote that word ‘joy’ it seemed wrong but it really is a sense of being better as a result of hearing his message, Stephen’s Story. This remarkable young man came into all our lives and changed our perception, changed our way of thinking about why we are here on this blue planet, what our duty is and not to make excuses. Stephen changed my personal perception of death that it was not to be feared but also the urgency to change, to accept the light into my life and not the gloom of constant pain from disability, both physical and psychological. Stephen was crystal clear that we have a duty to make a positive contribution to our society, our neighbours, our community, no ifs or buts, “If I can do this facing cancer, anyone can.” It was a simple as that, we must leave a positive balance from our time before the clock stops ticking and we pass away to another place. This young man went through the hell of bowel cancer and did not complain, just set his mind on a list of things he wanted to do, turning them into a way of raising money for the Teenage Cancer Trust, and got on with it. Stephen was a messenger and I was privileged to hear and understand his aim.
To do this, to really take on board his message I guess a level of self-examination was needed, after all the light was now on and I needed to see where I was. It wasn’t a pleasant experience, self-realisation can be as painful as my disability, especially when I realise that compared to Stephen I may have squandered a good proportion of my life. Yes I have been extremely fortunate in many ways, I have a Wife that could only be described as an angel, a proud Father of two adults, and nothing could ever better the love I have been given by them unconditionally and unreservedly since Christmas Eve 1986. But this foundation of love did not stop my pursuit of money, status, achievements, wasted career years, wasted. Stephen’s Story was a wakeup call, making me look up to the possibilities that were all around me, rather than be morose about the terrible situation I am in and into which I have dragged my family. No more dwelling on one’s own misery, Stephen was right, it is a waste of a life to live within the dark, my family deserve far better, and the reality was that it was down to me to do something about it. Only by focussing on moving and staying in the light, bathed in the colour of countless possibilities, can I leave behind the most unpleasant phase of my life and the effect it has had on my family.
Through Stephen’s bucket-list he demonstrated that the only person standing in your way to doing something positive, to contribute to your society, is you. Now that sounds like the obvious I am sure, but the way Stephen demonstrated this philosophy, this way of living despite the circumstances you are in, despite the possibility of death, was a revelation. This young man had just weeks to live and achieved more in this short period of time than I have in the last 25 years, simply remarkable and utterly captivating. He didn’t convince you that you had a choice; he made you believe that this was something you had a moral imperative to deliver without excuses. So this is what I am going to do, I am going to make a positive difference to the society we belong to, leaving a legacy that I can be proud of and not based on wealth, but on the good that has been done. Time to increase that positive karma, stop wasting time, support others to do the same and have fun doing it, it’s not penance, it’s supposed to be positive. Thank you Stephen your message is received and understood, rest peacefully now you live on in our thoughts and your example lives on through our deeds, inspired by you.
Yours most sincerely
Smiling Cat Ventures (www.smilingcatventures.org)
Innovative Minds @ Work (www.innovativemindsatwork.org)
Mind the Step (improving accessibility)
Able Politics (increasing disabled peoples engagement in politics)
Face Book: Disability in Business
Linked-In: Jonathan Wade (Innovative Minds at Work)