I have said ‘’no thank you’’ more times than anyone could remember. I do not know why I said yes on this occasion. To be invited out by someone I had once known so well, so long ago, felt like life had stopped by and offered me a lift. That in some small way I was still, if not loved, then cared for. That said, I met his invitation with fierce resistance. I articulated my position with such stridency, that I was in no doubt that a second invitation was never going to be a possibility. It’s almost as if, whatever shocking revelation I had first shared with him about this illness, it had lost its resonance.
It could be that he simply no longer believed me. I was, after all, still alive.
The narrative is so predictable. An illness that tastes like the bitterness of a wasted existence.
Why would I want to put myself through such an ordeal ? Why would I want to act out such a well worn scene, that I knew would cause me so much pain and suffering ?
A few days later I was there, a restaurant of some repute.
I sat close to a radiator. The high beamed rooms were dimly lit, and it was quiet. I had a chance. One hundred and twenty minutes, and ten had already gone.
I smiled when expected to, and furrowed my brow whenever the subject broached a matter requiring my full attention.
I tried to act interesting, jovial, at ease with my peers, but the signs were there. I was beginning to wilt.
I could see the illness sat at the bar, a cigar in one hand, and a fine malt whiskey in the other. Only one of us was picking up that tab, and it wasn't it.
I was beginning to struggle. If I was a marathon runner I would be hitting the wall.
I was like a ten ton truck struggling to crawl up a steep incline, carrying a cargo of heavily weighted expectation, with almost no fuel left. I knew with every passing minute that I was self harming; that tomorrow, and for days, even weeks to come I would be left to pay a debt I couldn’t afford. Days of silence, little or no TV, no radio, lots of rest, water, painkillers. More rest, suffering, and more suffering.
I have often heard it said that you can manage this illness, but after many years I have come to the conclusion that you don’t manage it, it manages you. You don’t fight it, because it beats you up every day and you don’t come to terms with it because it sets the terms, it sets the conditions.
There came a point, and I am not sure when, that I no longer gave a shit about anything. I was going to suffer anyway, so why not, just for a few hours, stick two fingers to it at the bar, and take myself to another place, a place where it couldn’t find me.
But it followed me, and it found me. And it finds us because it never loses sight of us. Only now it decided to change its terms and conditions.
It had laced up it’s gloves and was heading in my direction.
The restaurant had began to fill up. An occasional shriek of laughter felt like it might stop my heart, and the scraping of plates pounded my ear drums. The brightening lights that felt like a search light shining into the eyes of a man who had been caught trying to escape a maximum security jail almost brought me to my knees.
I felt a numbness that bordered on the hypnotic. I fancied that, were an aeroplane to crash land in that very car park, I would sit motionless, immune from shock, whilst others ran for their lives.
Every conversation became an agony. Every attempt to smile became a test of endurance. Every eye contact seemed like an interrogation.
I involuntarily assumed the countenance of a troubled man attempting to conceal some terrible secret.
In truth I had almost lost control of the vehicle I was driving and I was about to leave the road and crash down the steepest of ravines.
I made my way to the toilet. This was time out, my half time, and a chance to regroup. I washed my face more than a dozen times, and played for time. I sat on the toilet and thought about tabby’s star, a mysterious star to be found some fifteen hundred light years away. I thought about life after death, and if there really is something more than this.
And my father, where was he, what was he doing. Was he still alive after dying some seventeen years ago.
Finding it difficult to make eye contact I walked with my head down, meandering through the crowds, ignoring the incongruent musings of the masses, before finding my way home. I sat down and smiled. Regenerated, and rejuvenated, I could see the top of that hill, and I knew then that I was going to make it.
Foot down into second gear, I interject, and for a few seconds become the gravitational pull on everyone’s attention. An expression of surprise stretched across their faces, reflected only in a sense of satisfaction that stretched across mine.
Over that hill, and down, I had made it. I did it. Only I will ever know what I went through.
But I did it. I made it. I climbed that mountain. And I did it whilst feeling more dead than alive.
Some days and weeks passed. I reflected back on those few hours. I couldn’t help feeling; just think what we could do, what we could achieve, if we were able to lead normal, healthy lives.
It could be that he simply no longer believed me. I was, after all, still alive.
The narrative is so predictable. An illness that tastes like the bitterness of a wasted existence.
Why would I want to put myself through such an ordeal ? Why would I want to act out such a well worn scene, that I knew would cause me so much pain and suffering ?
A few days later I was there, a restaurant of some repute.
I sat close to a radiator. The high beamed rooms were dimly lit, and it was quiet. I had a chance. One hundred and twenty minutes, and ten had already gone.
I smiled when expected to, and furrowed my brow whenever the subject broached a matter requiring my full attention.
I tried to act interesting, jovial, at ease with my peers, but the signs were there. I was beginning to wilt.
I could see the illness sat at the bar, a cigar in one hand, and a fine malt whiskey in the other. Only one of us was picking up that tab, and it wasn't it.
I was beginning to struggle. If I was a marathon runner I would be hitting the wall.
I was like a ten ton truck struggling to crawl up a steep incline, carrying a cargo of heavily weighted expectation, with almost no fuel left. I knew with every passing minute that I was self harming; that tomorrow, and for days, even weeks to come I would be left to pay a debt I couldn’t afford. Days of silence, little or no TV, no radio, lots of rest, water, painkillers. More rest, suffering, and more suffering.
I have often heard it said that you can manage this illness, but after many years I have come to the conclusion that you don’t manage it, it manages you. You don’t fight it, because it beats you up every day and you don’t come to terms with it because it sets the terms, it sets the conditions.
There came a point, and I am not sure when, that I no longer gave a shit about anything. I was going to suffer anyway, so why not, just for a few hours, stick two fingers to it at the bar, and take myself to another place, a place where it couldn’t find me.
But it followed me, and it found me. And it finds us because it never loses sight of us. Only now it decided to change its terms and conditions.
It had laced up it’s gloves and was heading in my direction.
The restaurant had began to fill up. An occasional shriek of laughter felt like it might stop my heart, and the scraping of plates pounded my ear drums. The brightening lights that felt like a search light shining into the eyes of a man who had been caught trying to escape a maximum security jail almost brought me to my knees.
I felt a numbness that bordered on the hypnotic. I fancied that, were an aeroplane to crash land in that very car park, I would sit motionless, immune from shock, whilst others ran for their lives.
Every conversation became an agony. Every attempt to smile became a test of endurance. Every eye contact seemed like an interrogation.
I involuntarily assumed the countenance of a troubled man attempting to conceal some terrible secret.
In truth I had almost lost control of the vehicle I was driving and I was about to leave the road and crash down the steepest of ravines.
I made my way to the toilet. This was time out, my half time, and a chance to regroup. I washed my face more than a dozen times, and played for time. I sat on the toilet and thought about tabby’s star, a mysterious star to be found some fifteen hundred light years away. I thought about life after death, and if there really is something more than this.
And my father, where was he, what was he doing. Was he still alive after dying some seventeen years ago.
Finding it difficult to make eye contact I walked with my head down, meandering through the crowds, ignoring the incongruent musings of the masses, before finding my way home. I sat down and smiled. Regenerated, and rejuvenated, I could see the top of that hill, and I knew then that I was going to make it.
Foot down into second gear, I interject, and for a few seconds become the gravitational pull on everyone’s attention. An expression of surprise stretched across their faces, reflected only in a sense of satisfaction that stretched across mine.
Over that hill, and down, I had made it. I did it. Only I will ever know what I went through.
But I did it. I made it. I climbed that mountain. And I did it whilst feeling more dead than alive.
Some days and weeks passed. I reflected back on those few hours. I couldn’t help feeling; just think what we could do, what we could achieve, if we were able to lead normal, healthy lives.
