A Journey through a life 1952 – 2017
4 March 2008 was the first time I had ever heard the words Multiple System Atrophy used to describe a medical condition.
The Professor spoke slowly and clearly “It is like Parkinsons but generally acts more quickly. Your entire range of bodily functions will shut down over a period, and early onset Alzheimer’s is very likely”
“Life expectancy is 7 to 9 years but your ability to walk, talk, eat and go to the toilet will gradually degenerate over this period”
The thought of losing control over my body frightened the shit out of me, but at this stage, it was just one of three possibilities. It would be another 18 months before the verdict was confirmed.
In the meantime, there was the small need to try and reduce the raging inflammation in my brain so we could see what was going on.
Months of headaches, stumbles, bruised and battered limbs, acute tiredness and loss of balance had brought Billy and I to the Professors rooms.
An MRI and then; an urgent second one had confirmed my brain was not in good shape
If we succeeded in reducing the swelling, there was a good chance I could make a full recovery, if we couldn’t, I would be dead in a matter of months and MSA would be the least of my worries.
Billy, and I, sat in the Professor’s office and listened as he mapped out a future we could not even begin to comprehend.
The Professor pointed to the screen where the MRI displayed different cuts of my brain, I had no idea what a brain was meant to look like, but I soon learned white spots were not meant to be part of a healthy organ.
I was almost relieved, at last we had some answers and we had something to fight.
The first battle was to try and stop the poison from getting to the brain so we could reduce the swelling. The dim and dark prognosis for MSA would mean nothing, if we could not do this.
The Professor outlined a treatment program and we would monitor the progress with an MRI every three months.
I had fucked up so many things in my life;
I had allowed an isolated and violent childhood, homophobic bullying, sexual abuse and a family history of mental illness to derail my life at critical points.
Those pivotal moments, when decisions are made that truly shape the future.
I had tasted success beyond my dreams, but had been brought undone by feelings of worthlessness and the ghosts of my past.
This was different.
The ghosts of the past were meaningless, this was not my fault and there was nowhere to hide.
This was to be the first battle I had ever fought without shame or fear of the past.
Everything was focused on the future, the past was gone and for once in my life, I was on an equal footing with anyone else who has faced something like this.
There was a strange euphoria in this and in many ways, I felt my life was just beginning.
I had a loving family, I had a partner, I was stronger than I had ever been.
I turned 60 in 2012, I was meant to be eating my birthday cake with a straw and to not even have the capacity to wipe my own arse.
I have just celebrated my 65th Birthday looms and I am still here.
I am tired, so bloody tired, my legs don’t work properly, I can remember fifty years ago, but, not what occurred in the last 50 seconds, my hands don’t do what the brain tells them, typing is hell and my bladder is a bastard.
But; I am still here and I can still wipe my own arse; just in case you were wondering!
“You cannot change the past but you can destroy the present by worrying too much about the future”
Billy and I saw these words on a hotel wall at Kamala Beach, Thailand.
This simple Buddhist saying has become our mantra, it has become the reason for this Journal of letters, some of which have been sent to the people I love, some of which are addressed to people long departed this mortal coil and some are written in anger.
It has surprised me, as I have trawled my past via these letters, just how few are truly written in anger.
I know I cannot change the past and my future does not bear thinking about. I only have the present and my present is damn good, it would be wonderful, were it not for the odious worm slowly chewing through my brain.
Early in 2016 as the darkness slowly swirled, I embarked on a journey to tilt at the windmills of the past.
I don’t want to change it, but I do need to understand it. I need my family and those I love to truly know the person I have become and how I have arrived at this destination.
I decided to make my journal a series of letters, letters to mark the major turning points of my life, letters addressed to the people who for better or worse, were with me at the time. Some of these people are long dead, some I have lost contact with, and many; are still an integral and wonderful part of my life.
Letters that convey love and futility, friendship and fear, thanks and anger, foibles and frustration.
In writing this journal of letters, I have become increasingly aware of the shallowness of many of the issues I speak about.
I live in a first world Country, I am not a famous personality, I am not a starving refugee stuck in an inhuman detention camp, I do not wake up every day wondering whether my life or, that of my family; will be stolen by indiscriminate bombing raids, I do not go to bed hungry and wake up to the desperate need to find enough food to get us through the coming day, I have not faced an Authoritarian regime where my “sins” are prescribed by religious fervor or bigotry and are punishable by death.
In this world, we live in.
A world where we now have a narcissistic, bag of bombast elevated to the Presidency of the leading Nation, a world where greed and self-interest seems to have trumped decency, a world where tolerance for others has reached an all-time low and a world where inequality is seen as a right by those at the top of the tree.
In this world; my story seems to be so inconsequential, so why bother writing it?
There have been many times I have questioned my own vapidity and have been tempted to consign my scribbles to the recycle bin.
I have not done this, because I live in the vain hope, that if we can expose intolerance and bigotry in our privileged world, we can do more to destroy these evils in the wider world, or; at least we can approach these issues with a clearer conscience.
I have not burnt my ramblings, because there are people who love me and I have loved. Their story of love, hope and tolerance deserves to be told to a wider audience, these people have humbled me, I hope their story can humble others.
I have persisted, because there are still children growing up in our privileged world who are frightened of who they are, they live in fear of their deepest secrets becoming the subject of ridicule and worse.
Their fear should be our shame.
I have kept going, because I want to see a society questioning inequality and intolerance, rather than succumbing to its simplistic allure.
I have stayed the course, because I hope my tiny pebble can rattle at least one window, causing someone to open the blinds and let the sunshine in, even if; only for a moment.
Whilst I am a gay man, these letters deal with many more issues than gay acceptance.
They deal with the pain of a brutal and isolated childhood.
They deal with childhood sexual abuse
They deal with the effects of depression, bigotry and intolerance.
They map my path to acceptance of myself.
They pay homage to the good people who have pulled me from the brink on too many occasions
They deal with a husband and wife striving to maintain their love in the face of insurmountable obstacles.
They deal with the joy, pain and love of children.
They deal with the search for honesty in our lives.
They deal with the ambitions of a man who allowed his life to be destroyed by bigotry and his own weakness.
They deal with disease and the fight to beat the odds.
They deal with depression and its insidious, destructive path.
They deal with hope, even when there is no hope.