Richard Branson once put me to sleep. Allow me to explain…
May 12th is M.E. Awareness Day, and this week commemorates M.E. Awareness Week. The day also includes Fibromyalgia in the same regard, given how many overlaps there are in the conditions. The delicious irony is that most of us that suffer with these overlooked, and often stigmatised illnesses, will not get to see an awareness effort; it will be another week of living behind a shroud, and living up to the characterisation of an invisible illness in silence.
This year marks the 25th anniversary of my own diagnosis of M.E, or Myalgic Encephalomyelitis as I often don’t say through fear of it being a tongue-twisting monstrosity.
As a 10 year old, I went through the rigmarole of having more hospital appointments than I had days at school. Much like now, I was a total ghost in my childhood, the spectre of a boy that only appeared on rare occasions. Like a quarter of a million in the UK, and one million people in the U.S who have the disease, isolation defined school days as much as it continues to define to rest of life.
Two and half decades on and I still have the full weight of M.E. crushing down. I would like to put the brakes on at this point to deviate away from the possible earnest themes that I may be projecting. I do not want to paint a picture of self-pity or sympathy. Like any one of us, pride is a tenuous thing to hold onto; the stark honesty of words could well betray sincere intentions.
I’ve found that humour can often be the by-product of desperation – thinking outside the box and embracing unorthodoxy is not always a bad thing. I’m reminded of the film/book ‘Warm Bodies’ – a story about a group of zombies who try to coexist with their human counterparts. And yes, I did just refer to myself as a zombie. Not only are the parallels of the walking dead quite apparent, but the ongoing panic of, “Quick, say something human!” rings in my ears every time I try to appear ‘normal’ in a rare social scenario. Those of us with enigmatic disability are quite adroit at wearing a fortified mask.
So, what is M.E? Well, it plain old sucks – no more adjectives required. All too often, society and the medical profession alike still treat the illness with flippancy. You’re just a bit tired? Have a nap then. We are conditioned to think of illness in linear terms.
Symptoms take a physical effect and leave a tangible impact, but M.E. is the silent assassin. It is an all-out battle beneath the skin.
Pain is often so deep and indescribable that the mere feeling of clothes is enough to make one attempt to climb the walls. Then there’s the confusion, an almost cerebral, dream-state existence; exhaustion is a word that we’ve come to overuse, but definable exhaustion is a feeling that hits you in every muscle and makes one feel as if they’re in a pressured realm that’s surely only comparable to that of a literal abyss. M.E. can also make you talk utter gobbledygook – words lose meaning, and often with amusing results if you can override the embarrassment.
New films such as Voices From the Shadows, and the upcoming documentaries Canary in a Coal Mine and Forgotten Plague will surely go a long way in helping chart the course of understanding which currently lacks in this unnavigable subject. Having had the privilege of working on and alongside successful films myself, I know the importance of palpable stories. It’s easier for us to understand when we’re faced with real people over cold concepts.
I had the privilege of meeting both Sam and Richard Branson at the Breaking the Taboo premiere in 2011, both of whom were every bit as welcoming and easy-going as you’d expect, but it was during the filming of The Culture High that I got to spend time with Richard.
We received an invite to film Richard at his children's home; it was a beautiful morning. My fears of an encroaching migraine owing to light sensitivity were becoming an overriding factor – I knew I had only minutes of being human left. As for many people my age, Richard is as familiar a face as a family member. Between his calming demeanour, the sound and familiarity of his voice, the setting, and the abject exhaustion that was surging through me, I began to doze!
“Quick, emergency, be human, Jason!” As any M.E. sufferer will know, to actually get to sleep is the stuff of whispers, but as Richard continued to talk, I was totally at ease and quietly started to drift off. This is a memory of absolute ambiguity. I can still feel the rarity of this enveloped comfort that I felt during that moment, mixed with the horror of retrospect that I knew I would surely feel. I know I’m lucky to have such a fond memory when so few get any release from their own anatomical prisons.
I had hoped that I would be making an official announcement to mark M.E. Awareness Week, but irony strikes again. For my 25th anniversary, I plan to do a fundraising walk – a mile for each year. 25 miles is quite frankly a ridiculous and foolhardy thing to attempt for anyone with M.E, and I state that I do not advise this and refuse to allow this to act as a yardstick sentiment that many people with severe illness are subjected to. Nevertheless, I shall be going ahead – against better judgements. It’ll be on M.E’s terms – the best that I can do, with further emboldened irony, is that this is an announcement of an announcement that will follow. Oh the joys of perpetual unpredictability!
The overbearing point that I make is that M.E. besieges lives in ways that are hard to convey – it can put you in an abstract dormancy and slumber whilst simultaneously shattering dreams. Despite having written numerous articles and blogs on an array of subjects, I still struggle to find the right words when writing about M.E. Each cold line of text seems futile and insignificant in comparison to what so many people go through in each passing minute of sheer hell.
To all that have M.E. and Fibromyalgia, and to those families that suffer alongside in equal measure, here’s to a week of breaking the silence and best of luck in the ceaseless attempts to become slightly more human.