Last night the film ‘A Long Walk To Freedom’, based on the autobiography of Nelson Mandela, was shown on TV. I’d already seen it but watched it again as, due to my terrible memory, I couldn’t remember seeing it when it was first released. When Nelson was a younger man he wasn’t exactly angelic and his first wife left him after one affair and one beating too many. Then, after one massacre by the whites too many, Nelson decided armed conflict was the only route open to his people – he then trained in weapons and explosives and the ANC started fighting back. As he says himself, 50 years of peaceful protest had gotten black South Africans nowhere – what else could he do?
After 27 years of captivity, release saw Nelson a different man who went on TV stating that “peace is the only way forward”, despite his wife and some of the other men with whom he was imprisoned disagreeing and wanting revenge on the unfair, unjust, tortuous and murderous white ruling class. In fact, it was largely the disagreement on peace v revenge which ended Nelson and Winnie’s marriage, not Nelson’s years of imprisonment. I wonder if, had Nelson not been incarcerated, whether the ending of his, and ultimately South Africa’s, story would have been wildly different? If he’d not had time to be introspective, to age and to grow in wisdom.
I can’t think of a time in history where violence and hate has ever ended well. I can however think of times when peaceful but intelligent and determined opposition has ended well: the end of Apartheid in South Africa; the liberation of India from the British; the end of black segregation in America; and negotiation finally ended The Troubles in Northern Ireland after decades of unimaginable violence.
In my own little way I feel kinship with Nelson Mandela. I, too, have lost 22 years of my life much of that time spent in solitary confinement in a tiny room, cut off from the outside world as I was too ill to watch the TV, listen to the radio, or converse with my fellow man. My body has been tortured, my mind tested to the limits of endurance and my spirit broken. My Councillor asked me the other week how on earth I endured 10 years of being bedridden and in almost total isolation without losing my mind and my answer was “I have no idea”. Like Nelson, I spent the first 6 years fighting my disease only to finally reach acceptance that battle was futile and I had to learn not only to co-exist with my illness but to live joyfully despite it, just as Nelson initially battled with his captors only to eventually befriend them.
And in its own way, the M.E. community has been waging a war with the health establishment, just as the ANC fought a war with the ruling establishment. For the two decades I’ve been sick I’ve lost count of the times my symptoms have been attributed to psychological factors and I’ve been diagnosed with everything from anorexia nervosa to plain old stress when I was clearly so ill I was at death’s door. The rage I still feel at the unfairness of this and the lack of treatment for my physical distress, at times, overwhelms me and I admit there have been days I’ve lain in my bed and wished physical harm on some of the doctors and health professionals I’ve seen. However, hate is not the way forward. The rage of hate clouds your judgement and your actions and ultimately only hurts you:
“hate is like drinking poison and expecting the other person to die”.
I’ve never agreed with the way some members of the M.E. community have treated those doctors who oppose the view that M.E. is purely physical – the death threats and the vitriol on social media sickens me (and I’m sick enough already). It’s clear from reading Facebook and forum posts that there is a small section of the M.E. community who are consumed with rage and they cannot be reasoned with. They think their anger helps our cause but it does the complete opposite and re-enforces the view we are all emotionally unstable. The same names come up time and time again spouting the same old arguments and even I think “oh do shut the fuck up!”
Thankfully we have some Mandelas in our midst. People like Jen Brea who got off her extremely ill backside to make a film about our disease in a calm, reasoned and rational way, an attitude which prevailed over the anger I’m sure she also feels and bitching judgement from some M.E. patients. Charities like the ME Association who aren’t perfect but who have spent 30 years plugging away and trying to raise the profile of the disease against massive opposition from the medical establishment and some bitching whinging patients. Researchers and clinicians who, despite ridicule, lack of funding and court orders, have stuck their necks out and tried to find a physical explanation for our symptoms. And patients themselves who volunteer their time and experience in a myriad of ways to help their fellow sufferers, despite being verbally attacked by some of them.
Like Ghandi, Martin Luther King and Mandela’s faith that they would win freedom for their people, my faith that a cause for M.E. will be found has never wavered. Neither has my anger at the appalling lack of even basic care and compassion I, and my fellow severe sufferers, have endured over the decades. However, anger does not consume me. I see the tide slowly turning and I am hopeful for the future. The truth will out and we will see vindication.