This is a personal entry – nothing to do with photography, but just something of a personal journey.
Pain. Physical pain. It is inevitable. Pain is there as a reminder that something, somewhere, is up the creek. Pain is your friend. Without pain, you would not know that something is amiss somewhere. That cut on your finger? Yeah, it hurts real bad, maybe you need a stitch or two! That sprained ankle – yeah, the pain is real bad, gonna need a cast or, nah, its only twisted, swear a few times and jump on one leg for a bit, within 5 minutes you will be walking fine again. Pain is there as a measurement of how badly you are injured.
I live with physical pain on an almost daily basis. I have something that is known as fibromyalgia, and it is not completely understood yet. Many health professionals claims it does not exist, and it is psychosomatic. Some claim it is a neurological disease. Other research claims it has to do with an excess of nerve fibres in the blood vessels in the hands. None of these make sense, all of them make sense, but we do know that we haven’t nailed this thing down yet. But one thing is certain: it bloody hurts.
Some days more than others. Sometimes, I’m fit as a fiddle and these pain-free times I’m grateful for. When the pain free days come, I don’t think of it as a pause, knowing that the bad days will come again, I just enjoy the good days – make hay while the sun shines, they say. Other days, I go into what I term “attack” mode. It’s as if my entire body just shuts down. It usually starts in my jaw joint… then my hands follow, then my feet, and pretty soon, I walk like Robocop… bzzzt bzzzt! Its almost a joke in my house – no, not almost, it is a joke. I walk down the hallway after making my wife her morning cup of tea and make “bzzzt bzzzt” noises: “Tea for you, Murphy” (Apologies to the millennials who don’t get the reference) .
I joke about it, because I choose to. The pain is usually a dull undercurrent – a constant awareness of “ouch”, but it’s not crippling. Other times, it can get quite severe, hooking my hands into claws and making any type of keyboard work impossible. The soles of my feet hurt so badly that I cannot walk – the pressure of the floor from my bodyweight is excruciating. I wear out memory-foam slippers like it’s going out of style – not that memory foam slippers ever were in style… Humour is a shield. I laugh at my pain, because it’s how I cope with adversity. “Feels like I slept in a barbed wire sleeping bag last night” I’ll say. I make up puns. I joke about my inability to wipe my own ass.
But sometimes, this does not last, and the pain gets to such an extent that the shield of humour does not hold up to the constant barrage of pain. Pain that is so severe, that it can only be understood in three understated words: “I am sore”. No euphemism, no hyperbole, no adjectives.. just a simple, efficient statement of fact. “I am sore”. A soreness that has my hands being useless, my body refusing to work, and a constant iron band clamped around my skull.
But that’s not the worst of it – the worst of it is the dumbness that comes with it. They call it “fibro fog”, when I can almost literally feel my IQ dropping. I think slowly. I get words mixed up, if I can get to the word at all. I leave sentences unfinished. I’ve forgotten. I’d look at the world sometimes and feel confused by it, and feel like David Byrne – this is not my beautiful wife… this is not my beautiful house…
This is pain
But what it is not, is suffering.
Pain is inevitable, but suffering is a human construct. It is pain with a thought attached. I want to state here, categorically, that I have fibromyalgia. I do not suffer from fibromyalgia. I have constant pain – sometimes debilitating pain, but I do not suffer pain. I will not call myself a “survivor”, for that is over-stating the case – fibro will not kill me, so I cannot survive it. I have fibro, as simple as that.
Fibro is a constant factor in my life. But I have fibro the way I have blue eyes, and a bald spot. It’s just something I have. I am not defined by it. I am not suffering from it. I am not a victim. I am not unlucky. I am defined by that which I do: I’m a husband to my wife. I try to be a good father to my doggies (which sometimes means not killing them!) I’m a teacher. A photographer. A writer. I love cricket and a good TV drama. I love good food and cooking it, as my waistline can attest. I love long conversations – “deep meaningless conversations” as my pal Lizanne calls them. I do not like Pina Coladas and walks in the rain – I’m not that masochistic. I’m just a man, with everything that it entails, all the implied strengths and weaknesses. To misquote Sue Perkins: me having fibro is about the 47th most interesting thing about me. It will not define me.
But just because it’s fairly low on the list of things that makes me interesting, does not mean it is not there. I have fibro. And some days, like today, it become so overwhelming that I write a thousand-word essay on it just so I can make sense of it. Other days I hurt so bad, writing becomes unthinkable. Other days I don’t hurt at all and writing becomes unnecessary. On days like this, I wonder how I’m going to make it to bed o’clock tonight when its barely 6:00 AM. On days like this, it gets pretty bloody crappy.
My fibro will knock me down, will make me make silly jokes, it will even make me cry, but it will never make me suffer. It will never stop me from making my wife her morning cup of tea, no matter how sore I am. It will never make me not love a long conversation, no matter how tight my jaw may get. It will never destroy my love for good food, no matter how difficult the act of eating is. It will never stop me from writing, even if I cannot operate keyboard. It will never stop me teaching – as in the profile post above – despite the fact that the floor beneath my feet feels like a bed of nails.
It may punish me in cruel ways that will bring tears to my eyes, but it will never – ever – make me suffer.