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Slowly you claw your way up from the depths of sleep. In the dark abyss of dreams the pain was a dim, dull thing; present but possible to ignore. As awareness returns to your senses you feel it tear through your jaw, your cheek, your ears, until the whole of your reality is reduced to that cluster of cells. Once, during an exam, the nurse, determined in the way of medical people to classify everything in neat columns, asked you to describe the pain. Was it throbbing, burning, or aching? Did the pain stab into you or pulse along your body? Was it a steady beat or did it wax and wane over time? You struggled to explain, to separate the orchestra of sensations into their different types. Frustration tenses your muscles, your eyes narrow, your brow furrows. You've lived with the pain for so long – how can it be that you can’t put to words how it feels?

KosAbility logoKosAbility is a Sunday 7pm eastkost/4pm leftkost volunteer diarist series, as a community for people living with disabilities, who love someone with a disability, or who want to know more about the issues. Our use of "disability" includes temporary as well as permanent health/medical conditions, from small, gnawing problems to major, life-threatening ones. Our use of "love someone" extends to cherished members of other species.

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The pain shoots its way up your jaw line, leaving a steady beating ache in its wake. Along the upper gums in your mouth searing acid works its way from tooth to tooth. You can feel the pulse of it in your ear canal, drifting up to that place behind your eyes where the pain drifts in and out in a steady tide that the Pacific Ocean would envy. You are not surprised to wake this way. The pain has been your stalker, your companion, your tormentor, a singular presence in your life more reliable than the sunrise, for more than a year. It’s possible at this stage in your life were the pain to leave you would find yourself unable to understand the world. In its own insidious way the pain has become your world, as defining a feature as gravity and just as inescapable.

You take a deep breath and sit up, reaching around to the night stand. The fat, white bottle of Tylenol sits there like cheese in a mouse trap, promising some minor relief now in exchange for the steady poisoning of your liver. You dump four pills into your hand and swallow them quickly, leaning back into bed to wait for the magic of medicine to take effect. A minute goes by, then three, then eight. After fifteen minutes – was it only fifteen minutes; the clock says so but you’d willingly take an oath it was at least two hours – the sensation abates just enough for you to struggle back to a sitting position. Sunlight is filtering through the blinds. Outside you can hear the kids tossing their ball in the baking July sun. You almost smile but don’t quite make it. A burst of agony moves through your cheek reminding you that the trials of a whole day lay before you. You take a deep breath and the thought which has come to you every morning since the turn of the New Year skitters across your mind again. Please let me have enough strength to see the day through with decency and dignity.

You swing your legs over the side of the bed setting your feet on the floor. The Tylenol fuzzed the sharper edges of the pain, just enough so that you can stumble through the things you have to do. At the forefront of your thoughts is the list of things you want to accomplish, but behind that is the ever-present mantra, less refined than your morning prayer – please don’t let the pain turn me into a royal bitch.

That simple wish stays with you all day. You get some things done and neglect others. At about midday your roommate asks you why you never seem to make your bed anymore. For a moment you consider screaming in frustration, enumerating the thousand and one things you do manage to do, lambasting the shortsightedness of people who can only see what is left undone. But the thought comes again; don’t let the pain turn me into a royal bitch, so you bite back your irritation and make a noncommittal reply. Your roommate frowns down at you for a few minutes, sighs and leaves the room.

You fight this war, a war of two fronts, every day. You have no real choice but to cope with the pain. It’s not going anywhere, and what can you do when something is past bearing but try to bear it anyways? It’s always with you but there’s little you can do to win or lose on that front and it’s not the thing that worries you. When you close your eyes at night it is the fear that you are losing yourself that haunts you. The future stretches out before you, colored in reds and oranges, day after day of the same. How long before it destroys more than your body? Will you wake up one morning and find yourself changed? Every day you feel it chip away at the center of who you are. Deep inside you can feel the foundation of your decency, your ability to love, your sense of right and wrong, crumbling under the inexorable pressure of pain. Every night you collect the crumbled pieces and try to piece them back together like a child trying to glue a smashed plate back together, but you’re no longer certain you remember the original shape you were trying to remake. You know that if you put the pieces back together incorrectly you’ll no longer be the person you were, but some monstrous caricature of yourself, uncaring and disinterested in the experiences of others, wholly consumed by your own suffering.

You go through the day with these thoughts hiding just around the corners of your mind. More than once you have to stop yourself from replying to an innocent question with biting criticism. You sink into a kind of solitude, a fortress of silence where the walls are formed not to keep people out but to hold yourself in. By the end of the day you’re so exhausted you can’t imagine you’ll ever have the strength to get through another day. When sleep comes it’s restless and haunted.

The next morning as the light slips through the blinds to bid you a gentle good morning you drift towards wakefulness, towards pain, and think to yourself please let me have enough strength to see the day through with dignity and decency.

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