Everyone cheers for someone who is fighting for their life, full of hope with a positive message, vulnerable enough to be relatable, but not too much as to be overwhelming. She is seen as sincere when she talks about overcoming. She inspires, because she has a life-threatening disease, but she still believes she will beat it and thereby make the world a better place. And everyone loves to remember how precious life is.
I know from experience something which few who’ve never been there understand: fighting to survive has a remarkable simplicity. You will live or you will die, and that’s it. You can stay positive and even be inspired when there is an end in sight. Either you will heal, or you will leave this world. What have you got to lose, then? The freedom here is unparallelled. If you’ve ever been with someone at the end of their life, then you know what I mean.
I was more alive than ever when I was dying. I lifted others up without even trying. It was just the off-gassing of my survival. I knew the pain was temporal one way or another, so I could bear it, and take more than anyone expected. What else do you do in the end but surrender where you can, fight where you must, and share how beautiful life is whenever you get the chance? What a gift to fuel perseverance and reverence for life in everyone you touch.
But what happens when you’re only half alive, in terrible pain with no end in sight? Nobody talks about that. No one gets interviews on talk shows and no one gets cheered on for the amazing being they are. People do not understand who have never been to war: a soldier on the battlefield, gutted and begging to die, or the person who endures so much torture, they’re ready to be killed. For there are worse things than death, and if you don’t know that, you’re fortunate, indeed.
To carry on like this, day after day, life only half finished, knowing it may go on to a ripe old age, is another matter. It’s pretty difficult to take inspiration from the same places as fighting to overcome death when you fight because that’s what it takes just to get through the days; when death is not a mountain to climb or an adversary to contend with, or the eternal peace drawing near, but an impossibly distant reprieve.
Imagine, if you will, living inside a metal suit: a moving torture chamber that crushes your bones, stabs at your nerves, cuts off your airflow, twists your guts, compresses your head and squeezes your brain every minute you’re alive.
You cannot do the things you love. You cannot engage life to the fullest because many times pain is all there is, and you can’t think, let alone walk very far, or dance, or sing as your spirit longs to. Washing dishes, doing laundry, managing your space all slip away. Keeping up with the ailment is a full time job, and takes everything you have.
So you often sit very still and pray for the words to come because they are what you have left to give your life meaning and a sense of purpose. And sometimes even the words are gone, and suffering is all you’ve got.
You pray for help making peace with disintegrating in excruciating pain with no hope of mercy all the days of your life. And you make the most of any moment of more, and pray you don’t give up on life before your time comes, and become a vacant, empty bane on another’s existence.
You will be cut, parts taken out, fused together, in the hopes of bringing more to life than pain on the other side. It may or may not work, but it’s your last resort to have a chance at actually living. You will do this at least twice
Might shapes a culture that looks at you as an abomination or doesn’t see you at all. People cannot bear to look at you with your contraption because they see their own vulnerability. And no one wants to be afraid of pain, though most are and can only stand to see it on tv. But you cannot be afraid of pain, or of vulnerability, because this is your path.
You fight to love anyway. You fight to be soft, and kind, and graceful while life crushes your bones and muscles, and anything holding you together. You fight to smile at loved ones and at passerby, to be an embodiment of goodness, so when your time comes at last, you can go in peace.
I can say that sometimes there is alchemy, and it’s awesome, and I try to share it when there is. But many times it’s just pain, and it’s hard to carry on and participate in a meaningful way, and remember life is worth living. And this is the fight for me now: not to survive, but to endlessly endure.
I suffer alone most days. My husband cares for me and can only take so much. Anyone can only take so much. I can only take so much. Yet here I am, still.
Please don’t judge me if I am unable to think positive or be inspiring, or tell you life is really beautiful, if you will only see it. For that is only one side of the equation, and life is duplicitous at minimum. Life is many, many things, and we all have our destiny (made by ourselves or by something else).
Others may cling to the light, but I have had to learn to walk in shadow, invisible and alone. And I’ve had to learn to love from the darkness. You may not see my love, but you will feel it when you close your eyes, for night always comes when the day ends.
Copyright © S. Naify
Art: Home Alone a collection by Jarno Lindholm.