I want to live fully, with purpose, independence, and stability, but the pain, fatigue, and flares of my disability and chronic illness pull me back every time, no matter how hard I try.
I keep trying anyway, knowing full well it will end in defeat, because the alternative is just giving in to the pain and emptiness. The hardest part is the difference between the life I image, and the only one my body can actually endure.
At times, I accept my fate. There are times I rage against it with such determination and strength that I could rebuild our world into the paradise it was always meant to be. But like a moth drawn to the intense flame, it always leads to the most predictable end – being engulfed, so temporarily, in the warm of the flame, and then abandoning the heat and light to the coldest, darkest end, laying crushed and helpless near the burned ashes in the pale morning glow. And inside, realizing that none of it made the least bit of difference.
Today is my 38th straight day of being alone, having nothing in particular to do, no particular contact with anyone else, and stretching mundane tasks across endless days just to have something, anything, to do. It is the 38th day of being crushed by the isolation of being totally and utterly useless and unreliable.
I’m not even particularly sad about this. I’m not anxious, or unhappy, or even overwhelmed. I’m just here, existing without any meaningful purpose, occasionally starting projects I know my physical body will never be able to complete, and feeling completely engulfed by the unending tedium that fills each endless day.
I make no decision more important than do I go to the grocery store today to pick up three items, or wait and go in two days and pick up six items. I have no plans more important than do I go to the drug store and walk around, or sit around at home staring a wall or out the window.? Do I stay at home, or walk a short distance even though it means pushing past pain that I’m so good at hiding that no one could scarcely guess how intense it is?
Sad, happy, defeated, empty – the words mean nothing except a dull monotony of minutes ticking by… Hours ticking by… Days ticking by… A life that is ticking by…
Although I am starved for conversation, I rarely call or contact anyone. The only thing I have to share is the monotony of endless empty minutes, or disjointed memories of a life from so long ago, and once-interesting stories that lost their luster a dozen tellings ago.
After years of medical treatments, hospitalizations, recoveries, re-hospitilizations, attempts at returning to a purposeful life followed by inevitable failure after destructive failure, what do I have worthy of being said, much less shared? I bore myself, and hear my own pain in my forced positive conversations.
I am caught in an endless cycle of adversity, isolation, partial recovery, resiliance, rebuilding, re-emerging, strength, pushing above and beyond my puny physical abilities, and crushing defeat. Do I wallow in the agony and isolation of defeat, or try again? I always try again, and the cycle repeats, endlessly. At this point, even I recognize the futility of unsubstantiated hope. I am that moth draw to the flame that will ultimately burn my very soul, with the only alternative the coldness of laying, spent and lifeless, in the cold, damp morning sand.
I have no inspiration left. I go through the motions, through the expected rhythms of daily life in complete exile, sometimes pushing myself in meaningless tasks, sometimes allowing myself to just give in the monoteny of sleep and scrolling, and always, always, being filled with the incredibly emptiness of near-complete isolation.
In many ways, I wish I was sad, or dejected, or depressed, because those things eventually end. Instead, I am completely engulfed in waves of numbing futility. If I care, I will be disappointed. If I try, after only the tiniest bit of success, I will be overwhelmingly crushed by inevitable failure. If I even dare to hope, I won’t just be disappointed, but will be overcome by desolate failure. I haven’t given up. I’ve just realized the futility of trying to be something I have no ability to be.
Today is yet another day, of empty, useless minutes ticking by. I think this numbness I feel is my decision that it is better to feel nothing at all than to continue in this endless cycle. Is a choice between giving in or repeating a painful, self-defeating, endless cycle really any choice at all?
