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    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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Try as I might and that is often, I always seem to miss. An outstretched hand that never quite reaches its target, as life passes me by again.

I want to scream out and tell them I wasn’t ready, that I want to start again. But they say time, like an arrow goes only one way.

Every day I reach out at life in the hope that it might allow me to ride those waves until the inevitable, and the tides turn for the last time. To lay down and take those last breaths, and think those last thoughts and say to myself, ‘’what an adventure that was.’’

I am not sure I know who I am anymore. What it means to be human, and if we are unique, if we are the only ones, where have we come from, and where are we going.

Looking for answers I see migrants crossing the Mediterranean in the dead of night in wooden coffins, some call boats, fast taking on water. I see the bombs that fall so hard and fast that death cannot come quickly enough.

Somewhat ashamedly I turn off the TV in the hope that it will all fade away like a dream you have during the night, but leaves you almost immediately upon waking never to return, even if you wanted it to. But within that morass of confusion that meanders my thoughts like a puzzle I can never hope to solve, I experience something deeper, a place where words fail, a place deep within what we call our soul. Some might even call it spiritual, a sense that we are closer to a greater power. I am in awe and yet it is unimaginable to me, forever beyond my grasp. Perhaps this is the life I am hoping to find.

I feel uneasy. I talk of such events not in an attempt to compare them to this illness, my suffering and my life, but because it is there; they are human and so am i. The only thing separating us is not a few thousand miles, but a series of events, of which we have no control.

Perhaps I have got it wrong. Perhaps we are all running from something, we are all trying to find a place that doesn’t exist. Like the hamster on the wheel, we keep trying, and we keep trying because we don’t know any other way.

Life on the other hand, without this dreadful illness might not have been what I had hoped, and how would I have known, never having been here, the land of suffering.

I feel like I have missed out, that there were so many places I wanted to visit, so many books I wanted to read. I want to read the minds of Kant, Descartes, memorise the sonnets of Shakespeare, laugh with Dickens, and understand the renassiance painters. And the Tudors, the founding fathers, the Ming Dynasty, the Ancient World. I want to understand Quantum Entanglement, theoretical physics, and meet every human that every lived. I want to be there watching the Big Bang, and see that in the first trillionth of a trillionth of a second the universe had expanded from almost nothing to the size of our sun. I want to go beyond my imagination, beyond life, past death and into oblivion and back. I want to see the edge of the universe, and the inside of an atom. I want answers to all of life's mysteries, and more. I want to live forever, a one way ticket to infinity.

If I am to watch the sun going down for one last time, and in a time not of my choosing, I hope, I might even pray, that I can sit down and embrace all that is good about life, and remember all those times when I felt loved; the times that presented me a smile, the places and people that gave me thought - that this is only the beginning, that it was all meant to be, and the best is yet to come.

In memory of all those that have taken their own lives because of this illness, in particular those here on Phoenix Rising. Who can be sure we will never see them again. If anything makes any sense to me, and if anything was meant to be, why can that not be so. And yes, what an adventure that would be..........
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Brilliant. You are a very gifted writer, a pleasure to read. You appear to be grappling with big universal/universe questions that so many of us have asked, or are still asking. I've draw so much comfort from the promise of a time very soon, when an earthly government will bring about permanent changes that will allow us all the time and good health to experience many of the things you hope for, and more. All the best to you.
 

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Quilp
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