I found myself completely lost for words one day. I don’t think that as I write this I will be able to do it justice. But I will try…
I was sitting in front of my specialist and as I was going over all the different diagnosis, meds, symptoms, treatments and complications, which was as long as a Chinese phone directory, I suddenly felt the urge to stop. So I did.
I could tell that my words had no meaning to this person; like so many other times I have spoken to people. Like screaming into space, words are simply unheard and lost in the void.
It felt chilling and isolating. Like I was floating aimlessly in space.
There comes a point when it all becomes almost indescribable. Like someone might feel as they watched whilst orbiting the earth.
It’s a chilling phenomena that many of the chronically ill seem to experience when encountering the outside world. Like drifting in space.
No one can hear us or understand the feelings we may be going through.
So why do we try?
Let me change topic for a moment.
I recall a friend sharing their experiences and frustration about not being able to find work. It was causing so much anger and anguish to this person that they were even beginning to vent their anger on me, despite the fact that I was empathizing with them. I had found myself in a similar place at times in my life and so I could remember the feelings and frustrations. So I listened.
Despite this particular challenge, the rest of this persons life was relatively’normal’ and it would most likely resolve eventually, it was a matter of time. However almost everyone reading this may be able to understand how being out of work can impact on other areas of our lives.
Whomever [they] spoke to or shared this challenge with, they would no doubt have been met with some form of understanding. There is a certain stability that can be gained from the compassionate nods and looks that people get when they share a challenge with others. A challenge that others can comprehend.
But. What if this person could never work again? It would be a completely different scenario.
I feel sure that the intensity of the empathy and depth of compassion would be magnified… now…
Back to the story.
As I sat there in my wheelchair and tried to explain to the specialist which health issues were most frustrating, frieghtening and why, it occurred to me that it was as though I was taking to … nothing!
My words have no meaning or reality to anyone but me in that space.
There is no way to triage my own list anymore. Do I miss walking more than eating? Which thinks should be prioritized? Does it matter? Will it be different in another year? What can this person possibly understand and how can I explain it?
At the end of the day, it’s me who must live with whatever happens. The reality is that I will most likely be forgotten 10 minutes after leaving this office, but I will remember that look forever.
The look people give you when you try to describe the true everyday impact on your life and self worth.
At the end of the day, everyone else can just walk away from it all… but not me. And not those of us who must live it day by day. Hour by hour. Minute by minute.
That’s why our circle becomes small and our words few. Not because we have nothing to say, but because very few people understand what we say anymore.
The space between me and everyone else seems almost as vast as the universe itself.
Maybe, like the space probe that we have sent hurtling out into the cosmos, decades ago, to seek out and keep searching the endless universe, maybe there is a point to us reaching out? Sending out messages out there may be helpful.
Maybe, sometimes, we can be surprised by what we can discover? Maybe.