As I am.. I am.

Please know that I recognize my privilege. Even with my struggles, I am extremely blessed to have enough food, clean water, a safe home for me and my son, and all our needs are met. We don’t have much in the way of “extras,” but we have more than most. And I am very, very grateful.

* * * * *

This has been a difficult week. It was necessary, as part of my benefits continuance, that I visit and describe the depths of my struggles. This is not a happy place for me. It is not a place that I live every day. It is a sad and lonely place, filled with pain, confusion, anxiety, and yes, fear. 

And yet, I did go there. It was a requirement. And I stayed there for over two hours in an interview. And, I’m sort of still there, seemingly sifting through the soil and throwing out big stones, looking at the tattered rows laid out before me, slowly morphing into beauty themselves, but knowing I need to jump back onto the other side of the fence very soon.

The interview itself wasn’t difficult. The person I met with was kind and generous, and the nature of the interview was to my benefit. And yet, the activity of describing in detail what it’s like to be me, in that place, from the perspective of the pain and daily struggle, was unto itself, very difficult.

It’s not that I’m unaware of the struggle, every day. It’s that I choose not to dwell on it. I choose to be more. Happier. To not worry about the oddities. The work-arounds and tricks and lists I have had to put in place to remind me of how to do things. The enormous amount of time it takes to do simple tasks which were once so automatic and mindless.

Not stopping to question my need to stand up and change course when I’m sitting and can no longer sit, or put my face in my hands to block out the light and rest for a few minutes, or leave a task and return later because it’s too hard. And then figuring out which of these I can do without commentary, and which I can do in the presence of others… and which will need me to speak some sort of script beforehand.

Making notes all the time to remember, remember, remember.. and then not knowing where the notes are or if I made any.

Going deeply into the struggle in order to describe it, meant that I had to really feel everything in order to describe them. This is different than getting used to assigning numbers to pain levels (which can be done pretty objectively after a while). The nature of the questions on “function” required me to feel the pain in my head, in my body, the extraordinary sensitivities to light, noise and motion… to describe these things. To detail how they impact my daily life, and how I deal with it all.

I’m still in the throws of acknowledging all my emotions around this. Past and present. 

The loss of identity.

A very difficult thing to do when my aim is to live on the other side of the fence, the side of Beauty in the face of tragedy. Even straddling the fence from time to time is not fun.

But this time, I had to land with two feet on the side of the Struggle and stay there and talk about it for over two hours. The residue of this is not easy to shake, to get back on Top of the Fence and reach for the Stars and declare myself to the World:

As I am, I am. 

And soon, I will jump onto the other side of the fence… the side of “Beauty and All That Can Be” …and carry on.

❤️ 

Image: John William Waterhouse (British-Italian painter, 1849-1917), Windflowers 1903