Drifting in Disability

When we talk about disability (or any major illness that makes you disabled without the government's certification), what we most often think of is pain.

Pain, and its restrictions, are the center of conversation. They fill up the minds of the disabled and control the narrative to the people around us.

After all, pain usually sets our restrictions. Chronic fatigue, weakness, loss of control... all of these things are 6 degrees of pain.

This doesn't even begin to include the mental and emotional pain that comes with being disabled.

Some days, it can be hard to know which one is worse. Which one is more restrictive. Which one wreaks more havoc.

But a much less discussed topic, at least in my experience, is the feeling of purposelessness.

This can be a double-edged sword. To many, you have to prove you're disabled. You have to emphasize your restrictions and limitations just so they believe you.

Yet, at the same time, you try to build a life (albeit different from the one you imagined) with what you have left.

It's the having and not having. The ability and the disability. The chance to begin again in the wake of loss.

Many people (myself currently excluded) are able to do just that.

They find jobs, friends, and careers that allow them to live fully. They can create something new, even if it's not the same.

But others, like myself, are left to drift out to sea.

We seem to be holding a life preserver, tugging at the rope that pulls us closer and closer to safety and stability.

Instead, like a magician's hat, it seems the rope is never ending, and we are never moving towards anything.

We're left to drift out to sea, our lips parched and noses burnt crispy red under the gaze of the blinding sun.

It's in the haze of "I'm in pain and disabled but apparently not enough to get help" that desperation sets in.

We feel both not enough and too much at the same time.

There's no place for us to belong. We're either not healthy enough or too healthy. No validation and no relief.

It's in this place I find myself. The place of not belonging.

It's a hard feeling, or lack of feeling. Deep rooted emptiness comes up from your stomach and strangles your throat.

When you can't find a place to belong, a purpose to have, you feel utterly alone with absolutely no meaning.

This is the drifting-the holding-onto-a-raft, hair-pulling sense of empty. No destination and no control.

Everyone in this world has to find their purpose-their place. And many people have to wrestle with various things to get there. But this kind of purposelessness is a unique fight for those of us who are disabled.

We feel like we don't belong in this world -we weren't made to inhabit it and it wasn't made to host us.

There are too many junctions where our lives (bodies) took the wrong turn. It's an uphill, never-ending battle the entire time. And we are hardly equipped to fight it.

Whether it's before we discover who we could be (or could have been), or after we've worked our whole lives to get there, the loss is great. It uproots everything.

Both scenarios turn our lives upside down.

It feels like a cruel add-on to the suffering we already endure.

I don't really have the answers. God, I wish I did. I wish for me, and for you, that I could wrap up this painful and difficult topic with a nice bow.

But there are no answers. There's only questions. Questions that come with bleeding palms, pleading hearts, and tears-stained eyes.

But maybe in the community, we can find a small measure of comfort.

Sometimes, the acknowledgment and validation can be healing in itself.

Sometimes just speaking honestly, being able to let go of the facade (even if for a few moments) can be relieving.

Maybe the benefit comes in the community-the people who understand implicitly what this does to you and your life.

A recognition beyond words.

It may not heal the body or the mind, but it can be a balm to one's spirit. We're not in this alone.

We're not uniquely broken.

Say that again: "I am not uniquely broken."

It's why I write articles like these. It's why people read them.

We so badly want to know that we're not the only ones out at sea, voices hoarse from our SOSs.

If just one person feels less alone, less broken, because of this piece, then it's done it's job.

Maybe we can join hands and drift together.

If you loved what you read, would you be able to buy me a cup of coffee? It's okay if you can't right now. I still appreciate your support in reading.

Thanks for being a part of the journey 💗