The idea of being disabled is easy to except on it’s own.

Let me explain.

A label of disability is nothing more than a label and everyone has a different level of disability. Adaptation occurs and life is bent to a livable direction. It’s like shaping a bonsai. Areas of struggle are carefully guided and, once in place, don’t change. If the branches for any particular reason fall short of reaching where they have to, grief happens. That grief eventually runs its course though. The problem occurs if the goal keeps moving.

More branches grow and fail to go where they need to or break unexpectedly as methods for adapting fail. Every time the grieving begins again. Sometimes the grief cycle ends and sometimes you are still in the middle of one when a new one starts. The bonsai tree is compared to others along with what it used to look like. It seems more and more alien and unlivable in comparison.

To be completely honest, it hurts. It can hurt so much that you feel like ripping your own skin off. Not that it would help you feel better. Perhaps just so the world would know how much pain you are in. It’s a completely invisible pain a person can feel as the future seems to disintegrate just out of reach. Nobody asks others how they are coping with progressive weakness as a symptom of a disability. The disabled tend to put up a strong front that makes any signs of progressive weakness even less obvious than it would be otherwise. Other people do not see the life adaptations until it is a significant loss. Even when the changes are noticeable, there is always the fear of being called lazy for needing more support. Support is sometimes peppered with complaints from the giver until it becomes a new normal.

Now. How do I cope?

The simple answer is: I don’t. I let emotions happen when they do. I get angry, desperate, pained, and sad just like one would expect. The important thing is what comes after. Avoiding comparisons is the biggest factor. Handling everything moment to moment so you do not stall out in the pain of it all. Being kind to myself and being flexible. Remembering to prioritize comfort within reason. Acknowledging the fact that my world is slowly shrinking but refusing to let it become a hellscape because of it. The last thing I need is to make living even harder on myself. I have never done anything to deserve a worse off life and neither has anyone else with progressive weakness.

Keep moving forward so you don’t feel like you are being dragged along by the future by your ankles. Everyone deserves that much.