Having a progressive disease that destroys you in small bites is rather like being chased by Death if Death was a very small, somewhat deliberate snail.

You aren’t running from a great and final clash between yourself and your enemy but upon occasion, throughout your life, you will find it has caught up and stolen something from you.

A bit of feeling in your fingertips.

Your body’s ability to regulate temperature effectively.

That super sensitive spot above your left ear.

Each time you notice an attack you redouble your efforts to strengthen, fight back, but the damage has been done and the slow tiny inevitable snail of Death matches ever onwards after you.

Yesterday I had my first arm failure. I was carrying a box down the stairs when suddenly my arms just stopped working. The box finished its trip downstairs on it’s own and I stood mis-stairs looking at my suddenly useless arms wondering what the fuck happened.

There was no strain beforehand, no warning of imminent failure, just a tiny snail snipping a connection in my body.

Then I could move them again. I went to the landing, tried picking the box up again, and moved it to its final location.

So who knows how often this will happen going forward. I’ve been dropping things with my hands for years, they suffered the faulty wiring of this disease earliest, but the arms have heretofore been reliable.

Now, not so much.