Disabled, Not Done

Everyone assumed the stroke was a full stop. It was a comma.

Hi, I’m Michael, and I’m a stroke survivor.

Not long after my stroke, at a gathering I can still picture clearly, someone I like and respect put a hand on my arm and asked, gently, “So what will you do with yourself now?”

They meant it kindly. They always do. But I heard the sentence underneath the sentence. What they were really asking was how I planned to fill my days now that the working part of my life was over. In their mind, the stroke had already written the ending. All that was left was to choose a hobby and be grateful I was still here.

I understood the instinct. I had lost my licence, my speech came and went, and I could not, on that particular evening, have done up the buttons on my own shirt without a fight. From the outside, “over” was a reasonable guess.

They were wrong, and I want to tell you why, because the same wrong guess gets made about people like me every single day.

Disabled is a fact. Done is a verdict.

Here is the distinction I have had to fight for.

Disabled is a description. It is true. My body and my brain work differently now, some days very differently, and I am not going to pretend otherwise. I say the word plainly because dancing around it helps no one.

Done is something else entirely. Done is a verdict, and it is a verdict other people love to reach on your behalf. Done says the story is finished, the ambition is retired, the contribution is behind you. Nobody asked me if I was done. They simply decided, kindly, quietly, and moved my chair to the side of the room.

I have said for years that I am disabled, not dead. I want to sharpen it. I am disabled, and I am not done.

The drive did not have a stroke

This is the part the recovery world kept missing.

My arm was affected. My speech was affected. My energy, my balance, my handwriting, all affected. But the thing that made me me, the drive, the appetite, the need to build something and see it through, that came through completely untouched. It sat there in the wreckage, fully intact, waiting for someone to notice it was still switched on.

Almost nobody did. The programmes I was offered were built to return me to a quiet life, and a quiet life is a fine goal for many people. It was never mine. Being handed someone else’s finish line and told to walk toward it is its own kind of grief, and it is a grief nobody warns you about.

So I stopped waiting for permission. I went back to work in the shape I could manage. I started writing. I joined a board. I learned to lead a survival team of Scouts, of all things, and found that the thing I had most to teach was the exact thing the stroke had tried to take: how to keep going when your body is telling you to stop.

For the survivor reading this

If you are the driven one, the one everybody is gently trying to slow down, hear me clearly. Wanting your life back is not denial. Refusing the quiet ending somebody else scripted for you is not vanity. It is one of the healthiest things you can do, provided you are honest about the new limits and willing to work with them rather than pretend they are not there.

You do not have to accept the verdict. You get to decide whether you are done.

For the person who employs us

And if you are the one with your hand on our arm, asking what we will do with ourselves now, I am asking you to catch yourself before you finish the sentence.

Do not retire us in your head. Do not quietly reassign the interesting work because you assume we could not manage it. The most capable person you know did not become less capable because their body changed. They became someone with the same ambition and a harder road to it, which if anything should tell you something about how much they still have to give.

Ask us what we can do, not what we cannot. You will be surprised how long the first list is.

The close

That evening, I did not have a clever answer ready. I think I just smiled and let it go.

I have the answer now. What will I do with myself? The same thing I always did. Build, lead, contribute, and refuse to sit quietly at the side of the room.

Disabled. Not done.