You have ALS… Disappear.
Go home and die.
Get your affairs in order.

No, I will not!

The statements above are harsh, but they are true. Or at least they were. Slowly, this is changing, as the ALS afflicted gain their voices in the prognostic conversations.

“Yes, it’s terminal, but I will find a way to live my life in spite of it until I can’t.”

TJO

Many persons affected by ALS are, in fact, treated as though they are invisible, sadly. Often, by those, it wasn’t expected from. We feel, although it’s not true, that we are ignored by agencies assigned to help us. Truth be told, it is the secondary effect of overburdened bureaucracies. They are stifled by layers and layers of out of touch policies and practices. We are in an unending line that splits off into a fork… progress and death. Which do you think calls “next” most often?

As the ALS progresses, the cloak of invisibility increases in power. Friends, family, and acquaintances just can’t see you, so they don’t come around. What’s the point? You’re invisible,right? Researchers don’t want us. They can’t test invisible subjects, I mean participants, no, I meant people.

Where did that voice come from? I don’t know, says the congressional aid. There’s no one there. But it’s getting louder. Look, someone in a wheelchair is materializing where that voice came from.

Yes, our voices are getting stronger, and we are now being seen.

This I can live with, why? Because it is the concrete reality of our world. What I do dislike is how this Cloak of Invisibility suddenly appears when we step out in public.

All of a sudden, people don’t see this hulking powerchair. Over the weekend, as Meg and I visited the Florida Keys and Hemingway’s home, as I sat in the garden waiting for Meg, I was invisible. Countless people are milling about, not a single hello. Don’t look at him. You might catch his wheelchair-itis (sic). Rolling down sidewalks, in any city, I can’t tell you how many people bump into me. Not because I take up so much space, but because they are rushing and can’t be bothered to yield to me. Most commonly, because they are on their phones. It’s as though they are challenging me to maim them.

“Have you been injured by a powerchair recently? Call us at 1-800-BRK-TOES! We’ll sue rogue cripples for you!”

I jest of course. But it gets tiring having to be invisible when I’m right in front of them. I don’t want my ALS Cloak of Invisibility anymore.

TJO