Tag Archives: Disability

The Words We Use

I’ve recently spoken to a few people with ALS who all said “I’m dying” at some point during our conversation. I understood. They are recently diagnosed, trying to make sense of a sudden, terrible loss of control over their lives, their futures. To say “I’m dying” can be a way to acknowledge what is happening, while still taking back some of the power. “Now I know what’s going to kill me,” one man said.

Or it could just be a way to begin to cope with what we’ve all been told is the inevitable conclusion of having this disease.

But I’ve found it doesn’t work for me. I once tried looking in the mirror and saying “I’m dying” out loud to my reflection. It just made me want to laugh. I don’t feel like I’m dying. Even though any one of us could look into a mirror and say those words, and they would technically be true, when I said them, they sounded false. Read More>

Life on Wheels

It’s Wednesday morning, and there’s a man in my kitchen. I’m usually home alone until about noon, but today is different, because Sal has come to patch up something like 60 divots and gouges throughout our recently renovated house. We were not attacked by starving woodland animals, nor was this the result of drunk Christmas tree decorating or anything to do with the resident 4-year-old. Let me explain.

In 2013, it was getting really hard for me to climb stairs. We lived on the second floor of an old Victorian in the Haight Ashbury neighborhood of San Francisco. One flight up to our door, another flight up to our home. As my legs grew weaker, it became clear that we needed to move. But there we faced a different kind of challenge: finding an accessible place to live in San Francisco, city of hills, multi-story homes and steep staircases. We were still searching when I lost my stair climbing abilities entirely. Rob carried me up and down two flights, every day. Over and over.

Finally we found a home that fit our needs. Read More>

A Simple Night Out

The setting was a small Mexican restaurant in our new neighborhood. It was our first time trying it, because that morning Scarlett said she wanted tacos, and while we draw the line at tacos for breakfast, the idea got into our heads, and neither Rob nor I felt like making dinner later. Actually, part of that was a lie. I don’t draw the line at tacos for breakfast, we just didn’t have any.

The restaurant was decorated in a super fun and kitschy way; collectibles like small dolls, head shots of 1940s film stars, and license plates from different states adorned every surface. Aside from the decor, the place was not at all full when we arrived, and they sat us right away, at a table for four in the front corner. I don’t use a real chair at restaurants these days (or at home, for that matter), so I just wheeled up to the table while Rob and Scarlett went around to the side closest to the window.

The service was ok, and my margarita was a little watery, but we were having a pretty good time. And then, 25 minutes or so after we sat down, a woman came up to the table. She was older, and possibly the owner or a manager. “Can you move to the other side of the table?” she asked me brusquely, gesturing to where Scarlett was sitting across from me. Read More>