Category Archives: Relationships

Music Together

I remember obsessing over live music. My friends and I would go to outdoor concerts and festivals, clubs and music halls, following bands, camping out, getting sunburned. I remember how it smelled, like trampled on grass and smoke and sweat. Like blankets and fried food, and something sweet I can’t identify, but that might just have been fresh air. When a favorite song was played, we jumped up and down, singing along and hanging on to each other, utterly gleeful. Once a friend of a friend came to a show, and, watching us as if we were anthropological mysteries, said, “I don’t think I like music as much as you guys do.”

Seeing live music is still one of my favorite things to do, and, even though it’s quite a different experience these days, Rob and I spent our weekend going to shows. On Friday night, we met a group of our friends at Sheba’s Ethiopian Piano Bar, where they had secured a cozy corner spot and ordered a few bottles of wine and some sweet potato fries, which doesn’t seem very Ethiopian, now that I think about it.

These are friends I don’t get to see very often, and they erupted in screams when we rolled through the door. I have no doubt they had erupted in screams each time one of them arrived prior to that, too. There were ten of us: One had flown in from the actual state of New Jersey, 4 others are NJ transplants, and the rest of us don’t matter because our roots are buried beneath all that Jerseyness. I say this with love. Read More>

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Trickett

I wrote an essay for The New York Times in 2013, about parenting with ALS. And every time a new comment came in online, I was nervous. I hadn’t talked to many people with ALS and hadn’t ever written something in such a public forum. I felt extremely exposed. Then a comment came through that began with the line “You and I share this journey…”

The poster was Trickett Fewell Wendler, mom to three young kids, who had lost her father to ALS and had been diagnosed herself earlier that year. Trickett’s version of the disease moved fast. She was dancing in March, wheelchair-bound in July. I felt instantly connected to her based on her comment, so I looked her up on Facebook (bless her beautiful and unusual name!) and we made a phone date. She was from Wisconsin and sounded like so many of the people I’d gone to school with there. Like so many members of my midwestern family. She was familiar.

I don’t even know what we talked about, we just talked. I had a three-year-old, but Trickett’s kids were a little older and she had to deal with their growing understanding of her illness. I do remember that she was working on an article for her local chapter of The ALS Association, and she was nervous and excited to see it in print. She was an activist for ALS awareness, and very vocal with ALS organizations about her expectations and frustrations around the work they were doing. People listened to her. Read More>

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Good Listening

Scarlett’s school fundraiser was on Saturday night. It was a beautiful event, and a smashing success, thanks to the efforts of so many people. Two days before the party, I came down with a little cold, and by the time Rob and I arrived at the venue, I had almost no voice. So there I was, in a loud room of 400 people, without a great way to communicate. And it made me think about ALS. I was in a wheelchair, my hands weak enough that Rob had to cut my food for me at our table, and to top it off, I couldn’t talk. This is the reality for many people with ALS, all day, every day.

I thought about my friends who say that ALS is destroying their intimacy with their spouses, their ability to parent their children, their social lives. We can—and we do—make the best of it. But at its core, ALS is a disease that seeks to destroy our relationships with other people. It’s a cruel and isolating illness. That night at the party, I was ok. I knew my voice was coming back, and I could still summon up a whisper to get short thoughts across. As I said to a friend that night, I love talking (“Oh really?” she joked. “I hadn’t noticed!”), but taking a night off from it was illuminating.

It’s highly likely that I talk too much. And it was interesting to just listen, to hear what people say to a person who is pretty much just smiling and nodding. But it was also frustrating. I have comments. I have stories. I have jokes!! That night, I relied on a whisper that was still sometimes too low to be heard, which is why Rob almost lost a bunch of money during the live auction portion of the evening. Read More>

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