Tag Archives: white coat affair

Boston

“I can’t process this,” I tell the social worker who is sitting at my kitchen table. “I am unable to write a single word.”

I need to grocery shop, I continue. Also, the Cubs won the World Series. Rob is in Arkansas. And for some reason, I can’t get Shakira’s name out of my head; it is like an unwanted mantra, a roadblock to every cohesive thought. I blame Scarlett, and Zootopia, which she watched on both plane rides last weekend.

The social worker has short white hair. It is kind of curly and kind of spiky, and I think she looks cool in her cat glasses. She waves her hand in my direction. “So you’ll do it next week,” she says, without concern.

But when I woke up this morning, the sky was so blue and the ocean out my back door so calm, that I felt sure today was the day. Yes, I’m still exhausted from our trip to Boston, which was followed by a Diwali celebration, and Halloween. But all I have to do is bring words together into sentences, and surely I can make that happen without…Shakira. Shit. Read More>

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Get a Room

I just had the strangest conversation with the Sheraton Boston Hotel. Rob and Scarlett and I have made the decision to attend ALS TDI’s White Coat Affair at the end of October. The gala is an annual event, and includes a Leadership Summit where people with ALS and their families can learn about what is going on in the world of research, and specifically at the Therapy Development Institute. This was no small decision to make, as travel is increasingly difficult, and a cross country flight will be about as comfortable as spending the night stapled to a skinny tree branch.

But we’re in and we’re excited, and so today I attempted to make reservations at the hotel where the event is taking place. Except. They only have one remaining ADA room, equipped with a queen sized bed, which should be no problem for two adults and a six-year-old who could sleep on the fold-out bed that the man confirmed the hotel would provide. But then he interrupted himself to tell me we wouldn’t be able to book that room, because only two people are allowed to stay in it. I was confused. I understand that hotels have rules, but since when can two parents and a child not share a single hotel room? The man suggested that I book a regular room, and that if an ADA room opened up, they would let me know.

“What would happen if an ADA room didn’t open up?” I asked, because I had explained to him that we required an ADA room, that it wasn’t just something we were looking into for fun. Read More>

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Notes on a Party

The Westin Copley Place in Boston was the location for this year’s ALS TDI White Coat Affair, a dinner and fundraiser that followed the organization’s 10th Annual Leadership Summit last week. Rob and I skipped the week of summit meetings, but showed up unfashionably on time for the party on Saturday night.

Corey Reich was sitting towards the entrance when the event began, looking his usual dapper self in a striped tie. I don’t like to hog Corey at these things, because I’m lucky enough to get to see him and his amazing family with some regularity back home.

I was introduced to Ellen Corindia, who’s had ALS for thirteen years and who uses a computer screen to communicate. Despite being in a wheelchair, Ellen went skiing with her partner last winter. They showed me the video, him skiing behind her, guiding her chair as the two of them zoomed down the mountain. Read More>

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