Category Archives: Life

Speed4Meg

About a month ago, Rob and Scarlett and I received a really wonderful visit from another family who is dealing with ALS. This was particularly special, because the woman, Meg Macdonald, grew up in my hometown of Oak Park, Illinois, and went to high school with my Aunt Carolyn. Meg and her family now live in Reno, and she comes to San Francisco for regular clinic visits at UCSF. Meg was also a top fundraiser in the #whatwouldyougive campaign, bringing in nearly 15K.

I’m not always able to get together with the people who reach out to me, but I really wanted to meet Meg and told her I would rearrange anything necessary in order to make it happen. We had a busy weekend, and the only time we could really figure out to see each other was Friday night, right after Meg’s clinic appointment, the first one her 15-year-old son Andy had attended.

Meg, her husband Stan, and Andy arrived around 6, looking much happier than I’m sure I normally look after a clinic visit. We ordered Thai food, drank wine, sat and talked. I offered Andy a glass of wine, because something is wrong with my brain. He drank a soda. Meg uses her phone and a tablet to communicate, and she didn’t have any Thai food, because she eats through her feeding tube. Though she’s only had ALS officially for a few months, she is sadly well-versed in the disease, having lost her mother, aunt, and cousin to it. Read More>

|Categories: Faces, Life, Relationships | Tags: , | Permalink

Scrambled Eggs

“I don’t pretend to have all the answers. I don’t pretend to even know what the questions are. Hey, where am I?” — Jack Handey

I sort of think I should just leave that quote here as today’s blog. It sums up nicely what I’d like to say, and I’m not sure I can expound on it very successfully. But here you are, so I’ll try.

I’m sitting in my bedroom trying to meditate, but my head feels like it’s full of scrambled eggs. I can’t focus on one idea or even a simple set of words that might bring clarity. Clarity, I say in my mind. Clarity. As though that single word might have the power to rush in and vacuum out the contents of my brain, leaving only what is elemental. It doesn’t work, so I lean back in my chair and stare up at the light fixture, running my eyes along its scalloped edges as though I’m working at a strand of worry beads.

I’m perseverating on the concept of a life without ALS. Read More>

|Categories: Life, Meditation, Relationships, Vanity | Tags: , , , | Permalink

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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