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>

|Categories: Life | Tags: , , , , | Permalink

Amanda Bernier

I’m rolling around on the back deck, trying to find a warm spot to sit in the sun. There’s a laziness associated with this activity; I don’t feel like going back in the house and asking for help putting my shoes on. Otto is circling me, thrilled that we are outside together. I can see my own reflection in the living room windows. My outfit is ridiculous, my hair is disorganized. I am spinning.

Last night after Scarlett went to bed, I was scrolling through emails on my phone, and I came to a Google alert letting me know that Amanda Bernier had died.

“Oh no,” I said softly, but of course Scarlett heard me from her bedroom, where she lies in wait for any sign of drama that might prolong bedtime. “What’s wrong?” she yelled. “Is Otto throwing up?”

By this time I was crying, and I couldn’t get any words out, and she had run out of her bedroom to see what was going on. Rob walked out of the laundry room, some confusion on his face as he asked what had happened. Read More>

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