Category Archives: Relationships

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

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

Two Worlds

Living with ALS means that you are often straddling two worlds. For me, the first world is the one where my friends talk about school, their kids, their vacation plans, their jobs. In the other world, my friends talk about making their own funeral plans, how to take some of the burden off of their families, picking out what they will wear when their kids say goodbye to them. Both worlds are real, but it can be extremely challenging to toggle back and forth between them. I’m getting better at it, maybe? I’m not really sure.

I had a flash of former life last night, a vision of this yoga class I used to go to regularly. The doors that closed, the heat rising to 110°, me on my mat performing the same 26 poses in the same order, all that strength in my legs and arms. One time, lying on the ground, as calm and settled as a leaf, when the instructor came to stand over me, his sweat dripping down onto my own chest. How I flinched when the drops hit me. The way the room would begin to smell stale, a burnt popcorn aroma that I associated with mistakes, as if everyone there was purging what lay just under their skin. Read More>

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