Category Archives: Life

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

A Week In The Life

It’s been an interesting week. Last Thursday, Scarlett fractured her arm on the playground while swinging with her friends at a birthday party. I wasn’t watching her, because I don’t watch six-year-olds play at the playground when my friends are all drinking wine and facing in the opposite direction. It was truly a lovely party, until the moment when my child was screaming bloody murder that she needed to leave right then, and would stay for absolutely not one moment longer, except for what’s that you say, a cupcake? Yes, I will take that on my way out.

I was planning to just take her home, but something about the way she was carrying on told me that this situation was pretty serious. It’s hard for me to tell if an injury is really an issue or not, as I can’t usually get close enough to see, and Scarlett has enough drama in her personality that it is often unclear what is real and what is pure performance. This time, though, it seemed painful.

We left the emergency room three hours later, and on Monday we got her official bright pink hard cast, which she will wear for six weeks. As I said on Facebook the day after the accident, the worst part about it is that it creates more work for all the people who are helping me, meaning Rob, my sister, my assistants…basically a group of people who are not looking for more responsibility. But such is life, and of course I am also impacted by her fracture, because I now find myself waiting longer for help, because she is the priority. Read More>

|Categories: Life, Parenting, Relationships, Venting | Tags: , , , | Permalink