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

Dear Husband

I remember the day I met you, suddenly standing in the entrance to my office, wearing a suit and seeming somehow gorgeous and accessible at the same time. I remember the first time we talked on the phone, a conversation I cooked up just to hear your voice. How you used to drop the names of authors, how I used to feel so sure. You were like a magnet, like flypaper. Get away? I couldn’t even look away.

And then it was all airplanes and dinners and borrowing your sweaters and learning about wine, and trying to cook things to impress you. I had a chunky blue iMac which I used as a stereo, and I slept on a futon, but at least I had my own place. I was 26, trying to be a grown-up. You were 38, you were definitely a grown-up. You lived in an apartment with two bathrooms, the definition of success in Manhattan. You took me to shows, to tennis tournaments, to a B&B on the Jersey shore, even though you hate B&Bs, too much floral decor, way too much socializing. You met my family and danced with me at a wedding. I wore a black dress and we looked out of the floor-to-ceiling windows and you told me you loved me.

We went to France, and England, where I met your family and ate parsnips. I learned how to cook, something besides Trader Joe’s couscous and salmon in parchment paper. I was content, and I learned that when you were quiet or agitated, a large Starbucks cookie–preferably with M&Ms–would do the trick. (You claimed not to have a sweet tooth, but I still know what happens when ice cream is left in the house.) You tried to buy me shoes, but I was too proud. You bought me everything else instead. We went to Costa Rica, rode bikes through a little town, ate plaintains and drank cold beers on the beach. We played backgammon in a tree house until it was too dark to see. And I was still so sure. Read More>

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