Category Archives: Life

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>

Too Beautiful

150K, people. That is what we have raised through the #WhatWouldYouGive campaign. It’s amazing. The idea was that the campaign would run through August, but we are going to keep it rolling, because no one in their right mind turns down money for a cure. We’ve also seen some late additions to the team, and feel like the fundraiser is still full of momentum. I want to thank all of our team members for their incredible efforts throughout the summer; we absolutely couldn’t have done it without you. For our new team members, and those still actively fundraising, a big thank you to you for joining and being a part of the inevitable end of ALS.

I also owe thanks to our more than 1500 donors, who gave selflessly and generously. My family and I are very happily overwhelmed by all of the support and empathy that you’ve brought to the cause. It’s true that right now there is no effective treatment for ALS, but I’m not exaggerating when I say that reading the notes from donors, both those I know well and love, and those I’ve never met, has definitely made me feel stronger and more able to stay positive.

In the realm of other things that make me happy, Read More>

A Beginning

Scarlett starts first grade tomorrow. I’m very excited for her, even though the only thing I remember about my own first grade experience is when my friend Beth and I made circles of glue on our desks and decided we would sell our tiny treasures for five cents each. We saw ourselves as entrepreneurs, but our get-rich-quick scheme was foiled when it turned out there was no market for dried discs of Elmers. Other things must have happened in first grade, but that’s literally all I’ve got.

I haven’t felt much like writing; there seem to be so many other things going on, and I’ve spent the last two days of summer vacation with Scarlett, sometimes arguing, sometimes exploring, sometimes just me watching her. I know she looks older, because other people keep saying so, but I don’t really see it myself. It’s sort of how I think I still look the same, even though I’m technically aware that I’ve changed significantly as a result of ALS. My daughter is taller. I’m growing gaunt, the bones under my skin jutting out like poorly concealed weapons. In my mind, though, we are both pink cheeked and strong. Read More>