Category Archives: Vanity

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

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>

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

The Unclean Machine

Scarlett woke up this morning and got dressed in Parmesan cheese. That probably looks like a dictation mistake, but it’s true. She ate her breakfast of leftover pizza, wearing nothing but her underwear, and by the time she crawled onto my lap to listen to Harry Potter and the Order of the Phoenix, she was covered in tiny flakes like pungent snow, and so was I. And really, what could be a more auspicious start to the day than being sprinkled with secondhand dairy dandruff? When Scarlett flounced off to brush her hair and change her clothes, I just sat there with my winnings.

When she was younger, my daughter used to hand me all of her garbage to take care of. And as far back as I can remember, I would direct her to the nearest garbage can instead. She was three years old when I got a wheelchair, and when she tried to give me her garbage then, I would say “Mommy is not a garbage can”, and shoo her away. At six years old, she’s good at cleaning up after herself, and yet, I feel like I’m always holding something that is hers, covered in something she was eating, or in sudden possession of a lap full of sticks and flower petals because she “needed them for later!” Read More>

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