Monthly Archives: August 2016

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>

|Categories: Life, Parenting, Progression | Tags: , , , | Permalink

Social Influence

Last Friday, Scarlett and I went to visit Rob’s office. He took a new job in April, at a start-up called Linqia in San Francisco’s Union Square neighborhood. We hadn’t seen his workspace before, and we were excited to meet his coworkers and see where he spends his days.

The main reason we were there was that Rob was rolling out the #WhatWouldYouGive campaign and asking his company to get involved. We gathered in the conference room, where Rob talked to a large group about the genesis of our fundraiser, and how he hoped to impact awareness through a “day of silence” at Linqia.

While he spoke, Scarlett held court in the corner, crawled around under the conference room table, pulled apart the protective covering on a few chairs, and ate an alarming amount of  bread and cookies. Read More>

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

Vivian and Christina

Today I was planning to introduce a new Face of ALS, but first, I have to acknowledge some sad news, which is that my friend Vivian Connell died of ALS yesterday. I’ve written about Vivian before, and you can read about her here and here and here. Her family wrote on Facebook that she passed away peacefully and that they felt both “an unbearable sadness and an overwhelming relief.” I also feel a deep sense of sadness, and a pretty healthy dose of anger. I never met Vivian in person, but she was a good friend of mine. Wise and real, principled and generous. I’ve spent the morning thinking about her, and about her husband and two children. Although her death was not unexpected, I find it hard to comprehend, as though she is still sitting there in her home in North Carolina, doing important work, and occasionally standing up and stretching when she needs a break. Because the really weird thing is, in my mind I never pictured Vivian to be sick. Her words never made her seem that way, and her beautiful smile is all I can see. I’ll keep her like that in my memory, and she and her family will be in my heart.

As I say goodbye to Vivian, I am saying hello to another person who shares our disease. Read More>

|Categories: Faces, Life | Tags: , , | Permalink