I’m not feeling well today. I want to write an entire blog using only Emoji’s: a raincloud, a cough machine, a devilish dog, a child sneaking candy, a burgundy nurse with arm muscles like Popeye.

It’s just a cold, but another cold is not what I needed right now. Yesterday was the last day of the official #WhatWouldYouGive challenges, but it looks like the campaign will continue as more team members give up abilities into August. We might extend the whole thing even longer, because why not? We haven’t cured ALS yet, despite all the talk you hear about breakthroughs.

Breakthrough is a funny word. And every time I read an article using that word it reminds me of when I worked in book publishing and we called every book groundbreaking. They weren’t. But you can say whatever you want when you’re trying to get people’s money and attention.

How will we know when something is really a breakthrough? When it starts extending or saving lives. When it is more than just a word in a press release. Until then, maybe it can be characterized as information that could lead to a future breakthrough. But that doesn’t sound nearly as exciting. Certainly, in the world of ALS more is happening than ever before, and there is reason to feel optimism. Despite being sick for the last 10 days, I have also been feeling buoyed by the selflessness of our team members who are inconveniencing themselves to raise awareness of a disease that none of them have. We also have team members with ALS, but of course they are not asked to give up any additional ability for the fundraiser. The whole group has turned out to be incredibly effective at raising money. We have more than $100,000 that will go to ALS research. Our goal is $200,000 and I am completely confident that we can reach it.

So that’s the ALS update. But what I actually wanted to write today was a story that has nothing to do with ALS, a story that isn’t even true, a story that would let me escape from the reality of my glass walled prison. Beautiful though it is, no one is meant to spend this much time at home. I’ve already been out today, though, as every day of the summer it’s been my responsibility to get Scarlett to camp. This week it’s swim camp, which they recently renamed athlete camp, I guess to reflect the fact that in addition to swimming, they also play wiffleball and volleyball in a park overlooking the Golden Gate Bridge. This weekend we visited a friend’s farm, where Scarlett picked apples and watched them be pressed into fresh juice. We had a dear friend visit from the East Coast and we went to an art museum with 360° views of the city. We ate ice cream every day.

My daughter has no idea how lucky she is, but then most people don’t. I know I don’t have the life that I truly want, but I also feel like to call myself unlucky would be an insult to so many people who don’t have the privileges that I have always enjoyed. Not that we have to be all Pollyanna about it. I’m also super irritable today, probably a result of this cold, which is zapping what remaining energy I possessed to deal with my conniving child. (Consider the temper tantrum that I threw when I found out she had opened a brand new box of fruit rollups and eaten half without asking.) My loss of control makes me feel out of control, which is not a particularly profound statement, but is nevertheless true, and something that I’m trying to get a handle on.

I know I’m lucky, ALS or not. I see it in the number of people who are supporting the #WhatWouldYouGive campaign. How many people are working for the real breakthrough. I’m grateful to all of you for helping me remember what’s important. I’m also grateful to the makers of NyQuil.

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