Monthly Archives: July 2015

August Approaches

When I launched the #whatwouldyougive campaign in June, I thought I would be lucky to get 30 team members. As of today we have 71, and some of those are fundraising groups that include more than one person. We have so much support. The challenges are starting August 1. People are giving up their voices, their hands, their arms. At least four people are going to use wheelchairs for a day—the extreme challenge.

The team is getting geared up. Members are posting about their challenges, in a continued effort to raise awareness. My friend Rob Becker even started a website to share his experience, and his observations about preparing to take public transportation with a wheelchair are worth reading.

I’m so excited and motivated by our amazing team. We have raised over $71,000, with an incredible 731 donors and counting. I need to stop and appreciate those numbers for a moment. More than SEVEN HUNDRED people have given to the cause. There are people on this team who I’ve never even met. And we still have a month of fundraising to go. Read More>

|Categories: Cure | Tags: , , , | Permalink

To My Nephew on His 3rd Birthday

Dear Jack,

Yesterday was your birthday party. We went to Nick’s Cove in Tomales Bay, which has become a tradition, because at this point, the adults are still in charge and we like oysters, pink sparkling wine, and bloody marys. Nick’s is a great place for the whole family, though. You ate macaroni and cheese with dungeness crab, opened a few presents (“PURPLE MAMOKO!”), and then went fishing for seaweed out on the pier with Scarlett. It was a beautiful, sunny day and even a swarm of aggressive yellow jackets couldn’t ruin the fun. Deciding it was either us or them, we tried to get them drunk on apple juice…it’s a long story. No one got stung.

Afterward, we came back to my house for dinner, more presents, and a very ornate Frozen performance by you and Scarlett, which involved Pops hiding behind a blanket and sprinkling Styrofoam “snow” over the two of you while you spun, gyrated, and sang. It was certainly the highlight of my day.

It’s been my habit to write letters on your birthday, both to commemorate another year and so that you know how important you are to me. As my ALS progresses, I find myself wondering how many more letters I’ll be able to write to you, what the chances are that this will be the last one. If it is (and even if it’s not), there are a few things that you should know.  Read More>

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

To-Do or not To-Do

I have a love/hate relationship with my to-do list. If it’s very long and contains complicated phrases like “call allergist for Scarlett” or “deal with insurance”, I feel a little heaviness inside, that weight of obligation. But as I cruise through the items, it’s a great feeling to check them off, to know that I’ve accomplished something.

Like most people, I tend to get more done when I’m busy. It’s so easy to ignore a tiny amount of work, and instead start rabidly watching season six of Pretty Little Liars on Amazon Prime. I mean, I’m not saying I did that yesterday, but I’m sure someone somewhere did. And I just want to make sure you know it was not me. 

There’s a story from my college days that illustrates what happens to me when I’m not busy enough. I was taking a Zoology class on Mondays, Wednesdays, and Fridays. The class began at 11 AM, a perfectly reasonable hour even for a carbo-coma college student who mainly subsisted on bagels and Papa John’s breadsticks. Class was across campus, so I had to ride my bike, but it was a straight shot from my dorm, and nothing to complain about. Read More>

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