Category Archives: Life

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

Just Monday

I woke up early this morning, my hair matted down under my breathing mask, so thirsty I could feel the dry pockets in my mouth eviscerating all the moisture in the room. Sleeping is uncomfortable now, so that sometimes, when I find myself in the perfect position (usually on my side, with my legs tucked up in psychic regression) I feel that I have never been happier. Take something away, take it away again and again, and then return it, even just partially. It’s either the definition of bliss or the definition of torture. I can’t decide.

Otto woke up at 5:30 AM, crying in his crate next to Rob’s side of the bed. He’s been sleeping pretty well, but it’s still something like having a new baby, and Rob mutters his displeasure at these early risings. It’s not just the dog. When I’m thirsty in the middle of the night, I need Rob’s help to wrestle the mask up above my lips, to hold my water bottle up so I can drink. When my legs are so leaden under blankets that used to feel like air, I have to ask him to roll me over. Then the dog cries, then Scarlett appears. Then it’s breakfast time, the day has begun, and we feel that we didn’t get quite enough night.

The nighttime difficulties make me feel the most helpless. I lie there for as long as I can, not wanting anyone else to be disturbed, and still, eventually, I throw the sleep grenade. I have to. Read More>

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