Category Archives: Relationships

The World at Large

Last night, Rob, Scarlett and I watched Ghostbusters. I’m not sure if it was an advisable choice for a six-year-old or not, but it’s too late now, so I don’t want to hear your thoughts on that, Dad. (P. S. I love you!) Scarlett seemed to really enjoy it, particularly the fat green blob attacking a New York hotdog cart and the scene where Ray fell out of bed in the middle of the night after a ghost unzipped his pants. “Is this part going to be inappropriate?” she leaned over to ask me. “Um.” I said.

Rob hadn’t seen the movie since 1984, so I tried my best–mostly successfully–to not quote along with the entire thing, the way I am perfectly capable of doing. Ghostbusters is rated PG, which means Scarlett should definitely be able to see it, since most of the Pixar and Disney movies she watches are also rated PG. But apparently things were a little bit different in 1984, because I’m pretty sure you don’t hear the words prick, pissed, bitch, ass, shit or goddammit in, say, Finding Dory.

Why am I talking about Ghostbusters? There seem to be so many other things to discuss, both ALS related and otherwise. Read More>

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

Life and the Living

I know that everyone dies. I’ve known this for as long as I can remember, since I was a child and I had nightmares of losing my grandmother, a woman who will turn 90 in August and remains sharp and active, a fact for which I am grateful.

It’s not that I want to fight death and aging, the way the characters did in Gary Shteyngart’s great Super Sad True Love Story. People are born, and people must die. And in between is the living, with all of the happiness and suffering it entails.

Sometimes I wonder who I think I am to ask people to rally around a cause just because it affects me and my family. Everyone has their issues. And in many ways in my life, I’ve been far luckier than most. Still, I want more time. And I want more quality time, not time spent feeling my body get weaker and my abilities abandoning me like sailors leaping from a shipwreck. I have to remind myself that I’m only 37, and that this is not old, despite the way my body looks and feels. That it’s OK to wish for more time. Read More>

|Categories: Diagnosis, Faces, Life, Progression, Relationships | Tags: , , | Permalink

Tossing Corn

My friend Corey Reich has been living with ALS for nine years. Corey’s symptoms started when he was away at college, and he recently turned 30, a milestone he said he wasn’t expecting to meet.

I was introduced to Corey through our doctor, who told me that this was a family I should get to know. He was absolutely right. The funny thing is, neither Corey nor I ever go to an ALS clinic anymore (a topic for a future blog), but our families still get together every few months. Corey is an Oakland A’s fan, a tennis coach, and a lover of good food. He and his family are awesome, and they should get to be together for a long time. Read More>

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