Category Archives: Relationships

My Favorite Helper

Rob is out of town this week, and I decided to go it alone (with Scarlett) for three nights. This was no small decision. Though I used to love a night or two on my own while Rob traveled for work (think cereal for dinner and bad tv), there are now so many details to think through, and so much planning required, that it’s become more stressful than fun. In a practical sense, it would be easier to have someone stay at the house with me, and there is no shortage of people who would be happy to do that.

But I want to do it myself. I want to have dinner with my daughter, give her a bath, read to her, put her to bed, and watch crap TV until my own bedtime. I want to be the one to guide her back to her room when she wanders out at 10pm, lost in the sleepy confusion of a dream. Am I being independent or stubborn? Probably a bit of both.

Of course, I would never put Scarlett in a dangerous situation. Here’s the main reason that it’s possible for me to stay home with only a 4-year-old to help with the tough stuff: because she can help. Read More>

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

Speed4Jay

When I was first diagnosed with ALS, I wasn’t sure I really wanted to talk to anyone else who had it. I was in shock, and I wanted to hold everything close to me, including my particular situation. But as time went on, and my disease progressed to the point where it was affecting many aspects of my life, I realized that I needed support from people who truly knew what I was going through. I tried to ask a few questions at ALS forums online, but I found the responses to be harsh and negative. I asked my doctor to introduce me to other patients who were young and who had kids. And when I wrote an essay on parenting in The New York Times, people with ALS reached out to me.

I struggle with the words to explain what it has been like to find people who are also experiencing this disease. Our lives—and even our symptoms—are different in many ways. We are spread out across the country. We wouldn’t know each other if not for ALS. But now we are going through this, apart-but-together, and it’s a source of comfort to know that. We can ask each other questions, some of us can talk on the phone, others send notes of support and encouragement. Sometimes we are angry and we can just be angry together. Read More>

|Categories: Diagnosis, Doctors, Life, Parenting, Progression, Relationships | Tags: , , , | Permalink

That Time I Was Psychic

I was 26 and working for a book publishing company just outside of San Francisco. My job in marketing meant that I met with advertisers occasionally. Unfortunately for the ad reps, we had such small budgets for each book that we never really spent money, except maybe once or twice a year in the largest industry magazines. One of those magazines had just hired a new publisher, and he was doing the rounds of all the publishing houses in New York and California, meeting the important people who made decisions. And also meeting me.

When Rob walked into my office for the first time, he was wearing a suit and tie, something that no one wore there ever. Bay Area publishing? We were lucky if people had real shoes on. Read More>

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