Category Archives: Diagnosis

Blogger Girl

I’ve been blogging since 2007. That’s the year I started Deepish Thoughts, a site to keep friends and family up to date on my life, as well as on the bizarre and hilarious things Rob said. Which were many. When Scarlett was born in 2010, I shifted my attention to The Scarlett Letters, where I posted pictures and wrote to her about her life. And now, obviously, I’ve moved here to record my thoughts and experiences living with ALS.

I can’t keep up with two blogs, let alone three, so each time a new blog is introduced, an old one gets ignored. Or, let’s say it gets its wings, because that just sounds nicer. The blogs mark everything significant that has happened in my life over the course of more than seven years. Engagement, marriage, cross-country move, baby. The death of my beloved Papa, my dear brother-in-law, and several pets. It’s just a life, like any other. But I’m glad, now more than ever, that I chronicled it.

My story, with its unexpected trajectory, might make some people sad. But not me. I look back at those old posts and sometimes I just laugh. As I read about the traveling I’ve done, I find that I’m not mourning the loss of my abilities. Instead, I’m feeling insanely lucky to have seen so many different places. It appears that my past—at least the past I’ve chosen to document, and this is an important distinction—makes me happy. Though I’m not proud of all of it. Read More>

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

Hardly Strictly Anything

This weekend, Scarlett and I went to the Hardly Strictly Bluegrass Festival for our 4th year. The show—a free concert in Golden Gate Park—has been a San Francisco fixture for 13 years, made possible by underwriting from a generous music lover named Warren Hellman, who passed away in 2011, but made sure the festival funding continued.

Like other things we’ve done on an annual basis, this one made me think about all that has changed in our lives. HSB was Scarlett’s first concert, when she was 6 months old. That year, 2010, the three of us walked a mile from our house into the park, and the first act we saw was Emmylou Harris. A free concert brings a very large crowd, and it becomes overwhelming, which is why Rob is sleeping in this photo. But Scarlett loved watching all of the people. Plus, back then, we were nimble. When it was time to leave, we simply ducked out. Walked home.

HSB 2010

The next year, I was having trouble on my feet, but I wouldn’t miss the show. I drove us there on a Friday, parked as close as possible and pushed her in a stroller to the stage where M. Ward was performing. Afterwards, we met my brother-in-law, RC, who popped open a bottle of wine for the Chris Isaak session. Scarlett was in her running phase, and the two of us took turns racing through the crowd to retrieve her. When it was RC’s turn, I sat and thought about that Friends episode where Phoebe tells Chris Isaak his voice is a little girly. Read More>

|Categories: Diagnosis, Life, Parenting, Progression | 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