Tag Archives: faces of als

Notes on a Party

The Westin Copley Place in Boston was the location for this year’s ALS TDI White Coat Affair, a dinner and fundraiser that followed the organization’s 10th Annual Leadership Summit last week. Rob and I skipped the week of summit meetings, but showed up unfashionably on time for the party on Saturday night.

Corey Reich was sitting towards the entrance when the event began, looking his usual dapper self in a striped tie. I don’t like to hog Corey at these things, because I’m lucky enough to get to see him and his amazing family with some regularity back home.

I was introduced to Ellen Corindia, who’s had ALS for thirteen years and who uses a computer screen to communicate. Despite being in a wheelchair, Ellen went skiing with her partner last winter. They showed me the video, him skiing behind her, guiding her chair as the two of them zoomed down the mountain. Read More>

|Categories: Cure, Drugs, Relationships, Research | Tags: , , , , | Permalink

Being Someone Else

When Rob and I lived in New York, I walked to work. It took me about 20 minutes to get to my job at a Manhattan publishing house, something that sounds so glamorous when you write it, and actually was occasionally that way. Picturing myself walking across town on 23rd Street in heels is like recalling a movie I’ve watched over and over again (something besides Wayne’s World.) Could that have been me?

I would likely have these disconnected feelings about that time even if I didn’t have ALS. After all, so much has changed. We moved to California, I worked from home in yoga pants and had a baby. I started hanging out at playgrounds and speaking knowledgeably—even passionately!—about Music Together and tumbling classes. Heel wearing had declined considerably long before I started tripping over my own feet.

But back when I first moved to New York, it was November 2005, and the staff at my company was working on a book due to launch the following year. Read More>

|Categories: Life, Parenting, Progression, Relationships, Vanity | 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