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>