Category Archives: Diagnosis

Every Wednesday

Yesterday my hometown newspaper, The Wednesday Journal, featured a front page article about my life with ALS. The writer, Ken Trainor, and I spoke on the phone several times before the piece ran. He visited my parents to get their take on how ALS has affected our family. He even interviewed a friend and former neighbor. And yesterday he came out with a beautiful, thoughtful article that you can read here.

When I was a kid growing up in Oak Park, Illinois, I had a job delivering The Wednesday Journal. If you are particularly observant, you may have guessed that I delivered the paper on Wednesdays. On those mornings, I got up early and went across the street to my friend Stephanie’s house, where the papers were sitting in flat stacks, next to a large box of plastic bags.

First, we folded them up, wrapped a rubber band around each one, and bagged it. They left our hands black with ink, and the smell of it lingered, so that if I picture Steph’s enclosed front porch, even now, I can summon up the scent—fresh ink on paper and her schnauzer named Fritz—that goes with it. We piled our bagged papers into enormous over-the-shoulder tote bags provided by The Wednesday Journal, and headed off on our route. I had the east side of Scoville Avenue and she had the west. For four blocks, we perfected our paper-tossing arcs, standing on the sidewalk and launching the bags onto each front stoop. I loved nailing a perfect landing. Then we went home and got ready for school. Read More>

My Body, Myself

After my ALS diagnosis was doubly confirmed by UCSF and the Mayo Clinic in Rochester, I decided to send a mass email letting my friends and family know what was happening. Partly, it felt ridiculous to be putting this kind of information in email, but I didn’t know how else to share it. When you give people bad news, you often end up managing their reactions, even if it’s your bad news. That doesn’t upset me; I know how hard it is to say the right thing when there is no right thing to say. But I couldn’t imagine the countless conversations as I explained ALS, my newfound area of expertise.

So I opted for email, and I received a lot of beautiful and thoughtful responses. Maybe people didn’t know exactly what to say, but the notes were heartwarming to read. Many were telling me that they believed in me, that they loved me, that they were shocked. Even hearing that people were speechless felt like a form of support. I knew the feeling of being speechless.

One friend asked if I was mad at my body. It was an interesting question, and one I hadn’t thought about before. So I gave it some thought and decided that no, I wasn’t mad at my body. I felt like this was something that had happened to me, not something that I had done to myself. Fast forward three years and I’m still not mad at my body. I can feel the effort it’s making to work correctly, even as things get more difficult. Read More>