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.
Once a month, we had to go door-to-door to ask for money (a dollar or two, I can’t remember) for this paper that no one had actually subscribed to. That was always interesting. Some people gave us money, most didn’t, and one woman always invited me inside and gave me a cookie. I recall a different woman angrily complaining that it was a cheap shot to send cute little kids around to make people feel guilty. We would meet someone from the newspaper at the neighborhood library to pass the money on, and we got a cut of that. It was my first job, and I think it informed some of my work as a fundraiser–I still don’t like asking for money, but I understand that it works better if you use cute kids.
So I was happy to have my story told in this paper that provided such a formative experience for me. It was particularly enlightening to read the things my parents told Ken Trainor. They were things that we haven’t discussed, including their initial reactions to the news of my diagnosis, which I shared with them from the car as Rob and I were driving away from the hospital that day in June 2012.
I remember being terrified to call them. I had no idea what I was going to say, and part of me was worried that I was going to laugh. I don’t remember what I did say. I think I tried to be reassuring. I think I tried to get off the phone pretty quickly. Obviously it was a hard moment for them, and I didn’t know how they coped with it. Maybe I didn’t have room at the time to understand how anyone else was coping.
I’m really grateful to Ken for telling our story in such a wonderful and thorough way, so that even I learned things I hadn’t known before. Oak Park was an amazing place to grow up, full of good people who have rallied around me and my family since my diagnosis. A lot of our support comes from these incredible folks in the Oak Park and River Forest areas, where I first learned what it meant to be a part of a community.
I like to think it’s still a big part of who I am.