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.
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Dear Sarah,
My heart is with you and your family. My daughter died recently from ALS and her story is almost the same as yours. I am a Canadian from Ottawa, Canada. Like your self, my daughter was such an inspiration. All she asked was that I get the message out about ALS. She was a fitness instruction at the University of Ottawa as well as a grade school teacher. People loved her.
I am holding you in my prayers every day now.
Michael Rock
103-2270 Braeside Avenue
Ottawa, Ontario K1H 7J7
Cell: 1 613 898 7733
Dear Sarah,
I think about you all the time. I’ve known your Mom & Dad for more than 30 years. I played softball with your Dad most of that time ( I’m sure you know the Deadliners). Please know that Susan (my wife) and I, keep you and your parents in our prayers always.
To be honest, I read your blog at the beginning (2012) and my thoughts always turned to your Mom & Dad. I couldn’t wrap my mind around what they must be going through. I have daughters of my own around your age and all I could do was put myself in your Dad’s place, and selfishly think of how much pain that I would be in. So I stopped reading…but you, and your entire family are so strong, and so wonderful, and an inspiration to so many of us mere mortals, that I can stay away no longer.
Thank you for always writing, and thank you for sharing your lives with us.
Jim
Dear Sarah-
I read the article about your, first in the Wednesday Journal and then on the CNN website. You are so brave and your story brought tears to my eyes. You should know that your fight brings even more commitment and determination to those of us physician-scientists who want nothing more than to find cures for diseases such as ALS. It is what we do and what we live for.
I wish you peace and joy.
Warren
an Oak Park, IL neighbor
Dear Sarah,
I found your blog after reading your article on cnn.com. I am so touched by your words and your story. What an amazing mother you are to your precious daughter and what love you bring to your family. Thank you so much for sharing your story. You are a beautiful, inspiring and courageous person. I will keep you and your family in my prayers.
Melissa
My heart aches for you and your family. You are raising a remarkable girl. Thank you for sharing your story, it is heart-breaking to read, filled with despair but also hope and beauty. I wish you renewed strength and a miracle. As a military widow, I know grief is ever-lasting. As a Mom, this online testimony to your daughter will be a powerful reminder of the love you carry for her. May she feel your presence, today and always, and be lifted up by your everlasting love.
Hello, I just read the CNN article. This story warrants a documentary!
Hi Sarah,
You and your family are in our thoughts and prayers. I pray and agree with you that your daughter will be stronger for sharing in this experience. We recently lost a family member to his 8 year battle with ALS. His wife (age 40) and daughters (ages, 16 and 12), and family have shown remarkable strength during this challenging period. I feel the same strength and love for you and your family within your family and community. We will continue to support ALS research and hope that a cure will be found sooner rather than later. Stay strong and fight the good fight! Many blessings too you!!