Yesterday, four of my children and I drove 30 minutes to take a walk in the park. It was a beautiful autumn Sunday, perfect for a leisurely stroll among the falling leaves. When we arrived, there was nowhere to park, though; cars lined the streets for blocks. We prayed for a good parking spot because we wanted to start our walk right at 10:00am, and it was already 9:45am. Ah, there was the spot! We parked, unloaded, and quickly made our way down a golden, leaf-covered side street.
Across a busy road was the park; tents and balloons and music filled the air.
“How will we find him?” my son asked.
“I don’t know; we’ll just have to look for the sign. Look for Team EUTEE,” I answered. Eutee, short for Eutizzi, is the nickname for my uncle Jim who was diagnosed with ALS (or Lou Gehrig’s disease) five years ago. This is the third year we have participated in the Walk to Defeat ALS on his behalf.
After a bit of searching, I caught sight of his banner, jimsjourneywithals.org, and we met up with his “team”: nearly 100 friends and family he has acquired over the years. The first year he formed a team, he raised more money than any other group had for the walk. He is the Southeastern Wisconsin chapter’s spokesperson for ALS. He even followed in Christopher Reeves’ footsteps as the keynote speaker at the annual gala “Evening of Hope”, inspiring so many to continue supporting the cause and fighting for a cure.
For me, he is my Uncle Jimmy. I remember him playing the drums in my grandparents’ basement; he loved Rush, David Bowie, and others. I remember him leading the Homestead High School band as the drum major in the 4th of July parade and the look of pride on my grandma’s face. I remember him struggling at times through his studies in Landscape Architecture at UW-Madison, and how he became a successful architect at Lied’s Nursery. I remember the scary KISS poster on his bedroom wall and the Dallas Cowboy cheerleaders poster on his door.
Eventually, he followed in his father’s footsteps and successfully transitioned into Pharmaceutical Sales. That easy-going, fun, people-loving demeanor they both had served him well in sales. Just like it was with my grandpa, everyone loves Jim.
Unfortunately, these days the similarity between them is not something people love to see so much. When I finally saw Jim after the walk, he was in a new, special scooter, with his beige windbreaker and navy track pants on (just like my grandpa used to wear). The toll of ALS has aged him considerably, and he too closely resembles my grandfather, who passed away 10 years ago. But those eyes, cool blue, yet filled with warmth and compassion for others, and yes, still hope, also remind me of my grandfather. These two men are some of the greatest I have known in my life. The influence they have had on others is remarkable. Their kindness and respect for and interest in others is unmatched. Their positive outlook in the face of such daunting odds is incomparable.
After taking a picture with him and promising to visit soon, we headed out, stopping for some free hamburgers and pizza (the ALS Association goes all out for this event). As we sat on the grass eating, we saw other scooters ride past with other ALS fighters, only they had a lot less fight left in them. Their scooters were reclined, their bodies covered in hats and blankets to ward off the crisp autumn air, their expressions weakened by the disease that destroys all muscle function over time. I recognized them as future images of my uncle, unless a cure is found.
I noticed the twitching, the struggle to manage his facial muscles, to speak clearly, even in our brief exchange yesterday. I hadn’t noticed the facial tremors last time. My heart is heavy with love and compassion for him, for his two grown sons, two young children, and his wife, who carries an incredible burden of providing for and managing their home and family (thank God that He gifted her with a Type A personality!) My heart is also lifted at the sight of hundreds upon hundreds of people walking for their loved ones, co-workers, friends with ALS. There is a sense of expectation and hope for the future at this event. People come because they believe a cure will be found. They put their money on it. My uncle’s team alone raised over $10,000 yesterday. The Bible says, “Where your treasure is, there your heart will be also.” Our hearts were with Jim and Steve and Kathy and all the other ALS fighters out there yesterday.
Please check out my uncle Jim’s blog: jimsjourneywithals.org. He is an inspiration for all of us of what it means to live and love this life, despite the obstacles. Pray for a cure. As the t-shirts said yesterday: “Got hope?” “Yep.”
Do you or did you know someone with ALS? Take a moment to honor them here today, with a special thought or remembrance.
(This is a post I wrote on October 17, 2013, but it sat unpublished for a year. This weekend will be the next Walk to Defeat ALS in Southeastern Wisconsin. I hope this raises awareness, compassion, funds, and ultimately hope for this devastating disease.)