the ice bucket

I remember: I was sitting on the floor in my bedroom, August, maybe September. Mom entered my room as she often did, but not to tell me it was time for dinner or even to ask about my day. Tonight she came to tell me that my grandpa was dying of an incurable disease, one I never knew existed.

Lou Gehrig’s disease — ALS, Amyotrophic lateral sclerosis, she calmly explained all of the names and symptoms. He might live a few months, he might live a few years and I’d hoped, he could go on forever. ‘Incurable,” like expiration dates and bedtimes, was just another suggestion. My mind wouldn’t register that Grandpa Ed, 68 and spry, had anything but life ahead of him.

Over the next few months I pushed thoughts of the disease aside. Save for updates from my mom and the painful weekly reminders when I’d see Grandpa Ed at church, I resorted to a comfortable denial. How? I wasn’t prepared for this. For the first time I was forced to think about life without him at birthday parties, Thanksgiving dinner, my wedding day. It didn’t make sense.

Months advanced and so did the disease. I now clung to his words and presence knowing I needed to collect and carry everything from those days forward. As ALS continued to chip at his motor skills, he went from standing, then with a cane, then he didn’t stand — and then, he couldn’t eat, go to the bathroom, hold up his head. His decline was heartbreaking. The last time I spent with Grandpa Ed was Christmas day, 2003. He sat at the head of the dining room table as he always had, a sliver of the man he physically once was. He passed away in his home two days later, surrounded by his wife and children. He made it through mere months with ALS.

* * *

When I hear ice bucket I think of that day in 2003, sitting on the floor in my bedroom, where I learned I didn’t have long with him. It brings me chills, because at that moment I assumed he’d make it. After all, he was strong, and when he couldn’t be strong, he’d be resilient, and when he couldn’t be resilient, he had us, his family, to cheer him on and shower him with love.

Now I feel the chill again, and the surfacing of emotions that I have felt for 11 years. It brings tears to my eyes to think about this all again and to write of it at length; alternately, beyond the sadness it brings back great memories of someone I have loved deeper and more true than I’ve ever known.

So here is the face that I associate with ALS: Edmond Chester Leonard, husband to Alice Germaine Vandal, father of six outstanding children, grandfather to 17 grandchildren. Architect and lover of solving problems. He designed libraries and water slides and board games, could solve Rubik’s cubes, barbecued. He built houses and gardens, he was involved in his community, he cared deeply for his family. He drove a Blazer then a Cadillac, he played games with his grandchildren by the fire, he loved walks in the park, he always washed the dishes. He was a classic and his laugh, unforgettable — from the heart. He carried us through and held us together.

He loved us so much, and we loved him.

Me and Grandpa, Minot International Airport, 1988.
When I think of ALS, I think of every moment with my grandpa.
I think of his laugh. I think of his tennis shoes. I think of him helping me build a race car out of a mousetrap. I think of the day as a child when he took me north, near the small North Dakota town where he was born, and we spent the afternoon searching for arrowheads in farmer’s fields. I think of how without him, there would be no me.
For Grandpa Ed — who instilled in me a loyalty to family, a dedication to work, a curiosity for the unknown. You have made and changed my life.

I had a fantastic weekend with family visiting from North Dakota, South Dakota, and California — many things on the agenda that I don’t usually get to do in the city! Thank you for all the groovy company and good times! And on that note…
(PS…check out my inkstagram for full-sized images!)


I arrived back from San Francisco last night after eight days of freedom and GLORY. It was lovely and I had a swell time with good company, eating good food, and relaxing often. I hadn’t been there since August, but it felt as though I’d never left.

(Adam, why did I not get any photos of you? Please insert many productive, smiling and energetic photos of Adam Hurly here.)

Estelle & I had an afternoon luncheon, Starbucks, and Sephora — where she did herself up in a makeup tribute to Mondo Guerra before purchasing blue mascara.

It was mostly chilly, a little rain, but much more pleasant than snow!

We went to the flea market on Saturday, 02 Jan. Glorious! So many goods I wish I could have taken home with me (I couldn’t believe I left empty-handed!) Amy found her 1977 Conference Champions future holiday punch bowl, Eddie a(nother) rifle and gold teeth (!), and Carlos an old Vietnam military bag and old photographs. Estelle got…what did you get?

Estelle with Amy’s prize on her head.

Robert: “I look like a hipster.”

After eating at one of the most delicious taquerias in all of the Mission district and a hearty dose of thrifting, we found a graffitied alley to take photos.
For whatever reason, I had to have my photo taken by this odd Ford truck, tucked away in a parking garage!

I spent an afternoon roaming the San Francisco Museum of Modern Art, where an amazing Henri Cartier-Bresson exhibit was on display.

Young runs Petite Deli on Columbus Avenue in North Beach. I visited her sandwich shop one day this past summer and found her to be most unforgettable. When I returned to the city I knew I had to visit her! She makes me smile. “My name is Young…like young and old!” She even claimed to remember me. Either way, I was happy to see her again!

Estelle is a babe.

Eddie’s nightstand. There’s a lot going on here.

I tucked Estelle into a burrito one final time, said goodnight, then cried myself to sleep.

The scenes during the flight back were beautiful.

Just a small snippet of my incredible visit to the city — you can find more on my flickr,

I miss it all! But it’s not goodbye, rather “see you soon!”

xo . j