Stolen Summer

My memories of summer start with heat. In the mornings, coming down to breakfast, hair sticky with sweat. Spending afternoons at the community pool, eating melted peanut butter and jelly sandwiches and hot fruit, wishing our parents would spring for something from the concession: salty popcorn, Sno cones, nachos dripping with gooey cheese. Evenings, still so light that we could sometimes walk down the block to the library in our pajamas, which felt like some incredible adventure. Then running through the grass, catching fireflies until it was time to go to sleep again, the open windows letting in some breeze, kicking at the single sheet, all that was manageable with the thick air.

I grew up outside Chicago, in a suburb called Oak Park, where many of my family and friends still live. As I got older, summer meant “L” rides to the beach,  the final blocks traversed with a pair of rollerblades, a skill I never quite mastered, so that on the downhill parts, I could almost always be trusted to run into a newsstand.

At the beach, my girlfriends and I lathered ourselves with suntan oil, virtually nothing protective about it, and laid out on bright towels to bake ourselves golden. We met boys, lied about our ages, and once drank spiked kool-aid from a large cooler with boisterous characters we’d only just met. Read More>

Otto

Today, SweatpantsandCoffee published one of my blog posts, with a new intro and a link to the #whatwouldyougive campaign. So cool! Thanks Amy Ferris, Nanea Hoffman, and Eva Zimmerman for making it happen. You ladies are fabulous! Now onto today’s blog…

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Otto is asleep in a crate next to the dining room table, curled up on top of one of my old purple cardigans and a towel. Breathing evenly, he snuggles with the new toy that Scarlett picked out for him, a squeaky bright green bunny with a name that’s fun to say: Kong Wubba. Kong WUB-BA.

Otto is a new puppy, not quite 8 weeks old, and, like the average human baby, he sleeps 18 hours a day. Some of this happens in my lap, and despite having lived with him for less than two full days, our family has fallen in love. I’ll enjoy my little lap dog while I can. He came from a litter of 13 German Shorthaired Pointers. Big, high energy hunting dogs.

We went to visit the puppies in their home in Sacramento about a week ago, where it was 100° and all of the dogs, plus Scarlett, were wilting in the heat. There was no way to get my wheelchair into the house, but I was able to roll it through to the backyard, where I sought out a small patch of shade, and succumbed to the wiggly puppy invasion. Puppies have no fear, and the wheelchair didn’t faze them a bit. They climbed all over me, finding little nooks to tuck their tiny bodies into, and then settling down to chew on my Uggs, a  stupid choice of footwear given the weather.  Read More>

Speed4Kari

I’ll keep the post short today, because I’m introducing a new Face of ALS. It’s never easy to do this (do I say that every time?) but this one is really hard. Kari Robben is 28. She has three little kids.

HOW DOES THIS DISEASE STILL EXIST? It’s medieval. It should be a joke. It should have some kind of treatment, some measure of hope. It should not be allowed to promise that more kids will lose their parents.

I guess lately I take everything back to the #whatwouldyougive campaign, but it’s stories like Kari’s that are the reason we need more action and attention.  Yesterday was a really good day for the campaign. It was ALS activist Michele Dupree’s birthday, and all she asked for was that people donate to her #whatwouldyougive fundraising page, while she used an Eye Gaze device to communicate all day. More than $1,300 later, Michele is one of our top fundraisers, and I’m guessing she had a pretty good birthday.

Then the publishing company I used to work for started a team and donations came rolling in. In one day, they became our 6th highest fundraiser, also with more than $1,300. It feels like there’s a lot of support and power behind this, and that helps to balance the sadness I felt when I first heard Kari’s story.

Kari herself is resolved. She reached out to tell me about her efforts to raise awareness of this disease that was so new to her. She wants to challenge Tim McGraw to dump ice on his head in August. She’s contacted Ellen DeGeneres. “I keep telling myself, little ripples make BIG waves,” she wrote in one email.

She was diagnosed so recently; there really is time for her to beat this thing and spend the rest of her long life with her beautiful family. What would you give to make that happen? 

Read Kari’s story here.