Sarah Kalail

This morning I found out that a woman named Sarah Kalail had passed away from ALS. I didn’t know Sarah well. I don’t know how old she was or when she was diagnosed, but I do know she had grandchildren. Sarah and I were both on the President’s Advisory Board for The ALS Association. Her contributions to our calls came in the form of a computer-generated voice, which she used to talk about concerns for her family, the finances of those suffering from ALS, and the patient care piece of the disease. Sarah was outspoken, despite her inability to speak.

There are so many people who knew Sarah better than I did, and they will do the job of remembering her and sharing stories, so that the rest of us can learn more about her life. I just feel sad. Sad that someone who was once healthy and alive isn’t that way anymore.

I’ve been scrolling through Sarah’s Facebook page this morning, reading the posts of the people who miss her. I read some of Sarah’s own posts, including one about traveling—something I wrote about so recently. Sarah once loved to travel, to explore new cities with her husband and their sons. By 2013, she could no longer travel by plane, and even driving for long periods of time was difficult. But, she wrote “I find great solace in my memories.” Read More>

|Categories: Faces, Life | Tags: | Permalink

The Leadership Summit, eventually

This morning Scarlett and I were sitting at the dining room table where she was eating a typical breakfast of spaghetti and meatballs and I was drinking a cup of tea.

“I didn’t blog yesterday,” I told her, as if admitting something scandalous.

She seemed unperturbed, busy aiming an entire handful of grated parmesan cheese directly into her mouth.

“Please stop doing that,” I said, and then had a flashback to my own childhood and visits to see my Aunt Theresa and Uncle John. Theresa was my grandmother’s sister and everything about her and Uncle John seemed very old and very Italian. Their couch was covered in plastic. The fruit on their coffee table was wax. When we arrived in the morning, they were always eating cold spaghetti, and Uncle John would pinch our cheeks so hard they stayed pink for the remainder of the visit.

Scarlett continued eating her spaghetti, oblivious to my distraction.

“What do you think I should blog about?” I asked her.

“Well,” she said thoughtfully, “You could definitely blog about Otto throwing up and how Jack almost dropped my tooth fairy in the throw up.” Read More>

|Categories: Cure, Doctors, Drugs, Faces, Life, Parenting, Relationships, Research | Tags: , , , | Permalink

Ramble On

This month brought travel opportunities that I had to decline. ALS TDI’s Leadership Summit in Boston takes place tomorrow, and many of my friends flew in for the occasion. But it seemed like too much for us. Planes, an uncomfortable travel wheelchair, the breathing machine, hotel rooms. All too complicated.

Later this month, many of my friends and family will gather at Fitzgerald’s in Berwyn, IL for the second annual Speed4Sarah concert and fundraiser. It seems that I should be there for that, but it’s actually been years since we traveled for Thanksgiving. Rob is allergic to holiday travel, in addition to penicillin and bees.

I used to love traveling. When I was fresh out of college, I got a job working for a travel publishing company in the San Francisco Bay Area. I wrote back cover copy for books about far-flung locales like Cuba, Oaxaca, and Wisconsin. I wrote press releases and designed postcards to market our various travel series. I was the traveling publicist for the author Rick Steves, whose Italy guidebook was, and maybe still is, the best-selling travel book in the United States.

It was my job to drive Rick to events and interviews. We got along well. He was impressed by my parallel parking abilities, I was impressed by his uninhibited love of Rod Stewart (including one particularly memorable late-night air guitar performance as we hurtled through Pasadena) Read More>

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