Tag Archives: als tdi

Speed4Flora

Rob and I were making our exit from the ALS TDI White Coat Affair gala in November, when we were flagged down by three women sitting together at a round table. Two of them were ALS advocates, and they were leaning in towards a third, a really lovely woman named Flora Fasolya, who was there from New York. One of the women, Michele Dupree, explained to me that Flora had been diagnosed about a year earlier, and that she needed to talk to someone who understood some of the physical difficulties she had been having.

We talked for a little while, Flora asking questions about how Rob and I manage certain parts of our day in an attempt to learn how she and her boyfriend, Chris, can adjust to their new life with ALS. I know Flora spoke with many of the other people at the party that night, too. She was gathering information, something that everyone with ALS should do. Even if no one knows exactly what to expect from this disease, and when, we can absolutely learn from each other’s experiences. Read More>

|Categories: Diagnosis, Life, Progression, Relationships | Tags: , , , , | Permalink

In the Spirit

“You have been my friend,” replied Charlotte. “That in itself is a tremendous thing. I wove my webs for you because I liked you. After all, what’s a life, anyway? We’re born, we live a little while, we die. A spider’s life can’t help being something of a mess, with all this trapping and eating flies. By helping you, perhaps I was trying to lift up my life a trifle. Heaven knows anyone’s life can stand a little of that.”
—Charlotte’s Web by E.B. White

Scarlett and I read Charlotte’s Web together over the course of a few days. I wasn’t sure she’d be into it, but she loved the story of Wilbur, the runty baby pig who was rescued and bottle-fed by a little farm girl, and how he then met a spider who became his best friend and saved his life.

Scarlett was also very interested towards the end of the book, when I burst into tears while reading about Charlotte’s death. She curled up in my lap when it was over, and I could see her trying to squeeze out a few tears, too. But then she said, “I want to go look at the Christmas presents.” Read More>

|Categories: Life, Parenting, Relationships | Tags: , , | Permalink

Speed4Sarah Fall Fundraiser

My baby brother Paul is six years younger than me. This is currently confusing, because although I still see him as a chubby adorable child, he happens to be 30 years old. This means that he is—and has been for some time—an adult (still adorable.) And that means that he can do things like support himself, be in a serious relationship, and band together with his good friends to set up a fundraiser on Speed4Sarah’s behalf, which he did the Friday night after Thanksgiving.

The idea, I believe, came from the girls. I’ve known the sweet Anna Biggins and her family for years, since back when she was a Schroeder and before she had two kids, little blond babies with the names of fairies. I asked her brother Eric to King of Hearts, our high school’s version of a Sadie Hawkins dance. Our moms are friends who used to teach together, and Anna’s mom has read every novel worth reading. She writes her name inside them before passing them on liberally. I like this fact. I wonder if the books always make it back home. I wonder if I’ve accidentally stolen any of them.

Anna is friends with Elyse Caringella, a pretty pixie who has written me emails that make me laugh, and who felt motivated to organize an entire event to raise money for ALS, despite never having met me. Read More>

|Categories: Life, Relationships, Research | Tags: , , , , , , | Permalink