Phasing Out—A Guest Post by Carrey

Many thanks to Carrey Robinson Dewey for providing today’s guest post. Carrey first shared this on Facebook, and I thought it was so honest and enlightening. This is life with ALS: abilities—moments, really—are taken from us. Family life changes in ways we didn’t foresee and do not welcome.

It isn’t easy, and it requires us to shift our thinking every day so that we don’t drown in the reality of the disease. So that we can keep taking care of the people we love, even if we sometimes feel that we’re doing it from the sidelines.

PHASING OUT

Our morning routines have been nuts-o here at the Dewey household the past few years. In the morning, I wake up first, craft my edible art we call lunches, get the basic breakfast supplies out, cut fruit, empty the dishwasher, greet hubby when he comes downstairs, fix his collar, hand him breakfast, kiss him goodbye—finish getting lunches, backpacks, folders ready, find shoes, fix bedhead, stick a hair bow in, and a final “don’t forget to brush your teeth,” kiss them and put them on the bus routine!

That was all before ALS. Read More>

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You’re Not You

On Saturday night I watched the just-released movie You’re Not You, starring Hilary Swank as a woman with ALS. Swank’s character, Kate, is 35 when the movie—and her disease—begins, and I wasn’t sure what to expect from a film that set out to tell a story that is so close to my own. Though I initially understood this to be a memoir, it is actually based on a novel written in 2007 by Michelle Wildgen. A very brief scouring of the Internet did not uncover Wildgen’s ALS connection or the source of her ability (or is it the screenwriters’ ability?) to so cleanly access many of the emotions and challenges that come with having this disease.

It was my story, at the same time that it wasn’t my story:

The pre-ALS life, full and fulfilling: check.

The initial symptoms, the confusion: check.

Fast forward to a husband helping with clothing: check.

The feelings of blame and guilt: check.

The comfort that comes from connecting with other ALS patients: check, check, check.

But… Read More>

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Words to Live By

I love words. Some of them I love just for their sound: eviscerate, mercurial, novelty, snacks. Others I love for their meaning: ameliorate, ostensibly, ebullient, snacks. So from the start of Scarlett’s life, I talked to her using at least a few words from my old college-bound-student vocabulary book.

I also think it’s hilarious when really little kids use really big words, so when she was a year old and starting to talk a lot, I taught her a game of synonyms.

“What’s another word for careful?” I would ask, and she responded with “vigilant.” She was learning, and I was entertained. I’ll note here that I doubt she remembers this game or what the word vigilant actually means. We let it trail off when I couldn’t get her to pick up on daily=quotidian. That one might have been a bit of a stretch. But I’m telling this part of the story to illustrate how important the word vigilant was to us in those earlier days. I’m not sure it would even have occurred to me to say it to her, except that back then we had what is known in the parenting world as “a runner.” Read More>

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