Monthly Archives: August 2015

Language of Life

Otto, our now 11-week-old puppy, was sick last week, with some kind of rash on his neck and a vomiting problem. We feed him healthy dog food that comes from a reputable store, yet he still insists on eating leaves, sticks, feces and winged insects in the backyard. I get it, he’s a dog, and there’s not much you can do about his dietary predilections. “Don’t eat that bee!”, for example, proved to be ineffective.

But Scarlett was really grossed out by his throwing up. “IF I hear him making that sound one more time like this,” she announced, making a gagging sound herself, “I will completely lose it.

I don’t think I talk like that. In fact, I often suspect she gets most of her vocabulary and phrasing from the books that we read. But per-haps her dramatic flair and penchant for hyperbole do come from me. My husband is a pretty calm person. You can make him mad (and, in case anyone is curious, I know exactly how to do that), but for the most part he’s even-keeled and takes things in stride. Thus far, those qualities do not seem to have rubbed off on our daughter.

“I’m mad at you,” she’ll inform me, after watching two episodes of the Care Bears on our giant TV. “You never let me have anything, and this behavior is unacceptable.” This is because I said no to gum. Read More>

In the Words of The Team

It’s Day 6 of #whatwouldyougive. The observations and insights from the team members have really touched me. It didn’t take long for people to clue into emotions and feelings that I’ve been having for the past three years. I’ll let them speak for themselves, after reiterating how grateful I feel that they took on this challenge. The campaign feels like a success, with nearly 100K raised, and that has everything to do with the team members and donors. THANK YOU ALL, from the bottom of my wheelchair (or perhaps the bottom of something less disgusting.)

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“The most challenging part was that I couldn’t make friends as easily as I normally do. I can talk to a wall and love having conversations with strangers. I just didn’t feel like me! That is the most upsetting part of ALS; people’s personalities, what makes you uniquely you, eventually gets stripped away.”

“Some unexpected things I’ve learned today about not being able to use a limb: it hurts, throws off your equilibrium, and can even make you feel claustrophobic. Multiply that by 2, 3, or 4 permanently and you have the experience of an #ALS patient.” 

“During the day I felt many emotions: sad, rude, introverted, inefficient and annoyed. I carried a note around with me explaining my silence. The second person I showed it to (at early yoga) said her brother died of ALS.” Read More>

How Goes the Giving

It’s day three of #whatwouldyougive, and thoughts have been coming in from the participants.

“I notice how powerless I feel trying to parent my three kids without the use of my voice.”

“This is more difficult than I imagined.”

“I’ve been silent since I got up 4 hours ago. The true test is when we collect the kids from camp and head to lunch.”

“It’s only 2pm and already I feel humbled.”

“Even a few short hours without the use of my right arm and I cannot fathom what it’s like to live with ALS.”

“Crazy thunderstorms woke the children up six times last night (yes really) and while I admit that the first few times I sort of delighted in reminding my husband he had to get up and get them back into their beds, by the fourth time I just wanted to get up myself. It was so frustrating not to be able to do my part.”

“Bittersweet waking up with full use of my arms and hands today. Couldn’t help but think of all the ALS patients that would give anything to wake up, as if from a dream, with full use of their arms, their hands, their legs, their voice.”

Such understandable and honest reactions. I’m so grateful to this team for making themselves uncomfortable, even for a short amount of time, to help make the point that no one should have to live with ALS. Read More>