Tag Archives: whatwouldyougive

Here Comes the Sun

It’s a dreary morning in my head and out my window. The sky is so white with fog that I feel like I’m trapped inside a snow globe. Our outdoor furniture is dirty, the white chairs leaning against a red table, water drifting down their backs in slimy lines that pool at the bottom and speckle the chairs black. San Francisco summer.

It hasn’t been like this every day. Usually, the sun pops through, and turns the yard into a griddle, but I never wear sunscreen because I just feel like I have bigger things to concern myself with. So most days I sit  outside and sizzle my face a little more and try to meditate without concentrating on how shallow my breathing has become.

But on a wet and cloudy day, there are just windows for watchers, and that’s what I am. I can see seagulls flying over the ocean. I can see Otto pacing back and forth on the deck, head down sniffing at something through the wooden boards. When he sees me watching, he comes to beg at the door,  but there’s nothing I can do for him, and he wanders away.

The gloomy day either fits my gloomy mood or is the cause of it. It’s one of those days when Rob and Scarlett walked out the door and I felt like I had nothing left. Don’t feel sorry for me: first of all, I hate that, and second, I’m halfway through a cup of tea and I’m pretty sure there’s an attitude adjustment lying at the bottom of it. 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>