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>

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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>

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August Approaches

When I launched the #whatwouldyougive campaign in June, I thought I would be lucky to get 30 team members. As of today we have 71, and some of those are fundraising groups that include more than one person. We have so much support. The challenges are starting August 1. People are giving up their voices, their hands, their arms. At least four people are going to use wheelchairs for a day—the extreme challenge.

The team is getting geared up. Members are posting about their challenges, in a continued effort to raise awareness. My friend Rob Becker even started a website to share his experience, and his observations about preparing to take public transportation with a wheelchair are worth reading.

I’m so excited and motivated by our amazing team. We have raised over $71,000, with an incredible 731 donors and counting. I need to stop and appreciate those numbers for a moment. More than SEVEN HUNDRED people have given to the cause. There are people on this team who I’ve never even met. And we still have a month of fundraising to go. Read More>

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