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. For me, after many years to process this reality, it’s not so much the fact of being disabled in one way, but the idea that this disease is relentless. That it will take your legs, your arms, your voice, and just keep coming back for more.

I’ve said to myself so many times over the past three years that if the disease just stops here, I can handle it. The wheelchair that I never wanted: it makes my life livable. The breathing machine that terrified me: it keeps me comfortable. I’ll adapt, and I’ll even do it with a smile on my face, if only this doesn’t go any further. But that’s not how ALS works.

And, of course, the initial losses are more difficult than one could imagine. We’re so used to living with abilities, to tying those abilities directly to our responsibilities: as parents, as employees, as humans. How, we think, could someone get through life without the strength that many of us take for granted? It’s scary, and frustrating. It makes us feel less than whole.

In my own life with ALS, every day is different. I woke up yesterday, and I cried for a long time. I couldn’t shake off a dream I’d had that I was normal, that I was holding a baby. But that sadness didn’t carry into today. I’m sure I could access it if I wanted to, but I don’t.

This morning, Scarlett woke me up at 6:20am by kissing me right on my mask. Then she snuggled between me and Rob, with her limbs flailing around, and we tried unsuccessfully to shush her so that Otto would stay asleep. She took him outside and they both somehow got covered in poop. For Rob, cleaning them up, preparing Scarlett’s lunch, getting ready for a business trip, it was a bit of a stressful morning. But for some reason, maybe that kiss she gave me, I felt like I could manage today. I did not feel like crying.

Rob maybe felt like crying. I mean, people and animals were covered in poop. I just watched this, not missing my abilities in that particular moment.

But back to the people who spent—and who will spend—a day this week being disabled in some way. “Powerless” and “humbled” are two good words to describe their experiences so far. I’ll be curious to hear how the campaign goes for those who still have their challenges to look forward to. Maybe some people will feel empowered, as their efforts raise awareness, as they see firsthand the good they’re doing. And then, I hope, the whole team will enjoy having their abilities back, and will dance in the streets, sing in their showers, or just stand up and hold onto someone they love. Because they can.

 

 

 

 

 

 

 

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One thought on “How Goes the Giving

  1. Donna

    Thank you for your blogs Susan. I feel like I’m sitting with my best ALS kindred friend and sharing fears, anger, frustration and hope. Love you

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