Good Listening

Scarlett’s school fundraiser was on Saturday night. It was a beautiful event, and a smashing success, thanks to the efforts of so many people. Two days before the party, I came down with a little cold, and by the time Rob and I arrived at the venue, I had almost no voice. So there I was, in a loud room of 400 people, without a great way to communicate. And it made me think about ALS. I was in a wheelchair, my hands weak enough that Rob had to cut my food for me at our table, and to top it off, I couldn’t talk. This is the reality for many people with ALS, all day, every day.

I thought about my friends who say that ALS is destroying their intimacy with their spouses, their ability to parent their children, their social lives. We can—and we do—make the best of it. But at its core, ALS is a disease that seeks to destroy our relationships with other people. It’s a cruel and isolating illness. That night at the party, I was ok. I knew my voice was coming back, and I could still summon up a whisper to get short thoughts across. As I said to a friend that night, I love talking (“Oh really?” she joked. “I hadn’t noticed!”), but taking a night off from it was illuminating.

It’s highly likely that I talk too much. And it was interesting to just listen, to hear what people say to a person who is pretty much just smiling and nodding. But it was also frustrating. I have comments. I have stories. I have jokes!! That night, I relied on a whisper that was still sometimes too low to be heard, which is why Rob almost lost a bunch of money during the live auction portion of the evening.

I looked over at him during the dinner/auction and saw him furiously waving his paddle as he entered a bidding war over a tea party. It was a really lovely auction item: high tea at the British Consulate in San Francisco, and it always brings in a nice amount of money for the school. It just didn’t seem quite like Rob. Everyone at our table was watching him and our other friend Sergio, who were taking turns bidding against other tables as the price for the tea party went skyrocketing up. The guys seemed frantic to win it, and it suddenly occurred to me that they had no idea what they were bidding on.

“Stop!” I hissed at Rob.

“What are you doing?” I whispered in vain.

The bidding continued. Finally, I managed to tug at his sleeve and indicate the very large screen at the front of the room that had an obvious headline, along with photos of crumpets. He lowered his paddle. It turned out that he and Sergio had entered a coalition to win a dinner party hosted by a local celebrity chef, and had then become so excited that they forgot how to read.

“Sarah,” Sergio deadpanned, once the tea party was safe with the lucky–and deliberate–winner. “Next time just speak up!”

This party was a unique experience for me. I can still talk, and when I woke up Sunday morning, my voice was froggy (sexy, maybe?) but I was able to read a book to my daughter. There are not words to describe the relief I feel that we can still share moments like that.

The realities of ALS can be wholly demoralizing. When it takes two hands to hold up a cotton ball, for example, you might think ALS is winning. But we beat ALS by connecting, in whatever way we can. By going to parties, by finding new ways to communicate with our friends, by listening to stories with our kids when we can’t read to them. Even just by smiling or laughing when people are being idiots.

The guys were outbid on the celebrity chef dinner, too. They retired to the cocktail area for Manhattans, while I whispered their story to a friend and asked her to pass it on.

 

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5 thoughts on “Good Listening

  1. Darren Alessi

    Sarah, you have to stop making me tear up at work! People are starting to point and whisper around the water cooler. : )

    Love you dude! xoxoxox

  2. Kathy Heidel

    Yes. I have Bulbar ALS which takes away my ability to speak coherently . People I don’t know just nod at me , smile and walk away – happened last night. Then I realize that what I thought was pretty clear really wasn’t. BUT… I can still walk, use my hands- even tho’ they are a little weak – hug my family and friends and use email to express myself. Have to continue being grateful.

  3. Adele bentitou

    Hello Sarah,
    So glad you had a great time at the auction evening and thank you for reminding us that it is important to continue doing the things we enjoy. ALS is a monster but we can put aside the beast at times and rejoice in the moments of pleasure. Take care and continue writing for us.

  4. Theresa Eckert

    Thank you for sharing this and I am glad you had a good time at the dinner. My husband had ALS and when he lost his voice I wondered what was he thinking and feeling because he could not tell me anymore.
    Makes me sad to think about that but I am glad you can still speak to your family and enjoy yourself.
    I love reading about you and your family and the fun you have together.

    Keep sharing,
    Prayers always,
    Theresa

  5. Linda

    You definitely don’t talk too much. We all love to hear what you have to say, and we always will.

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