Don’t Talk-A-Thon: Part 3

“You do not need to leave your room. Remain sitting at your table and listen. Do not even listen, simply wait, be quiet still and solitary. The world will freely offer itself to you to be unmasked, it has no choice, it will roll in ecstasy at your feet” – Franz Kafka.

Those of you who participated in the Don’t Talk-A-Thon are sharing such a wide variety of stories with me. I must thank you again for being both involved and open about your experience. Like any well-designed activity that includes thoughtful people, the results were not entirely what we expected. I heard two main opinions of the hour of silence.

First, the most predictable and popular opinion: silence is uncomfortable! I know this is what I expected to hear, and I imagine the event organizers did as well. Being silent in a checkout line when a clerk is asking questions and you are fumbling for your credit card is awkward to say the least; you can practically hear people behind you wondering what is wrong with you. Or when you see your dog eating garbage and you are too weak to stop him and unable to call to your husband in the next room… that’s enough to make a person panic. Believe me. I’ve been there. Forced, unbreakable silence makes you dependent faster than you can imagine. Your position shifts to observer rather than actor in your own life, especially in a culture that values talking incessantly, quickly, and loudly. In conclusion, silence sucks.

This brings me to the second opinion of the hour of silence, the one that caught me off guard: there is peace in silence; why don’t we embrace it more often?

I know I said that I no longer find peace in silence, largely because choosing when to be silent is a luxury I hate losing. It makes every silence a tiny prison. Still, when a friend wrote the following, her words resonated with me the more I thought about them:

I’m silent a lot of time, between reading, writing and gardening. I wish we lived in a culture that didn’t value talking, incessant talking, so much. It’d be easier to hear what matters.

My first, sleep-deprived, frantic thought was, “This is not about gardening! It’s about my life!” I wrote back to her in what she would probably generously call a snappy tone.

And that’s the thing that got me thinking in those guilty minutes after clicking send… My friend is generous, and wise, and infinitely kind. Her ideas have always been worth hearing, her words respectful, so what was I missing?

I read her note once more and remembered her passion for gardening. Whether she is working alone or with family, it is clear she is most in her element when quietly nurturing precious little things. She’s got wit and sass – plenty of it – but she knows the value of balance. She understands what Franz Kafka meant when he said the world will unfold for those who wait for it quietly. However joyful a chatty dinner with friends can be, revelation and wonder don’t live there. They live in sitting side by side watching a sunset together, letting yourself feel deeply in another’s presence.

This is such an important reminder for both pALS and their loved ones. Those of us with ALS who are losing our speech will continue learning new ways to “talk” and asking for better technologies to give us our voices, but healthy people will always talk faster and louder than we can manage. We will still be in an endless race to keep up. So maybe, every once in a while, give us a rest. Take us to your garden. Put our stiff, curled hands in soil, and for once, let our breaking bodies be a part of creation. Join us every now and then in the silence until we forget to think of it as a cage. After all, the greatest, freest things are silent…

“See how nature – trees, flowers, grass- grows in silence; see the stars, the moon and the sun, how they move in silence… We need silence to be able to touch souls.” – Mother Theresa

Don’t Talk-A-Thon: Part 2

Hello all! I’m already impressed, touched, and overwhelmed by your stories of how your hour of silence went today. I would LOVE to share your stories of silence; it would be amazingly powerful to have them all in one place. Please consider sharing your experience below. If you are not able to spend an hour in silence today, go ahead and share what you would miss or fear if you were stuck in silence. Your empathy can move mountains and inspire ALS awareness!

I didn’t speak for an hour and it wasn’t all that easy‚Ķ My mom and I were sitting at the kitchen table having coffee reading the paper and being silent. Every once in a while a word would almost come out and I would catch myself. I was mindful of the fact that this Made communication so difficult especially with someone else in the room. A lot of other emotions such as frustration and anxiety. Rachel is so brave and I grieve for her and for Evan every day but at the same time I remain hopeful that one day there will be a breakthrough, the one we all are waiting for.” – Renee (my mom!)

I had planned on taking the vow of silence, but my husband’s feed tube had an issue, and I needed to speak to our hospice team. But that then brings up they thought of, what if he needed to communicate the issues to the team? How frustrating and difficult it would be. So even without taking the vow, I know the horror he would have to go through. ALS may cripple one person’s voice, but thankfully, there is usually a village to roar for them!” – Glynis, author of Life After ALS: A Caregiver’s Journey

“I participated today. I occupied myself with reading a new book next to Harley on the bed, and to be honest it was hard. For one, I drifted off for 5-10 minutes, and it was hard not to talk to Harley, as I normally would, as I petted him with one hand and held my book in the other. At first, I was frustrated by my forgetfulness, but then I reassured myself the whole point was to think about what it would be like if I couldn’t verbally express myself. I was ‘trying on’ silence and checking myself in the mirror, so to speak. I did share my mission with a friend this morning at church, and it moved her. So I don’t win any awards today for successfully keeping silent, but my intention was pure.” – Mitzi

I wasn’t able to do the hour of silence today but if I did it would be so difficult to not be able to tell my family I loved them.” -Sarah





Don’t Talk-A-Thon: Part 1

Today is the Don’t Talk-A-Thon, a fundraising event in which participants vow an hour of silence in support of those who are forever silenced by ALS. In honor of this special event, I am sharing a very personal and painful story about the first time that ALS stole my voice. Remember, for me and countless others with ALS, our voices disappear permanently as a result of this awful disease.

The Sound and the Fury

Before ALS, I associated silence with prayer, reading, sleeping, being comfortable with friends. It was full of promise. Now, I know silence can be sheer terror. It falls like a knife from your hands to the kitchen floor, clattering around your bare feet. It paralyzes you with its chaotic power.

I knew it was coming. My voice is fading to nothing; that was established months ago. I hadn’t really imagined what it would feel like, though. I may have had a vague notion that permanent laryngitis awaited me, but I understand now that it’s so much more than that. I learned the truth when I spilled a glass of water by my computer (weak fingers). I couldn’t lift the computer out of the way (weak wrists). I imagined songs, stories, and photos being leeched out of the laptop into the puddle. Panicked, I called to my sister to come help me.

No sound came out. My tongue was heavy in my mouth. I felt like I had been slapped in the face, my breath stolen from my lungs. On the third try, I finally understood. This was my disease, a preview of what’s ahead. My horror rendered me motionless. My sister was in her room talking on the phone, but she might as well have been on another planet. I hit the alarm on my wheelchair, but Laura couldn’t hear me through her door. Malka raced to me, recognizing I needed help, but she couldn’t understand what was happening, and what could she have done anyway? I wanted to scream.

I broke into tears while Malka ran in frantic circles, panting hard in her desperation. A hot, fuzzy tingling sensation climbed the back of my neck, and all I knew was that I needed Evan. Despite my clumsy fingers, I managed to text him that I needed help. He was at work a few blocks away. He flew to me, his footsteps pounding down our hall faster than should have been possible. He crashed through the door and was by my side before I could blink away my tears, as if by moving quickly enough and wanting it badly enough, he could save me.

Evan held me and I sobbed for a while, calming down once I realized I was making a lot of noise with my crying. That was reassuring, but when I tried to speak, my enunciation was too messy to understand. My words sounded like a sad foreign language.

I resigned myself to the fact that I wouldn’t be speaking intelligibly until I recharged. A storm rolled in from the mountains, filling our valley with night dark clouds so it seemed far later than four in the afternoon. The lights in the living room became far too yellow and dim. My bird screamed then, and fluttered around his cage. I checked his food and water; there were plenty of both. His favorite nap area was clean. Laying back down, I felt awful that I couldn’t figure out what he needed. He chirped and squeaked, but it meant nothing to me.

I drifted off watching him flap around, never figuring out what he was trying to say. I remember thinking, though, just as I lost consciousness, that I had only narrowly escaped my own cage. My stomach rolled and I got dizzy imagining the door still open, waiting for me.