Shari stopped talking for an entire day as part of Sarah Coglianese’s #WhatWouldYouGive to end ALS campaign. Read more about the campaign and contribute here.
I decided to take the ALS challenge to go without speaking for a day. I have had several surgeries in last year for knee and shoulder injuries, so I had experienced how tough it is to have limited mobility. I wanted to see what ALS patients have to do in order to communicate, and the frustration associated with it. Since I live alone and am out of work on sick leave due to a knee replacement, I felt it wouldn’t be all that bad. Boy was I wrong.
It started with my morning trip to coffee shop. I had to hand them my cup & point while receiving odd stares from barista. She asked how I was since I’m a daily customer who usually engages in conversation. I just shook my head & smiled. She told me the next day when I explained that she thought I was just having a really bad morning.
Also ran into 3 people I knew, and tried to just smile & wave to avoid having to speak. One of them called me later & left a message asking if I was okay.
I went home to try to take care of some volunteer responsibilities. Our running club is organizing a half marathon, and I’ve been talking with vendors and sponsors daily. I found it frustrating that I couldn’t call or answer my phone when they called. One I had been trying to reach for weeks, but I couldn’t call her back.
Since I was unable to get any of my sponsorship duties done, I tried running errands. I learned how inconvenient it is at the post office, drug store, library, gym, and Harris Teeter when you can’t use your voice to say what you need, ask where an item is, speak to a friend, or pick up a prescription.
I couldn’t decide which was worse: not being able to talk or the stares I received from store personnel, friends, and other customers. I am sure that a person with ALS has to deal with this daily, even before their ability to speak is taken from them.
My youngest son who is 18 lives in Texas and calls me every few days. Bring unable to hear his voice even though we communicated by text was upsetting to me. I hadn’t realized how much that meant to me.
Overall, this day made me appreciate the ability to speak and have even more understanding & empathy for those with ALS. While mobility is an issue we think about most, verbal communication is also very important. Just not being able to tell the barista “thank you” bothered me. I cannot imagine how hard it is to lose the ability to speak permanently.
I went to see the Gleason movie the next day, and watched how he learned to communicate using technology. The technology was amazing but also sad as he documented how he knew he was not going to be able to speak much longer. My final take is that everyone should try this to realize how tough it is, and that we need to do all we can to raise $$ for treatment, supplies, and hopefully a cure.