My giving up my voice for a day is just a fraction of what a person who has ALS has to deal with on a day-to-day basis. I didn’t really know what to expect when I decided to go to work and not talk. Turns out I learned a lot about myself and how to try to be productive in silence.
Here are 8 things I learned about myself:
I’m not as introverted as I thought. When I first thought about giving up my voice as a self-described introvert, I thought “this is going to be easy.” I can not talk to people all day. I was dead wrong.
Beyond just saying, “Hello…how are you?” (Have you been alright?), I found I really did want to talk to people, ask questions, respond to questions, state an opinion. You know, be a human being. It was fairly painful and brutal not being able to engage with people.
- It’s easy to get "picked on." My wife’s first words out of her mouth this morning were, “I like this vow of silence.” A co-worker said, “You’re not going to talk all day? I hope you’re logging this as PTO.” And by the time you’ve texted or handwritten your “comeback” line, it’s way too late for wit.
I can type at 33 words per minute. In my weekly one-to-one with one of my direct reports, Fiona, I projected my "voice" (text) in Evernote in 72 font on an LCD monitor and managed to conduct an hour long "conversation" which included my typing 2,002 words!
Hats off to Fiona who hung in there while I tried to type as expeditiously as I could to keep the conversation going. I "word clouded" our conversation and it turns out the top ten words I used in our conversation were “can, might, need, Trailhead, will, team, good, know," and "great.” Is it me, or is there something positive in there? Sort of like, “It’s good/great to know the team can/might/will need Trailhead!"
- My handwriting is awful. But I knew that already. And now others at work do too.
- You can still participate in video conferencing. We use Google Hangouts at work and all I had to do was type in to the chat box and everyone could read what I was "saying." You can turn on your video camera and people can see you typing, you can point to the chat window, you can nod your head in agreement, and you can hold up signs that read “#whatwouldyougive to end ALS” (I wish I had thought of that!)
Big thanks to everyone on the video chat this morning for their patience and support!
- You will screw up! I was walking through the hallways in the morning and I saw a colleague for the first time in six months. I was so surprised and happy to see her that I yelled out, “Hey there!”
She started talking to me, so I handed her one of my #whatwouldyougive “I’m not talking today” cards. She immediately proceeded to tell me, “You kinda screwed up.” Yes, I did. She didn’t say anything more. Neither did I.
Until about 2:20pm that is, when I realized I might be late for a meeting in another building. I turned to Fiona and said, “I didn’t realize our meeting was at 2:30. We better get going!” She looked at me like, “What the #@&! are you doing?” Oops, I did it again! Excitement and stress apparently incite talking.
- Your kids will find it amusing. My older daughter was fascinated by this challenge. When I explained it to her the day before, she asked “You’re going to do it for the whole day?” “Yes,” I said. “Well, you can wake up at midnight and start talking if you want.” Great idea!
While I could write down or type up things to communicate with my older daughter, my younger daughter, who can't read yet, was a whole other story. That’s when I decided to (a) use the “speak” function on my iPhone, and (b) bluetooth connect to my Bose wireless speaker. Hearing Siri say, “Lila joon, you are so cute!” absolutely made her day! Of course, they then made me type a whole bunch of other things they wanted to hear which I can’t type up here ;-)
- It’s exhausting and awkward. You might think typing or writing everything you want to say is what’s exhausting. It’s not. It’s the “paralysis” of not being able to respond, make your voice heard, and the lack of spontaneity. I found it emotionally exhausting.
The awkwardness of having to ride elevators and walk to other buildings with a colleague and not be able to engage in conversation. Having to hand out these cards to explain why I was being “rude” and not communicating. I was really surprised at just hard and tiring it was.
So what does this all have to do with generating awareness for ALS? What, if anything, did I learn about what this might be like for people with ALS? Tune in tomorrow for those reflections.