Today is my last day of silence. I am definitely looking forward to talking tomorrow. This week has been difficult. Not difficult with physically not talking, but just the strained social interaction with others. Even with all the love & support coming in from you all, I still felt disconnected and alone.
Since ALS limits patients physically, they often feel isolated enough. I will now begin praying that each patient who has lost their ability to speak has access to some form of speech generating device that allows them to communicate.
I also observed how others treated me when I could not talk. At times, some were impatient and didn’t want to figure out what I was saying. Others were sweet and attentive. A young lady at Dilllard’s last night was helping me find something. I had typed her a note in my phone and showed her what I needed. She was so kind, but I thought it was so funny how she whispered to me the whole time as she gingerly walked me around the store. I had to resist laughing out loud.
I know how uncomfortable it is to approach someone who is different, especially someone who can’t talk. Just because someone can’t talk to you, doesn’t mean they don’t require connection with people. We all need other people in our lives. Whether it’s ALS or something else they have, approach them. Even if it’s eye contact and a smile. I found that I used a smile and a thumbs up more than anything this week. Trying to provide confirmation that I could still hear and understand what was being said.
When I set out to do my “Shut Up & Cure ALS” week, I wanted to do it in memory of so many of my friends who have died from ALS. In addition, I wanted to honor others who are living with ALS today. To wrap up my 7 days of silence, allow me to introduce to you 7 additional faces of ALS. If you live in the Cincinnati area, they are your neighbors. I asked them why it’s important to them that you advocate with us. Here’s what they said.