Going public with having ALS is made more difficult when you can't even say your own name (real or assumed), which leads to this funny story…
Yesterday I went to have flyers printed. The first employee who helped me assumed that I was deaf. She didn't know sign language so she did a lot of pointing while talking, which is pretty common. I tried explaining to her that I have ALS and am not deaf, hence the flyer. Apparently, however, as soon as she "realized" I was deaf, she no longer listened to me.
While waiting for my order to show up in their computer, Employee One went to help someone else. Before moving on, she told Employee Two what I needed and then, turning sideways, explained that I was deaf. As soon as Employee One walked away, I tried to explain to Employee Two that I am not deaf, I can hear just fine, but that I have ALS which affects how I talk. While saying this, I was holding up the flyer and pointing to the "Walk to Defeat ALS" logo to try their method of communication on them - pointing while talking. Unfortunately, she acted exactly like the first employee, and my words fell on deaf ears once again. I had to laugh a little at this point.
After paying for my order, with lots of pointing at the register on their part, I asked if the store manager was in. The employee pointed to him, standing 6-feet away, but made no effort to get his attention for me, which I found a little funny after the "deaf" treatment.
With a smile on my face, I walked over to him, introduced myself, showed him a flyer, and gave him my spiel about the walk. Having the recent experience with his employees in mind, I tried to be very clear that I was working to raise awareness in the community so people would understand that I have ALS and am not deaf. He listened to me, nodded politely, raised a finger to me and turned to his computer. A minute or so later, he asked another employee, a young man, to tell me that he was looking to see if The ALS Association was set up with their company to receive donations. The young man looked confused, but turned to me and said "He wants me to tell you…". The manager stopped him and said "No, she's deaf". The young man then understood and started to sign. I interrupted him by signing "I am not deaf, I can hear but I have ALS and cannot talk well". At this point, with the young man interpreting, it all became clear to both of them.
The irony is that the only person who could understand that I am not deaf was the one person who could understand the language of the deaf.
I am happy to live in an area where there is a large deaf population and I love that businesses make such a positive effort to communicate with the deaf members of our community. However, now that I am trying to make this huge effort to explain to people that I have ALS and that I am not deaf, I find it ironic that some just won't listen.
I need to say here how much I appreciate that the manager was paying attention to me and the flyer even though he couldn't understand my words. He took my request seriously and did not, in any way, blow me off for lack of understanding. After looking for, but not finding, the organization in their system, he wrote out the phone number AND web address (knowing I wouldn't be able to call) and explained the process for getting on their donations list. He was a class act and I respect how he treated me. He didn't understand me, but he clearly made every effort to communicate with me and he made me feel "listened" to. Well done, Sir.
This is just one small taste of the twysted ride of living with ALS.