As rare as ALS is, most people seem to know that it is an incurable disease that leads to death. When word gets out that a person has ALS it seems that two things happen.
First, friends, co-workers, neighbors, and family members disappear. Not all of them, of course. A few make contact quickly after receiving the news.
Second, those that call or stop by often ask the basics. “How are you doing?” Or, “What can I do to help.”
What happened to the first group?
Eventually, many will make contact with “I don’t know what to say.”
If you’re in the first group then knowing what to say really can be simple.
- How are you doing?
- Is there anything I can do to help?
- How are you managing your symptoms?
- How long did it take for the diagnosis?
See? Easy. The basics. Conversation will flow easily after that.
No one wants to be a victim of a death dealing disease that is difficult to diagnose and which sucks up precious time that could be used to enjoy life before the enjoyment ends.
Most people I have met with ALS or other crippling diseases do not mind explaining some of the issues and processes involved. It’s difficult, but I can still speak. I can hear. The COVID virus has crippled much of how we interact with people but there is Zoom, FaceTime, Skype, and other methods.
It feels good to know that people care.
Show and tell.