Thursday, January 17, 2008


This is a quote from an email sent to me by a friend who is caregiver to her husband who has suffered multiple strokes:

“A stupid thing that someone said to me recently - "I had a really fun party but didn't invite you because I didn't think you would want to upset your schedule." This person has a ramp going into her house (was used by her deceased husband).”

This goes in my “stupid things people say when they don’t know what to say” file.

Something nice happened last Saturday. My friend Michelle stopped by on the way to have lunch with her uncle and dinner with some friends. She only had about an hour to spare but stayed a little longer. Finally she said she had to leave because she would be late for her lunch appointment. But then she said something nice. She said that she really wished she could have stayed longer, because we were having a nice discussion about why it is so hard to make friends nowadays, how rude cellphones have made people, and how the way a person interacts with us can indicate the other person’s hidden agenda and shortcomings. So, even with my Mercury augmentative communication device, we had a thought-provoking discussion. And, I was amazed at Michelle’s patience with me and the Mercury!! It was so nice to hear someone speak positively about spending time with me, and not looking uncomfortable at all.

Speaking of which, at my support group meeting Tuesday night I told Jody that if I feel a coughing fit coming on, I am going to leave the room. What people don’t understand is that the coughing is the way my body gets rid of secretions, since it doesn’t “come up” normally, due to the ALS. These coughing episodes always end in a productive elimination of mucus, but it takes a lot of coughing to get to that point. I am not dying or choking to death. When I am home, I use my Emerson Cough Assist to do this. That machine has become my best friend. But when I am out of the house for any length of time, the accumulated mucus causes my body to spasm into coughing until it all comes up. The irony is that when I am no longer able to cough, I am in trouble. So if I can, I will leave the room, stay away from the machine for shorter periods when possible, and understand that certain people just can’t take it, and not be hurt when they don’t come around. I can’t help this any more than I can help being in a wheelchair. If this “freaks” people out, it is their right not to be around it. It doesn’t make me, or them, bad people.

On Sunday, Judy Lewis took me to lunch at Appleby’s. Since they always sponsor the ALS Walk to D’Feet, I am trying to patronize my local Appleby’s on Queens Blvd as much as possible, and I would like to encourage everybody to do the same at their local Appleby’s.

On the other hand, I am distressed to find out that Barack Obama did not sign onto the ALS Registry Bill. Our people at ALS National are trying to contact him to find out why. Jody tried to call his office, but they wouldn’t speak to her because she is not Obama’s constituent. However, this does become an issue outside of Illinois when the man runs for President of the US. I am urging all of you to see how these people voted on the issues that are dear to you, whether it be ALS, breast cancer, animal rights, gun control, health care, or whatever. Actions speak louder than words. Look at what they have done. Hillary, by the way, supported the registry, albeit a little late in the process.

No comments: