While at a restaurant , my daughter and I were at the exit waiting for my husband to pay our bill. A man and his family entered the restaurant and saw us standing there. He immediately had a look of pity in his eyes and came over to me with an, “Awww…you poor thing…”, saying how sorry he was that I was in a wheelchair. He then went back to his family and continued to talk about that poor lady in the wheelchair! My daughter and I looked at each other and as the lyrics to Linda Ronstadt’s song, “Poor Poor Pitiful Me” (Poor Poor Pitiful Me ) floated through my head, we both burst out loud in laughter! And, while I am really sure he thought he was being nice, the fact remains that he literally described me as, “that poor lady”. Wheelchair or not, neither I nor my daughter think of me in that way, and it just struck us as absolutely hilarious! There was a time when maybe I would have tried to contain my laughter, worrying about hurting his feelings, but not anymore. Sorry, not sorry dude, you met the post ALS me!
I was diagnosed at 31 years old with ALS . Otherwise known as Lou Gehrig’s disease . Remember all those buckets of cold ice water everyone was dumping on their heads a few years ago? Yea, that was , at least in part, for me. It unfortunately has not yet led to our miracle cure, but that’s okay. I have found out that I can be just as happy living without muscles as I can with them! Okay, maybe not “just” as happy , but pretty darn close. In case you didn’t know, that’s what ALS basically means…your muscles slowly, or quickly, quit working. It truly sucks.
I was diagnosed back in 1998 , so I have been doing this awhile. People who are newly diagnosed always ask us old timers what our secret is to surviving past the general 2-5 years prediction so many doctors hand out. So I thought I would use this blog to help in anyway I could to share what I have figured out over the years . Or, at the very least, give you a laugh and a few minutes to forget about your problems.
I was not an English major. Ignore my grammar mistakes and typos..I am typing this with a switch and my eyes! I also went to school way back when our school first got computers, so I am self taught and don’t know much about setting up websites, so this is a work in progress. Hope you enjoy!