I’m currently reading Need You for Always by Marina Adair and while I like the book there is one big issue that I’m having. If you follow the blog’s facebook page, you know what I’m talking about–the heroine’s mother died from ALS nearly 20 years after being diagnosed with the disease. Yes, that has happened, but it is extremely rare (according to alsa.org, only about 10% of people with ALS live 20 years post-diagnosis). As I mentioned on facebook, I get the feeling that when Ms. Adair was writing this book, she looked at all those Ice Bucket Challenge videos and decided that would be a good part of the heroine’s backstory. I find that despicable. ALS and other chronic disorders are not fodder for a book. They are real and effect real people. If you want to include them in your book, do your research and include them in a way that will educate your readers! It isn’t that hard.
The subtitle on this post is Sometimes It Is Personal and for me muscle disease is very personal. My mom was diagnosed with Myasthenia Gravis in 1995 and spent 4 months in a New York hospital and then another 3 weeks in a rehabilitation center, where she had to relearn how to do simple things that most people take for granted. She was one of the lucky ones. Until the advent of modern medicine, anyone with MG had only a 30% survival rate, hence the Gravis part of the name. She is on medication for the rest of her life, but so many others that came before her didn’t get that chance because MG shuts down the muscles that control your body. It is an autoimmune disease, which means that her immune system literally attacks her body if she does not take her medication. For the six months before her diagnosis, we watched her body shut down on itself to the point that she had to manually force her jaw to close in order to chew. When her doctor admitted her into the hospital on that June morning, he told my dad that he’d gotten her there just in time because if he’d waited much longer, she would have died. My mom would have died, so yes, I take this very seriously.
Today’s video is from the 2008 MDA Telethon. Jerry Lewis, the person who started the telethon, would always end it with the song You’ll Never Walk Alone from the musical Carousel. It is an absolute shame that the telethon is no longer on and it saddens me to think that people will soon forget about it and stop donating to the MDA. Please, enjoy the video and then go to MDA.org and make a donation. Believe me, it will go to good use.