Almost a year ago, when I was midway through writing my first novel, my sister began experiencing symptoms which lead me to this board. The first person to answer my very frightened initial post was JoelC; his picture immediately conveyed a sense of dignity and strength that reminded me of my father, who passed away several years ago. My subsequent interactions with Joel more than confirmed my initial impression, and as I interacted with more people and learned about ALS, I was profoundly moved by the courage, support, laughter, and love shown by the people on this board.
My novel was written in part to help me deal with the sense of loss and confusion I felt after losing my father; it explores subjects like death and the afterlife, immortality, and what defines the meaning of our existence here on earth. After getting to know Joel and a few others here a little bit more, I realized that a critical part of my book’s plot and theme development would benefit by writing in a character with ALS. That character is named Joel, and is entirely based upon his words and perspectives, which I learned through this board and his web site.
I exchanged several emails with Joel in order to make sure that he did not mind my doing this, and he was actually quite pleased with the idea and very supportive of giving ALS a voice in this way. I hoped and believed that Joel would be here to see the book make it to publication, but his path led elsewhere; however, he did read and enjoy the main passages that featured his character. I decided to post this here in order to let everyone who knew and loved Joel so much to know that his words, his wisdom, and his spirit live on in the pages of my book, as they do on this board and in the many lives he touched. In addition, although ALS was ruled out in my sister’s case, I also wanted to say that even though many people like myself may come to this site looking for information for symptoms that do not turn out to be ALS, many also come away with an important new understanding of this disease: the need to educate people about ALS; the full and meaningful lives of the people impacted by it; and the continuing fight for improvements in treatment and care, and someday, a cure.
If anyone is interested in the book, please feel free to send me a message for more information, as I sincerely don't want this post to be promotional. Although I don’t post much here anymore, I do still drop by from time to time in order to stay current about ALS, and most of all, to remember the kind of joy and love and support that, as Joel himself said, help ensure that “Life continues to be good and worth living.”