Being the book lover that I am, over the past few months I found myself looking for autobiographies and biographies on people who have also had ALS. I started with Lou Gehrig and Steven Hawking as they were the two most famous people I knew of to have the disease. After those, I started to look for books written by or about someone whom I might have more in common with, women who were diagnosed with ALS in their 30s or 40s. Admittedly, there weren't many. I found four to start with.
Reading the books hasn't been particularly easy, the emotion of it all gets to me time and again. So far, I have only completed one of the books and I am currently reading two others with the fourth not yet begun. I am determined, however, to learn what I can from these women and their personal experiences.
While our lives do not share many similarities, from marital status to how many children we had to education and the careers we chose, I definitely feel a connection with these women. Sometimes it is a physical feeling they have described, other times an experience, an interaction, an emotion or expression that has been mine as much as it was theirs. Though ALS hit each of us differently, at different times in our lives and it took different paths in our bodies, we share a commonality that is undeniable; none of us saw ALS coming, yet we have all faced it the best we could.
If you are interested, here is a list of the books. I finished the first and found it very inspirational and interesting. I am currently reading the second and am almost through it, though I have had to set it aside a few times to pull myself together. I have only started the third and have read maybe 3 chapters so I can't offer much yet except to say the author started Project ALS. Finally, the fourth is on my Kindle and I haven't started reading it yet.
1. I Remember Running: The Year I Got Everything I Ever Wanted - and ALS by Darcy Wakefield
2. Until I Say Goodbye: My Year of Living With Joy by Susan Spencer-Wendel
3. Tales from the Bed: A Memoir by Jenifer Estess
4. The Butcher's Daughter: The Story of an Army Nurse With ALS by Sandra Lesher Stuban
One of the best ways I have found to spread ALS Awareness has been to share my own story. As a part of ALS Awareness Month, I honor these women for doing their part in sharing their stories and I hope you will consider looking for one or more these books at your local library or bookstore.