Before my illness (B.I.), I often moaned and groaned about how little time I had to read. I always wanted to get a T-shirt that had the Frank Zappa quote, “So many books, so little time,” on it. If only I could have all that time for myself, I thought, I would spend it reading.
After finally getting a correct diagnosis, heading to rehab, and realizing that now I had the time, but not the memory, to follow a lengthy story, it felt like I was losing one of my favorite pastimes.
So I turned to books that had short chapters and discovered “Until I Say Goodbye: My Year of Living With Joy,” by Susan Spencer-Wendel. Here was a woman, dying of ALS, who lived every day she had left by creating memories with her loved ones, typing a memoir on her cell phone, as she lost control of her body, limb by limb.
And I thought I had problems???
After becoming a survivor of PML, a feat that is nothing short of miraculous, NIH researchers tell me, my attitude of gratitude became a daily ritual.
So I kept on keeping on, and little by little, over the next 30 months, I learned some strategies to regain my favorite pastime. I now highlight each character’s name in my e-reader, so if I forget who they are, I can go back to the previous mentions and refresh my memory. Thank God for technology! I’ve also become a fan of audiobooks.
So during Brain Injury Awareness Month, I am grateful for my survival, and continue to pursue any professional treatment or therapy that will help me get as close to my B.I. self as I can.
I’ll never be the same, but this experience has made me so much more aware of what a gift each day is.
When I was first misdiagnosed as a stroke survivor, I did what every avid reader does: I looked for books on the subject.
So often we brain injury survivors focus on what we can no longer do, rather than on what we can do.
If you are able to read this blog, thank your brain. You may not be able to [fill in the blank] yet, but you can still read (or listen to it being read to you) and understand this post.
Click here to find some more books that I’ve found helpful.