Writing a book after I had my stroke seemed like such a large task for someone who had to learn to write (or type?) again. It took a year--to the day--before I started typing it. I was proud that day, but also I little discouraged. It took so long to type a few paragraphs because I had to take out the mistakes time . . . after time . . . after time. My right hand seemed to have a mind of its own.
I was also missing the words. Aphasia is a communication disorder. Although it was is often used to describe your speech, it also impacts some people's ability to write. The online thesaurus was my friend, but only to a point. The start of the word had to be close enough to link it to the word. I sat at the computer and stared at the monitor for a long time as I tried to figure out how to spell it close enough so that the thesaurus would work.
Emotions
Emotion was also missing. I continued to write for a couple of months, but I eventually put it away because it didn't accurately describe what had happened. I felt emotions, but I couldn't write about them.
Six months later I picked up the manuscript and tried working on it again. The emotions were better, but I still didn't feel they were a little flat. So I put my book down again.
Three-and-a-half years after my stroke, things clicked in my head. I could finally tell what I was actually felt in the manuscript. Now I had a choice to make. Did I really want my book to be so raw? Yes. I did. But was I courageous enough to share the real me? Yes, but there is some trepidation.
Why Did I Do It, Then?
So, why did I really write Stroke Forward: How to Become Your Own Healthcare Advocate . . . One Step at a Time?
I looked for books after I was released from the rehab hospital. I didn't find many. It is possible that I couldn't spell well enough to find the books that were available. The caregiver aspect seemed not to exist. I decided to tell my story and include excerpts from the people around me. Their lives changed the day I had my stroke. From my mind, the caregiver is as important as the stroke survivor.
The other thing that I think is special about my book is that it gives people the basics of being your own healthcare advocate. My husband and I did not know what we were doing in the beginning. We had to learn day by day. I hope that readers will learn from our experiences. Hopefully you will have a leg up when you're in crisis mode.
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