One day, a big black blob that came in reverse tunnel vision appeared in my right eye. It was hard to focus on anything at all and I could only see whatever I wasn’t looking at directly. It subsided after half an hour which was just enough time for my left eye to put a Braille Basics book in my online shopping cart. These attacks became more regular, but less scary when I learned they mostly only last about 20 minutes.
For a time, things were consistent. Then the floaters came along, lots of them. After that, tremendous pain. Initially it was only nerve shocks and zaps behind my left eye. It left me scrunching up my face with visible popping veins that looked like anger. Instead, it was an awful pounding and vice grip combination. Sometime later, both eyes felt immense pressure like something was pushing against my eyes from the inside. After the necessary tests, all unremarkable, it was determined this was a new symptom likely caused by one of my new treatments. It made wearing the contacts I wore for over two decades unbearable.
I was grieving more over the fact my vision also was becoming blurry. Even with quarterly eye exams to confirm my prescription, extended reading became nearly impossible. Time creeped on and I found my imagination was out of practice. I was no longer making up back stories of what my cats’ lives were like before we adopted them. Everything was grey, uninteresting.
I have always been a rule follower. If there were no rules, I made rules up, even when they were not required. With the gift of hindsight, I see this was a coping skill I had developed. By self-enforcing a rule, a just gave my future self the gift of time. I freed myself from the burden of over analyzing whether I made the right decision in the moment. I simplified my life by building my own Rule Book for Life. Instead of spending 15 minutes debating the merits of organic VS farm stand every time I shop, I decided to make a rule to buy produce from farm stands. This allowed me to spend those 15 minutes worrying about that noise my car was making instead.
And so, I became a person who clung to patterns and predictability, seeking to control as many factors in my life as I possibly could. Including reading. It was my strongly held opinion audio books didn’t count as reading. My rules for reading only allowed for tangible books, preferably paperback.
Yes, paperback. My supporting evidence for preferring paperback over hardcover came from Spanish grammar lessons.
In Spanish, (the Spain Spanish version they teach in high school) there are two options to say the word “You”. When speaking formally to a person you might call Sir or Ma’am, you would say “Usted”. Usted is great, implies respect and professionalism.
If you’re chatting casually with a close friend, you would say “Tú”. “Tú” means we know each other. It is inclusionary, we’re on the same level.
I think hardcover books are like “usted” and paperbacks are like “tú”. It was easier to shove a paperback in my waist band to get to the comfiest branch in the climbing tree. The spines of my favorite books are worn from me thumbing the pages under my chin to make a breeze. How could an audio book compare with that diy fan?
I had cut myself away from all the happiness books could bring me, all because of a snobbish pre-conception that there was only one right way to do things. It’s just a hunch, but this mindset was likely not only keeping me from literary joy. I came to discover that there was something I loved even more than books. Stories. Stories live in all sorts of mediums. Stories are bigger than books, they are complete entities all on their own. It was because of my love for stories that I broke one of my own rules and downloaded my first forbidden audiobook.
Though my symptoms stayed, my day to day life began to look drastically different. I was shocked that, though book purist I may have been, I fell equally in love with the stories audio books brought. Author narrated audiobooks tend to be among my favorites. Hearing the words read exactly as the author intended, like a personal Book Reading that didn’t require pants. My beloved paperbacks can’t do that.
My life changed significantly as my illnesses progressed. Nearly all my old hobbies became impossible. I had to stop putting my life on hold until I was better. It was true, there were many things I’d never do again. Before allowing this to be the rule, however, I challenged myself to a thought experiment. Could the activity be modified? Had my online support groups come up with any solutions?
At first, I thought there was only one right answer, and it held me back.
Then, I thought there were many right answers, and was frustrated trying to find acceptable solutions to unsolvable problems.
Now, I think sometimes there are no answers. Sometimes a chapter really is over.
I’m working on being okay with that answer and focusing on the stories, not the books.
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