Photo by Jordan Ladikos on Unsplash
This week Thursday, I woke up, and the world appeared as if I was looking through a kaleidoscope. There were several items there should have been only one of that existed in multiples. Occular trouble is a common symptom of myasthenia gravis, and mine exists more commonly as double or blurred vision and an inability of my eyes to focus on items for sustained periods.
It’s as if someone decided to figure out the best way to frustrate a literacy specialist turned writer and then sat back to watch the show.
Last year at this time, when I had a day that my eyes weren’t working, I would typically give up on working that day and spend the day alternating between puttering around the house and laying on the couch listening to audiobooks.
About six months ago, I’d try to muddle through a day of writing using the dictation on my computer. It’s not perfect, but it’s easier to edit crap writing than no writing, so I figured it was better than a day spent puttering and laying.
Now, though, I’m able to pivot repeatedly throughout the morning until I figure out a way to get my goals for the day (or at least most of them) accomplished.
This past Thursday, though, I was set to start work on a presentation I’m giving on April 1 for a group of female entrepreneurs on the topic of staying flexible and adapting to roadblocks and changes. What sort of presentation would I be giving if I gave up when I woke up with vision challenges? That’d be like watching a presentation on teaching phonics from a high school science teacher.
So, I went through my list of ways to get around vision challenges. This isn’t an actual list (though I do have other physical challenges that require actual lists). It’s a mental checklist of things I can try before giving up.
This week, I made it to the end of my list before something worked. But, once I put an eye patch on my left eye, I realized that my left eye muscles were the problem and that my right eye was working just fine.
After an hour, I was able to take off the eye patch and work with both eyes. For the rest of the day, I had to alternate between work periods and rest with ice packs on my eyes. Sure, I didn’t get as much done as I would have if my vision were normal, but normal is never the goal. The goal is to do the best you can with what is in front of you at the moment.
So, when you need to adapt and stay flexible, remember:
-Develop a toolbox of strategies to address challenges.
-Think about what’s worked before.
-Keep trying new things until you find a solution.
-Rest when you need it.
-Celebrate the hell out of your resiliency.
New from me:
I’m finishing up a book about the lies women believe about themselves and will be pitching to publishers at the Atlanta Writer’s Conference in May. I also have a fiction story sitting at about 30K words. A few short fiction stories are due to be published in the next few weeks. I’ve been busy this week prepping some work for a new site I’m writing chronic illness-themed sexual health content for. Stay tuned for updates on this partnership.
Dance Eases Symptoms of Neuromuscular Disease: but affording alternative therapies is a barrier to most
For the first time in months, I was a complete person — a whole woman. -rather than someone with missing or defective parts. For an entire hour, my body responded the way I asked it to. My toes were still numb, but my legs moved in step with the instructor. My fingers tingled with the reminder of neuropathy but folded over my dance partner's hand without shaking.
A few deep inhales, and the tears slowed enough to drive home. Wondering how I could explain to my husband the gratitude of this moment, the magic of feeling like a person again, and the need to recreate this feeling every week.
Reading I’m in love with this week
I’m midway through Caste by Isabel Wilkerson that examines the reasons (historical, social, etc.) for the discontent among the systematically disenfranchised in American society. She draws parallels to India’s caste system and to Nazi Germany that cannot be ignored if we wish to move forward as a society in a way that holds all people as valuable and worthy.
I’m also loving When Breath Becomes Air, by Paul Kalanithi, a Pulitzer Prize finalist which came recommended by a dear friend. The book examines a life cut short and is a wonderful reminder of why we need to pivot, adapt and embrace every day.
I just finished Monogamy, a fiction novel by Sue Miller and loved the character-driven narrative that examines what we mean when we call any marriage a successful one.