This week, I met a lovely woman who suffered a stroke a year ago. She and I commiserated over short term memory issues and word finding difficulties. She told me how, after her recovery was established, she and her family would laugh when she misspoke. She said they were patient when she recounted the same grocery store incident three times, or asked a question about dinner plans multiple times within an hour. They reminded her to try the list-making app on her phone, to write all of the day’s necessary errands on the kitchen calendar, to eat more fish, and to complete crossword puzzles to strengthen her brainpower. As the months wore on, their patience with her condition had lessened.
“I can see their frustration, and they smile and try to make light of it all,” she confided, “but the truth is that I’m driving them crazy. And I’m driving myself crazy, too.”
I concurred. “If my husband gets that glazed-over look in his eyes when I’m telling him something, I know I should have that deja vu feeling, but I don’t. It’s embarrassing to remind myself all day long to tell him about something, only to discover not only does he already know it, but that I’m the one who originally told it to him.”
She nodded her head in agreement. Here we were, rinkside as children ice skated in circles on a day off from school, bonding through a chance conversation about how our brains were failing us.
As I was preparing this week’s blog post, that conversation nagged at me. I searched the internet for information on chemo brain and hormonal therapy brain. I mulled over my love for language and linguistics, and how much it hurts me to my core to have mild boughts of aphasia. Although my word-finding and communication difficulties are directly related to my fatigue level, I find it frustrating to be in the midst of giving directions to one of the kids during a hectic part of our day and to not be able to communicate clearly. It embarrasses me for needing to look at Baby #1 or Baby #2 pleadingly so they can clarify my intent. Writing used to be a flowly, whirlwind of activity. Now it’s like giving birth to a 9 pound baby without an epidural (I have experience with this, too.)
This is worth a blog post, I thought to myself. Young survivors and previvors are in the same boat because of early-onset menopause and hormone therapy. Women experiencing menopause and those beyond it can also relate because of the effects of hormone fluctuations on the brain.
I dug out my very first journal, a collection of poems, stories, and drawings that I put together when I was in second grade. When my mom would complain that I was spending too much time inside, I would take that notebook and my favorite red pen under a tree in my grandparents’ backyard and write. There is even a section in the back of diagrammed sentences, a testimony to my fascination with language and its parts of speech at an early age.
As I grew and matured, so did my notebooks. Some of them were three subject, big and bulky. One section would be designated for poetry, another for journaling, and the last for stories and plays. Playwriting encompassed a large portion of my writing when I was young. I went so far as to write a musical when I was in high school. I never shared it with anyone, but it was therapeutic for me. At the time, one of my closest friends committed suicide, and I struggled with complex emotions during the aftermath. I didn’t know what else to do with them, so I tried to put them into words and music.
In college, I was more aware of my weaknesses as a writer than my strengths. When deciding on a major, I ruled out English immediately. I told myself I wasn’t talented enough to waste time and effort on writing. I chose to major in Communication Disorders and Psychology, the pull of language study too strong to ignore. This is a practical career path. You will have job security and will be doing something worthwhile for others, helping them with language delays and regaining communicative abilities after trauma. Writing will get you nowhere.
After Baby #1 was born, I took a non-credit creative writing course at the local community college. The goal was to let others read my writing and to face my greatest fear: allowing them to critique it. Some of us in the class formed a writing group, and I learned the value of feedback. Because of that group’s support over the years, I wrote the first draft of a novel, and tapped back into what I loved about language in the first place.
The past two years find me back to my beginnings, so to speak. I get up at 4 am to communicate my experiences and thoughts with the world through writing these blog posts. I find that, in the evenings, I am less articulate because I am fatigued. I notice this most when I attend meetings or social gatherings from 7 pm on: I simply can’t communicate as well. I no longer answer emails past 8:00 for clarity’s sake, and I go nowhere without my trusty daily planner. I have an app on my phone that is perfect for note taking, and I use the Pepperplate App and website to plan out our weekly meals and to keep my shopping lists current. I’m more likely to correspond through email or texting because it helps me to have the record of the conversation to refer back to, and I take notes at doctor’s appointments and school board meetings like my life depends on it. But through the writing–through the language–I find the way back to me.
I told my new friend at the rink about the strategies I use, and we giggled as we recounted our missteps to one another.
Her laughter stopped abruptly, and she looked directly into my eyes. “Do you think it will get better? Do you think the brain can ever fully recover?”
I measured my words carefully. “You and I, we’ve both been through some pretty terrible stuff. Even though I’m grateful to be alive, I’d like nothing more than to move past these challenges, and to be able to say the worst is behind me now. But I don’t know that for sure, and that really isn’t what life is. It’s an accumulation of every experience we’ve had. If the bad things didn’t stay with us, we wouldn’t be us. This is who I am now. As frustrating and as challenging as it is, we all need something to buck against, right?”
She thought about that, and turned her attention back to the kids on the ice. Her granddaughter and my daughter were skating together with a large group of girls. They were laughing, and holding on to one another and the wall while they slipped and slid along the cold, hard surface. One of them would fall down, and the others in the group would immediately help her up. Some of the girls were stronger on their skates than others, but all of them stuck together anyway and even the stronger skaters wobbled a bit.
“I’m glad I met you today,” she said to me with a smile.
“I hope I remember meeting you today,” I replied with a laugh.
Here I am, at 4:00 in the morning, writing this post and thinking about how facing these mental and physical challenges has brought me back to writing and has given me new obstacles to overcome. As I finish this post, I tag some topics for the search menu on my site and I label the categories of posts that it belongs to. Then I remember: I wrote a post about my memory issues recently: The Day I Couldn’t Remember 2014.
Crap. I completely forgot about that.