Remembering to Dance in the Rain
Chronic illness while writing comes with its fair share of storms.
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Outside, the clouds have gathered, stealing away the sun and turning the day gray. The temperature has dropped twenty degrees and the winds have picked up. The squirrels are sheltering in their nests and the trees wave in the changing weather with willowy arms. Without looking outside, I know a storm is coming. I can feel it in my body.
Sometimes, I feel like a magnet for storms. Every few days, I awake with a throbbing in my temples or pulsing in my teeth and know the rain is coming. The squalls blow in like clockwork, despite the weather forecasters’ promises of sunny days. A magical blurb appears on the radar out of nowhere, then the winds come charging in to tear off shingles and rip down trees. Downpours saturate the earth and overflow the feeder creeks to the river. We hunker down and wait for it to pass. This is the way I’ve come to live my life.
Years ago, I liked the rain. I danced in the rain as a child, with my kids as a young mother, and with my husband when we first became lovers. Great directors like Fellini and authors like Sparks made running through the fountains or embracing in the rain seem romantic. I like to think of that time in my life as standing between the raindrops, experiencing the beauty without getting wet. Unfortunately, that illusion faded.
In my late twenties, I began to see an uptick in migraines, a disease I’d battled since puberty. Suddenly, dancing in the rain wasn’t nearly as fun with my head pounding like a jackhammer into my teeth and eye sockets. I was referred to a neurologist, who started me on a new daily medicine that was supposed to control the migraines. For a few years, I made slight adjustments and moved on with my life but it was never quite the same. Remembering to take my medicine, having to skip bottles of wine with dinner, keeping a regular sleep schedule — these things were the antithesis of youthful adventure. Still, they let me continue to work, to mother, to exist in the normal world most of the time.
Even then, and clear up to my thirtieth birthday, I had this grandiose idea that everyone was meant for something. When I got pregnant unexpectedly and my dreams disappeared into a cloud of diapers and responsibility, I assumed it was my child who would change the world, that I’d just misunderstood my purpose. I was still following some grand design of fate by being a mother. When my second child came along, I re-upped my ante and pinned all my lost hopes and dreams on the two of them. In retrospect, that was unfair. Such a large burden shouldn’t have been theirs to bear.
By my mid-thirties, my migraines morphed into a neurological typhoon. The highlight reel is too long to recount, but the list of things I missed while locked in a dark room on pain meds is exhaustive. The symptoms became more complex, the pain more disabling. Taking a pill and going on about my day was no longer an option. I went from specialist to specialist, medication to medication, hospital to hospital trying to find a reprieve. An unexpected accident during a routine surgery in 2014 brought my world to a halting stop. Like a flip of a switch, my future went dark, just a giant black hole where I once saw great things ahead.
A neurologist told me in 2016 to stop looking at life as it was and start thinking about my “new normal.” While that annoying phrase became globally recognized during the pandemic, in 2016 it was a personal death sentence. It was devastating to accept that my old normal was gone forever. Living with my new limitations slowly erased all of my previous accomplishments and made the possibility of any new goals seem impossible. My kids, then grown, had moved on with their lives. My job performance (and attendance) suffered until I reduced my hours to part-time, and eventually retired. My bank account dwindled with no source of income, and with it went my self-esteem, my independence, my sense of purpose. I hunkered down and waited for the storm to pass.
During this time, I sought out ways to use that expansive free time I hadn’t asked for or wanted. I researched and wrote wills, power of attorney documents, and lists of songs I wanted to be played at my memorial. I recounted stories on paper of antique family knick-knacks and serving pieces I wanted to hand down to my kids. I crocheted baby blankets for future offspring my children didn’t have or even want. I was preparing to die. A year later, I was still kicking and had run out of things to do on my mortality bucket list.
The thing about living with chronic illness is that it requires you to focus on the exact thing I’d been taught my whole life to avoid — busy work. In the beginning, when the pain was at its worst post-surgery, I caught up on my TV viewing. For all the years I spent missing series finales and standing clueless at watercooler recaps of pop culture, I quickly grew sick of watching hours of fictional characters live out impossible lives. Days would pass without a shower or change of clothes — sometimes due to lack of ability, mostly lack of motivation. I realized dying of my injuries and illnesses wasn’t the worst thing that could happen, surviving while in constant pain might be. That realization changed my life, and not in a good way.
Six months in, I found a medication that helped push back the pain to an acceptable level. Pushing back the pain helped lift the veil of depression. I created a new routine that consisted of making coffee, making the bed, showering, and dressing. Some days, that’s all I had in me, but I needed to complete each task, each day. On the good days, I picked something more difficult to do, busy work I’d avoided for most of my adult life (i.e. chronologically sorting family photographs that dated back to the 1950s). I watched no more than four hours of TV a day because I found it caused me to feel panicky and depressed. I had suffered a sort of PTSD from being home and bed-bound for too long. I stopped making plans as if I had terminal cancer. As I healed mentally and physically, I knew something had to change. I needed a job, even if it was self-imposed. As is my nature, I returned to writing.
In the old days, I wrote every night. I wrote thousands of words while my children slept and the clock ticked away the hours. Those nights were outlawed in the land of the new normal. Lack of sleep causes migraines. Deviation from routine causes migraines. Eating cheese or drinking too much coffee causes migraines. With all those rules, my muse packed up her stuff and hit the road. Even when I behaved, some of the plethora of medications I took caused cognitive impairment, from mild aphasia to catatonia-level sedation. But I kept going, deleting more than I saved. Eventually, I wrote through the grieving of my old life and managed to convince a health magazine it was worth publishing.
Mild success gave me back the sense of purpose I’d been lacking for years. I figured if I wrote for and about people like me, maybe we could feel less alone. I decided that would be my purpose. In the beginning, it worked beautifully. I received feedback from strangers saying they felt heard. One woman reached out to thank me for putting into words what she couldn’t. She asked if she could use my article to talk to her family about her illness. I had shares on major news pages and even found myself trending. But one thing I’ve learned, there is always a storm brewing behind the sunshine. For me, it was a comment on a piece I wrote during an especially vulnerable time.
“Wow, what a waste,” it read. “I feel sorry for this person’s family. She should just kill herself.”
Reading those words over and over, I was crestfallen. Some stranger behind a keyboard had knocked the wind out of my moth-eaten sails. Everything I’d worked so hard to build back from the abyss came crashing down like a house of cards. I stopped writing completely. I stopped getting dressed in the morning. I stopped caring. Because deep down, I wondered if that mean-spirited troll was right. All my fears closed in and I shut down. My mental anguish became a self-fulfilling prophecy. The pain rebounded and my motivation atrophied.
It’s hard to explain to someone who hasn’t experienced it what the mental and physical changes of living with a chronic illness feel like. I recall a woman I met in my twenties who had some sort of invisible illness, an aptly named subset of neurological and vascular diseases. This woman was always sick, always having surgeries, always in more pain after than before. Her only sources of income were from sympathetic family members and a small Social Security check. Yet, sometimes she went on vacation or shopping. On the outside, she looked the same as any other woman her age. I thought silently what everyone else said aloud — “Maybe she’s just lazy. Maybe she’s working the system.”
I cringe now thinking about my attitude toward her. See, here’s the thing: No one can see someone else’s pain, only a reflection. I think of that woman often when I have to cancel plans, despite appearing to be in good health and spirits the day before. While she was in no way stoic — she readily talked about her aches and pains like they were good friends — her maladies were very real. Others I’ve met on this journey are in the dark entirely. Their worst days are hidden behind a mask, kept secret from even their closest loved ones. I find myself somewhere in between. I talk about it and write about it in hopes to make others understand, or maybe to justify it to myself. On my worst days, I feel like death and crawl into bed wishing for it, but I look completely normal. It hides in plain sight, like a rain cloud on a sunny day.
Over the years, I’ve learned to manage my lifestyle to help prevent pain flares. I strive to respect my new normal without giving up on living. It’s a struggle I face daily, and some days I fail. I allow self-pity to intrude. I mourn my old life and body. I miss my old normal and wonder if I could have done something to avoid all this. Then, I pick myself up, get dressed and showered, and find something to do with my brain other than lament its failures.
Writing a book became my goal when I returned to writing after a long break and a crisis of conscience. I hopped back on the wagon and started typing one afternoon. A million deleted words later, I met the writing part of my objective. While completing a novel is an accomplishment, for me it was more about proving someone wrong. I needed to prove to an anonymous hater behind a keyboard that I not only deserved to live but that I still had something inside me to offer… and I needed to prove it to myself.
That person will likely never see or know the damage they did, but in some small way, I am grateful for the push they gave me. It forced me to climb out of my black hole. It’s been a long journey, one I’m still sharing as I feel emboldened. There are days I delete what I want to say (including this entry — twice), worried about what others might think of me. I worry constantly about the next storm, but not all of them are hurricanes. Some are gentle showers, perfect for dancing in the rain.
