The sun sets and I journey upstairs to take a shower. I pull the shower head down, let it hang. I step into the tub, I sit. I didn’t used to shower this way; I used to stand and sing. Now, I sit in silence, listening to the water spray. It’s loud, louder than I remember. Everything seems loud these days.
Sitting in the shower has become normal to me. Preferred, almost, but only because it doesn’t exhaust me the way standing in steam does. If I had it my way, I’d be belting in home-made saunas like I used to, but with POTS and a heat intolerance, I’ve learned to adapt. To my bewilderment, I’ve found myself in the midst of what most people call a “new normal.”
I’m not the only one grappling with a ‘new normal’ right now. The phrase is plastered all over the internet, dominating news headlines, and I’d go so far as to say it was one of the most-used expressions of 2020, outshined only by the words “Zoom” and “unprecedented.” Today, “new normal” is used in reference to the pandemic and the various ways our lifestyles have changed–from face masks to social distancing, to diligent disinfecting and more. But “new normal” isn’t a novel phrase, or reserved solely for this covid-19 era. It’s a phrase that’s also popular in the world of chronic illness and that I’ve come to know very well.
In the months leading up to my diagnosis, I went on countless social media deep-dives. Plunging through hashtags of #POTS and #dysautonomia, I was desperate to find people in the same boat as me. I was hungry for advice from people who understood and were further along on the process than I was, with residency in what many call the “the other side.” I scrolled through post after post, my thumb turning numb, hearing variants of the same message: “You will find a new normal.” But would I?
At the time, these words meant very little to me. Without an official diagnosis or the resources for a way out, this advice felt flimsy, two-dimensional, like an aspiration forever out of reach. I could see its appeal: “new normal” comforts, encourages, heartens, and gives hope. It lives dependent on the promise of flexibility and versatility, reliant on the potential of resilience and grit. But as I stayed suspended in survival mode while I waited on a diagnosis, I couldn’t comprehend what it truly meant to move forward, or what that would look like, or if I would ever.
I heard this phrase yet again while meeting my dietician. A woman who lives with a chronic illness herself, she spoke from personal experience, assuring me that I too would eventually “find my new normal.” She promised me that one day, I won’t think twice about what supplements to take, that I would slow down and adjust to my limitations as needed, eventually settling into a slower speed and rhythm of life. She swore to me that with time, my foreign reality would become familiar, and that my debilitating symptoms would lessen as I learned to manage my condition. My dietician had no doubt in my ability to grow and adapt, believing with a steel-like, heartwarming conviction that ultimately, I’d prevail.
I was touched and a little amazed, though I confess I wasn’t truly convinced. I couldn’t yet fathom a future beyond my reality of crawling to the bathroom, or the sleepless nights due to unforgiving symptoms, or spending hours every morning trying to force my body upright. My future was still fuzzy to me, still too uncertain to discern, and it was distorted by my growing fear that I would never be well again. In February of 2020, a “new normal” seemed impossible to me, as likely as if you told me I’d been invited to brunch on the moon.
In a sense, the prospect of a “new normal” also felt undesirable to me. I didn’t want my reality to become normal, I wanted a refund or a time-machine; some way to transport back to my old life. To achieve a “new normal,” I would first have to accept my state of affairs and at the time, that seemed like an unreasonable request. The thought of my 2020 reality becoming normal repulsed me; I didn’t want a “new normal,” I wanted my old normal, and stat.
But fortunately, my dietician was right. The thirty pills and supplements I take every day are now as integrated into my routine as is brushing my teeth each morning. If I close my eyes, my mug of chicken broth after breakfast is just a unique cup of coffee, and has become no more unusual that pouring myself a cup of tea. With time, I have learned how to maximize my energy, designing my days around my body’s needs, and I’ve managed to carve a life out of the confines of both my illness and covid-19.
To the same degree, I’ve grown “immune” to the oddity of face masks in public. It no longer seems unusual to visit with my grandparents on the driveway as opposed to inside their kitchen, and I’ve gotten used to swapping out hugs for hand-waving, even though I do miss the former. I’ve seen first-hand from my experience with chronic illness that humans carry a remarkable capacity to adapt, so it comes as no surprise to me how we have adjusted to pandemic life: conducting classes online, building collections of reusable face masks, and finding ways to carry on when the life we knew was halted.
But even though I meet all the qualifications required for “new normal” status, if you asked me, I’d confess that my life still doesn’t feel normal. It’s more so that I have gotten used to its weirdness; nothing about healing from chronic illness in the middle of a pandemic feels normal to me.
An all-time favorite writer of mine, Suleika Jaouad, is also familiar with the expression “new normal.” Having been diagnosed with leukemia at the grand old age of 22, she knows first-hand how illness can sever a life, interrupting what was and forever altering what’s to come. In her 2013 NPR interview, she confesses, “I don’t like the expression new normal because I think life doesn’t really go back to normal.” She revamps the phrase instead, rebranding it as “new different.”
I like the concept of “new different.” I like the way it allows for radical, necessary change, and I like the way it accepts the present as it is, without any comparisons to The Before. The phrase “new different” allows our lives to continue changing as they inevitably will, while shedding the facade that we can ever recreate the past. Unlike “new normal,” “new different” welcomes change, opening the door to more and more life.
Two days ago, I went on a walk to check the mail. It’s a short walk, not too far, but on my way back, I kept walking. Up the street and around the cul-de-sac, talking my time while crossing the deserted road. I kept walking because it felt good. I repeat: I was exercising upright and it felt good. It was a sensation that in my depths of my illness, I was certain I would never have again.
It was liberating to have the choice to keep walking. To have the freedom to control the duration of my walk, instead of surrendering to symptoms that often make that choice for me. It was liberating to leave my limitations at home, to have a break from being chaperoned by relentless fatigue and dizziness. As I approached a stop sign, I thought to myself, “What an incredible moment this is.” I was acutely aware of how remarkable it was to be walking and well after everything my body’s been through. I felt strong and content, borderline euphoric. I felt like my old self again, only more grateful this time.
Like many, I made plans that shattered and crumbled to ruins while my life and reality fundamentally transformed. Like many, I’ve had to adapt and adjust to conditions that at times, were frankly unimaginable. Like many, I’m wading knee-deep in an aftermath, discovering what it means to find a “new normal,” or “new different.”
As I recover, it’s tempting to try to resuscitate the life I lived and the person I was prior to developing POTS. But illness, like other hard things, have a way of changing you to your core. And the longer I trudge through the aftermath, the more apparent it’s become that I will never again be the girl I was from before I fell ill. And maybe that’s the whole point. Maybe the point is not to find a new normal, but to find a new different, over and over again.
