Surviving COVID-19 Together

By Cynthia Toussaint, PNN Columnist

I’m a survivor. At least that’s what I’m called now that I’ve fought my way into cancer remission.

But why the new acknowledgement? As a person who’s endured childhood trauma and decades of high-impact pain with 15 comorbidities, including chronic fatigue, I earned the “survivor” label a lifetime ago. My world has been up-ended and negatively impacted in most every way since 1982.

It’s just that the aforementioned health crises were never taken as seriously. But because I’ve made it through the most aggressive form of breast cancer, I’m at last an honest-to-goodness, card-carrying survivor. Okay, I guess I’ll take it.

In any event, as a person who’s been seriously ill for nearly four decades, I’m accustomed to going from the frying pan into the fire. True to form, after enduring six months of grueling cancer treatment, I find myself coming out of a long, dark tunnel just to step into a bizarre new one. Enter COVID-19.

Yes, I’m alive, recovering well and wanting to move forward. Trouble is, there is no moving forward during this pandemic. 

More troubling, while able-bodied friends who can’t imagine life-long illness try to give comfort by reminding me that I just have to get into the new, temporary COVID rhythm, I suspect something more ominous will bring me my next survivorship card. And I’m concerned we’ll all own a piece of that plastic.

If you think about it, COVID-19 appears to be globally playing out just like a chronic illness. The virus started as something new and relatively small, a nasty bug that was different, but nothing to write home about. As it picked up steam, the threat settled in and the masses went into crisis mode. Now people are cut-off, lonely and depressed while longing for the life they had. Sound familiar?

Deep down, I’m sadly sensing there’s no going back. Like severe chronic illness, temporary isn’t an option once life has fundamentally changed on a profound level. Bad begets bad as things start going down the rabbit hole. And what of the pandemics to come?  I’m guessing the best we can hope for is acceptance and learning a new way of life. A new normal, if you will.

I don’t think healthy people have the ability or perspective to grasp this possibility. I don’t blame them, that’s understandably too bitter a pill. But that’s what we with high-impact pain do -- continue to adopt new normal after new normal due to loss, abandonment and disappointment. We carry on.

Still, right now, I deserve to be out-of-my-mind angry.

Being a cancer survivor means living with acute anxiety. If my cancer recurs, it will most likely be in the first year or two and much more aggressively. I want to live every moment I have to the fullest, but the world is shut down. I ponder whether my life partner John and I will ever again have an intimate dinner with friends, travel to an exotic destiny or go to a ballgame. I chose to fight cancer like a Tasmanian devil with the promise of life if I won mine. This feels like a massive bait and switch.

While I have the right to be hugely teed off, I’m trying like hell to make a different choice. I’m moving away from bitterness, as I learned long ago that sour grapes don’t get me squat. As my surrogate dad used to lovingly remind me, “It is what it is.”

Healthy Habits

So here’s what I’m doing to take my best shot at maintaining remission, keeping my pain in check and, yep, be a COVID survivor.

I’m using my quiet time to learn how to live the healthiest of lifestyle choices so my “terrain” will remain cancer hostile. Besides diet, exercise and finding purpose, this includes stress-management, the “Big Balance” that I’m finally learning  to master. In fact, I’m enjoying shedding my reputation as the woman who gets five things done before breakfast.

It starts with quality sleep, a HUGE challenge due to fibromyalgia and chronic fatigue syndrome. These days I’m in bed before 9pm. During this sacred, unwinding time, I don’t listen to COVID coverage or use my iPhone before falling asleep around 11pm. Instead, I meditate, tune into stimulating talk radio, and spend loving time with John and our two kitties. Happy to report I’m sleeping more restoratively than I have in two decades. And it feels like a miracle!

Another new healthy habit is checking in with my body several times a day. I lovingly ask what it needs, then nourish it. I’m deeply listening to its wisdom for the first time in my life. For example, I no longer count my swimming laps, but instead stop when it feels right. And I call it quits with my forever meaningful work before I skid into fatigue. If you know me, you know this is the new me. I’m even learning how to say “no.”  

I occasionally see a few close friends while social distancing, and John and I spend long, relaxing evenings at our neighborhood park. We eat plant-based whole foods (amping up our intake of fruits, veggies, nuts and berries), play backgammon, people/dog watch, and just sit and talk as the sun sets. I’m reconnecting with my love of film, books and music — and I’m considering getting an acting agent for disabled talent, as well as diving deep into French language and culture, a longtime passion of mine.

Perhaps most important, I live in Gratitude. I thank God for every day, for every miracle that knocks at my door. I’ve always been juiced by the big things; now the little things are just as gorgeous and life affirming. And I hold onto hope. You gotta have hope.

Hey, maybe the new normal to come will be glorious. It’s really up to us. We with high-impact pain have adaptive super powers that can lead the way for those newly initiated to serious life upset. We can be the example. Let’s stay calm, mask up, hand wash and do a dance (while six feet-apart).

I’m more than willing to add COVID survivor to my list of making-do-with-the-impossible. I gain strength and grace from knowing we’re in this together.

We got this.      

Cynthia Toussaint is the founder and spokesperson at For Grace, a non-profit dedicated to bettering the lives of women in pain. She has lived with Complex Regional Pain Syndrome (CRPS) and 15 co-morbidities for nearly four decades. Cynthia is the author of “Battle for Grace: A Memoir of Pain, Redemption and Impossible Love.”