by Carolyn Thomas ♥ @HeartSisters
Whether we plan to or not, we often end up re-creating ourselves after a significant health crisis. Researchers like Dr. Kathy Charmaz call this phenomenon “the loss of self“, a type of grief experienced while we’re learning to somehow adapt and adjust to an unfamiliar new life.
Nothing is as unfamiliar to us right now as the profound changes introduced by the COVID-19 virus. And just as Dr. Charmaz identified in those of us with chronic illness, we can also experience this loss of self during a global pandemic. .
Dr. Charmaz explains:
“A fundamental form of suffering is the loss of self in those who observe their former self-images crumbling away – without the simultaneous development of equally valued new ones.”
When everything about our former life is turned on its head, we may be left with the unsettling awareness that we don’t even know what’s real or not real anymore.
Dr. Charmaz writes about suffering, but not only the narrow medicalized view of suffering most people associate with physical symptoms. That view, she says, ignores or minimizes the broader meaning of suffering.
Thus that “crumbling away” of my old self seems an appropriate term.
So much has changed in my own life, for example – starting with my ‘widowmaker’ heart attack, and ever since then due to ongoing symptoms of refractory angina (that’s chest pain uncontrolled by medications, caused by a subsequent new diagnosis of Inoperable Coronary Microvascular Disease). Two heart conditions for the price of one. . .
It wasn’t just that I had debilitating daily cardiac symptoms to deal with (crushing fatigue, shortness of breath, chest pain). It was more that, because of those symptoms, I had to stop working at a career I’d loved for 35+ years. I was no longer able to go out in the evening, because by dinnertime, I’m so exhausted that I’ve “lost my nouns”. I could no longer do many things I’d done my whole life, so I had to learn to ask others for help, and to accept help when they offered. My world has shrunk to what I call one-outing days, or two-outing days, or (rarely) three-outing days, each outing requiring a lie-down both before and after each outing, and far too often a full day afterwards just to be able to recuperate. I learned that living with chronic cardiac pain can change one’s personality. I also had to learn how to say NO and especially that, once you’ve said it, “No!” is a complete sentence.
I had to come to terms with this “loss of self” concept that Dr. Kathy Charmaz studies. And like all losses in life, I needed to find a way to gradually grieve each loss.
Yet conversely, I also felt moments of profound gratitude since the early days of my hospitalization.
As a person who had originally been sent home from the Emergency Department with an acid reflux misdiagnosis, I felt profoundly relieved to finally get a correct diagnosis. During that second trip to Emergency, I felt lucky to have met the man who was soon to become my own cardiologist, the one who finally told me out loud what I already knew at some level: “I can tell from your test results that you have significant heart disease.”
But most of all, I felt gratitude toward my brave little heart, which had somehow survived what many do not.
After my stay in the CCU (the hospital’s intensive care unit for heart patients) and then discharge home, I felt both humbled and thrilled by the care and generosity I witnessed from my wonderful family, friends, neighbours and work colleagues.
It struck me recently that this odd combination – feeling both grief and gratitude at the same time – is not unlike what I’m experiencing now under self-isolation at home during this pandemic.
Here are some of the things I miss from my pre-COVID-19 life (both big and little – but each one means I’m feeling a loss):
- hugging and cuddling our granddaughter Everly Rose (this is a HUGE loss for me)
- coffee shop chats
- Saturday morning breakfasts during garage sale season with my pal Nancy
- doing my own shopping (when and where I want)
- visits to our 96-year-old friend Pat across the pond in Vancouver
- trusting that I won’t get sicker if I go into the hospital
By the way, if my list seems trivial to you (and certainly not nearly as serious as being laid off work, or not having rent money, or losing a loved one to this virus), it’s NOT because I’m making light of those with genuinely life-altering losses.
Author and breast cancer advocate Nancy Stordahl writes on her Nancy’s Point blog about allowing ourselves to admit the things we have lost and the things we miss.
“There should never be shame in talking about our losses. And doing so does not mean we are negative thinkers, ungrateful, filled with self-pity or are unable to move forward.
“Doing so is an essential part of emotional healing.”
At the same time, here are some of the things I’m grateful for during these surreal times:
- my kids stepped up to do all grocery shopping and errands
- a sign-up sheet on our condo bulletin board to match neighbours willing to help out and those who need help
- video chats that keep me in touch
- spring weather and spring flowers
- daily one-hour walks around the neighbourhood
- cleaner air, quiet streets, birds singing
- a beautiful little apartment with lots to do (as I like to say: “I’m not stuck at home. I’m SAFE at home!”)
- the privilege of having a retirement pension deposited into my bank account every month
- lots of time to read, write and make art
- I live just a few blocks away from a world-class teaching and research hospital that’s well-equipped to handle COVID-19 if I do get it
- I live in Canada (aka “commie pinko land of socialized medicine”) where I and my family will never need to worry about how to pay for our health care
As Nancy Stordahl reminded us recently:
“Grief and gratitude can most definitely co-exist.”
And as I wrote in my book (A Woman’s Guide to Living with Heart Disease, Johns Hopkins University Press, 2017):
“In my own experience with heart disease, I learned to cope with crisis by coping. I learned to adapt to crisis by adapting. I learned to roll with the punches because, like so many of us, I’ve practiced rolling with so many figurative punches during my life.
“It’s not because I needed the crisis to become a better person, not because it was some kind of a gift, and certainly not because I needed to add meaning to a meaningless existence, but because human beings have a remarkable ability to get used to almost anything in life (both positive and negative).”
Now, as the weeks morph into months of precautionary self-isolation, how will our own responses to these restrictions evolve?
She wasn’t writing about COVID-19 at the time, but Dr. Kathy Charmaz nailed it when she observed that, for most of us, these responses tend to modify as time goes by:
“Priorities change, and along with them, perspectives. What began as an alien reality may, over time, come to feel natural, inalienable – right. What once may have devastated someone can become a path to developing competence and compassion.”
Please. Stay safe. . .
♥
NOTE FROM CAROLYN: I wrote much more about adjusting to life changes in my book, “A Woman’s Guide to Living with Heart Disease”. You can ask for it at your local library or favourite bookshop, or order it online (paperback, hardcover or e-book) at Amazon, or order it directly from my publisher, Johns Hopkins University Press (use their code HTWN to save 20% off the list price).
♥
Q: During this COVID-19 pandemic, what do you miss most? What are you grateful for?
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See also:
– Read more Heart Sisters articles about COVID-19 and heart patients
– Heart Patients Warned of Risks from Coronavirus (COVID-19) from The American College of Cardiology’s CardioSmart patient report
Heart Sisters 
Hi Carolyn,
“Loss of self” is definitely another parallel one can make between this pandemic and being diagnosed with a serious illness. I’m finding there are a lot of parallels! I’m sure you are as well.
So much of our old way of life does seem to be crumbling away, and I wonder how much can be restored at some point. Time will tell, I guess.
Sometimes I wonder why we hesitate to allow ourselves to grieve – even the seemingly small losses matter. And as you know, serious illness brings many losses – some small, many not. They all matter, and we needn’t feel guilty about grieving for any of them. The same holds true during this pandemic.
Love the title of your post. Turns out grief and gratitude are not unlikely companions at all. I write about them all the time, and they most definitely can and do co-exist. Thank you so much for including a few of my words in your post and for the link too. You’re the best.
Take care and stay safe, Carolyn.
x
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I think you’re so right, Nancy: grief and gratitude are not in fact “unlikely” companions – except in the stereotypical expectations we may encounter from those who likely don’t have lived experience of both at the same time! It’s why bereavement is often called crazy time: one minute we’re wailing in agony, the next we’re appreciating an unexpected kindness.
Or look at the unrealistic platitudes that you too have argued against (even in the title of one of your own books!) – that you should be somehow “grateful” to get cancer or another debilitating diagnosis because, clearly, it’s actually some kind of a gift that will make you a better person! NOTE TO READERS: Please see Nancy’s terrific book, “Cancer Was Not a Gift and It Didn’t Make Me A Better Person“)
I think many people feel quite uncomfortable listening to others talk openly about their grief, hence the urge to offer something cheerful in response (and especially if they decide that your grieving is just a “small” loss, you might hear a list of examples far worse than your own to convince you that what you’re feeling isn’t that bad after all). It’s that “Well-At-Least” syndrome: “Well, at least you didn’t have a bad post-op infection like my Auntie Sophie had…” – and away they go…
I also think that some of our reluctance to talk about our grief is self-inflicted. I’m more hesitant, for example, to talk about grieving a minor loss (except in a joking way) for fear it will come across as self-pity, or making a mountain out of a molehill.
For example, this one sounds VERY small but truly one of the saddest moments I recall since the pandemic began was when an annual paper/craft sale that my ‘crafty’ girlfriends and I attend every year together was cancelled just days before the event date. We were SO disappointed, far sadder than anybody else would have ever expected.
Thanks Nancy – stay safe… ♥
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Gee Carolyn, you have a very big brave little heart…
Reminds me of one of the best books of all time, The Engine that Could.
Excellent combination of personal and informative post…
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Thank you so much, Dr. Steve. Coming from you, this comment means such a lot to me. I had to laugh at your mention of the little engine that could story. That’s the “I think I can, I think I can…” book, right? An honour to be compared to it!
Please stay safe up there in Alaska.
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I did a keynote at a national fibromyalgia conference called “Good Grief!” I do think that’s what you, too, are experiencing.
In the worst of circumstances and the most dire of situations, if we all could hold onto gratitude and behave with loving kindness, this would be a lovely world.
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Hi JudyJudith! I would have loved to have heard that keynote presentation!
I think I’m getting pretty good at that gratitude business AFTER THE FACT. Not too great when right in the middle of “the most dire of situations” – as it does seem to be in hindsight that I can look back at where I was, compared to where I am now – before seeing with some dispassionate balance how things truly are.
When I was writing my book, I included some interesting research from Dr. Sonja Lyubomirsky (whose name, adorably, translates from Russian as love and peace). She’s spent her career studying the impact of life events – including catastrophic events – on optimism and happiness. Surprisingly, her research suggests that events do not necessarily have much of an impact on optimism or happiness. Rather than life events shaping our outlook, she suggests it’s just the opposite: our outlook shapes how we respond to life’s events. I do believe that – it just takes me a while to connect the dots sometimes!
Stay safe… ♥
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Wow, just so relatable!
Thank you x
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Hi Julia – I’m glad you could relate! Stay safe…
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A quick addendum to my post from today (below): My saving graces after my heart attacks, especially the first heart attack, was: my faith, music and you Carolyn.
This blog was a lifeline to me and I clung to you like a drowning woman because I was drowning… drowning in fear.
I have never thanked you and want to take this moment to do so. My deepest thank you Carolyn for pulling me to shore.
Pam
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Thank you Pam for taking the time to add that lovely PS to your first comment! That means a lot to me… ♥
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I can deeply relate. I feel like the world has now suffered an enormous heart attack and people can now relate to how I felt after having 2 heart attacks within 7 months.
My first heart attack especially. I felt like my sense of safety in life had been suddenly removed. My body had attacked me without my permission. I could not “fix” what was happening to me.
And ever since those heart attacks, I find it hard to trust those professionals to really help me; from refusing to do a follow-up appointment 2 weeks after my first heart attack because I had no insurance to my second heart attack occurring on the heart floor and no one responding for 20 minutes, and should stop hitting the nurse call button so much during the heart attack!
I did get a letter of apology from the hospital for that last episode.
This COVID virus parallels all of that for me…the helpers not helping me. On the other side however I see the best of humanity showing up and all nurses responding to buttons everywhere. People wanting to help and attempting to comfort others.
I want to let others know that “getting back to normal” is not going to happen. We will carry what we are learning now into the future and I believe we can become better versions of ourselves…..if we choose.
Stay safe and know you are not alone.
Blessings,
Pam
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I like your analogy: “the world has suffered an enormous heart attack!” You also hit the nail on the head with the apt comparison of COVID-19 to our loss of feeling safe. That’s a huge and disorienting loss. All patients diagnosed with chronic illness (and many acute conditions) know that horrible moment when we desperately try to make sense of something that makes no sense to us.
I’m glad you got that apology letter from the hospital – but it must have felt like too little, too late – and why must we endure that kind of medical dismissal in the first place?
So many now are indeed helping, over and above the call of duty – reminding me of that great Fred Rogers quote: “When I was a boy and I would see scary things in the news, my mother would say to me, ‘Look for the helpers. You will always find people who are helping.’”
Thanks for this, Pam and stay safe…. ♥
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I have had a STEMI heart attack, nursed my husband till he passed last July, joined 2 sisters in the loss of our husbands within 2 weeks… after a long winter of dealing with a mass of paperwork related to my husband’s death.
I was so looking forward to spring and getting on with life as I knew it. Now this….IN SPITE of diabetes, heart disease, and asthma, I always survived… still, I have wonderful children and grandchildren and a comfortable home with my 2 cat companions…
so yes, my life is different now with loneliness but also gratefulness abounds!!
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Chris, it’s heartbreaking to read about not only your own husband’s death, but also that you and your sisters all became widows together. How sad for you and for all of your family members. No wonder you were looking forward to spring as a metaphorical turning point in your grief.
There’s something about springtime that brings promise each year, new buds on the trees, new green growth poking out of the dirt, longer sunny days after a dark winter. I often think while I’m out for my walks how beautiful the world is – at the very moment that everything about that world seems to have stopped. How can that be?
Thanks so much for sharing your perspective here for us. Stay safe… ♥
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