Ups, downs, and going with the flow of diagnosis

by Carolyn Thomas    ♥  Heart Sisters on Blue Sky

Karen Salmansohn is the author of many books, including (2nd best title ever!) “HOW TO BE HAPPY, DAMMIT!”  – a book reviewed by one reader as “self-help for people who would never be caught dead doing self-help”).  In her regular  Psychology Today column, while going through a period of time she called her personal “Bucket List From Hell”, Karen made a profound observation that resonated with me – and may also do so with you if you’ve been freshly-diagnosed with heart disease (or any other bad thing you wish was not happening). As Karen wrote:    

“You must remember, life has many ebbs and flows. Unfortunately, life can sometimes feel like ebb, ebb, ebb, brief flash of flow, more ebb, ebb, ebb…”

The words ebb and flow generally refer to the times when things seem to be on the decline (“ebb”) or other times when things seem to be looking up (“flow”).  But when the ebb is happening, I suspect I tend to discount those lovely flows. And when the ebbs involve a health scare or a medical diagnosis, it may seem like there will never be any more flow moments ever again.

That certainly describes my own immediate response to being misdiagnosed with acid reflux in mid-heart attack – despite my severe symptoms of central chest pain, nausea, sweating and pain down my left arm.  A man with the letters M.D. after his name confidently announced to me in the Emergency Department: “You are in the right demographic for acid reflux!”  before sending me away. Definitely an ebb moment.

I went home that morning feeling dismissed, unheard, not taken seriously, and profoundly embarrassed about having made a big fuss over nothing. Much too embarrassed, in fact, to return to that Emergency Department when my symptoms continued to worsen. A very low ebb, indeed.

But after two weeks of full-time arguing with myself about returning to Emergency (did not want to once again waste the valuable time of busy medical professionals who had already sent me away), an important period of flow suddenly happened.

Finally, exhausted by both pain and utter desperation, I somehow forced myself back to Emergency, where I met a different Emerg doctor, thank goodness. That second doc actually called in a cardiologist this time, who spoke to his colleagues about my test results before approaching my bedside, reaching out to hold my hand in both of his own, and then quietly telling me:

“Mrs. Thomas, I can tell from your T-waves and your other cardiac tests that you have significant heart disease.”

You might think that this moment might qualify as an immediate crashing ebb on the scale of dreadful ebbs that could happen – but oddly enough, I felt instead an overwhelming flow of relief:

These people were taking me seriously.

They believed me.

They would know what to do.

I was in good hands.

Don’t misunderstand: I wasn’t relieved about my serious condition, but I was extremely relieved to finally have a diagnosis. And another relief was the realization that when I’d first shown up in that Emergency Department two weeks earlier, exhibiting symptoms I was sure were heart-related, I was right. I should not have been sent away. I was having what doctors still call the “widow-maker heart attack”.

I’d known for weeks – despite what that first Emerg doc had confidently pronounced – that something was very wrong with me, and I’d finally agreed with that pesky little warning voice in my head telling me to GO BACK TO THAT HOSPITAL!

So now I had a diagnosis and a treatment plan. I didn’t expect that even bad news could be a relief compared to not knowing. See also: The shock – and ironic relief – of hearing a serious diagnosis

My clearest memory of that day: lying on my gurney en route to the cath lab, mesmerized by the endless hallway ceiling lights flickering by in a bright white blur overhead, and a sense of profound relief to be on my way.

I was not afraid. I felt oddly calm. I was glad to be going wherever that hospital porter was taking me and my gurney. That’s an example of how flow can make the unbearable weight of stressful ebb moments seem weirdly light again.

Everything about this experience seemed like a minor miracle to me. I now had a stainless steel stent implanted in my left anterior descending coronary artery which would forever remain inside my heart. The procedure felt surreal. I was awake, I watched the entire thing live on the big screen overhead, as a very thin catheter was threaded into my wrist’s radial artery, then up, up, up into my beating heart.  (Talk about a moment that allowed REAL flow!)

But . . .

. . . by the time I was later discharged from the CCU (the intensive care unit for heart patients) and safely returned back home to my worried family, the up and down reality of “ebb, ebb, brief flash of flow, more ebb, ebb…”  as described by Karen Salmansohn  began to hit me hard. 

The tide had turned.  It was now: “All Ebb, All The Time.”

Once I got home, nothing about my life seemed “normal”.

I was desperate to go back to the work I loved in hospice/palliative care – hoping that working would somehow allow me to feel “normal” again. But when I was cleared to come back for a half-time return-to-work trial, I barely lasted a month. I knew it, and unfortunately, my work colleagues could see it, too. I couldn’t focus, I couldn’t make decisions, I cried at our Management Team meetings. What was happening to me? Shouldn’t I be happy that my blocked artery was now unblocked? Shouldn’t I be grateful to those interventional cardiologists in the cath lab? 

Within a remarkably short period of time, I’d lost my job and, as the late sociologist/researcher Dr. Kathy Charmaz called it, I’d also lost my “sense of self“. I’d somehow become a PATIENT.

This under-appreciated loss, as Dr. Charmaz used to say, is common among patients “who observe their former self-images crumbling away – without the simultaneous development of equally valued new ones.” 

I was grieving this loss of self. And oh, did I mention? I also had new and alarming cardiac symptoms, resulting in being re-admitted to the hospital due to possible “stent failure”.  More ebbs that I did not want to face. My cardiologist ultimately referred me to our Regional Pain Clinic because of something called Refractory Angina (translation: “chronic chest pain despite optimal treatment with medication, stents and/or coronary artery bypass surgery) due to a shiny new additional cardiac diagnosis of coronary microvascular disease.  

So yes, I had become the kind of person who has both a cardiologist AND a pain specialist! Who was this unrecognizable person I’d just become?

But then there’s that flow experience again: both specialists stepped in at a critical time in my ebb experience to help in countless remarkable ways. I embraced the flow.

Strangely enough, it was those free Pain Clinic programs like Health Recovery Tai-Chi and Pain-Self-Management classes where I learned about what I call the freakish nature of cardiac pain.  And being in a room filled with other people sharing their own wisdom and personal experiences helped me to feel less alone and more informed.  

Here’s how Susannah Fox, author of Rebel Health: A Field Guide to the Patient-Led Revolution in Medical Care described patient support groups during a Harvard Public Health interview:

“The incredible emotional support that comes from feeling like there are other people like you is very important – but that is just one aspect. There’s so much more that people can benefit from. People who share the same disease, life stage, or disability can share recommendations about everything from clinical trials to practical tips for daily life.”

A few years ago, I ran a guest post here  from the author L.R. Knost called “Life is Amazing. And Then it’s Awful.“  As you might guess from that title, its theme echoes that of Karen Salmansohn’s at the beginning of this post (brackets below are mine):

“Life is amazing. And then it’s awful. And then it’s amazing again. And in between the amazing and the awful, it’s ordinary and mundane and routine. Breathe in the amazing (the flow!), hold on through the awful (the ebb), and relax and exhale during the ordinary. That’s just living heartbreaking, soul-healing, amazing, awful, ordinary life. And it’s breathtakingly beautiful.”

Image: The Digital Artist, Pixabay

Q:  Can you recall a time when an ‘ebb’ in your health was followed quickly by ‘flow’?   Or vice versa? 

♥

NOTE FROM CAROLYN:  I wrote about the profound transition of “becoming a patient” in my book,  A Woman’s Guide to Living with Heart Disease (published by Johns Hopkins University Press). You can ask for it at your local library or favourite bookshop (please support your independent neighbourhood booksellers!) 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 30% off the list price).

See also:

–WomenHeart Connect . This online support group’s membership numbers tens of thousands of women worldwide – all living with (or caring for someone with) some form of cardiovascular disease.  It’s free to join, and it’s open 24/7.