by Carolyn Thomas ❤️ Heart Sisters (on Blue Sky)
I was recently introduced to the new-to-me concept called The Window of Tolerance (originally described by Dr. Dan Siegel at UCLA School of Medicine over 25 years ago). This concept basically describes an optimal zone in which we’re best able to function and thrive in everyday life, while dealing pretty effectively with our day-to-day stress.
Most people, Dr. Siegel believes, deal with the demands of everyday life without too much difficulty. But for some of us – especially those facing a serious diagnosis, undue stress, anxiety, pain or trauma, it can often be difficult to stay in the optimal zone of our own Window of Tolerance.
The Window of Tolerance has sometimes been compared to a river:
“Think of your Window of Tolerance as a river and you’re floating in the middle down that river. When you expand your Window of Tolerance, the river widens and the flow slows down. You are comfortable and safe flowing along the calm waters.
“However, when you experience a serious diagnosis, undue stress, anxiety, pain or trauma,your window of tolerance shrinks and the river begins to narrow and flow much faster. You start to feel uncomfortable, unsafe and have difficulty keeping yourself afloat.”
I found myself this past week figuratively navigating my own narrow and unsafe river, due to a series of unexpected events.
The week had started out fine. I was in that optimal zone. I arrived at our local hospital at 8:30 a.m. – plenty of time ahead of my 9 a.m. check-in for a minor surgical procedure I was officially admitted and soon had an I.V. in place and all vital signs monitored by a friendly nurse. So far, so good.
Until that river began to narrow and roar.
Unexpected event #1: My hospital bed was in one of a row of patient cubicles, each curtained off from the hallway for privacy. But although I could hear busy hospital porters beyond the curtain arriving to fetch other patients (“Hello! I’m Greg and I’m going to take you upstairs for your surgery.!”), I was still in my bed, dozing off and on, for what seemed like a very long while.
I started to wonder: “Has my surgery appointment upstairs already come and gone?” I decided to drag myself and my rolling I.V. pole out into the hallway where I found a nurse chatting with the porter. I asked the nurse if she knew when I’d be taken upstairs to surgery. She didn’t. When I checked the time, I gasped: “I’ve been waiting here in this bed for FIVE HOURS!?” Her eyes widened. The nurse uttered one word: “Seriously!?!” She looked more shocked than I did.
Within minutes, two other nurses arrived at my bedside. It was remarkably surprising how quickly two nurses can suddenly make things happen when they realize they’d somehow lost a patient – and right under their noses.
Losing track of a patient for five hours does not inspire confidence in the quality of patient care.
Apparently, the nursing staff had somehow forgotten I was there, lying silently behind my closed curtain. Not one staff person bothered to check if there was anyone behind my curtain – or not.
For FIVE HOURS. Until I rescued myself from the cubicle and was finally wheeled up to surgery.
Unexpected event #2: A few days ago, I developed some new and bizarre symptoms. The skin on the soles of both feet was suddenly blistering, cracking and peeling off in thick dry chunks. I’d never experienced symptoms like that. I was soon to learn that this condition (Hand-Foot Syndrome) was a known painful side effect of one of my chemotherapy drugs called Docetaxel.
This was on top of the other ongoing and dreadful chemotherapy-related side effects I had also been experiencing – like nosebleeds, mouth sores, facial rash, random bouts of constipation/diarrhea, crushing fatigue and (worse!) everything I eat or drink tastes disgustingly metallic – except frozen popsicles, ginger ale and protein shakes – the only menu choices I’ve been able to choke down since chemo started. See also: “Remember when Food Tasted like Food?”
Unexpected event #3: By now, I was feeling utterly miserable. My next chemotherapy treatment was scheduled a few days later, but I knew I just could not show up for yet another dose of the same drugs that were causing these new painfully peeling blisters, now making standing or walking almost unbearable. I contacted my oncologist’s office, and told them I needed a break, and could not be at that scheduled chemo appointment. To my surprise, he agreed to postpone chemo for a week.
Annie Wright, in her Psychology Today column, wrote this about The Window of Tolerance:
“Sometimes, when we experience internal or external stressors that cause us to move beyond that optimal zone, we may find ourselves existing in either a hyper-aroused or hypo-aroused state.
“Hyperarousal is an emotional state defined by high energy, anger, panic, irritability, anxiety, hypervigilance, overwhelm, chaos, or fight-flight-or-freeze instincts.
“Hypoarousal, by contrast, is an emotional state defined by shutting down, numbness, depression, withdrawal and disconnection.”
That definition of hypoarousal is where I’ve been camping out for the past week. I didn’t even have enough energy to panic – or do much of anything else except to shut down. I felt sick, exhausted and overwhelmed.
My Window of Tolerance felt paper thin.
I’m a person suffering ongoing and debilitating side effects caused by powerful chemotherapy drugs. Cancer treatment is generally a two-edged sword. We know from my diagnostic scans, for example, that those powerful drugs are working to shrink my malignant tumor, while stopping just short of killing the patient. But at what point is quality of life viewed as an important consideration in a cancer treatment plan?
No wonder I had zero energy. I simply could not bear even one more hideous new side effect. See also: Is Numbness our New Normal?
And instead of being able to “tolerate life’s stressors” (stressors like, for example, being essentially abandoned by nurses in that hospital), I was unable to summon up the will to even call out for help while I was ignored for hours.
Instead, I just laid there, somehow trusting that any minute now, some nice nurse would surely arrive to pull open my curtain, too.
I seemed incapable of advocating for my own care. I JUST LAID THERE.
But that’s what Dr. Siegel would likely call a typical hypo-aroused response. Throw in the inherent stress of simply being admitted to a hospital for surgery, along with the very common tendency of so many female patients like me who are reluctant to “make a fuss!” – especially around healthcare professionals – and no wonder numbness, depression, withdrawal, and disconnection are the results.” See also: When You Fear Being Labelled a “Difficult” Patient
I once watched psychiatrist Dr. Gabor Maté tell a conference audience this truism:
“To ignore something, you must first know that it’s there.”
Which reminds me: I wasn’t just being IGNORED – those nurses forgot I was even there!
For an even better example of patients being forgettable, scroll down to Dr. Anne’s terrific comment below, in which she tells her patient story of being forgotten after falling asleep on the little couch in her Mayo Clinic doctor’s exam room – and being awoken after hours when the cleaning crew arrived! Now that’s being forgotten. . .
♥
Q: How many hours do you think I would have patiently waited for a nurse to come along had it been my daughter Larissa lying in that hospital bed, tethered to her I.V. – before I’d be loudly screaming like Shirley MacLaine in this famous scene from the film, “Terms of Endearment”?
♥
NOTE FROM CAROLYN: You can find my book, “A Woman’s Guide to Living with Heart Disease” (Johns Hopkins University Press) at your local library or bookshop. Please support your favourite 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).
Heart Sisters 
Hi Carolyn,
I’m so sorry you had such a horrible week!
When I was taken by ambulance to the hospital with severe debilitating vertigo, I was offloaded from an ambulance stretcher and into a wheelchair in the Emergency waiting room. I couldn’t walk because my world was spinning so badly that I would have fallen. When I sat for 2 hours when any position but horizontal made me nauseous and feeling like I would vomit any second, I too wondered if I had been forgotten, as I couldn’t be moved to the “next” waiting area because there was no room for a second wheel chair. I desperately clutched my vomit bag like Linus’s blanket!
Fortunately I had my husband with me; but, his pleas for a place for me to lay down were greeted with “We don’t have any empty beds.” However, when I was finally wheeled into the one of those cubicles, I was wheeled past 4 or 5 empty stretchers! When I was in the cubicle I was fortunate to have both my husband and our daughter, who is an RN, with me. I still waited for a total of 8 hours before finally being seen by a Doctor and another 2 hours, before I was admitted, at 1 am, to the hallway of the Emergency Department without a bell. I had sent my exhausted family home; but, now I couldn’t go to the toilet by myself as my head was spinning so badly! Everything and everyone was somewhat of a blur and I couldn’t distinguish between a doctor, a nurse, an RPN, a custodian etc. as they all look the same, so I didn’t know who to ask for what! I certainly didn’t want to ask a doctor to take me to the toilet!
Thank you for sharing the descriptions of hypo and hyper arousal. I can identify with both states! Two years ago when my husband was very sick and losing weight and our GP and trips to the hospital couldn’t determine what was wrong, I plunged into a hypo-arousal state, which I likened to depression, not black depression, more like a grey depression. Following my 5 day stay in hospital last April for BPPV, extreme debilitation vertigo, I emerged with hyper-arousal, which I likened to being 10 out of 10 on an ADHD scale! I could have written the description of the residual effects of BPPV that I found on the internet. I’m sure the stress of dealing with the vertigo on top of dealing with a large non-resolving hematoma following breast cancer surgery on top of repeat UTIs were significant contributing factors.
I had surgery in June to remove my hematoma and am recovering well. I finally feel like I’ve arrived back out into the sunshine after 5 years of medical H*** for my husband and me.
Know that “This too shall pass” and you will emerge a stronger person and able to help those going through something similar.
Take care and keep your chin up!
With love and prayers,
Linda Vardy
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Hello Linda – oh my, I’m picturing you “desperately clutching your vomit bag” – and no family or staff on hand to help you. I’m also picturing your shock at seeing those 4 or 5 empty stretchers that you could have been resting on. It’s like you’re describing a third world country’s failing healthcare system! I’ve come to realize that I can cope with one medical crisis at a time, but not what you describe (the stress of vertigo on top of the hematoma on top of the UTIs – how could we possibly juggle even one more crisis? The reality of hallway medicine (in Emergency as well as on hospital wards) is a sure sign of a failing system. One of my readers told me of seeing a nametag on one hospital staffer that simply read “Hallway Nurse”. Sick people should not be stacked end to end in hallways.
I’m glad you have survived all of those hours and days and years – and are ‘back out into the sunshine”. Thanks for your kind words of encouragement, Linda. Please take care. . . ❤️
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Feeling for you, praying for you, sad you are going through this.
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Thank you, Lorraine. .. ❤️
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How challenging! I am so sorry this is happening to you.
Once I went to an appointment at the Cardiovascular Clinic at the Mayo Clinic. I was very tired, having had a procedure that morning and fell asleep on the little couch in the exam room. They forgot me, and I was awakened after hours by the cleaning folks.
The doctor was called back in and was furious at me.
Ah well.
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Hi Dr. Anne – Your DOCTOR was furious at YOU!?!? I can only guess it was because that doctor had to go back to the hospital after hours?! No sense of humour, that one.
You know you have really and truly been forgotten when it’s the after-hours cleaners who find you… And all you wanted was a nice little nap after a tiring day. What a memorable story to share with us! Thanks for this 🙂
Take care. . . ❤️
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I have to say it was a one-off for the Mayo. I wrote him a gentle letter about our interaction and never heard back. He was let go by the next year because he could not adapt to the Mayo Clinic culture of “the needs of the patient come first”.
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I remember seeing signs throughout all of the Mayo campus buildings I visited: “THE NEEDS OF THE PATIENT COME FIRST!” Your doc must have forgotten that your need that day was to SLEEP! 🙂 I’m glad he was let go.
❤️
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Oh, Carolyn, I do feel for you enduring all these bouts of chemo. I’m so glad you were able to get a week’s break to try and recuperate a bit. It would have been nice if the oncologist had mentioned at the start that you could do that.
I have only been forgotten once in a hospital. Went in by ambulance with a kidney stone and was put in a side ward. Thinking a nurse would come along soon, I waited..and waited. An hour later I saw someone walk past and called out to them. They didn’t even know I was there!
And yes, we women are reluctant to “make a fuss”. I once asked for more pain relief (another stone) and the nurse replied “My, aren’t we the little madam!” So important to advocate for oneself, or have a buddy to advocate for you. Are there volunteers around the chemo area that could do that for you?
I think you have been so courageous so far. Thank you for sharing your journey with us, and I send hugs.
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Hello Sue – Yikes! waiting an hour with a kidney stone must have been SO painful! that comment from the nurse was rude and appalling, but sadly, not surprising. We know from cardiac research that women report pain symptoms more often than men do, but are significantly less likely to be offered appropriate pain management options compared to our male counterparts.
And in a landmark case study in which physicians were asked to review case studies to determine which patients arriving in Emergency with heart symptoms might require additional cardiac testing and which did not, the reports that included an obviously female patient name (Betty, Mary, Linda) were overwhelmingly interpreted as being psychological in origin, while reports with obviously male names (John, Bill, Fred) were more likely to be recommended for further cardiac testing.
I agree – it would have been SO nice to know that pausing or postponing a Chemo Day was even possible – I had no idea it was until I was completely desperate. In answer to your question about chemo volunteers – I’m not aware of any yet – although I’ve met other volunteers who are handing out crossword puzzles and adult colouring books to patients just to help them pass the time during hours of chemotherapy – not the same as having an actual advocate.
Our Cancer Centre does, however, have registered nurses on staff called Nurse Navigators who can answer patients’ questions about All Things Cancer-related to help newly diagnosed cancer patients learn more about what’s about to happen – a phone line that I’ve used a couple of times especially in the very early days when I had nothing but questions…
Take care. . . ❤️
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Dear Carolyn,
I am so upset to hear about this awful experience, both in hospital and also the side effects you’re experiencing.
Sending love and all good wishes that your window of tolerance widens again. If I wasn’t 4,000 miles away, I’d come with you to fight in your corner when you are unable to.
Kate xxx
“May we live like the lotus, at home in the muddy water”
Yoga with Kate – Yoga for health and wellbeing – teaching since 2004
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Oh Carolyn, my heart goes out to you. What an experience! And what a completely and utterly NORMAL response you had to the situation you found yourself in.
The good news: you’re not in a permanent state of hypoarousal. I admire the way you self-advocated; both at the hospital and when you said “enough already” to the oncologist. I’m so glad your oncologist gave you a break. That must have been a huge relief. Chemo is such a long slog. Is it almost over? Holding you in my thoughts.
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Hi Deborah – I think you’re right – my response (just lie there and don’t make a fuss) was in fact a “normal” response at that time. But from the minute I returned home after discharge, I was beating myself up for not having called (LOUDLY!) for a nurse after the first half hour!! I just didn’t have it in me….
Yes, thank goodness hypoarousal isn’t permanent, or I’d truly never get out of bed… Chemo is indeed a long slog: I have about 13 more 3-week chemotherapy cycles left, about a year’s worth. I was VERY relieved when my oncologist agreed with my request to take a ‘drug holiday’. The odd thing was that I honestly didn’t know until then that it’s not uncommon for patients to request this break – either postponing chemo appointments or reducing the drug dosage. I guess I was trusting that the doctor knows what’s best – as if it’s not a quality of life issue for me! I see my oncologist on the 8th, when I will ask him questions like “What are my other options?”
Thanks Deborah – take care.. . ❤️
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You would think pre-chemo the doctor might say something like…. “I’m prescribing the dose of chemo that will work the best in the shortest time…..If you ever feel it is too much to handle, talk to me and we can make adjustments…”
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Nope. Never heard those words. In fact, my first phonecall notifying me of my very first chemo appointment was from a cancer centre ward clerk (who I’m guessing had just been instructed to call this patient and tell her to arrive at the Chemo Room by 9 a.m. tomorrow -I’m also guessing they had a cancellation to fill).
But I already knew that I needed to have a blood test at the lab AND a meeting with my oncologist before each Chemo Day every 3 weeks (which is why they give patients 3-4 business days advance notice to book those appointments) – but I had neither, and basically zero advance notice. When I tried to explain this to the ward clerk on the phone, she yelled (YELLED!) at me: “DON’T SHOOT THE MESSENGER! DON’T SHOOT THE MESSENGER!” and then said sternly: “If you want chemo, you’ll be there tomorrow morning at 9!” before she hung up on me.
Thus my communication with the cancer staff began… 😦
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Dear Carolyn,
My heart goes out to you! Some days the ability to muster up the power to put one blistered foot in front of the other is more than a person can bear! I know you have family support but do you have any chemo/cancer buddies to talk to who have had or are going through the same issues?
In some situations, the best one can do is lie down in bed and repeat “And this too shall pass.”
Blessings and Love
Jill C
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Hello Jill – I’ve recently signed up for chair yoga (minimal standing or walking required!) at a local cancer support group. I learned a lot from the women with breast cancer in that group. The discussion about wigs (to wear or not to wear?) was interesting: one woman asked the group “Why do I have to be the one who spends hundreds of dollars on a wig (that I’ll only wear for a year or so until my hair grows back?) just so other people won’t be uncomfortable seeing my bald head?!” Good question!
I’m going to take your wise advice – have a wee lie-down and repeat “THIS TOO SHALL PASS!”
Thank you Jill – take care. . .❤️
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Carolyn, your writing so often gives voice to what many of us feel but can’t always articulate—especially that sense of numbness and withdrawal when it all becomes too much.
I’d never heard of the Window of Tolerance described like this before, but it resonates deeply. I have had this happen too – and the hardest was when I was going through a miscarriage in a cubicle surrounded by women in labour.
I’m so sorry you had to go through that experience at the hospital. It’s such a stark example of how easily patients can become invisible. Your honesty and clarity are a gift to so many.
Marie Ennis-O’Connor
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Hello Marie – it’s heartbreaking to imagine you surrounded by women in labour while you were suffering so much.
You’re very right – patients can often feel invisible. We’re just “the 10 o’clock ultrasound” – or, as I heard the Emergency Department staff refer to me during my heart attack, “the M.I. in Bed 8”. Like pieces of meat on a slab – except we’re invisible pieces of meat. The maddening thing about those scenarios is that it does not have to be this way! The simplest sense of common courtesy or basic empathy could eliminate even the most dismissive attitudes.
Thank you for your kind words, Marie. . . ❤️
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