True Friends

∼  If you want to know who your true friends are—the people who genuinely care about you—just get really, really sick. 

I have one former friend who is probably still puzzling over the demise of a relationship that spanned several years, surviving not a few misunderstandings and rough times.

But on my part, deciding to calling quits to the friendship was obvious: I was abandoned when seriously ill.

If you want to know who your true friends are—the people who genuinely care about you—just get really, really sick. Not a pleasant path to discovery, I admit, but one that is certain and true. The responses of your family members and friends will provide every clue to their genuine feelings for you.

Now, it’s easy to assume that family will help to provide your care: it is, after all, their responsibility. Spouses, especially, are supposed to look after one another; ditto, parents, their children, and children, their elderly parents.

Sadly, that doesn’t always happen–or, having happened, it is made all too clear to us that we are being cared for, not out of love, but obligation.

It’s really unpleasant being someone’s virtuous obligation. The “long-suffering-but-noble” stance and facial expressions of our carers, the occasional veiled but insensitive remark about things they could be doing, if only they didn’t have to look after us, the sighs and airs of self-sacrifice—even the slipshod methods employed to our care—yes, it would be almost better to struggle and risk harm to care for ourselves rather than be someone’s noble obligation.

Yet for those of us who are not natural malingerers, it’s almost as difficult experience to be cared for out of love. Most of us with dignity and conscience do not want to be a burden to others, taking up their scarce free time, making more work for those we love. Yes, there are those people who consider it their due to be looked after, even coddled—but those same people have probably spent most of their lives behaving in that manner, not just when they are ill or incapacitated.

But being cared for out of love, no matter how uncomfortable an affair for those who are independent and resourceful, provides a new perspective of relationships. And, heartbreakingly, a failure of care does, also.

When I was seriously ill, people whom I had not been in contact with for weeks, months, even years, seemingly flew out of the woodwork. They provided me with every service imaginable: meals, transportation, housework—even just sitting with me, mindlessly watching TV, when I was at my lowest point. Well over a year later, the warm glow of those acts of loving kindness lingers with me still. They reached out to me in my darkest hour, sending cards and letters and e-mails and texts. They put my name on prayer requests, and made certain I knew those prayers were being said. They made phone calls, or simply showed up on the doorstep. And, above all, they listened. They listened to my fears, spoken and, yes, unspoken, listening with their hearts as well as their ears. When I was at my lowest points, they walked with me through the valley of the shadow; they held my hands, figuratively and literally, through my dark night of the soul.

And others did not.

As I say, there is one former friend who is probably still puzzling over the demise of our years-long relationship.   When told that I had cancer, she assured me that she would include me in prayer at the next worship service. After that, although I kept her updated on my scheduled treatment plan and surgeries and the expectation of a lengthy recovery, I heard nothing: no cards, no phone calls, no texts, no e-mails, no letters. There were no visits, no casseroles, no assistance with housework during the dreary and long months of my illness.

As I always, naively, anticipate the best of people, especially friends, I was wounded. Most dismaying of all was the fact that, just a year earlier, I had been the person to provide her transportation to a minor outpatient surgery and wait with her through a long morning, drive her to pick up prescriptions and see her home afterward, bring her a get-well basket, call to check on her and send her one or two cheerful e-mails during her brief recovery.

I discovered, though, that I didn’t have time to waste worrying over her unexpected disappearing act during my serious illness. Having recovered myself, I became heavily involved with looking after another friend who had also become seriously ill. Giving the same service that I had been given was a way for me to repay the Universe for the kindness and care that had been shown to me.

Months later, my one-time friend suggested we might get together for dinner…so that I could meet her new boyfriend.

I declined.

Those Two Snakes…

Belittling encounters with medical professionals could probably spin out into a story as long as War and Peace. 

The symbol for the medical profession is the caduceus, featuring two snakes winding around a winged staff. And despite the many caring medical professionals I’ve encountered over the years, I sometimes fear that those snakes are uncannily accurate!

This struck me forcefully a few days ago when a friend called for advice on behalf of her sister. She wanted to know if I thought (as she did) that her sibling should make some type of complaint regarding the treatment she’d just received at the hands of a specialist, a pain management doctor to whom she’d been referred. All three of us were well aware that pain management is a tricky subject these days due to the opioid epidemic; even more so for a patient being treated for long-term depression and emotional issues, as the sister admittedly is. But she’d also been enduring untreated chronic pain for months, and had waited patiently for weeks to see the specialist…only to leave his office in tears, not one  whit closer to being out of pain, and having been demeaned, insulted, misinterpreted, and shunted aside.

I commiserated with my friend and we determined a course of action for her sister to take. But the event brought clearly to mind the many times I and others of my acquaintance had endured reprehensible behavior from someone in the medical profession.

cauduceusI vividly recall my shock and dismay when, years ago, having seen my doctor regarding symptoms suggestive of an underactive thyroid, I received his verdict. Although my thyroid activity was on the “low end” of normal, he explained, “What you really need is an aerobics course. Or a psychologist.”  Just as my friend’s sister had done, I left the medical office in tears. Ignoring the doctor’s assessment, I researched and found a natural solution to my problem: two herbs that I continue to take to take to this day, since whenever I neglect them my symptoms return. But I’ve thought about that doctor’s words many times in the intervening years, as I’ve participated in many forms of exercise and mental health counseling that did nothing for my “low normal” thyroid.

Then there was the anesthesiologist who treated me during a breast biopsy. To say that I was frightened the day of that surgery would be the understatement of the decade, and my way of handling emotional discomfort often is to joke. So when the anesthesiologist saw me prior to the procedure, asking about allergies, I said laughingly, “Mostly, I’m allergic to my whole planet of origin.” Her face darkened and her lips twisted into a snarl as she snapped out that she needed accurate information. Chastened, I quickly recounted my precise allergies. But conflict terrifies me, so I was still trembling as they wheeled me in for surgery

I’ve wondered since if that anesthesiologist trained alongside the tech who handled the anesthetic for my emergency c-section.  During that procedure, despite trying my best to remain still as the needle was inserted into my spine, I jumped slightly. The anesthesiologist smacked me across the upper arm and growled, “I said DON’T MOVE!”

Another friend recounted her miserable experience with a doctor whom she saw for knee problems. Although my friend never denies that she is overweight, she was shaken and humiliated when the specialist genuinely threw up his hands. Threw his hands into the air and declaimed that there was nothing he could do, owing to her weight. She continued her story of medical mistreatment, explaining to me that,  many years earlier, when she’d first begun to gain weight, she’d visited another specialist.  She’d described to him a breathing problem she was experiencing that was limiting her activity and contributing to her weight gain. Prior to developing this breathing problem, she explained, she’d weighed only 127 pounds.  Later, as she dressed following the examination, she overheard the doctor dictating his notes regarding her case: “Patient claims to have previously weighed 127 pounds. Frankly, I find that hard to believe.”

I could probably recount a dozen or more such unpleasant, degrading incidents, both mine and others. I feel certain almost everyone has such a story. Many are far worse than those I’ve already related here: the breast cancer patient who was slammed into the radiation therapy machine by an angry tech; the woman who was told of her 102°F temperature, “That isn’t a high fever!” Belittling encounters with medical professionals could probably spin out into a story as long as War and Peace. And still I recognize that there are always two sides to every coin: During my daughter’s long labor and eventual c-section, I was thoroughly impressed by the kindness and quality behavior of the two anesthesiologists who treated her pain.

Nevertheless, thinking over so many disagreeable experiences, both my own and those of others, I persist in believing there is a genuine reason for those two sidewinding snakes on the caduceus.

Growing a Spine

I am one who avoids conflict at all costs, sometimes—often–to my own detriment. Early experiences taught me that it was safest to be a pleaser; to be cautious, to maneuver or manipulate, rather than confront.  The direct approach is rarely my chosen route; I am ever a pacifist.  Consequently, it’s been an on-going challenge throughout my life to be able to tackle opponents head-on.  Instead, I often go in through the back door of confrontation by writing—letters, reviews, e-mails–rather than speaking my truth aloud.

For that reason, following surgery last winter, I refused to answer the automated Patient Experience phone call a few weeks later. I had a lot to say, but I was NOT going to spend 20 minutes pressing 10 for “Very Likely” or 1 for “Worst Experience EVER”, and receive perhaps two minutes at the end of the call to speak my piece.  Instead, I looked up the address for the Patient Experience division and wrote a letter—a real, true paper letter.  A long letter.  I provided detailed descriptions of both the good and bad aspects of my pre- and post-surgical experience.

It’s probably notable that a few weeks after sending my letter, I received a call from a genuine human being. The call from an unknown number went to voice mail, and I declined to return it; I had said all I wanted to say in my usual non-threatening manner.

But I am also very much of the “do as I say, not as I do” mindset. Just because I’m rarely willing to speak up for myself doesn’t mean that I don’t recognize when those around me are doing the same thing—again, to their own detriment.  This was never made more clear to me than once when, at a party, I listened a woman discussing the mother-in-law who had browbeaten her for years.

Mother-in-law lived out of town, and had made it her habit to simply call and announce when she would be arriving to stay for any length of time—a night, a weekend, a holiday, or longer, with no consideration for any plans already made by her son’s family. That was bad enough, her victim explained bitterly, but this high-handed woman’s expectations went much further.  She would demand that certain other people, relatives and friends, be invited for dinner or parties during her stay, and would even specify what was to be served at those functions (food for which the mother-in-law paid nothing, her long-suffering daughter-in-law noted).  When the gatherings were held, the mother-in-law failed to lift a finger either for preparation or cleanup.  In fact, during each of her stays she expected to be waited on hand and foot.

As this angry woman expounded ever more bitterly upon her mother-in-law’s outrageous behavior, it crossed my mind to wonder why, since his wife was so compliant, her husband never put his foot down to refuse his mother’s demands. However, it’s often that “like marries like”,  I realized, and the husband was probably just as docile as his subservient wife.

One would think the breaking point would have been reached when, as the victim explained, she’d just endured major surgery when mom-in-law announced her latest visit—a visit which was to include inviting the husband’s sister and all her family for a dinner party, as well as several outings. Apparently, at this point her submissive daughter-in-law finally protested, explaining that she needed bed rest for her recovery.  Her protests were dismissed as her mother-in-law declared that that getting up (and apparently working her fingers to the bone) was the best thing for her daughter-in-law’s recovery.

At this point in the woman’s narrative, I finally spoke up myself. “This is HIS mother, and your husband didn’t stand up for you while you were ill?!” I spluttered.  She merely shrugged with her hands splayed upward.  “Well, I would have told her to shove it in a sock and just stayed in bed!” I pronounced, was horrified when she said that “was impossible”.

As non-confrontational as I am, I could not comprehend this woman’s inability to grow a spine. I’d have suspected that she was exaggerating her situation, but later, after she’d left, others at the party—all of them just as mystified as I was about her passivity–confirmed her description of events.

Growing a spine is harder than hell. As I say, I go in the back door by writing, but at least I take some type of action to stand up for myself.  This woman’s submissiveness, and that of her husband, was totally incomprehensible to me.

I think about that woman’s story sometimes, especially when remembering my refusal to take the phone call after the hospital received my letter. I told myself that I’d said all I wanted to say, but was that really the truth? Or was my own spinal pliability the real reason?

Hmmmm. Maybe I’ll send “Patient Experience” a copy of a couple of my blogs from that time.

Our Daily Gifts

Until recently, I had experienced only one major surgery, having my gallbladder removed. Most gallbladder removal patients are sent home the same day, but because I was a single parent with only a minor daughter at home, I’d been kept in the hospital overnight.  That extra night made the whole matter of recuperating easier, for when I arrived home, I was already through the worst of the post-operative period for what is, these days, a fairly simple surgery.

So I was a little unprepared for my recovery from a far more complicated surgery, a complete hysterectomy due to uterine cancer.

As I mentioned in a prior post, I found myself essentially tossed out of the hospital only 20 hours after they wheeled me out of the operating room minus six organs—a cervix, a uterus, two fallopian tubes and two ovaries. I got to spend the most dreadful hours of the post-operative period in the “comfort” of my own home.  But even after overcoming the worst of the post-operative pain and bleeding and generalized misery, I was still unprepared for the series of  “firsts” that comprised complete recovery. I have new understanding now, and a much deeper respect for anyone recovering from major surgery, and especially for those who have undergone procedures a hundred times more serious than mine.

Life as I lived it was completely disrupted. I had to depend on others for the simplest things: food preparation, housework, errands–even medication reminders.  And, as a caretaker personality, such dependence did come not easily to me.

Consequently, everything—every simple daily activity–became a series of firsts. The first time I walked up my own stairwell, slept in my own bed, took a shower without someone standing guard. The first time I could do more with my hair than just run a brush through it. The first time I felt up to putting in my contacts, or dabbing on lip gloss and a swipe of mascara.

I literally celebrated the afternoon that I was able to wash my dishes, or the day I realized I could put down my cats’ food bowls by bending instead of carefully and slowly squatting. I was thrilled when I could finally make my own bed.  I exalted when I found myself able to get out of a gown and robe and into loose exercise pants—or when, after weeks, I was finally able to pull on jeans without too much discomfort from my sutures.  I texted everyone I knew when I was finally able to drive without pain. I had never, I exclaimed, realized how much simple pleasure was involved in just being able to run a quick errand to the bank or the grocery.

Finally given just a faint glimpse of what those with physical challenges—often mere children– must endure every day, I had a new appreciation of just how much of daily existence I had simply take for granted. Intellectually, I’d always known this, but living it was, I found, an alternate reality.  And, sadly, I also know that my memory of those challenging days will fade, leaving me with less and less awareness of and gratitude for the many things I do daily without really thinking.

As I age, though, those challenges will return. Just as I now remember, regretfully, when my muscle strength was such that I could rise from a sitting position without levering myself up, so the ability to run my own errands, clean my own house—care for myself—will (should I live long enough) eventually be lost.  Like the child I once was, like the recovering patient I have been, I will be dependent once more upon others to do these things for me.

I do not look forward to that time.   And so it is that I try to remember and appreciate each day—as I climb my stairwell; as I bathe and dress myself; as I prepare my dinner—the infinitesimal and yet vast gifts that I am bequeathed, moment by moment, and movement by movement.

A Candle in the Darkness

A few days before I was to have surgery, a close friend asked me to confirm the time that my operation would be starting. She would, she explained, be lighting a candle for me at that moment, and sending me her prayers and love.

I’ve always found that the most terrible moment of any surgery is that short, frightening journey as one is wheeled down corridors into the operating room.   The unutterable sense of loneliness cannot be described to anyone who has not had this experience.  I liken it to the final journey of death.  Friends and family in the pre-op room have hugged and kissed one goodbye, and then one is completely alone, facing an unknown.  No matter how simple the surgery, everyone experiences that nagging dread that they might not awaken from the anesthetic.  Everyone wonders if hands, feet, arms, legs, fingers, toes, will all function afterwards, or be forever paralyzed.  Everyone is aware that sometimes, in surgery, things go wrong.

Only once, as I was being taken to surgery, did the orderly pushing the gurney seek to lighten my sense of trepidation. Had I ever had surgery before, she asked, and when I answered in the affirmative, she patted my shoulder and said, “But it’s always a little scary, isn’t it?”  There are no words to describe how comforting I found her empathetic remark.

Being wheeled to this most recent surgery, I received no such comforting question or concern. I was taken a short distance to the operating room and helped onto the table.  In a surgery just two months prior, a nurse had introduced me quickly to everyone in the operating room, giving me their first names and their function in the surgery, leaving me to wonder fearfully if there would be a quiz afterwards!  This time, however, there was only the quick press of the oxygen mask over my face and the staccato instructions of the anesthesiologist to, “Breathe!  Breathe deeply!”  (Of course, since I am horribly claustrophobic, just having the darned mask pressed onto my face made me do nothing but instinctively hold my breath in complete terror, followed by the rapid-fire, quick, short breaths of a full-blown panic attack.  Perhaps this is a reaction for which anesthesiologists should be schooled in their method of approach.)

But, despite my claustrophobia, my lonely distress and anxiety, the image of my friend’s candle, burning brightly for me, shone in my consciousness. I found myself focusing on it during that brief journey to the operating room.  The image calmed me, reassuring me that I was not truly alone; that the prayers and concern of others were surrounding me.  A memory swam up into my consciousness, a poem I had written years earlier, and I found myself reciting the lines like a mantra as I was carried into the coma-like sleep of anesthesia:

Just a light left burning for me
in my window of darkest pain;
just safe harbor, refuge, retreat
sheltered sanctuary from rain.

Just a kind hand, steadying me
when I stumble a rocky path;
just a heart’s strong, balancing beat
when I settle my face at last

to the shoulder, stable and sure
of a long-cherished friend who shares
light embrace, encircling me
in the knowledge that one soul cares.

Weeks afterwards, my friend told me that the candle she lit had burned throughout my three-hour operation (which had, of course, begun later than actually scheduled). Despite guttering a few times, the candle had continued burning until a call from the phone tree assured her that I was out of surgery and doing well.

But, in my mind, that candle is still burning, guiding me through the darkness, lighting my path with the beacon of caring and friendship.

Twenty Hours After Surgery….

Following currently acceptable medical practice, after a serious surgery I was tossed out of the hospital just twenty hours after being wheeled out of the operating room. This was what I got for being a cooperative patient. (And to that, let me just say: Never Again.)

Overjoyed for a reason to have the catheter removed, I’d gotten up to walk the corridors with the nurse’s help, willingly choosing the “long route”, pushing my IV beside me, just twelve hours after the operation. Pleased to have the IV taken out of my aching hand, I’d cooperatively  slogged down water like the beverage was the latest trendy invention.  I trotted myself to the restroom multiple times (to the horror of the night tech, who hadn’t explained that I wasn’t permitted to do this on my own, without accompaniment).  I ate a small dinner and a big breakfast.  Everything that I was asked to do by the hospital staff, I did, in fact, do.  And my reward for this was to “get” to go home, pain prescription in hand, the following day, to endure possibly the worst night of my life. Undermedicated for pain; unable to walk up the stairwell to sleep in my own bed; barely able to rise from my couch to stumble to the bathroom, I felt as if every inch of my body had been beaten with baseball bats.

Let there be no mistake: hospitals are not fun places. IV alarms ring constantly.  Just when one has fallen into a sound sleep at last, in wheels the night tech, waking the patient to check vitals or administer a dose of some med or another.  People laugh, talk, argue and rush in corridors.  Noisy carts are pushed through halls.  Janitorial staff pop by to empty trashcans.  The sounds of people crying—or crying out in pain—filter through the walls.  One is poked, prodded, examined and stuck with needles.  Tape is pulled from sensitive parts of the body, leaving behind welts and rashes.  Responding to other, more urgent emergencies, no one answers the call bell.

But there are also advantages to lying in that hospital bed, not the least of which is the bed itself, which is adjustable and can be arranged into the best position for the comfort of the individual occupying it or trying to clamber in and out of it. Toilets are only a few steps away—not up a staircase or across the house—and showers are the walk-in variety.  Pain medications can be given by injection or IV, without waiting for the oral med to finally dissolve and work its way into the bloodstream.  But, most important of all, is the opportunity to ask someone knowledgeable, “Is this normal?  Should I be experiencing this?  Will this last?  Has something gone wrong?”

But, as mentioned, the cooperative patient is launched homeward as quickly as possible, to a place where there are no adjustable beds, where bathrooms are a long walk away and the only shower or bed may be up a flight of steps, where pain medications are oral, and where relatives and friends who’ve come to help are just as clueless as the patient. Preparing to leave the hospital that morning, I could not help but laugh when, as I fumbled to button my blouse, the nurse asked, “Do you have help at home?”  I am a divorced woman; I’ve lived alone for years. I wondered for a moment what she would have done had I answered, “No.”

Fortunately for me, family and friends stepped up to the plate, so that for the first two days and nights following surgery I was never left alone for a minute. I ignored the post-operative paperwork which stated that I was not to climb stairs for two weeks after my surgery and clambered, slowly and laboriously, up the stairwell to my shower on just my second day home.  That would certainly have been easier had I still been hospitalized, but the question, “Do you have a ground-floor bathroom?” was definitely never broached.

I suspect now that those unasked or belatedly asked questions were intentional. Negative answers would have meant red tape—a battle with the insurance company to cover another day, or even two, to ensure a safe recovery.  Medical staff are weary of the fight, and so cave to reality rather than the responsibility of protecting patients’ post-surgical health. Out of sight, out of mind, and the well-meant lie is uttered, “You’ll be more comfortable in your own home”.

There may be no place like home, but for the recovering patient, that just isn’t quite true. But the insurance companies and the almighty dollar, rather than common sense and medical safety, rule recovery in the modern health environment.