Not Just For Halloween Any Longer

 

Just Because (Baby Emus)

 

It's Intentional

 

Put Down That Stick

 

Whatever You're Doing Today...

 

Pet Names: Standardized Patient Care…or Just Insulting?

 

When I was five, my family nicknamed me “Lutefisk.” They got great joy out of seeing how much the name annoyed me. For those of you unfamiliar, Lutefisk is a popular Scandinavian food; it is white fish soaked in lye. (I am not kidding).

Those of us hailing from places like Minnesota and Iowa, who boast either Norwegian or Swedish descent, often serve this fish as the main dish during many Christmas and New Year’s celebrations. And, as a child, encouraged by my relatives to “try it,” I hated it. To me, it tasted like the slimiest, fishiest fish, soaked in detergent. Soap was a distinctive flavor, no matter how much hot butter you tried to add to it. No thank you.

Anyway, having been christened after this white fish soaked in lye, enduring family gatherings as a tiny tot, I gradually gained some feistiness in the attitude department. And that led to one of my first memories, one of me being quite vocal and confrontational.

On a shopping trip with my mother, we encountered a “family friend” who greeted me in the following manner:

“Hi there, Toots!”

I never met this man before. I was, however, all fed up with being called a fish by the people I, supposedly, did know. I had had it! I retorted, with as much five-year-old indignation as I could muster…

“Oh yeah, well how’d you like it if I called you Lutefisk!”

I remember the awkward shock, the uncomfortable laughter and the looks on both my mother’s and this guy’s faces. Clearly, my clapback created a moment.

It wasn’t long after that my family stopped called me Lutefisk. Maybe word finally got out.

Anyway, this memory has gotten a lot of replay for me lately as I have been in doctor’s offices and assorted appointments since my 2017 Breast cancer diagnosis. It has been within this context that I found myself not that far removed from five-year-old me. You see, as I have undergone tests, treatments and now, “survivorship” checkups, I have repeatedly run into complete strangers calling me by pet names.

“Honey”

“Hon”

“Sweetie”

“Sweetie Pie”

“Baby”

“Baby Doll”

“Darling”

“Dear”

Everything but my actual given name, even though that’s the first question I answer at the beginning of an appointment, test or procedure: name and date of birth. No pet names exist within either of those pieces of data.

Yes, within two minutes, I, inevitably, get called a term of endearment, usually, “Honey” or “Dear.”

I have nothing against pet names if there is an endearment present in a relationship, say, older than five minutes. My husband usually calls me “Honey” or “Baby;” I do, likewise, with him. But we’ve been together for well over twenty years. And, with my good girlfriends, I admit, I’ll also drop a “Honey” or “Sweetie” their way.

Why is this name calling a-happening? Because there is love and a relationship there, not name, rank and serial number kind of stuff. But, if there is a patient number or code attached to me in a clinical setting, maybe we can agree there’s not automatic love and long-term relationships going on here, huh?

It’s just something that has gotten me a little cranky. And yes, I know, I can hear the murmurings already. It’s harmless being called a pet name by an ultrasound tech, doctor or even a receptionist just checking you and I into a medical appointment. It can be argued, I suppose, that this medical professional simply wants to make the patient feel more comfortable, relaxed and cared for.

I admit I am a fussy patient. So being called “Honey,” “Sweetie,” or “Baby Doll” does none of those things for me. Especially if I hear those pet names falling from the lips of someone I could have once babysat. Yes, not just motherly women in their fifties and sixties are addressing me this way, I get twenty-somethings, with freshly scrubbed faces, calling me this stuff also. Male and female, by the way, as well.

That is especially patronizing. I have encountered a male medical professional, especially someone meeting my “once- could- have- babysat- you” criteria, calling me by a name I reserve for my loving hubby. When not irritated by this fact, I sometimes envision this same male medical practitioner calling me “Sweetie” in the presence of my tall, dark and handsome (and intimidating-looking) husband. I note, these male doctors and techs never do such a thing within his earshot. Coincidence?

Regardless, at the end of the day, I’m still the one who is hearing the pet name applied to my person. Even though they have, in black and white, in the computer system, my vital statistics, including my name. My name is Sheryle Cruse. I will gladly spell it again for you if that makes things crystal clear.

I’m not “Honey.” I’m not “Dear.” I’m not “Sweetie.” And I am certainly not “Baby Doll.”

Ruminating about this madness in many a waiting room, I’m reminded of a list of negative reasons for name calling and bullying I encountered years ago. I know there’s not the malevolent intent to bully or harm a patient here. Like many of the irritating and harmful things within our society, it, unfortunately, has more to do with the insidious, underground attitudes which seep into a person’s assessment of an individual, especially, if, yes, that individual is female.

According to this bully/name calling list, some of the reasons for the behavior point to the following…

To cover up mistakes…

To disarm…

To distract or divert attention…

To manipulate into compliance…

Huh. Interesting.

Again, it’s not some maniacal villain cackling and wringing his/her hands with plans for dastardly deeds. But there is a reason, perhaps, an infantilizing reason, why you and I may be called “Honey” and “Sweetie” at our next medical appointment. It’s assumed, however wrongly, perhaps, that this is a part of standardized patient care. We are reduced to pet names, ignoring our very real and documented given names.

Again, if I know you and love you, pet names are generally welcome, except for Lutefisk, of course.

Everyone else out there, especially those who tout themselves as “professionals?” You don’t have the privilege of calling me anything other than my given name. To do otherwise is assumption and it’s insulting.

Call me by an unwelcomed pet name and you may hear me respond with, “Thanks, Lutefisk.”

You have been warned now.

Copyright © 2020 by Sheryle Cruse

 

You are Enough

 

Learn To Say...

 

Jabez Prayer or Bust!

 

Scripture is still a part of my life and faith. I’ve branched out. I’ve learned about some different philosophies and practices. Yet, I admit, post- cancer diagnosis, The Jabez Prayer still influences me.

This prayer swept the Christian publishing world years ago. Workbooks and seminars were created to explore its attributes.

For those unfamiliar with the scripture, it’s a tiny little marvel, lost in what is not exactly the most exciting book of the Bible: 1 Chronicles 4, documenting Judah and Israel’s history. The little ditty goes like this…

“Now Jabez was more honorable than his brothers. His mother had named him ‘Jabez,’ saying, ‘Because I bore him in pain.’ And Jabez called on the God of Israel, saying, ‘Oh that thou would bless me indeed, and enlarge my territory, and that thine hand might be with me, and that thou would keep me from evil, that I may not cause pain!’ And God granted him that which he requested.

1 Chronicles 4:9-10

Now, before I’ve completely lost you in this Bible-y context, let’s just stop briefly and examine this prayer’s bullet points, in a more human framework.

Indeed, post- cancer diagnosis, I started viewing the prayer through this imperfect lens. It has become even more personal and, dare I say it, relevant.

Let’s break it down a little.

“Now Jabez was more honorable than his brothers. His mother had named him ‘Jabez,’ saying, ‘Because I bore him in pain...’

Okay, so we’re off to a fantastic start.

Names tell us a lot about a person. And it’s not confidence-instilling to be presented to the world as “Pain.”

We need to tackle first the ugliness of our origin story, even if/when pain is its central character. Breast cancer shoved me headlong into the reality of my past. I could no longer avoid it, especially as now, this dreaded diagnosis embodied fulfilled pain for me. No more dancing around it.

…And Jabez called on the God of Israel, saying, ‘Oh that thou would bless me indeed, and enlarge my territory…

We need to call for help. There’s no passivity when it comes to crisis moments.
And, underscoring that, we need to decide, what do we want? To be blessed or not? It’s not such an easy question to answer. How many of us self-sabotage? How many of us are sadistic with ourselves? How many of us think that we deserve pain and curses?

Yeah.

This part of the prayer not only calls a deeper 911, it confronts who we are and how we live.

Years ago, when I first encountered the Jabez Prayer, I saw it as the “gimme gimme” loophole to beg the Divine for my goodies. And those goodies included an enlarged territory of acceptance and acclaim.

But now, post-diagnosis, I see it differently. It’s about loving and accepting my own self-terrain. For as much external love, praise and applause out there, it means nothing if I cannot experience it within myself. I need to become more adept at self-love, self-compassion and yes, the infamous word, self-esteem.

I need HELP enlarging that territory indeed! How about you? Can you say the same?

…and that thine hand might be with me…

My past experiences taught me there was a malevolent force, not a loving one, ushering me into life circumstances and dictating outcomes. How many of us only see a wrathful God?

Part of my healing now, post-diagnosis, is to allow for good to guide me. Again, it all sounds so simple. But this is hard work. It involves trust in something beyond the finite human self. That is scary. It’s not about being naïve or stupid. It’s not about forsaking our own sense of responsibility for our choices. It’s about allowing for more. More can exist, without giving detailed explanations or soothing reassurances. A first step to experiencing the benefits of that “more presence…” is to ASK for it.

…and that thou would keep me from evil…

Further piggybacking that sentiment, we can make the choice to ask to be protected. We can make this request of ourselves. We don’t need to be subjected to harm.
We can make another choice. And part of making that different choice is that we allow protection from our own malevolent intentions and actions. We can be our own worst enemies. The cliché is true.

What are we willing to do with that?

 …that I may not cause pain!’…

Accurate self-assessment and personal responsibility are central themes to this part of the prayer. Again, many of us can often have distorted definitions of what constitutes “our fault,” versus what we should be accountable for. It’s tricky.

But we do have an inner knowing about right and wrong. It goes beyond religion. You and I know when we have crossed a line. With that knowing, however, human beings are far too adept at creating pain. No matter how nice or loving or sweet we claim to be, that reality humbles us.

Perhaps, for everyone and everything we have the potential to help and heal, we also have the potential to harm. Therefore, we need an accurate assessment of ourselves, even while we pray any altruistic or desperate prayer. We have not transcended being imperfect and all the wreckage that can come with that state of human being. But we are not responsible for every evil, either. We’re in the murky middle.

…And God granted him that which he requested.”

Here is probably the most concentrated “Bible-y” point of the Jabez Prayer: God. Lightning rod. Controversial statement. Conjectures, debates, maybe even bar fights abound because of this point.

“I don’t believe in God.”

“This isn’t the ‘right” or the ‘true’ God.” 

“There’s no such thing as God.”

“It’s all just a con job.”

I still adhere to the tenets of my Christian faith. But I concur with yet another scripture that that’s states how I see through this spiritual looking glass darkly, at best (1 Corinthians 13:12).

No one has the exacting answers. And here is where the “F-Word” usually gets trotted out: Faith.

Faith is an infuriating concept, because, after all, I want to KNOW!!! I WANT ANSWERS!!! I demand to speak to the cosmic manager already!

But all that I’m left with is getting “Ma’am-ed” to Kingdom Come.

Faith declares that we don’t know for certain. How very dissatisfying! Still our spirit, soul, inner being, instinct, aura yearn and reach for something beyond finite, tangible answers. There has to be something to that, right?

My cancer diagnosis has got me reaching. And yet, even, slamming down my “Cancer Card” hard doesn’t qualify me for all answers, all certainty.

But it is possible that I am being granted all that I seek, in-process, right now. In messy, imperfect, frustrating process, I am my own interpretation of Jabez. A well-known scripture, cited ad nauseum, admonishes us to “ask, seek, knock.”

Isn’t that we are doing, somehow, someway? Even in the most content and complacent of us, we still want something more?

Jabez is about wanting more. It’s not greed. It’s human need, the essence and the dignity of humanity. We don’t need to apologize for or be ashamed of that.

I apply the prayer, in earnest.

I await and engage in the results from- and because of-it.

Copyright © 2020 by Sheryle Cruse

 

 

 

Gaslighting’s Laughter

Gaslighting has become a trendy buzzword lately. It’s used to describe the crazymaking tactics often employed within an abusive dynamic.

Indeed, Wikipedia offers its own definition…

“Gaslighting is a form of psychological manipulation in which a person seeks to sow seeds of doubt in a targeted individual or in members of a targeted group, making them question their own memory, perception, and sanity. Using persistent denial, misdirection, contradiction, and lying, gaslighting involves attempts to destabilize the victim and delegitimize the victim's belief.”

It's about creating a nagging self-doubt, in which we question what we see, hear, believe and feel. Some common phrases?

“You’re crazy. You’ve lost your mind.”

“What’s wrong with you?

“Why are you so sensitive? This is no big deal.”

“You’re imagining things.”

In my personal experience, I encountered those uttered words. But I also ran into another tactic: laughter.

I’m not talking about jovial laughter, good- natured stuff.

Instead, often in tandem with these pointed phrases, I ran into dismissive, mocking laughter, utilized to deflect from real, serious issues and situations.

One family member, uncomfortable with their own angst concerning the abuse existing with our family structure, used laughter as deflection, to minimize how dangerous things were and how much behaviors needed to change.

Once, as an adolescent in pain, responding to the abuse, I bared my soul, sharing how I was experiencing suicidal thoughts. Within seconds of disclosing that revelation, this person started laughing at me, telling me I was silly. Chuckles bubbled up as I was labeled as being a” too-intense” teenager.

I felt betrayed. But even more of a betrayal?

Well, I’m sure you’ve heard how laughter can be contagious. If fact, there are actual laughing groups, sharing a human experience of contagious laughter as stress relief and bonding.

Think of that contagious reality and now visualize me, this upset teen, being laughed at over my suicidal thoughts. Soon, that contagious laughter spread to me.

I was laughing, and it betrayed my very truth. I had betrayed myself because I had succumbed to the dismissive laughter, offered by an individual whose sole agenda was to stop dealing with the seriousness of the discussed subject matter. As I laughed, as I betrayed myself, it was mission accomplished.

The message was further strengthened to both this family member and to me alike: the pain I was experiencing was silly and unimportant. I shouldn’t take my feelings seriously.

For years, I had numerous experiences with me being upset, and then, ultimately, joining in the betraying, contagious laughter.

But this suicidal discussion was the final straw.

I learned, at the tender age of thirteen, I was no longer safe discussing anything important with this person. Moreover, I learned another harmful lesson: people, in general, were unsafe. I could not risk vulnerability, for fear of being laughed at…or worse.

I also learned distrust of my feelings. Was my pain really that bad? That real? That important? After all, it was so easily “laughed off,” even by me?

What could- should- I believe about that?

Laughter, in and of itself, is not evil or wrong. We’ve all had those moments with loved ones, in which we burst out laughing, even at inopportune times, like a funeral. It’s spontaneous. The more you try to suppress the giggles, the more explosive it gets. We have a hard time controlling our laughter. We have all had that.

That, however, is a stark difference to the laughter of gaslighting.

Within that context, there is no spontaneity, no loving, “in the moment” experience of being collectively human, having a human, if not ridiculous and free, moment.

No, gaslighting’s laughter is all about agenda. What is it?

Some purposeful device to try to…

… Stop an uncomfortable conversation…

… Make someone question the validity of their pain and upset…

… Redirect focus to something or someone else…

… “Make” a problem go away.

The laughter of gaslighting is never about resolving an issue; it seeks to negate it, to manipulate it.

So, do you see your experiences here? Have you ever encountered laughter, that may have appeared innocent and jolly, but still, never felt quite right?

Have you felt the laughter was at your expense?

Have you felt it was a diversionary tactic to avoid dealing with an important issue?

Not all laughter is equal. Some of it is sinister.

And yes, some of it IS abuse.

If an episode of laughter makes you feel unheard, unseen, violated or manipulated, it’s probably because it is aimed at doing just that.

Trust your gut.

Laughter is supposed to make us feel better, not worse.

Copyright © 2020 by Sheryle Cruse

 

Cancer Care…Plus Cats

Animals bond with us. Breast cancer-and our cats, Gracie and Glory- have personally shown me that.

Glory is a traditional Calico, possessing the white, black and orange, tri-colored coat. Personality-wise, she is Joan Jett in demeanor. Get the picture?

Gracie is known as a “Diluted Calico.” To use fashion terms, if Glory is color blocking, then Gracie is pastels. Her grey/lavender fur has swirls of peach highlights blended in. Temperament-wise, Gracie is friendlier. Playful.

Upon my diagnosis, Glory, became increasingly more withdrawn.

Gracie, however, glommed onto me. After I had my bilateral mastectomy, she constantly “pinned” me. She first targeted my bandaged chest, an off-limits area. Sequestered to the couch, I’d redirect her to my legs.

Eventually, the two of us “negotiated” her place there. She’d do a few clockwise turns, adjusting her comfy nook, purring. She’d pin me all night.

This continued with my course of radiation. During my 30-day treatment, I’d rest until each appointment. Gracie sat on my legs, making sure I stayed put. When I left for my treatment, she became despondent. I often heard her crying three flights down as I left our flat.

Her behavior was concerning; I called our veterinarian. She only stated, “she wants to protect you.”

I asked my radiation nurse about Gracie; she told me I was emitting a stress hormone.

I didn’t know what to do. I cuddled with her and gave her extra treats. She still constantly monitored me.

Unfortunately, months later, Gracie started vomiting grey liquid and was lethargic. After numerous vet visits, a regimen of antibiotics, steroids and painkillers commenced. She was struggling. She woke me up, screaming, with wild eyes, desperate for relief. She kept me up all night, night after night. It was agony. She wasn’t getting better, despite efforts, medicine, prayers.

No, not now. But there is never a good time to lose someone you love.

On one painful morning, she passed away.

Losing Gracie was worse than losing my breasts.

Grieving her has been transition for us, especially with Glory. Again, she’s Joan Jett, not a cuddle baby. But cuddling and pinning me is now what she’s doing.

She commandeers my lap, often sitting on me while I write, with her head draped over my left arm. This is the same cat, who, during her checkups, has drawn blood.

Her cuddlier moments are unhinging. Why is she doing this? Just self-interested, feline behavior…  or is it something else? Does she “love” me?

Glory teaches me about self-care, as I’m in “cancer survivorship.” I am to be ferocious. I am to swipe claws if I need to. I’m to take care of myself with no apologies.

Indeed, our connection with animals has its benefits: comfort, support, companionship. But I also believe there is purpose to each of us, pets included, confounding explanation.

As I make my way through this cancer experience, Gracie and Glory are, indeed, those confounding- and wonderful- beings.

Copyright © 2020 by Sheryle Cruse

 

Handling My Inner Yosemite Sam

Cancer, enmeshment and caregiving have introduced me to such terms as, “vulnerable adult,” “self-care,” and “Grey Rock.” They are daily parts of my life now.

I can soldier on with the best of them. But, inevitably, there reaches such a point, that I, well… you know the cartoon character, Yosemite Sam?

Yeah, it’s like that.

I devolve into him, maybe with steam escaping my ear holes.

Indeed, Mom and I have an enmeshed, mother-daughter relationship. I truly am astounded I haven’t committed a felony (yet).

Coming from both verbal and emotional abuse from my dad, my mother and I were traumatized, trauma bonded, from the start. 

Within that dynamic, my mother was in denial. “At least he doesn’t hit us” and “He’s a good provider” were her responses when I challenged things as a child.

Mom, to keep life running smoothly, often employed the technique of gaslighting to protect the status quo.

“No, you didn’t see that. No, it’s not that bad.”

And I believed her instead of believing my child’s intuition.

But I saw the hypocrisy. Therefore, my inner Yosemite Sam arose. I was rageful, with no safe place to put it.

By adolescence, I descended into the full-on flareup of my disordered eating issues, via Anorexia and Bulimia.

As much as Mom downplayed my dad’s abuse, she also refused to accept her own dysfunction as well. She was depressed. Of course, she never got help for that depression.

And she further nullified mine. She dismissed and criticized me.

Life moved on. I finally went to some solid therapy at the age of twenty-seven.

My inner Yosemite Sam intensely processed a large amount of the abuse, neglect and rage in the 2006 book I wrote about my experiences. By the time it was published, my dad had died. I was safe from his fury.

But, my mother…

Again, Mom, anti-therapy, never sought help. She couldn’t because she would not access her own dark, painful emotions and experiences. She still operates in denial and shame.

This has continued, in more recent years, with devastating consequences.

As my mother aged, I pleaded for her to take care of herself. Morbidly obese for decades, she was adamant about downplaying her reality.

And that led to her 2009 stroke. Since then, she resides in a care facility.

Of course, mother-daughter enmeshment issues are is still quite evident. I have done my best to be as non-reactive as possible. And I didn’t know it then, but I was already practicing Grey Rock, a technique used within the context of Narcissistic abuse. The goal is to be as boring as possible, just like… a grey rock.

I am her health care agent. Typically, I deal with her needs and issues, speaking with the care facility’s social worker, dietician and nurse case manager. And, typically, Mom mocks me.

Years of this.

I thought I could go on like this indefinitely. Mom’s elderly. I’m her only child. We have precious time left. I love her. I can tough it out.

Not so fast.

For in 2017, I received my Breast cancer diagnosis. But even then, it took a while for me to see things clearly. A year after my diagnosis, I discovered that my sweet, vulnerable adult of a mother was, more than likely, a Covert Narcissist.

That was a fun day.

Because of my abusive childhood and her abusive marriage, my mother had no voice.

And, I believe that, in the middle of those stifling circumstances, Mom made her choice. Her refusal to see how bad it was, her desire to be taken care of, to be viewed as a “nice woman,” and to have affirmation any way she could get it, all led her to be covert about obtaining and executing power and control, via me, the powerless child.

(I know, this is not an objective stance).

But my mother is passive-aggressive. She doesn’t directly voice what she wants. She undermines. She comments. She asks a question, instilling doubt and guilt.

But she does it all sweetly. She’s “nice” about it.

She did this even after my cancer diagnosis. She just couldn’t-or wouldn’t- get that I was preoccupied with treatment and healing, not orbiting around her.

And that’s what she wanted. Me orbiting her until she dies.

Only now, there was a possibility I could die before her.

My attempts to reason with her led to one critical exchange, exposing her victim mentality. She told me that I disappointed her, even though what I was doing was recovering from my cancer experiences.

To her, that was unacceptable.

Something had to change. I had to change.

I had to fight for my life.

Therefore, the “Grey Rock” technique would hold my psyche together and keep Yosemite Sam at bay. It’s not a perfect method, but it helps me, nonetheless.

I needed some go-to phrases in response to her. Staples like...

“I’m sorry you feel that way.”

This remark plainly communicates I have heard and am responding, but she is not getting any further past the protective barrier.

Boundaries. “Do not cross.”

Sometimes, she insists on mocking me. Sometimes, she is quiet. In any case, I am resolute. I’m taking care of myself. Simple.

“That’s interesting.”

I use this response whenever Mom insists that I make lifestyle choices that would move me geographically closer to her. Perhaps, now, she posits that because of “the cancer,” the only logical option for me is to move into her care facility, residing right next door.

Or better yet, bunk beds in her room! My husband could assemble a cot nearby for himself, I guess.

So, “That’s interesting.” I give no other spirited Yosemite Sam feedback. Now, I do my best to “observe, not absorb” what is being said to me. Her comments are faulty, anyway.

“I’m hanging in there.”

I say this whenever she asks me how I am doing.

At first, she didn’t know what to say to that. Sometimes, she comes back with the question, “What does that mean?” and I retort with, “Just that, Mom. I’m hanging in there.” Sometimes, she laughs at me.

It probably frustrates her, sure. But that’s because she’s not getting “the intel” she desires: the attention/sympathy from her care facility, which she can use against me later.

Early in my diagnosis, I did try to inform her, with as little gore and fear as possible. She just didn’t want to hear anything other than “I’m back to normal and I’ll soon be focusing on you again.”

But energy is finite now; I need to be mercenary, even with this seemingly, sweet, meek, old woman. Mom’s still “covert.” Sneaky. Agenda-filled.

She has not- and will not- change. Therefore, I need to.

It’s surface chit-chat, a surface relationship. I grieve and resign myself to that. Sometimes, we don’t get what we need from the important loved ones in our lives.

But I am worth being in a healing, peaceful place. Change concerning Mom is helping get me there. I’m still her caregiver, but I do things concerning her more at a distance. I employ the speaker phone concerning her care conferences. I see her, but now, it’s less frequently.  I tend to her needs as best as I can…mostly, from afar. And that must be enough.

I love my mother. But needs and relationships must change. I’m aware of that now.

Do you see yourself here?

Are you a diagnosed caregiver, embattled with a vulnerable adult who is toxic to your condition?

There’s so much emphasis on the designated “vulnerable” person. We, as caregivers, can often get lost in the shuffle. It’s just assumed that we’ll be bulletproof indefinitely. Don’t worry about us. We can take it.

Only, sometimes, we can’t take it.

Sometimes, we are the adults that need to choose self over duty. And that is what caregiving is, isn’t it?

Loving, mixed emotion, challenging duty, but duty, all the same.

Dysfunction, abuse, codependency, aging and any myriad of health or personal issues don’t resolve themselves, by themselves. All of this requires our action. Yosemite Sam can be our alarm, alerting us to danger, informing us of our need to change. But WE must make that change.

It’s not selfish; it’s self-care.

It can be a matter of life and death. And you and I, no matter what, deserve life.

Therefore, care-give yourself!

Copyright © 2020 by Sheryle Cruse

 

Brighter Days are Coming

 

Navigating with the Navigator

Joy*, my breast nurse navigator, has kept me sane (well, as close to it as possible) ever since my 2017 Breast cancer diagnosis.

She was the one who did all three of my biopsies and made that dreaded cancer phone call one Tuesday morning. And, since then, Joy has walked me through the overwhelming gauntlet of tests, appointments, surgery, radiation and “survivorship.”

She did this all while being a girlfriend. I’d like you to know about her heart and her impact in my life.   

First, after my biopsies, I asked her for a copy of my MRI. I wanted a still image of my breasts and I asked if she could rustle one up for me. I knew this request was a little out of the ordinary. Doing biopsy stuff, getting me test results, sure. But this?

“Hi, Joy-

….Is it possible to get a copy of my long boobed MRI scan you showed me on Friday? There is method to my madness- this year's Christmas card.😜...”

 “Hi Sheryle!
You can absolutely get your imaging for future purposes-whatever those may be! I will have a CD made... The Christmas card idea truly made me laugh out loud. What better way to spread Christmas cheer than a glossy breast MRI photo? Ha!…”

But we’re not done yet.

 “Hi Sheryle,

…The lady who works in the CD and medical records assured me that images can be printed from the CD’s, but the file size of an MRI is extremely large (read: might crash the average computer). So, I went ahead and did a screen-shot of what I consider the ‘money shot’...” 
The money shot!

Yes, Joy was going to great lengths for me.

So, I wondered, how did that all start?

She began, in high school, as a home health aide for disabled children. Her official nursing career later started in pediatrics, at a children’s hospital. But, because of the taxing reality of its heart-wrenching pediatric patients, she applied for the navigator position she has now and voilà! 

So, what is a breast nurse navigator, anyway? We can posit, it’s the ultimate connector and guide through one’s diagnosed paces.

 “… The nation's first patient navigation program was initiated by Harold Freeman in 1990 at a public hospital in Harlem, New York… The philosophy of patient navigation encourages a system of health care delivery, which supports timely movement of the individual patient through an often complex and fragmented health care system...”

“The Origin, Evolution, and Principles of Patient Navigation” By Harold P. Freeman; http://cebp.aacrjournals.org/content/21/10/1614

Used with permission.

Joy is, indeed, passionate about her work. Her enthusiasm for it is infectious.

She told me how she loved being there for women at this most scary time. She makes it a point to study each patient during the biopsy, gathering as much intel about her support structure and life circumstances as possible.

That, in fact, taps into the downside of her job, mainly, her frustration of not being able to meet the overwhelming demand of all cancer-related issues. Joy often feels spread thin. Diagnosed women move along to another facet of their treatment plans, like chemotherapy or radiation, and there, indeed, is no breast nurse navigator in place to support them there.

So, she usually gets a phone call from a distressed woman, asking for help. She has to not only do her job, centering on diagnosis and biopsies, but also tend to all other areas of cancer as well.

It’s too much. And we can’t clone her.

Therefore, logically, one would think this reality would be a gigantic impetus for the medical community to instate navigators in all clinic/ Cancer Care areas. Well, unfortunately, not quite.

Frequently, it comes down to the bottom line.

Clinics will assert, however legitimately, they simply don’t have the funds for that scope of care. Or, another possibility? Sometimes, clinics are clueless this is even a problem. They simply don’t hear about the in-need patients, asking for and requiring specific support. They, perhaps, don’t see a problem because nurse navigators, like Joy, are in clinics running around like chickens with their heads cut off, trying to be all cancer things to all cancer patients, getting the various needs met.

And then there’s the reluctance to do a more ambitious sweep of all interconnected clinics. One theory, in dealing with powerful people making these decisions, states that if navigators are fully implemented in one individual clinic, they’d then need to be implemented in all clinics. It’s a matter of standardization. And, what’s more, the argument declares standardization can kill innovation. Therefore, a hesitant response may occur.

Another possibility? Navigator installation may be deemed unnecessary, especially since there are already roles such as radiation nurses and social workers commonly in place in clinics.

Maybe the powers- that- be see it as redundancy.

Perhaps, it’s simply too intimidating a prospect, as this nurse navigator would not only need expertise in all things cancer, but also in coordination, networking and scheduling responsibilities.

In essence, the navigator acts as an omnipotent cancer concierge. Would this, then, be too much to ask of one individual?

Or, could there, indeed, be an emphasis on training, incorporating the “many hands make light work” theory, while working as a cohesive Cancer Care relay race?

Part of Joy’s vision includes a regular meeting of all navigators, sharing information and updates. Whether that’s on a weekly or a daily basis, it still calls attention to the interconnection of everyone, cross pollinating and meeting the needs of the patients in their care.

She has presented her wider installation proposal to her own clinic. She sees potential. She desires this navigator role to be installed, at every phase of treatment, for ALL cancers, not just Breast cancer.

Joy envisions the navigator acting as a hands-on advocate, for each diagnosed person, even going so far as to accompany the patient in her appointments. The ultimate support person. The importance of that cannot be overstated.

For there are too many women, unfortunately, who have no such person in the room with them. Navigators, therefore, would guarantee the patient would not be left alone, to face her intimidating reality. They would do the emotional handholding, as well as the practical matters of taking notes, deciphering the daunting cancer language and coordinating the next appointment, test or procedure.

Again, the powers- that- be might prefer to see the evidence- based practice; they want concrete results.

But, throughout the country, navigators are in place. It IS happening already.

It is why Dr. Harold Freeman was inspired in the first place. In his work, he saw a direct correlation between navigation and increased survivorship.

“After the implementation of patient navigation for breast cancer, the number of women seeking treatment for late stage (stage 3-4) breast cancers decreased from 49% to 21%.”

“Cancer of the Breast in Poor Black Women,” By Harold P. Freeman and Tarik J. Wasfie, 1989; https://www.ncbi.nlm.nih.gov/pubmed/2720605?dopt=Abstract

Harold P. Freeman Patient Navigation Institute; http://www.hpfreemanpni.org/resources/

Used with permission.

As it stands now, Joy is currently awaiting a response from those powers- that- be.

And, in the meantime, she’s still the only breast nurse navigator I’ve encountered, thus far. But her dream of an official navigator, stationed at every port? It’s not happening yet.

So, she works to the best of her ability, trying to meet patient needs.

As I endeavor to maintain my survivorship, Joy and I still keep in touch, dealing with everything that Breast cancer entails. We’re friends, but with that being said, she is still every bit the professional nurse navigator. She executes both beautifully.

So, beyond the clinical, the real value I’ve experienced of nurse navigators, through Joy, is the human, compassionate component. She has been there through the terrifying. She not only scheduled appointments, but she also listened to my fears and concerns. That element of care was more important to me than any cancer test. I needed the “friend” results much more than anything from a lab. Seriously.

Therefore, if/when, you are given an unfortunate diagnosis, I hope you stumble upon a nurse navigator like Joy in the process.

It will make all the difference.

*(Name changed for privacy).

Copyright © 2020 by Sheryle Cruse