How do you answer the question: “How are You?

What is in the middle of “fine” and the whole sordid story?

I confess that sometimes I verbally vomit the entire story on unsuspecting people who have innocently asked a socially acceptable question. At some point along the way, I’ve lost the social acceptable response … or have I?

Why do people ask how you are when they don’t really want to know all of it?

I’m sure I’ve asked the question when I didn’t really want to know the whole story.  I know I have responded automatically, as if by rote, when someone asks me how I’m doing.  It’s the polite thing to do, after all, to inquire.  Yet, is it really polite to ask the question if we don’t really want to know?

When did politeness take the place of real concern?

I confess to having a weird relationship with social graces.  On the one had, I have internalized the social cues and requirements of my Midwestern upbringing.   I’ve read books by Emily Post and found myself nodding at all the small things that I learned from my grandmothers and great-grandmother.   I still cringe at things that are completely acceptable here in South Florida.  I’ve had to adjust my idea of acceptable social touching since moving to the South where everyone is embraced and kissed on the cheek automatically.  It’s taken me decades to break out of the polite acceptance of violations of courtesy or my expectations in public.

Being diagnosed with a terminal illness and carrying all of the consequences to my mental health along with the cognitive damage from chemo has finally burned away many of my closely held societal expectations of my behavior and the behavior of the medical professionals I see nearly every day.  I’d always been inclined to fill out surveys and it was not abnormal for me to complain about bad service.  Cancer and all that comes with cancer finally burned all the rest of any hesitation away.

So, despite the fact that I am sure it is often socially unacceptable, I reserve the right to burden anyone who asks me how I’m doing with the whole story.  You see, I have a story.  I have a deliciously detailed story with many anecdotal conclusions.  I’ve figured a lot out over the last nearly three years of having a terminal illness.  I’ve come in contact with lots of different people and I’ve accumulated knowledge like a squirrel preparing for winter.

Fair warning.

Dehumanization

First of all, let’s look at the definition:

dehumanize: de·hu·man·ize | \ (ˌ)dē-ˈhyü-mə-ˌnīz, (ˌ)dē-ˈyü- \ to deprive (someone or something) of human qualities, personality, or dignity: such as

a: to subject (someone, such as a prisoner) to conditions or treatment that are inhuman or degrading“… you treat people with respect, you get respect back. You treat them like animals, you strip search them, you dehumanize them, you lock them up, you don’t feed them … you are going to get that back … “— Adelina Iftene

b: to address or portray (someone) in a way that obscures or demeans that person’s humanity or individuality propaganda that dehumanizes the enemy; I’m always struck by the way language is used to dehumanize others.— Anna Lind-Guzik; Treating Chicagoland violence as merely a tally necessarily dehumanizes its victims, but it also obscures so much of the larger story about that violence.— Gene Demby;

But that approach ignores the fundamental dynamics of racism, which is

c: to remove or reduce human involvement or interaction in (something, such as a process or place); Nurses are also fearful that the use of technology will dehumanize patient care.

https://www.merriam-webster.com/dictionary/dehumanize

I’ve been thinking a lot about the habitual treatment I receive at my cancer center. While the majority of the doctors (with a few notable exceptions) are amazing, the vast majority of the staff treat me with a mildly disguised contempt, as if they are irritated at having to be in my presence.  In other words, the treatment I receive at my cancer center from many, if not most, of the staff is dehumanizing.

Let me cite a few examples from just the week before last … since I’ve been treated there for over 27 months, just think about how many incidents have occurred.

First up, the pharmacy tech who acknowledged that the answers to all the questions she was asking me were readily available to her in my file and she was simply asking me and taking up my time because it was easier for her.  She then told me that my cancer medication would be withheld from me until I capitulated to her demand that I regurgitate the details in my file rather than her taking the time to look it up. In essence, this employee felt it was fine to threaten my life (since the cancer medication is literally keeping me alive) unless I made her life easier. I’m still amazed that I was able to keep my conversation with her devoid of f-bombs.

This is an example of dehumanization/degrading in that the pharmacy tech put me into the position of doing her job as if I report to her. She didn’t ask if I had time to answer the list of questions or if I had access to my calendar at the time she called. When information is readily accessible to a front desk person, attempting to withhold medication until a patient performs the job that the front desk person is being paid for is completely inappropriate. In fact, I’m pretty sure there’s one or two laws that would apply as well. Pretty sure there could be an argument for a charge of attempted murder, just so she could save herself a few minutes.

Coming in second place was the scheduling person who left me the following message … “Hi Ms Johnson, this is (first name only) calling from (cancer center) with an urgent message. Please call me back at (main number to cancer center) as soon as possible.” This message may not seem like such an issue until you also have the context that my cancer center is huge and there are probably 20 people working there who have the same first name, rendering it impossible for me to return the message. After over 45 minutes of being transferred around the cancer center, becoming more and more panicked, I finally figured out who called me. The explanation for leaving such a vague and non specific message … HIPAA. Clearly, these people have never read HIPAA. Also, I can HEAR it when people leave the “t” out of my name.

This is an example of dehumanization in that the person leaving the impossible to return message created a panic attack and took hours out of my day that I can’t get back. She was entirely unconcerned about that and didn’t make any effort to understand why I was panicking and also because HIPAA has nothing to do with the cancer center employees’ information. Her leaving her last name or the name of her department was necessary for me to return the call and there was no reasonable reason to withhold that information from me. In this situation, I was treated as if my feelings and the affect on me was entirely inconsequential and without value. In essence, that I am without value.

Third and the absolute worst is the scheduling person who came up to me at the end of my infusion on Valentine’s Day, when I was already late to my next appointment because, as usual, I wasn’t brought back on time for my appointment, to hand me three pages of scheduled appointments. Those three pages were appointments this scheduling person had made for me without checking with me or my doctor to see if I needed any of those appointments or if I was available for said appointments on any of the dates. THREE PAGES!!!

This is dehumanizing in that it assumes that I will simply follow instructions and show up whenever they demand. It is also dehumanizing and condescending to my doctor in that the scheduler was behaving as if she knew more than my doctor by scheduling appointments no medical person who actually knows anything about my care told her that I needed. She was not apologetic or understanding when I asked her how she knew I was available for the appointments. Her assumptions skipped over the fact that I’m a person, a wife, a mother with responsibilities and treated me as if I am a widget to be placed as they desire.

I am fond of telling people that my treatment must fit into my life, not the other way around. Cancer is a big part of my experience and will be for the rest of my life, but cancer is not my life. People in the healthcare system have a responsibility to treat patients as people and to make a concerted effort to ask questions to understand how what they are recommending to me done fits within that patient’s life.

In each of these situations, I spoke with the patient’s supervisor. Two out of the three were completely dismissive and only made the situation worse. The culture of dehumanizing patients is something both set and perpetuated by the leadership of any organization. In this situation, it’s pretty clear to me that the culture of my cancer center is to blame.

So, are the relationships with my doctors sufficient enough to overlook a culture of degrading patients?

That’s a question that I’m still trying to answer.

Before anyone thinks I’ve not been proactive, I submitted a five (5) page spreadsheet of concerns and proposed solutions to the leadership of my cancer center last year and I’ve been involved with a working group since that time attempting to address them. While it seems that some of my concerns may be addressed, there is still so very far to go.

 

When a friend is dying

Before my diagnosis of Stage IV Metastatic Breast Cancer (MBC) in 2017, death wasn’t a concept that had been a significant part of my life experiences. I lost a few grandparents and other extended family as I aged but they were elderly and ill and they were, arguably, ready to be done with living with their physical limitations.

Dealing with the constant death and decline in the MBC community is a very different thing. It’s not generally common within the expected life experience to receive a text from a thirty-something friend that reads something along these lines:

“I’m afraid I might be slowly starting to die.”

A variety of responses occurred to me. You see, those of who are also terminal, we think about this a lot. We talk about death and preparing for death a lot. Yet, for us too, when it’s more immediate for someone else, it’s both difficult to know what to say and it’s also triggering. Triggering our own fears and other feelings about death, our own death.

In this situation, I swallowed my own fear and complicated feelings about my own death and I entered into the discussion. I asked questions, I tried my best to empathize and then I got on Amazon and ordered her some things to make her feel more comfortable. As I’ve often said, I’m a do-er and I show most often love to those around me by doing/giving something.

And then I cried.

I cried for my friend, her family, her friends and I cried because this isn’t the last conversation I will have with someone with the same disease that I have about how their death is imminent. I cried for myself and my children and my family because before long, that will be me. I cried because the world will be less bright when my friend leaves. I cried because so many people and companies don’t allocate resources and services the way they should for terminal patients. I cried and cried.

After I cried until there were no more tears left, it was my instinct to simply curl up and sleep the day away. It was my instinct to withdraw from the support groups where I interact with patients who are actively dying. It was my instinct not to say anything, not to reach out for help.

Why?

Even after nearly three (3) years of living with terminal cancer, I still find it hard to ask for help. Any kind of help. My mom is really good at intuiting that I need something; much better than I am and I appreciate that. I think others around me don’t often know when I’m struggling or how to help. I know that I often project that I don’t need help and that means I don’t experience the help that could be offered to me.

And I know that addressing a problem begins with admitting there is an issue.

With that in mind, it’s true, I need help. I’m dying. My life won’t end tomorrow or even next week or even, God willing, next year. But I have a less than 25% chance of living two (2) more years. It’s a sobering reality that I live with every day and I talk about with others who are metastatic, but I don’t always remember that healthy people need to hear this too.

I’m a capable, resilient person and it kills me to admit that I can’t do everything, but it’s true, I can’t. I also know that when others are given the opportunity to love on others, to meet the needs of a member of their community, it truly is a win for everyone. I’ve done my best to do that for my community and I’m used to jumping in to help. I just need to remind myself that asking for help is not a bad thing and that there are others out there who love to help as much as I do.

Asking for help doesn’t equal failure in some way, it just means acknowledging the fact that we’re human and humans need help.

Does anyone know if there is a support group for people who don’t like asking for help? Asking for a friend …

Ring Theory

I ran across this theory early on in my experience with Stage IV Metastatic Breast Cancer and it really resonated with me. The longer I’ve lived with the disease, the more it resonates with me. While I’m horrible at asking for help and often overestimate what I can handle, the kindness of some family and friends has driven home how important this idea really is. Actually it’s probably more the actions of some family and friends who have not shown kindness that has really driven home how important this concept is to those of us who are dealing with a health crisis.

I’ve included a link below to the full explanation of the theory, but here’s a quick paraphrase:

Here are the basic tenets, paraphrased from Silk and Goodman:

  1. Draw a circle. In this circle, write the name of the person at the center of the Health crisis.

  2. Now draw a larger circle around the first one. In this ring, put the name of the person next closest to the crisis.

  3. In each larger ring, put the next closest people. As Silk and Goodman state, “Parents and children before more distant relatives. Intimate friends in smaller rings, less intimate friends in larger ones. . . When you are done, you have a Kvetching Order.

A pictorial representation may help;

The basic idea is that the person in the middle does not receive the venting/kvetching from outer circles, especially when said venting is about the person in need of help. For example, if you are a family member of a terminally ill patient who spends the night in the hospital with your dying family member, you don’t then get to complain to that dying family member about how that night away from your family was stressful for you or how others in the family did or didn’t communicate nicely when arranging for someone to spend the night.

Why?

This theory takes into consideration that the person who is dying is carrying a much heavier psychological load than anyone else and that close family is affected more than distant relatives or acquaintances. In essence, this theory is how to demonstrate love in a clear and understandable way. Violating this idea creates more and more angst and damage to the person who is already carrying more than a healthy person ever could understand.

Why would someone who loves a dying person want to cause further damage?

Here’s an article that lays out the ring theory in much more detail for anyone who is interested in learning more. https://www.psychologytoday.com/us/blog/promoting-hope-preventing-suicide/201705/ring-theory-helps-us-bring-comfort-in

Pity versus Empathy

Pity is feeling bad for someone. Empathy is feeling bad with someone.

This is a picture of the feeling buddies that I’ve used for years with my boys to name their feelings. There are songs and worksheets through Conscious Discipline that we use as well. It is sometimes astonishing to me how much I learn from attempting to teach my boys about their emotions and how important it is.

For instance, this school year, my 4 year old started coming home pretty much every day primed to have a meltdown. At first, I did interpret the behavior and commentary as insubordination and punished him accordingly. Then, I finally realized that he was holding in those big feelings all day at school and when he was able to relax, they all came out. Once we figured that out, the time after school has gotten a LOT smoother and I’ve been able to show him much more empathy than before. We also can’t plan outings right after school without a lot of planning.

I often ponder the differences between pity and empathy as I encounter different people and very different reactions to my diagnosis. Initially, I didn’t tell anyone and often reacted angrily when people would ask about my bald head or why I was limping. Now, I often use my diagnosis as a bit of a weapon, dropping that information like a bomb on unsuspecting people I want to feel bad. Yep, I have used the knowledge of my diagnosis to make people feel bad at times, sometimes for honorable purposes and sometimes just to get what I want or because I’m mad at something. I get it, not so nice. I’m not above fighting with every tool in my arsenal.

The different responses I receive have a lot to do with if the person is feeling pity or empathy. The ones who pity me, will acknowledge the information, usually in a surfacey way and move on without engaging or feeling much of anything. The rare ones who show empathy, are literally stopped in their tracks.

The differences are profound.

With the ones who demonstrate pity, I often feel dirty after talking with them. The concept of pearls before swine comes to mind and usually I regret giving these people information about me. Many of the people I talk to at my insurance company or my cancer center fall into this category. They may feel bad for me, but it doesn’t change their behavior, they don’t do anything differently and much of what they do or don’t do makes my life much more difficult.

The people who show empathy are rare and their reactions often surprise me. I live with death all the time, so talking about things that seem normal now often surprise others. I had an extremely poignant conversation with the lady doing my facial at the spa for my birthday. She was in tears and made a donation to Metavivor right in front of me. That was powerful.

As 2020 ramps up, I am reminded that to enter into real relationships, empathy is a necessary ingredient. Remembering how I feel when on the receiving end of both pity and empathy helps me to remember which one is more important.

How will you show empathy?

Swedish Death Cleaning

This concept is fascinating to me and I’ve been trying to apply it in my own life as I live while dying. This Article explains it in more detail. Even though the idea is applied in the context of death, I think each of the tasks listed in the meme above are nearly universal.

How can you apply this knowledge today?

Perspective

I flew to Philadelphia in April of this year (2019) for the Living Beyond Breast Cancer (LBBC) Conference. This means I flew from Miami to Philadelphia and then returned. I noticed from the air that the coast looks so very similar no matter where you are. The buildings and trees, the ocean, etc. From thirty thousand feet, nuances are blurry and the large outlines look the same.

That got me thinking about how my outlook on life has changed irrevocably since my diagnosis with stage IV metastatic breast cancer in 2017.

The formal definition is as follows:

perspective | per·spec·tive |  \ pər-ˈspek-tiv  \

1a: a mental view or prospect to gain a broader perspective on the international scene Current Biography

b: a visible sceneespecially  : one giving a distinctive impression of distance : VISTA

2a: the interrelation in which a subject or its parts are mentally viewed places the issues in proper perspectivealso  : POINT OF VIEW

b: the capacity to view things in their true relations or relative importance trying to maintain my perspective

3: the appearance to the eye of objects in respect to their relative distance and positions

4a: the technique or process of representing on a plane or curved surface the spatial relation of objects as they might appear to the eyespecifically  : representation in a drawing or painting of parallel lines as converging in order to give the illusion of depth and distance

b: a picture in perspective

I think the different definitions taken together underline and emphasize that the position of the observer and the observed makes a big difference. It may sound trite; at the same time, I have found that looking at any situation from a variety of points of view can provide clarity.

That’s not to say that it’s easy to adjust your perspective. In a stressful or difficult situation, I find that my ability to put myself in another’s shoes is significant compromised.Nearly impossible. Yet, when the intensity of the moment has passed, then the usefulness of examining the stressful situation from other points of view comes into play. I can’t say that I’m an expert, but I do try my best to examine the situation from alternative points of view. I see far more when I make this effort.How has your perspective changed over time?