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?

Introversion and Conferences

I am an introvert, in fact I’m just about as introverted as the tests can test. I hate small talk, I really don’t enjoy meeting new people, and when I’m out of my element, I’m painfully shy. I am the most comfortable when I have responsibilities where I have something to do at a gathering because wandering and finding someone to talk to is often paralyzing in an unstructured setting.

Are you surprised?

So many people I meet express surprise when I tell them that I’m an introvert.

Introversion is often misunderstood and is about energy. People who are extroverted, generally, get their energy from being around people. For us introverts, being around people is draining. Like really draining. Like need to go home and change into pajamas immediately draining.

When I was practicing law, I went to a lot of legal conferences. I went to learn. That was my focus. I didn’t do much socializing and usually skipped the social parts of the conference. When I went to networking events, I had specific goals, and I went with the goal of collecting business cards or making specific connections.

Now, when I go to conferences, I go with one of my goals to socialize, to meet people. Yes, learning is still in the mix, especially when I go to conferences that are focused on breast cancer research, but the conferences that I attend now are about making connections that could potentially save my life.

Those are pretty high stakes, but what it does for me is focuses my energy. I set my expectations and when I’m focused, I can be intense. That’s how I balance my introversion and conferences. There is value to be obtained and I’m laser focused on what I need to obtain or learn or leave with.

How do you mesh your personality with activities?

Are there activities that are harder or easier for you?

It’s Not About You

What a great title!! The author, Tom Rath, has also been involved with writing about Strength Finders, which was a great asset to me and my law firm when I was practicing. Beyond personality, Strength Finders focuses on those traits that serve you personally well in the workplace. Super helpful, especially in a work place that contains disparate people from various generations and backgrounds.

Rath’s book, for which I am writing this review, came after his work with Strength Finders and is about his personal story. The story begins with his grandfather and the most important lesson his grandfather taught him, which is:

… the best way to fill my own bucket was to spend time filling other people’s …

He goes on to lay out the three elements that must be present if one is to apply this principle to ones life, to wit:

  1. Get Over Yourself;
  2. Invest in the People Who Matter Most; and
  3. Focus on What Will Grow When You Are Gone.

Since Rath suffers from a genetic condition that has reduced his life expectancy significantly, I was particularly interested in his perspective. Many of the insights laid out in the book clearly stem from the viewpoint of someone understanding that life is short. Some of the quotable comments he makes that resonated with me are:

How Full Is Your Bucket?

Living a Life of Contribution

He ends with this:

Most people agree life is not about focusing on self-oriented or monetary ambitions. It is about what you create that improves lives. It is about investing in the development of other people. And it is about participating in efforts that will continue to grow when you are gone. In the end, you won’t get to stay around forever, but your contributions will.

In the end, you are what you contributed to the world.

It’s helpful for me to think about a legacy and leaving a legacy in a concrete way.  The contributions that I make will live on and that’s a comforting thought to someone living with a terminal diagnosis.