The Shrinking Of The Circle

On the turning away
From the pale and downtrodden
And the words they say
Which we won't understand
Don't accept that what's happening
Is just a case of others' suffering
Or you'll find that you're joining in
The turning away
                –Pink Floyd

When you have a terminal illness, or any difficulty that makes others uncomfortable, you experience something that makes the whole experience worse than it should be. I’m talking about abandonment. Not a nice subject, but one I’ve wanted to write about for some time. I just couldn’t figure out a way to write it that didn’t sound like scolding or complaint. After the experiences I’ve had this week, I think I know how to approach this subject. It’s an important one, because everyone in my category experiences this. It needs to be addressed.

This post is a companion to Sitting In The Mud, which has reached more people than anything I’ve written so far, because it applies to all of us. But unlike that post, this one explores what happens on both sides when we won’t sit in that mud, for whatever reason.

Since I went public with my cancer more than two years ago, people I thought were friends have disappeared. One couple with whom we had had a long, close relationship suddenly dropped off the face of the earth when they found out I had cancer. My wife has also experienced this because of me. One of her best friends for decades stopped returning her calls when it was learned I had terminal cancer.

Everyone who has had cancer or any other life-threatening illness or disability knows what I’m talking about. It happens to all of us. I said early in my journey that when you have cancer, you find out who your friends are. And who they aren’t. Despite what many people think, friendship is not a feeling. It’s an action. Your friendship with anyone is not measured by how you feel about them, but by how you treat them.

While a few abandoned us early when they learned how serious my illness was, many more stepped up. My circle of friends did not shrink for my first two years with cancer. It exploded. I received support from around the world, and made many new friends. I gained whole new groups of supporters, from those in the Prostate Cancer Support Group on Facebook to the Neal Morse community. I gained chosen family and several good friends from my association with the Littleton Conservatory Of Rock. I have felt loved beyond anything I’ve experienced in my life. But since I began hospice care, many have fallen by the wayside. It seems they just can’t hang with me and my impending demise. They can’t go there, so they stay away, or shut me out in some way.

I suspect that many of them feel I’ve given up. Maybe they could only follow and support me when it seemed I was “fighting.” I think this is true of many in the prostate cancer community. They don’t want to think about what might be coming for them, so they choose to keep scrolling when they see a post of mine, when they used to stop and read.

There are also those who think they love me too much to watch me die. And I force them to watch. But if they won’t stay with me in my darkest hour, do they really love me?

Some don’t disappear completely. They simply cool towards me. A once close friendship becomes a casual one. A relationship that used to call for extended periods of time together is now reduced to a dinner here and there. It’s not complete abandonment like the ones I mentioned earlier, but it is a loss of intimacy. And I crave intimacy now. I need it.

I’ve heard from the beginning of this process that as we get closer to death, our circle does not expand. It shrinks. For two years, I experienced the opposite, so I found this hard to believe. I thought my following and personal relationships would continue to grow, as it had from the beginning. But that is not what has happened.  And it’s not just others keeping me at arms length or worse. I’m doing the same thing to some others. I’m shrinking my own circle. I have to.

Here’s the truth. I no longer have time for casual friendships. I only have time for my inner circle now. There are many people who want face time with me, and I don’t have enough time to fit everyone in. So it’s not always about feeling as though someone did not prioritize their dying friend like I thought they should. It’s also about time. Time is the most precious thing I have. I have to make hard choices about who and what I’ll spend my time on.

Each time I meet someone for coffee or lunch, it’s time away from Sharon. Every activity I’m involved in costs her time with me. There’s a limit to how many meetings and lunches I can do. But if you are important to me, and if you have been there for me, whether near or far, I will make time for you. There are some I need to see or talk with often and repeatedly. For others, one meeting is enough. And some don’t make the cut. It has to be that way. I don’t get more than 24 hours per day just because I’m dying. 

I have a specific set of criteria to discern the difference between those who have stepped up and those who have backed away. I use these criteria to decide who I’ll make time for. Sometimes it’s based on the level of our friendship to begin with. If we’re casual friends, it’s unlikely I’ll be able to find time for a one-on-one meeting. If we’re close friends, it boils down to this. If I feel you’ve been there for me when I needed you, you remain in my inner circle. If I feel you’ve let me down in some major way, I may not return your messages or calls. I can’t take the disappointment of being let down, so I have to protect myself. But there are exceptions made on a case-by-case basis, as we will see.

My emotions are fragile. Most of the time, I’m upbeat, as you know if you read my posts. But it doesn’t take much to send my emotional state into a tailspin. Just a little heartbreak. And no one can break my heart easier than those I love the most.

This issue came to a head in an interesting way this week. Three different situations and levels of friendship, each with a different outcome. It helped clarify my feelings about this, and made it possible for me to finally write this post. One was what I’d call a casual friend, one a close friend, and the other a couple who are chosen family to me. Two of these exchanges or encounters resolved well, in my mind, according to the criteria I just described. The other did not. In one scenario, I was the one who excluded someone. In another, a friendship was partially restored. And in the other, I was disappointed, and felt I was being told it would be difficult to find time for me. Within that small sample, it felt to me as though my circle shrank by half in one week. But despite my disappointment, I will make time for the ones who disappointed me no matter what.

This past week showed me that I am as responsible for this winnowing effect as others are. So while pointing fingers at others, I’m pointing four more back at myself. It gave me a handle on what was happening on both sides.

But while I talk about those who are excluded from my inner circle, whether by their choice or mine, there are others who stick by me no matter how bad it gets. There is a small group of friends who regularly check on me, just to see how I’m feeling that day. It helps more than you can imagine, unless you’ve been there. Some live near me, others live far away. Close friendships have developed this way. If this describes you, you are in my inner circle even if you live in another state, or another country. The ironic thing is, these people seem to be the most sensitive about how precious my remaining time is. They sometimes feel like they’re bothering me. Trust me, you’re not. You are a great help, and I will make whatever time I can for you. You encourage me and support me. Don’t ever feel like you’re bothering me. I will continue to make time for you until my time runs out.

At this point in my life, with very little time left, my circle is shrinking. Some are abandoning me by choice. Some want to see me, but I can’t or won’t make time for them. And a few get unlimited grace because of the depth of my love for them. None of it is fair to any of us. What’s happening to me isn’t fair. But as time runs out for me, I must prioritize. If I’m not a priority for you, chances are you won’t be one for me.

I hear it said that everyone processes something like this differently, and I shouldn’t judge if someone feels that they can’t stay close to me because of how it makes them feel or because they’re too busy. Well, I do judge. If the way you process my dying is to back away, the way you process it is wrong. You have an obligation to your dying friend. If someone you say you love is dying, and you can’t make time for them, or stay in touch in other ways, are you acting like a friend? Friendship is as friendship does. But using this same criteria, you may judge me. I plead guilty, and so should you.

What they say is true. As you approach death, your circle shrinks. I am only one example. There are millions like me. Their circle is shrinking too. If you say you love them, but don’t show up for them because it makes you uncomfortable or you have other priorities, the love you feel isn’t real. Love isn’t love until you give it away. Don’t turn away from your friend in need. Instead, be the friend that they need. Not just for them, but for yourself. Remember, they aren’t the only ones running out of time. You’re running out of time with them too. When your loved one passes from this life, they will no longer be suffering. But you will suffer the guilt and regret that you didn’t make time for them while you could. If you really love them, that is.

Your friend needs you, and you need them, whether you know it right now or not. Don’t just feel friendship for them, be a friend to them. Or you’ll find that you’re joining in the turning away. #waroncancer #bearingwitness

Then they will reply, “Lord, when did we ever see you hungry or thirsty or a stranger or naked or sick or in prison, and not help you?” And he will answer, “I tell you the truth, when you refused to help the least of these my brothers and sisters, you were refusing to help me.” (Matthew 25:44-55)