When I was a kid, during our long, hot Sacramento summers, my friends and I would mull over the big questions in life. We'd sit under shady trees, blades of grass tickling our tan legs, watching ants march through the bright green tangles and ponder life's great mysteries: What happens after you die? Why can't you remember anything from before you were born? Is it better to die quickly and painlessly in an accident, or slowly and painfully yet with time to say good-bye, like from cancer?
Maybe we were morbid kids, but I tend to think most children think about these things.
Prophetically, I was strongly in the cancer camp. I felt that it was important to be able to say good-bye, to finish up, to tell people that you loved them, to close the book, even if you had to experience pain. In my fantasy death, I would be sick in bed, pale, long black hair spread across the pillow like Sleeping Beauty, and all of those who had hurt me would realize it, come and hold my hand, apologize for the error of their ways, and I would be at peace. I felt satisfied knowing that after my death, those who didn't come to see me would be sorry forever for what they'd done to me.
Of course, life doesn't work that way, especially for some of us. I was raised in an addicted, dysfunctional family, hence my desire for deathbed apologies. But as we who grew up in that kind of situation know, crisis does not make dysfunctional families normal. It makes whatever was wrong, worse.
An almost a universal cancer experience is abandonment. Upon your diagnosis, somebody you know will disappear. This happens even if you have an early stage cancer with a good prognosis, but it also happens when you, like me, have a terminal cancer.
It is a hurtful experience to know that somebody you formerly thought of as a friend suddenly won't return your calls, or sees you in a room and walks the other way, and somehow manages to forget that you exist. During your illness, these people not only don't contact you, send cards or messages, or ask about you, but many of them go out of their way to avoid you. This is not an adjustment period, it can go on for the entire length of your illness, no matter how it will end. It stings when it is is done by a casual friend, but it can be devastatingly hurtful when it is a close relative.
In my life, the deserter is my brother.
When you have a life-ending cancer, being abandoned is not only painful but puzzling. You wonder, "do these people not understand that they may never speak to me again?" "Do I mean so little to them that they will allow me to die rather than put themselves through whatever discomfort they may feel talking to me?" "Do they really not care?" "Won't they mind when I'm gone?"
In three years, my brother hasn't called me, come to visit or as much as sent a card. Three years of chemo, three surgeries, half my liver removed, a terminal diagnosis.... and silence. Last summer I was at my step-daughter's wedding, which was just a few miles from his house, and we were driving by on his birthday.. Miraculously, I was able to reach him by phone (normally a near impossibility) but he would not see me. I sat there staring at my phone, unbelieving, as I heard the excuses, "The kids aren't up." (at 1:00 pm). "My wife isn't feeling well." "I have to run errands." and, because of course he was thinking about me, "Traffic will be bad for you, there is a race nearby."
There was no traffic.
The real reason, I think, was simple: he didn't want to see me. He didn't want to feel whatever feeling I would bring up, whether it be anger, sadness or stress. He would not put himself into emotional pain for me, his dying sister.
Somehow, he must be able to justify this behavior, but I no longer wonder how or why, and I have come to terms with this disregard. It isn't about me, it is about him and his failings. He will have to live with them or, mostly likely, never think about it.
Let me make this clear: If he read my blog, I would not post this. Although my blog is meant to share the reality of dying of cancer as well as let others with cancer know that they are not alone, I believe that it is not the place to air grievances. But he will never see this; he has bragged he doesn't read it or any other blog. And so, I share this very personal experience as I have shared others, because I know I'm not alone, and my mission is to let my readers know that they are not alone either. I am not the only one who has experienced this abandonment by a family member - thousands of you have too.
I have heard that best friends, sisters, cousins, even mothers suddenly disappear when cancer rears its tumorous head. Many times - most times - people recover, and their friends and family, oddly enough, come back. A few apologize, saying they couldn't "handle it." The formerly sick person is often unsure what to do or how to react when somebody suddenly reappears and acts as if all is well, as if nothing had happened, when they have had a major, life changing event.
I was prompted to write this because in searching around to see what things I need to take care of for my family, documents or decisions that I have forgotten to make, a search turned up this article on hospice.net. And, this line struck me:
"Because they don’t know what to say or do, or because your illness may arouse their own fears of mortality, they may even avoid you altogether. Know that their apparent abandonment does not mean they don’t love you."
Puhleeze. I beg to differ.
I question the definition of "love" by the author of this article. My definition (oh, and Merriam-Webster's too) is "unselfish loyal and benevolent concern for the good of another."
Abandonment in sickness means exactly that they don't love you.
Love is not a feeling. It is feeling combined with behavior. It is sacrifice. It is putting aside your fears and your desires for the sake of somebody else.
Growing up in the chaos of alcoholism, one of my favorite sayings became, "You are what you do." Alcoholics say a lot of things in the throes of drunkenness or anger, or depression or withdrawal, false magnanimity or intense selfishness. You can become very confused by the dichotomy between what is said and what happens. All you can go by is what they do, not what they say they are going to do. "Actions Speak Louder than Words."
And, I have found that is true for everybody. People are not what they say they are, they are what they do. Behavior is like a compass, always pointing true. So many people get into trouble by not understanding that. Women get into abusive relationships, people marry the wrong person, they ignore what we all see as red flags. If you are hit, abused, ignored, abandoned, lied to, and then told you are loved - you are not.
Here is love and caring: A husband who goes to the store day after day and night after night and cooks the meals and cleans after working ten hours because you can't. A child who never complains that they can't do something because mom doesn't feel well. (A mom who is sick and does everything in her power to make sure her child does everything that other kids do is love, too.) A friend who comes 2 thousand miles to remake a bedroom. A old acquaintance who calls out of the blue just thinking of you, to see if you want to go to a Globetrotters game. A gift card for food delivery, a homemade meal brought over, an offering of something soft or a dessert or a note or text sent for no reason other than people know you are having a hard time. That you have cancer. That you are going to die. That they'll miss you.
That is a big thing, and good people care with action.
Those things are love. Love is sacrifice of time, energy, money, and thought on behalf of another person. So, those of us with cancer, many of us who have had somebody abandon us in our lives, we must learn to focus on the good - the ones who demonstrably love us - rather than the ones who don't.
Had I written the line in that article, I would have written,
"Because they don’t know what to say or do, or because your illness may arouse their own fears of mortality, they may even avoid you altogether. Instead of focusing on those who have left you, make sure you focus on those who are still around and who are generously giving of their time. Because, you will find that there are more of them than you know."
I would never tell somebody to understand or forgive abandonment. It is a cruel thing to face when you are dying and we have enough to contend with. At some point, it is OKAY that it is about us.
Speaking of forgiveness, aside from that one line, I found some very helpful articles on that site, so if you have been diagnosed with a terminal illness, or have a family member who has, then check it out. I particularly liked the concept of an "ethical will" and will be implementing that idea in my own life.
The one thing I know, like my old childhood fantasy, is I don't want anybody crying over my casket who was not crying with me in life. As an adult, I know I can't make anybody sorry, but I'll be taking steps to make sure that my children can mourn in peace.
Please vote for me in Healthline's Best Blog Contest. You all have done a remarkable job helping me stay at the top and I'm very grateful you haven't abandoned me during this long, long contest! It ends Feb 14th so keep it up and tell your friends! This money will go to my son's college fund. Vote here: