Defiant Joy

Wish I could write songs about anything other than death
But I can’t go to bed without drawing the red, shaving off breaths;
Each one so heavy, each one so cumbersome
Each one a lead weight hanging between my lungs
Spilling my guts
Sweat on a microphone, breaking my voice
But whenever I’m alone with you, I can’t talk..
“Isn’t this weather nice?” “Are you okay?”

“Should I go somewhere else and hide my face?”

A sprinter, learning to wait. A marathon runner, my ankles are sprained.

Julien Baker, “Sprained Ankle”

The founder of the Colontown Facebook groups has a saying that she repeats often. She tells us that we should live our lives with “Defiant Joy.” The idea is simple. That no matter how devastating cancer can be, no matter what it throws at us, we can choose to attack it back by finding joy and living it- in every day and in every way that we can.

And my first reaction to this phrase? Okay, I’ll be honest. I hated it. It’s easy, I thought, to espouse this view when you’ve been in remission from cancer. When it didn’t kill you. When you get to survive and be “stronger” for all of the pain that you’ve been through. Or maybe it’s easy when you’ve been playing the long game. When your cancer is slow-growing or you’ve found a treatment that works for you long-term.

“Defiant Joy” is very hard for those of us who are definitely terminal. It’s very hard for those of us whose trajectory towards death is moving far more quickly than we hoped it would be. It’s very, very hard for those of us who stand to soon lose everything and everyone that we love. For those of us who know that there will be scars, gaps and holes in those that we leave behind, and that there is nothing that we can do to prevent it.

My reflexive reaction of anger with this phrase comes from from the trite sentimentality of a cute little phrase that will just solve everything. The perfect catch phrase emerging from a people and a culture that believes in a just world. From a people and a culture that likely won’t have to face death until they have lived a long life, and from a people and culture that have watched way too many movies and TV shows portraying people dying of cancer as joyful, brave and heroic.

We live in a culture where healthy people literally expect people dying of cancer to be like:

Look, I know that you are about to lose, well everything: your life, your future, everything and everyone you love, etc.- but why be SO negative? You really should just focus on the positive. Maybe have a sense of humor about the whole situation? You’re such a downer!

People tire of it because they are too busy dealing with all of the smaller problems in their lives that are still okay to be upset about. The ones that can still be fixed.

Like the quote in the opening of this post, thoughts of death are with me always. When I go to sleep at night. When I wake up in the morning. They are heavy and all-consuming. I crack and “break my voice” into my own microphone- this blog. I funnel all of my pain and fear into my writings. But when I am around others all that I can seem to conjur up is small talk and musings about the weather.

Many people have tried to ‘comfort’ me with religion. They tell me that peace can be found in the faith that heaven awaits and that Jesus will always take care of me. I see this a lot, not just among the healthy, but among the community of other terminal patients that I belong to. And I am jealous. I envy their ability to have that certainty; that unbridled faith that their lore is the correct one, THE ONE that is true among the countless other theological perspectives on the after-life that have existed since man began and which still exist today.

Just a couple of weeks ago, I read about a woman dying of colon cancer who was at peace due to her faith in the the Baha’i religion, where she believes that she will live in the spiritual realm amidst her family after death. It’s a beautiful thought, and I envy that faith. It would bring me comfort, it really would. Many christians, who believe that the only path to heaven is to know Jesus and ask him for forgiveness would scoff at this 34-year-old woman and loving mother of 3. They would shake their heads and tell her that she will not make it into heaven because her lore is different than theirs.

Why would I even want to follow a religion that would exclude someone who is living a life of love because of something like that? It’s because of this that I’ve concluded that the only religion that I can have any faith and belief in is that of love itself. A phrase ingrained upon me from my Lutheran upbringing is that “God is Love”. I believe that, and nothing more.

Some people will distance themselves. Many others won’t, but make it clear from their body language that they don’t want to talk about it. And sometimes I am grateful for that, because I don’t want to talk about it either, because honestly I could use the break too. But occasionally I also resent it.

When something like this happens to you, you will witness some people insert miles of space between you and them. Some of them do this because they don’t want to be hurt, or because of their past history with this or other disease. And honestly, I understand. Others just don’t know how to react and fear doing the wrong thing, and I sort of understand that too. Taking a long, hard look at myself I realize that I used to be one of those people. Other people react in a completely opposite manner. They take a few steps closer. Others have shown me beauty and selflessness that I didn’t even know existed until this happened to me.

Before cancer, I’d been burned by too many people to be able to see this side of people without having a degree of skepticism. Now, I see it every day and it inspires me to be more, to open up myself more, and be a better person myself to all of those who are around me. I see now that all selfish actions are based on fear. Fear of losing something that you hold dearly. Fear of your loss of self or sense of importance. Fear of being without something that you think that you desperately need. Fear of rejection. And those fears were probably ingrained in you from hurts in the past, or from a core belief instilled in childhood that love is something that is scarce or needs to be earned instead of just given.

I suppose that brings me back to the topic at hand. I bristle at people daring to suggest that cancer is a “learning experience” especially among those who have gotten to survive it. You don’t get to tell me that dying of cancer is part of some great plan to teach me the meaning of life. For you, cancer was a chapter or two in the middle where the main character underwent adversity and transformation. For me, it can only be a conclusion.

But I (as in me, myself, no-one else) do have to admit that it has changed me.

I used to tell myself that the only person that I needed to please or impress was me and me alone. Do I feel like I am doing the right thing? Does this action make me feel good about myself as a person? Can I look at myself in the mirror tomorrow? I told myself that I just needed to be right by me and that everything else would fall into place. But those words could never get my heart to believe it fully. I still had fear. I am fearless now. It took facing death to finally stop caring about what other people think about me.

The part of me that now trusts in the goodness of others wants desperately to believe that the people who make decisions that effect the length of time I have left are doing so altruistically. I want to believe this because I have no “leg up” in this game (or any other game) when it comes to knowing the right people. When it comes to those kinds of things, pretty much everything I needed to know about human social behavior both in life (and to the brink of death) was learned by the time I hit high school. We are not now and have never been a merit-based society. We are a society built upon flattery, who makes us feel good, and who knows the right people. Live and tell a truth and it will set you free. But you may find yourself in different jail designed by someone with more social influence or power than you. Decide when it’s worth it. Decide when it’s not.

I want more time. I want time to live my new truth, just like so many other cancer patients and survivors. But there is no plan. God is not deciding that some people deserve to live and some people deserve to die. If you survive, you are not blessed- you are lucky. You aren’t “chosen.” You are lucky. It could have just have easily gone the other way. You could be the one looking at an un-fixable prognosis of far less than a year, hoping for the right science and right clinical trial to you more time. And I could be screaming from the rooftops that God had blessed me and saved me for some greater purpose. How would you feel then? And please don’t waste your time on survivor’s guilt. Just continue to give back everything good that you can to the world that you are so very, very fortunate to still be alive in. And continue to remember and honor those who have passed.

So I am changed, and I am changed for the better. But I don’t get to stick around for the long haul. What do I do with that? I find defiant joy. It isn’t a joy that comes because you told me to feel that way. Or because that is what society expects of me. It’s a joy that I embrace because I, and nobody else, have chosen to feel that way . That’s what makes it defiant. Defiant joy is not what someone else has told me I should feel. It’s what I choose to feel, when I am ready, because life and death have left me little other choice.

So I apologize to the Colontown founder for being so slow on the uptake with this phrase, but I DO get it now. I have moments of joy for no other reason than that I know that those moments are limited. I find moments of joy because I am still blessed to have today. I find moments of joy because I still have the greatest gifts- my friends and my family- surrounding me. I find moments of joy because I still feel healthy and I am not yet completely out of options. I find moments of joy because I have been gifted life up to this point, and because of the legacy (my children) that I leave behind. I find moments of joy because cancer has taken away everything else, and it’s the only thing left I can claim. In these moments, I choose Defiant Joy.