Thursday, July 12, 2018

Day 2,858: A True Story

Today as I sit here writing for the first time in six months, I wonder if I remember how to do this.

And I realize that I do, but that I am not going to do this the way I did it before. That is probably as good a thing to write about as any, after all this time.

I have been meaning to write for so long, but I have had no real desire to do so. Today seems important, though.

Five years ago today, I was diagnosed with a rare and aggressive form of breast cancer--for the second time. I had survived past the crucial three year mark with no evidence of disease, albeit barely. I was re-diagnosed 3 years and 2 months after my first diagnosis.

You could go back and read what I wrote at that time. For the first few months of my new cancer, this blog took on a life of its own for me. I have never been well known, but in comparison, it seemed that so many people were reading it. And yet...well, that is what I will write about today.

Five years is significant. Five years in the world of triple negative breast cancer is a milestone. Five years is a cause for celebration. Five years is a Thursday. Five years is a busy day at work. Five years is my kids watching Netflix while I write this. Five years is it's too hot to cook. There is no way to explain to friends, family, or strangers what five years of life you didn't expect to get is like, or what it is like to not expect it, or how it has changed you, or why it matters or doesn't matter.

Or is there?

In the blog post before last, I wrote about my depression. Or, at least, I used my depression as an artistic vehicle to tell the story I wanted to tell. I am reading a book right now that I am truly in love with, called the Girl Who Smiled Beads by Clemantine Wamariya. It is the story of a girl who survived the Rwandan genocide at age six, became a refugee in seven different countries in seven years, eventually landed in the Chicago area and went to Yale. But it also is not that story at all, because that sentence tells you nothing. It is so well-told, so real in her rendering of how she actually experienced the events that turned her life into a cruel, mundane, beautiful absurdity. It is a story I relate to, when she describes her coping mechanisms, and that I feel guilty for relating to, though not really, because guilt is an emotion I lost somewhere along the way. In this wonderful book, the author says:

I told a true story. I told a story that conveyed nothing.

And that--that is what I did, in some ways, for almost 8 years when writing this blog. I told true stories. I never said anything here that wasn't true, real, and based on my own experiences. And yet. What did I say about myself? What did I say about my family, my disease, what did anyone learn? I used my experiences to make the points I wanted to make--about society, about illness, about death, about injustice and the false meritocracy. I wrote words that moved people and inspired them and helped them even, most importantly, in the case of women with cancer who were aided by this blog. I wrote words that created a space between my actual life as I was living it and the part I was willing to share.

I told a true story. And in some ways, I told you nothing.

I wrote about my depression when I wrote about my daughter running. I sort of explained how medication brought me to a point of being able to do something useful about the 30+ years of PTSD or whatever you want to call it that I have learned to function with, that I have used to my own benefit. It was only when it became unmanageable to need to escape all the time--when I had a third cancer scare that turned into nothing, and I had prepared myself for a fight that didn't come, and then I had no idea what to do--that I needed intervention. It is one thing to have a fight and flight response when it helps you, even when you are fighting and fleeing your own body. It is another thing when you are sitting in your cute house in a bucolic neighborhood with your charming family and stable job and husband who adores you and that instinct is in hyperdrive. What is there to fight? To flee? That is how you find yourself refusing to eat, crying uselessly on the couch, wanting to get a divorce, quit your job, and move out of state all at the same time--just to escape.

I wrote about that, but not really. I don't really know if it's worth writing about--maybe it is. One thing that is worth relating is a conversation I had with the psychiatrist who helped me figure out my dosage. I have a therapist, my gynecologist got me the prescription--but I needed an expert to help dose me. So I met with this woman. She needed to know something about me. She asked me some questions. We didn't have much time. I figured I should give her the major highlights, leaving out almost everything that I thought was relevant. And so I told her about just the physical trials related to accidents or disease. I said well. I had faced death five times by the time I was 40, twice by the time I was 10. I sometimes wonder if I have a chip missing because it is hard for me to feel certain things. It is easy for me to feel empathy and hard for me to feel sympathy, for example. I don't know if it matters that I am like this. It is hard for me to feel that some things matter, including me.

And this quiet British woman earned her title and her salary by breaking something down for me after the long pause that followed my introduction.

Well, I wouldn't expect you to be different. It is like when people survive wars and are then expected to focus on regular things, or when people experience intense pain and cannot sympathize over a paper cut. You do not have a chip missing. You just are not living with the same illusions that protect most people from feeling as you do.

What illusions? She began:

The illusion that life is fair, that you are in control, that you won't die. You know these things are false, and you know them every day. Many people still have the safety of those illusions.

And in my mind I continued: the illusion that someone will save you, that you are important, that anyone isn't important, that suffering isn't real, that people get what they deserve, that things will be all right.

If this sounds depressing, understand this: it isn't, at least to me. This is not pessimism. This is an understanding of how suffering is the reality that ties people together, and that suffering is unique, personal, constant, global, and uninteresting. The statement of illusion is a soundbite describing this blog, and why I wrote it--and why I stopped.

I stopped writing because I no longer wanted to write a true story, but one that revealed nothing. And yet, I could not imagine that anyone would want to read a true story that revealed anything real about me. I also did not want to give up the right, the gift that I have, to craft my true story to read as I want it to read without allowing anyone reading it to get inside me--inside my body, my brain, my memories, my stories. I have always written words that allow me to keep my experiences, memories, and sense of self as mine. You cannot read my words and tell me my story isn't true, because I do not give you enough rope to hang me with. You cannot read my words and tell me that you believe my words but think they are irrelevant, because I crafted them to make it clear that I am not asking your permission for relevance.

I am expert at this--and for good reason. The closer I got to telling a true story that revealed something of me, the more it alientated people from me. I would write something raw and I would get messages: Katy, you sound angry. Katy, I hope you get back to being yourself. Katy, I stopped reading because you got away from sounding like a fighter.

And I wrote anyway, because I was writing for an audience of two. I was writing a memoir and a life lessons manual for my children. This had the added benefit of the fact that neither of them, to this day, has ever read a word of this blog. So I was writing for an intimate audience whom I expected to read this once I was dead.

Obviously, if I stop doing that, this will be different.

And I am going to try.

Because I am still here--8 years later, 5 years later. This country is now a living and breathing example of all of the illusions that none of us can afford to live under anymore. And if life is to be absurd, and unjust, and out of control, and if we are all to suffer but not to equal extents and if we are all adrift but some with anchors and some without, why not write a true story, one that conveys something?

This is my explanation. That is what I am going to do. It might be self-indulgent. I don't care. The self is what we have left, and what we never had. It's worth writing about, especially when its existence in the corporeal world continues to take me by surprise.

I'm going to try to start writing a true story--about me. If nothing else, it will be a new escape.


  1. All I can say is
    Please do.

  2. I reached my 5 year mark with MBC HER 2neu+ in May.
    Yes, you must write your true story for you and for me. These words, the words you have arranged here expressing thoughts so beautifully, are words I wish I had written, thoughts I believe we both share. You are a gift.
    BTW, some unpleasant characterizations of me have been said because of emotions that poured out allowing others inside my head. How hurtful those were yet they revealed to me how out of touch they are with themselves and life’s realities—holding on to their “illusions” baffles me often—“Things happen for a reason.” grrrr.

  3. We're still here, and the ones who matter don't think you're being angry or emotional. Bring it, lady.

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