I can’t take them anymore, most of the time. This has been building for years. I can’t do some of my best things anymore at all, like spinning. If I spin, I spend the next two hours completely breathless, wheezing, coughing. If I take a walk in the cold, I can't breathe all the way in. It's terrifying. My favorites are my enemies, now.
One thing I have learned in therapy is that I am a good gauge of many things—decidedly not including my own physical pain and suffering. I just adapt and move on, without seeing the change as a problem. It isn’t denial. It’s a broken adversity switch.
There’s a lot of backstory here, but I’m not going to tell it, not today. I will tell you some things that are true, as I promised when I last wrote here, six months ago. I’ll tell a true story. I’ll tell a story that conveys something more than nothing.
It isn’t the obvious thing to go to the doctor when you can’t breathe. Not when not being able to breathe means you might be dying, albeit slowly. No, really, this is true. If the reason you can’t breathe might be that your breast cancer has metastasized to your lungs, in which case your cancer would be incurable and deadly 100% of the time, making that appointment isn’t obvious. Why not?
Because it wouldn’t matter. Because it wouldn’t change anything. Because sometimes knowing something puts you in the final when you’d rather be stuck losing the playoffs for a while.
Because you, and you, and you too—you can all go get a chest x-ray, a CT scan, an MRI. I can’t. Of course, I can. But it’s different for me. For me, it’s to find out if I’m going to die or not. Imminently. Slowly, painfully, but at the same time too quickly and not horrendously enough to want it to happen just to get it over with, not at 43.
Sometimes, you wait. Because it’s your son’s birthday. Then your husband’s, then, somehow, yours. Then, it’s Halloween. Then, it’s Thanksgiving, then Christmas. Because of vacations, or things to look forward to—none of these are the times you want to learn there won’t be much more of this. It’s never the right time to learn you’re going to die.
So you wait. And then, you pick up the phone before you can stop yourself, just because you have a break in your work day, and call your primary care doctor—not your oncologist. Before you can stop her, the receptionist makes an appointment for you—for two hours from now. For today! And you can’t wait because you opened Pandora’s box. You go, you talk to the doctor, she is new to you and sympathetic and you almost feel sorry for her when you ask her if she knows about your cancer and she says, not quite awkwardly, “yes, yes I know.” You tell her, “well someone like me—I want to find out if other things help before I do the chest xray.” Your argument is understood, and rejected. Within another 30 minutes you are getting the scan.
This is not how you expected to spend your Tuesday.
But it’s done, and there’s nothing to do but wait. They should rename cancer “The Waiting.” You don’t even try to work. You eat sushi. You overhear young men talking about their muscles, their gym time, and you find yourself enraged at them, so insufferable and so obvious in their insufferability. You hear the word “pecs” and you turn all the way around and glare.
You tell a few people. They say the same things. “I can’t imagine.” “How do you do this? “How do you feel?”
You want to be honest, but it’s hard.
You don’t feel anything. It’s been years, years before cancer even, since you felt the things that other people feel.
You are anxious, but how different is it than the hypervigilance, the constant desire to escape, the tweaking you have felt for decades?
You aren’t in denial. You are actually in the opposite of that—deep within hyper awareness.
And you have an important decision to make.
How do you spend what might be the last hours that you have in your life before you learn that you’re going to die?
Well, I already told you. It was a Tuesday. There was sushi. And annoyance. There was me, telling my husband he had to make dinner, telling a friend I wouldn’t be good company, looking at my kids and thinking how young they are and how much I’d like to see them grow up.
I didn’t feel rage or sadness or grief. I don’t feel those things, not so well, not anymore.
There was the twinge of acknowledgment that tomorrow, now today, would be the five year anniversary of the last chemo. Five years post treatment is supposed to mean something. They call it a milestone.
Three years was one too, and it was after that that cancer came back. Statistics and odds are just that—no one ever said you had to be on the right side of either of them.
There’s this: there’s no reason this wouldn’t happen to you. There’s no reason this happens. This isn’t about reasons. If I had to give this blog a tagline it would be:
“Life isn’t about what you deserve.”
So, how do you do it? The only way you can. You make other people do things your way. You tell the doctor no, she cannot give the results via the online portal. You tell her to call you, no matter what. She touches your shoulder, something you would never do. She says “OK. I can imagine you want these results ASAP.”
That night, she calls and leaves you a voicemail. And an email. And she says “I didn’t want you to spend all night worrying. Your chest xray was normal.” You thank her and she writes “I can’t imagine.” You don’t tell her why she needed to call you, because she knows some of it but maybe not the rest. If they only call when it’s bad news, you know it’s bad the minute the phone rings. If bad news means imminent death, and you tell them to call you regardless, there are a few seconds there where the game isn’t over yet. You need those seconds. You deserve them, even if this isn’t about that.
She can imagine, and she doesn’t want to, and you don’t blame her.
While you’re waiting for the xray your husband does what he does and texts you random articles to distract you. You don’t read them. You tell him that. He then asks something you aren’t expecting. He says he can’t believe it’s going to be that news, Bourne. But what if it was, or if it wasn’t, what’s on your bucket list? Should we just be doing that stuff anyway, regardless? And you tell him the truth.
Your bucket list is not to die, not yet.
That’s a true story.
Bucket List By Katy Jacob
a turtle caught near the lake house that was someone else’s lake house all the time except for a week each August in the early eighties and kept in a bucket until Chicago didn’t even survive the night, drowned in its own vomit, the Jimi Hendrix of turtles before you even named it, is the only thing you ever think of when someone says “bucket list” and they mean what would you do if you could do everything differently and of all the possibilities you think only of the turtle climbing out of the bucket in defiance and living for a few days in the grass or at least dying with a lot more dignity you think if you’re being honest the only thing on the list is a cold-blooded escape from a place that you were never supposed to get out of alive even if it housed you with the best of all intentions
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.
I haven’t written in a long time. There are a lot of reasons for that. The main one is that I finally realized I was in the throes of a crushing depression, and I needed specific intervention. The light went on when I realized I had finally managed to lose a few of the 10 pounds I had wanted to lose—because I was too apathetic to eat. I found myself crying, an alien scenario for me. I didn’t want to do anything or see anyone; I wanted to flee, to get a divorce, quit my job, move. My anxiousness and restlessness were at fever pitch. I knew I did not just need therapy. And so, I, the person who hates taking medication more than anything, asked to go on antidepressants. I asked my gynecologist. If you read this blog, you won’t find that odd. Within five days of taking 10 mg of Lexapro, I was baking a cake. I felt like a totally different person. Three months in, and the difference is astounding. The fatigue, loss of libido and even the possibility that this drug is destroying my liver (since I was on liver-killing anticonvulsants my entire childhood and I took liver-altering chemo as well) have not stopped me from thinking the drug in some ways has saved me.
In a sense, Lexapro made it possible for me to help myself in other ways. At the same time, I started going to a trauma-based therapy practice—the first time I have ever found therapy to be useful. This was after I read an article about trauma-based therapy and saw that I had not one or two but at least five different categories of things that qualified me. I also decided to stop drinking, and I never even drank much. I did all of these three things at the same time. And I came to realize that I had been living under a continuous haze of PTSD, not since cancer—for probably at least 30 years. Do not think I am being dramatic or seeking sympathy. I have learned that coping mechanisms are just that—they can be extremely positive. I have learned a lot of things about myself now that the chemicals have released me from decades of constant agitation, anger and furiously-driven purpose. I have been able to sit back a little, and reflect.
I will write more about all of that in another post. Today, however, I want to talk about something else. And I haven’t written in a long time, so it will be a long one.
The last week has been filled with the same public insanity and inanity that has become our common culture. The person who is representing our country to the world berated an entire continent and two unrelated countries, all of which are populated by mostly black and brown people, as shitholes, while opining about Norwegians helping him fulfill his Aryan race fantasy. At the same time, the #metoo movement collided with the equal pay movement in an absurd situation in which one male actor made $1.5 million while the leading female actor in the movie made $1,000 for a reshoot that had to take place because one of the other actors was a pedophile and sexual predator. The male actor waited for all of his coworkers to make a deal to get the project completed, threatened to refuse to “authorize” the use of the replacement actor who could wipe the floor with him from an acting perspective, and then negotiated his deal. That guy also, incidentally, has a past history of violent hate crimes against black and Asian Americans.
Welcome to America.
I have been involved in multiple social media discussions about both of these issues. Until reading a recent piece in the Washington Post, I could not exactly put my finger on what bothered me so much about the confluence of these two events. One has a much greater global impact, obviously. They seem completely unrelated. So what did I see in these events that brought out some of the old anger that had driven me my whole life, until I got this short reprieve?
It is the way we reward terrible behavior—not the way we forgive it, or look past it, but the way we reward it.
We really only do this with white men, as a rule, but it is that which infuriates me. I have listened to so many (usually men) tell me that an actor who uses others’ generosity to get something for himself is just a good businessman, that his manipulation of others’ goodwill is nothing but a pointer to how weak and ineffective and stupid the people (women, often) on the other side must be. We have to hear our political leaders defend the indefensible by saying everyone talks that way, which is not only not true, but even if it were, is not something to find admirable. An actor, I should understand, is not working for a charity project, or a nonprofit organization (and always the sneer that I hear, and have always heard, including in my professional life, when people say “charity” and “nonprofit”). People need to make money, Katy. And, apparently, people who are mediocre need to make 1,000 times more money than every single one of their co-workers, or they need to become president—not because they deserve it, but because their lack of deserving it and asking for it anyway somehow MAKES THEM DESERVING.
We did not elect an unrepentant racist and white nationalist to our highest office by accident. We did not put a serial sexual predator, a noxious misogynist, a toxic xenophobic, in the Oval Office because we as a society looked the other way. People ADMIRE those traits about the current president. The worse he reveals himself to us, the more there is a subset of society—or maybe a bigger part of it than that—that is thinking, this guy is so bad, it must mean he’s better than the rest of us, because he’s getting away with it.
He profited off of the foreclosure crisis and discriminated against minority buyers—he’s a shrewd businessman trying to get his! This other guy asked for a pardon of his detestable hate crimes so his restaurant business could be more profitable—you can’t hold that against him! Their total lack of concern for other people or how their actions impact those in close proximity to them cannot be—gasp—used to form negative attitudes towards them or think they are terrible people. Of course not! We can only use past incidences of rich white men being terrible as a way to slyly laugh about them and denigrate their accusers and detractors.
It is not only not acceptable to formulate negative opinions of (certain) people who have done selfish and destructive things—we seem to have a masochistic need to reward these people/often men. We promote them. We elect them. We defend them, when they don’t deserve it. We see a man treating people horribly in the office and decide, well, he must have some leadership skills! We put narcissists in charge of the courts, brutes in charge of companies, corrupt sycophants in charge of large school systems, psychopaths in high offices.
And even that is not enough. We have to--to justify this--denigrate people who object. People who work together or forgo salary in a collaborative moment in response to a terrible situation are idiots, weak, losers, they have no idea what they’re doing and they make terrible decisions. People who decry the depravity and sophomoric language of an abusive and racist blowhard are lazy, out of touch, liars, and in denial about their true feelings.
What is required of detractors, apparently, is forgiveness—we must forgive all of these men their sins, no matter how destructive, violent, abusive, selfish, or impotent their actions are, we must forgive. In fact, the worse the behavior, the more we should praise them, because look how far they’ve come! They’ve made a lot of money, gained a lot of influence, they are laughing all the way to the bank! Well, of course they are—because we are driving their Uber to the bank for them and thanking them for the privilege when they stiff us as they flee the car. We are rewarding them for being terrible. And you know what? We should stop.
There is no situation in which you are successful, or happy, or healthy, that should bar you from thinking about other people and, yes, even putting them above yourself. There is no situation in which you are unlucky or suffering in which you should get a pass for using that bad situation to make things worse for other people. And there is no world that I want to be a part of where charity and compassion are four letter words and greed and egomania are blessings.
I’m sure, like many things I’ve written here, this seems like a long diatribe of seemingly unrelated words that I’m using to denounce perceived injustice. And that’s probably true. One thing I have learned about myself from therapy is that it is, actually, difficult for me to feel certain things; this includes the fact that it is difficult for me to feel that my problems matter. I have written for years about cancer without really writing about it, I’ve used this forum as a way to write about social injustice issues that matter to me. I have used my experience to illustrate my points because that is actually how I view my own experiences—as objective examples that are useful to make a broader point. You might have noticed that in all of these words, there is not a lot about how I FEEL, but a hell of a lot about what I THINK. Such is the nature of the person I have become.
And why the preceding paragraph? Well, because I am going to do what I do. I’m going to use a personal story as an example of why we should not reward selfish behavior.
As a kid, as you all know, I had epilepsy. To make a long story short, when I was 8, a doctor whom I now believe was somewhat of a sadist, kept me in the hospital for a week doing tests on me like a guinea pig because he would not admit that my body was having a toxic reaction to my toxic medication. That whole story is for another day. Today, for the first time, I can say something about one of the most traumatic things that happened to me due to my chronic medical condition as a child. I am convinced that children with such conditions learn early to disassociate themselves from their bodies (and not, necessarily, in a bad way—again, that is for another post) because they are forced to relinquish control of their bodies to adults and agree to do absurd and painful things. In this instance, my neurologist decided he needed to give me a barium enema, to try to diagnose an abdominal condition that he most likely knew did not exist.
I was 8.
If you aren’t aware of what this procedure is, it is a large amount of barium inserted into your rectum. I might have weighed 40 pounds when I was 8. To get the procedure, I was put into a communal room with others who were having barium enemas, separated only by hospital curtains. Two adult women were before me. I sat there, patiently, listening to them screaming from the pain of the procedure. They both just screamed and wailed. I knew that what they were experiencing was coming for me, with no way to prepare myself for the pain, and the disadvantage of being a quarter of their size.
Then, it was my turn. The pain was so, so unbearable. It took my breath away.
And I did not utter a sound. I did not even cry, except perhaps silently.
I told my therapist this story, because I thought it represented something about the way I have handled things in my life—for better or worse. But then she asked me a question that took me by surprise. She asked me how it made me feel. How what made me feel? How the women screaming made me feel. I could tell, when I answered and saw the look on her face, that she had expected me to say “it terrified me, it made it so much worse.”
Instead I said: it made me so fucking angry. I could not believe they could be that selfish. How could they scream like that, knowing other people , including a child, were about to have the same procedure? How could they be so focused on themselves? I decided right then and there I would never be like them, that I would never be that person.
I am not here to say whether or not my reaction was the right one, or a healthy or normal one. I don’t know and it doesn’t matter. I do know this. Decades later, when I was getting chemo for my second cancer, and a woman who had refused to get a port even though she hated needles was screaming bloody murder about their IV attempts and causing a huge scene, I remembered being 8 years old. I got up from my chemo chair with the needle still in my arm and wheeled my IV stand over to a nurse. I told her to get that woman the hell out of the communal chemo area. Give her her own room. Make her family of 7 leave (most people were there with no one or one other person). I was furious. I said, I have done this 15 times. But other women here have never done this. They are already terrified. She has no right to be here, getting special attention from four nurses, while other women are silently enduring her screams, imagining how awful chemo will be.
She has no right.
And she didn’t. and he didn’t, and he doesn’t, and he doesn’t. We must stop rewarding people for being self-absorbed and injurious to other people. We must start rewarding people for being thoughtful and empathetic, for thinking of others first. And if we, as a society, cannot do that, then we, as individuals, had better get up out of the goddamn chair and say something.