Tuesday, February 11, 2014

Day 1,334: Choice

I have been thinking a lot about the concept of "choice" recently. We are bombarded nearly every day with this concept, with this notion that life is just a series of choices that are laid out before us, and the content of our character can thereby be judged by whether or not we made the "right" choice.

The thing is, I think that the whole concept of choice is actually just privilege in disguise.

When we regard our privilege as a choice that we deserve, we cause all kinds of problems. We begin to believe in the concept of meritocracy, wherein everyone gets what he or she "deserves." We take advantage of social institutions when it suits us and then decry every other institution as an affront on our free will--schools, hospitals, governments, banks.

Let me just say right now that I am a supporter of institutions, of society. I am not a person who believes that the family is beyond reproach, because I know that not all people come from functional, non-addicted, non-abusive, comforting, intact loving families. Some people's families are the cause of the majority of their problems. Some people are destroyed by their families, by their churches, by the very places and people whom society pretends are intended to protect them. And this does not just happen to "other" people. It happens to us, to the people we know and love. And so there is a place for institutions, a place for spaces that exist to help people who need it, especially when "choice" is not choice at all.

If this all sounds too obtuse, let me give some examples. When I was in college I took part in an Urban Studies Program in Chicago for a semester. One of my classes was "Women in Health." It was mostly an experiential learning class, wherein we visited women's shelters and other places and learned about public health issues affecting women. I felt guilty in this class all the time, because I often felt angry. It took a while to figure out why. We were being "exposed" to this life that we supposedly knew little of, this life that included poverty and a lack of health care options. We were supposed to think about how lucky we were in contrast--we were not supposed to RELATE. One day, we were being lectured by a midwife, who was teaching us about natural birth and all the wonderful "choices" that the evil medical establishment didn't want us to understand. She said we should think about birth options the same way that we chose our respective colleges--based on what was best for us and what fit our value system. At that point, I felt the need to challenge her deep in my 20 year old bones. So the following conversation ensued:

K: Well, I don't know about that. I didn't choose a college based on what was best for me. I went to the place that gave me the most money. I didn't even visit it first.
M: Well, um...
K: So, how many women do you serve every year?
M: Well, about 100.
K: Huh. Thousands and thousands of women give birth in our hospitals in Chicago. And do you accept everyone?>
M: I'm sorry?
K: Do you accept everyone? What about me? I had epilepsy as a child, which is a preexisting condition and can come back at any time. I am considered high risk for a lot of medical procedures. So, could I give birth with you?
M: No, I'm sorry. We aren't equipped for that. You would need to go to a hospital.

Do you see what I mean? There is choice, if you are privileged enough to enjoy it. I was not angry that this woman was a midwife, and I do not have any problem whatsoever with people's various childbirth decisions. But not everyone is OFFERED the choice, and I did not like the assumption that everyone in that room had the universe of choices available to her, when I knew that I did not. Not everyone has access to choice; just having that access is a privilege. At the time I took that class, it was difficult if not impossible for lower-income, black women in particular to get any information about breastfeeding, for example, from hospitals, lactation consultants, or anyone else. And such women's jobs were not easily conducive to the practice anyway.

The same issue about choice is true in so many situations. I told myself, when I escaped a threatened gang rape by 10 boys when I was 15 years old, that I had "chosen" not to drink, and that was why I got away (though of course, I didn't really get away, not in the clean sense of the word--a lot happened to me before my escape), and why I had to help the next girl, who was too drunk to "choose." But there was no issue of choice in that scenario. There was nothing but dumb luck, and defiant bravery, and trauma that lasted for years. My choice had been removed by others who were making a sadistic one. Those boys held the privilege and the choice, not me.

Or let's think about school. I was a "gifted" kid before that meant too much in the larger culture. I had gifted programming for one year in grade school, and was one of a handful of girls who got sent to the high school for math in 8th grade. Much of the curriculum was slow for me, I suppose. But it never even occurred to me to act out, or be bored, or challenge the teachers. My mother always told me that I had no right to boredom, no right to believe I was entitled to people catering to my desires. And so, I learned some things. I learned that other people were better than me at things. I learned to fill in time, learned to overcome my shyness by socializing with everyone, learned to place myself amongst people and figure out what I could contribute versus what they could contribute. School was not about "choice," not about discovering what I liked to learn versus what I believed to be a waste of time. It was about placing my own priorities inside a social context of everyone else's priorities. It was about learning to follow rules, and eventually, learning to break them, but only after earning the privilege of knowing I wouldn't get in too much trouble in the process.

Why am I writing about this? Well, because in the context of breast cancer treatment, patients are faced with a litany of supposed "choices." But in reality, our choices are extremely limited, especially those of us with aggressive forms of the disease for which there are few options available. What's worse, there is so much publicity of the disease that everyone is an expert who can question our "choices" and judge us on the basis of them. Here is what we know: having a healthy lifestyle can decrease the risk of contracting breast cancer. It should be noted that having a healthy lifestyle decreases the risk of contracting many diseases, if not all of them. This has nothing to do with prevention--it is simply a reduction of potential risk. No medical professional would ever profess that being healthy means you won't get cancer. Moreover, women are told they can "choose" what surgery to do, but many women make surgery decisions with little or no information to go on, and even those who make very informed decisions are judged by everyone and her mother, other breast cancer patients included. And these are just a few examples.

But there are so many choices we cannot make. We cannot go home, cannot go back. We cannot avoid our own emotions, or the lack thereof. We might "choose" a chemo regimen to some extent, but we can't choose what it does to us, we can't decide whether or not it will work. We can choose to exercise like mad, just like we did before we had cancer, we can choose to be skinny and fit and terrible at vice and cancer might come after us anyway. Those who judge, those who have advice, also have privilege. They have the privilege of health, of not being us.

We are lacking that privilege. So what is choice in this scenario? What are things we can choose?

Well, to some extent, we can choose only one thing: to be ourselves.

Some of us will be paralyzed with fear, some will be filled with optimism and vim and vigor, some will want to cry and be unable to do so. People have remarked to me that I deal with illness (and maybe other problems too) differently than other people. I just keep trucking. I just keep doing almost everything that I did before, even if it makes no sense at all. I have never thought of this as a coping mechanism, or a "choice." What choice did I have? I had 100 seizures a day when I was 6, I lost the ability to walk at age 9, I faced my mortality and the notion of bad luck and circumstance way back before I understood that other people could choose not to think about such things. My mom called me a "trooper," but I never felt like one.

I never felt that I had a choice. I never felt that health or physical ability were natural and assumed--they were privileges, and they could be taken away or lost. And that did not mean that I should be lost. Circumstance and fate were just that--they were not reflections of ME and my worth.

The extent to which I have felt fear with this recurrence is muted. As my husband told my ob-gyn today, "I think she has cried for a total of 5 minutes during this whole ordeal." And I said, I don't cry. I wish I could, but I can't do it. Gabe said I was like a rock. My doctor had just interpreted my ovarian ultrasound results as "normal," as the huge cysts I had at the time of my D&C have disappeared, though I still have one smaller cyst that is apparently of the type that exists in many healthy women. He sympathized with me when I talked about the ordeal of spending an hour to have the port and tube removed from my adjustable implant (a procedure I would have liked to have done immediately after surgery, but I wasn't allowed to, given the healing process and then chemo). Gabe sat with me through it all, though he didn't look until the end, when I had to look as well, and see the gaping hole under my arm and the blood that was just EVERYWHERE. I told the doctor I found such things to be oddly fascinating, though it hurt like a bitch today. I complained about the nearly 10 pounds I have gained on chemo. He looked me up and down, told me I looked better than ever, that he loved my hair, that I was dealing with all of this better than anyone he knew. He saw Gabe tearing up and said he was the one who needed help. Gabe laughed and said no, I have got to be strong for them! And my doctor said that I could choose to worry all the time, I could choose to try to change everything in my life to conform to what other people think will cure me, I could go online and look up all kinds of statistics, or...I could just keep doing what I was doing.

Therein lies the choice. You could be a "normal" doctor, who would never say such things to a woman. You could lord your medical knowledge over her, use the privilege of your own health to give her advice. Or you could choose to be much more human, and shake your head and say, no one should have to deal with this shit. It's hard on your whole family. You didn't deserve this. You should just keep looking forward. You are doing great. If you are a certain type of person, you would be slightly "inappropriate," and hug the woman for a long time, punch her husband in the arm, and tell him:

They don't make them like her.

And if you are the woman in question, you could shrug your shoulders and look away embarrassed, but in some secret place in your heart you can choose to actually believe him. And maybe that's enough.

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