Posts Tagged ‘cancer’

It has been a while since the subject of cancer filtered into a conversation at the prison. A while since what was being discussed around the table made me think back to my moment of diagnosis, my first appointment with an oncologist, my trip on a gurney down a hospital hallway to an operating room. It has been five and a half years since my diagnosis. The memories, fears and worries do not plague me in the same way they once did. My experience with cancer always inhabits my thoughts, but more and more, thankfully, it hovers in the background, unobtrusive and no longer distracting. There are days I don’t think of it at all—like an ex-boyfriend one swears she’ll never get over, but then, one day, finds she has. Time, it turns out, doesn’t heal all wounds, but allows them to scab over, scar and become a part of you. A part you stop noticing in the mirror each and every morning.

Sometimes, though, the memories return fresh and strong. This happened during the last class at the prison when the guys offered up their stories of what it was like the weeks or days before they started serving their current sentences. The question specifically was: what did you do to prepare for this part of your journey? As teachers I think we expected responses about saying goodbye to family, spending time with children, making love to wives and girlfriends, visiting favorite restaurants and eating favorite meals, and taking long walks for as long as one wanted to walk. Our expectations only turned out to prove there is still much we have to learn about this experience called serving time.

Turns out, one doesn’t often get a chance to prepare for serving a prison sentence. One student did say something along the lines of, come on now, if you’re out in the streets doing dirt you always know you’re going to end up here. His argument being, if you are doing things that might get you arrested you would be wise to be prepared to go to prison any day. But beyond that general truth (Which reminds me of the saying: live every day as if it is your last. Good, but not necessarily practical advice.), it turns out most of our students were simply going about living their lives at the time of their arrest. They were not prepared. They had not discussed it with their families. They did not remember to do something they loved every day just in case tomorrow was the day they got caught. And once they had been arrested they stayed in jail until their trial was over, received their sentence and then went straight from jail to prison. There was no “time out” in the free world to prepare for the journey to prison. They were in their lives one day, and on their way to prison the next.

Cancer was like that for me. One moment I was a twenty-seven year old organic farmer living a fairly hippie and healthy lifestyle, the next moment, at 8am on a random Thursday, I was a cancer patient. I wasn’t sick. Then I was sick. In less than a few ticks of a clock. With only a few words from my doctor over the phone. Like the students in my group, I had to come to terms with my new reality after I was already existing within it. There was no considering. No trial period where if I decided this cancer business wasn’t for me I could give it back. People sometimes still ask me: don’t you feel like cancer taught you lessons you might not otherwise have ever learned? Maybe. Sure. What? I’ve never been one of those survivors to say after the fact that I was thankful for what cancer taught me. I learned the lessons I faced because I had no choice. But I would have taken them any other way. Without a doubt. I would have taken continuing to live my life in cancer-free bliss, saving the lessons for another day. I would have spared my family the months of fearing they were going to lose a daughter, a sister. I am not comfortable trying to package cancer up in a shiny bow of subversive self help. An unexpected path to enlightenment. It’s cancer. It can kill you. It could’ve killed me. Someday it still might. I would rather not have had it. That’s the truth.

There are experiences in life which change us profoundly. Rearrange our literal and figurative guts, redefine who we are, present us with questions we must answer whether we want to or not. How will you spend your time now that you’ve been sentenced to it? What is a life worth with a 50-year sentence? How do you want to die? These are not experiences you prepare for. They catch you by surprise. They are not a gift. They might have been inevitable, and maybe some part of you always saw it coming, but, you don’t prepare. Even if you could, what would you have done that would have made it any better? How many times could one of our students hug his children before going to prison to make not being able to hug them for years any less of a burden to bear? What would I have done the day before my diagnosis to feel alive that would have lessened my awareness of death the moment after my diagnosis?

What our conversation with the guys about preparation—or lack of—for entering prison reminded me is many stories start with the unexpected and the unpleasant. This does not mean there is no point to the story, but it can mean the point will take some time to find. And once the point is found it does not mean you have to be thankful for the journey. I don’t expect the men in our group to be thankful for 20, 30, 40 years behind bars no matter how much they change and grow into better men while serving their sentences. I do not expect cancer victims to be thankful in some way for their cancer experience. Such expectations are what those not walking these particular journeys want to hear to make themselves feel better about another person’s suffering. We wanted the guys to tell us they made the most of their final days in the free world, that they noticed how the air smelled and the way their wife smiled for what felt like the first time in their lives. We wanted them to say they were thankful in some way for the journey they were about to embark on. That they were ready, accepting and determined to make the best of it. It would have made us feel better to hear these things. The fact that they looked at us and said, “Why would you think we had a chance to prepare?” and, “How would I have prepared exactly?” was beautiful. It taught me what I had learned once with the cancer, but apparently forgot: there are some things in life you simply have to endure and survivor. If you come out on the other side a better person, well, then, as some say, there go I but by the grace of God.

One of our group members wrote me a long letter and handed it to me with a couple of poems. His hope is that we might be able to exchange letters via the group, but it is against the rules for volunteers to correspond with prisoners beyond the scope of the group. I am going to have to tell him this (he knows the rule, but is hoping we can work around it) and tell him that I won’t be able to write him letters in return. I’ve been thinking about his letter for a couple of weeks now, wondering if I should respond anyway, screw the rules. But I don’t want to be responsible for getting the entire group in trouble – one misstep by a volunteer can get our whole program shut down. I’ve been thinking about all that was in his letter – his thoughts on death and disease and questions to me on the same subjects. His thoughts on Washington’s recently passed assisted suicide bill. His thoughts on life after death. Of course I want to respond!

 

So, I decided that in lue of writing a real letter to Bill, I could write a letter and post it here. Readers of this blog won’t get to see Bill’s letter, but you’ll be able to infer their content from my response.

 

It’s crazy to me that I can’t write to a man serving a life sentence about life and death, regardless of the fact that he knows me as a volunteer. It seems counter-productive to his health and wellness on the inside and, for that matter, to my health and wellness on the outside. But then, I don’t know that anyone is advertising the US correctional system as an advocate for health and wellness.

 

*******

Dear Bill,

 

Thank you for your letter. It is timely for one main reason. This week I had to go back to the hospital for a follow up CT scan. The doctors have been watching a small spot on my lung for about nine months now, most likely nothing, possibly metastasized cancer from my original melanoma, possibly…well you know how it is. So, your questions about life and death and disease are weighing heavy on me this week.

 

I am lucky in that I did not have to ever have an Interferon treatment. I am sorry that you had to go through it. I hear that it is pretty terrible and your story confirms that for me. The doctors had told me I would have had to most likely drop out of graduate school if I went on the treatment. Imagine. I wouldn’t have met all of you in our Hero’s Journey group. I understand that it must have been difficult to choose to stop the treatment, regardless of the side effects. We all hope that there is indeed a miracle cure for the diseases that ail us. Alas, sometimes you have to consider quality of life over quantity of life. At least in my humble opinion. I can understand why your brother would have been upset with you. Disease is difficult on family for many reasons.

 

I can’t imagine what it would be like to have spent 32 years in prison already and to know that you will spend the rest of your life there. You write that the prison hospital is no place to spend your final days and that is why you have considered, when the time comes, taking your own life. I would never try to sway you one way or another, but I do believe strongly that how we die, when possible, should be up to us. As I said in the group the other night, if it is true we are all going to die, then shouldn’t there be some respect and dignity in the act itself? So much of our culture is about denying that we will die that everyone is so unprepared (I’m thinking of family and friends) when it does ultimately, and predictably, happen. That just makes it harder for everyone, I think.

 

Because I was so young when I was diagnosed with cancer the whole idea of death and how I wanted to die took me by surprise. I hadn’t, honestly, had to give much thought to it at 27. People tell me that it’s unfair that I had to deal with cancer at such a young age. I don’t know anymore if that is true. I certainly felt that way in the beginning, but now, on the good days, I think that maybe I am lucky to have had a brush with death so early as it allowed me to begin to ask some of those big, complex questions. I feel like I have time now to really decide what is right for me should I ever get sick again, or even what is right for me when I am old and grey and approaching my final days.

 

I do envy that you have found a spiritual path that calls to you. My own spiritual life continues to more of a mystery. I think I am more spiritual since my experience with cancer (how can you not be, right?), but I still can’t bring myself to look to any particular tradition to tell me how I ought to live (or die for that matter). I would be interested in hearing more about your walk with Buddhism.

 

I have a friend who believes firmly that it is my own thinking on the subject that will have the greatest impact on whether I stay healthy or not. He’s an eternal optimist. And while I’m not a die-hard pessimist I have a hard time always holding on to what he’s saying. Can you believe you are going to live and stay healthy, but still consider death without canceling out your “good” thoughts? How practical do you have to be about the limits of the body – particularly when your body has already exposed its weaknesses to you? I’d be interested to know what you think (if indeed you were to ever see this question).

 

So, Bill, this is long enough for now. I feel like I’ve only begun to touch on all you put in your letter, so perhaps I will write a second letter soon. I’m sorry that we can’t actually exchange letters. I’d be interested in hearing more of your thoughts on these subjects. I’d be interested in your stories from prison and before prison.

 

Thank you reaching out. I wish I could reach back.

 

Sincerely,

Erika

 

A twenty minute ferry ride doesn’t seem like nearly enough time tonight.

 

Perhaps because it’s been more than a month since I’ve been to the prison, which is enough time to gain some distance, even, maybe, to forget a little. Life out on the outside is busy and full and though the men at Monroe are a part of my life now, it doesn’t mean that when I am gone long enough they don’t fade away a little. Only a little. But enough that when I go back after an absence the intensity of working on the inside comes back quick and hard. You get used to how protected life on the outside is, how we don’t ask the hard questions of one another, how easy it is to conceal and hide what we don’t want to discuss, how politeness dictates what we do and do not ask about one another or of one another, how our concept of time is endless and loose and even idealistic and so we are in no rush to talk about what is tough.

 

Perhaps twenty minutes also doesn’t feel like enough because tonight the opening question to the group: what have you learned from a time you faced death, danger or defeat? initiated a conversation about death, choosing to die, death in prison. One member of the group shared his experience with liver cancer and nine months of Interferon treatment. The same treatment I would have faced had my own cancer diagnosis been as worse as originally feared. He shared how he choose to stop taking the Interferon, despite the doctors wanting him to stay on it another thirty six months. Thirty six months! I was flooded with memories of listening to my oncologist tell me about the side effects of Interferon (including depression, suicidal inclinations, general inability to get up and do much of anything, the reality that I would have to drop out of grad school) and the small percentage it might add to my survival rate. I don’t blame this man for stopping treatment. I was undecided about even beginning it. Next month he will find out if the nine months he suffered through had any effect. If not, he likely has less than two years to live. His statement to the group: maybe it’s not so bad. I don’t expect to ever be paroled (he’s already served 26 years) and I don’t want to live another 26 in here. It’s about an honest of a statement someone can make, and it’s a statement that only someone who has had to face the question of quality of life when faced with limited time can truly even ask. When the question is no longer theoretical, but reality, you are surprised at the answers you come to.

 

Then a man in the group asked me, what did I think about choosing to die? And I found myself talking about how we don’t honor the process of dying well in this country. We fight death to the bitter end, and I wonder what sort of dignity there is in that sometimes. How often do cancer patients hear, you have to keep a positive attitude, you have to keep fighting. Yes and yes, to a point. At some point there is also dignity in facing death as the inevitable and natural process that it is (even if it has arrived much too early and without consideration for your plans and schedules, hopes and dreams). There is strength in not fighting, but rather living your final days as well as possible. To deny someone facing the end the right to talk about their death, to insist they keep fighting, where is the dignity in that? If the man with the liver cancer finds out he has two years to live and that is a relief to him, then let him be. I found myself saying to the group that it is a question you have to answer alone, and I imagine that you feel even more alone if you are asking the question in prison, but the truth is no one can go there with you, no one wants to support you in letting go, no one wants to say goodbye, no one will give you permission.

 

I have been thinking a lot about cancer and prison and tonight reinforced some of my thoughts about how the two are connected. Being given a “sentence” can take many forms. And whether you are physically behind bars or emotionally behind bars, the truth is, you are alone to face the darkest parts of yourself. Neither journey is for the weak.

 

And now the ferry is docking already. Twenty minutes, gone like that. It was good to be with the men tonight. I can’t thank them enough for asking the hardest of questions and then waiting patiently for me to respond. I can’t thank them enough for how they remind me that story telling and story sharing is what reminds us we are all human and we are all going to die, despite our crimes or our good deeds.

 

 

Stereotypes are used by a speaker to position others within a particular storyline. — Perry R. Hinton, Stereotypes, Cognition and Culture

Nine months ago prisoners, prison and teaching on the inside were not a part of my personal story. My particular story line up until March, 2007 included many things — being a doctor’s daughter, a graduate student, a female, a writer and a cancer survivor. It was already a full life. Then I went and made it more complicated by taking something that I could keep simple if I chose — namely my ideas about who was good and who was bad — and making those ideas more ambiguous, making them something I had to reconsider, reflect on and incorporate into a new personal narrative.

In Hinton’s book she writes about how one of the only ways to change a stereotype is to bring two different groups together and have them interact. The basic premise, I think, is once you’ve looked someone in the eye it’s harder to look away again. And once you’ve heard his story, even if it includes terrible and/or criminal things there’s no turning back from the fact that they’ve become human, less a stereotype and more an individual.

This is a good thing, right? Most days.

Somedays, however, I think it might have been easier if I had chose to keep my story more simple.

But then I think of the cancer. Some experiences we choose to add to our story and some we do not. Regardless, we change. You survive cancer, but you don’t go back to life before cancer. I may someday not work with prisoners, but there’s no going back to not knowing who they are, not being able to imagine a man in a cell alone with his transgressions and the pain that can cause for some. For enough of them.

When people find out I have had cancer they think they know certain things about me. They assume they know a part of my story. But they don’t. Not until they sit with me and listen. Then, I’m not a cancer survivor, I am me, with my experience of cancer, which is different than any other’s cancer story. These men in prisoner, they are not a “they”. They are individual men with individual stories. The stories aren’t the easiest to hear or the easiest with which to make peace, but then what good stories, what good life, gets to claim it was easy?

We all have bars

Posted: October 15, 2008 in prison, general
Tags: , , ,

It’s always amazing to me when someone points out a connection between two significant things in my life, which I never saw before. In this case, being a cancer survivor and working with prisoners.

Last week I was at my first retreat for cancer survivors. Not typically one for those sorts of group-hug, make-yourself-vulnerable sort of experiences I came close to cancelling my reservation a half-dozen times. If one of the coordinators hadn’t included one of my favorite poems at the bottom of one of her emails I probably would have cancelled. But, like a good writer, I took the poem as a sign and went.

It was during the opening circle (see it even sounds group-huggy!) one man said that he worked with prisoners and realized that those dealing with cancer and those living behind bars share some similiar experiences. The one he identified in the short time he spoke was that he found prisoners, like cancer patients, are capable of being brutally honest. Perhaps it is the realization by both groups that time, free time, is precious and so we don’t see the point in wasting it by talking about the same old, expected, comfortable b.s. We’ve got big questions to ask. Who am I? Who do I want to be? What’s the point of my life? We want to talk with others who aren’t afraid to ask those questions.

A cancer diagnosis thrusts a person right up against her mortality. Prison does the same. Perhaps that is why I find my time at Monroe so rich. I constantly find myself saying to others, “The guys are just so honest. I can’t find that on the outside.” 

As I thought about what the man in the group said over the past week I would add to his observations that both cancer and prison preclude ever going back to “normal” — whatever that was. Before the doctor gives you the diagnosis you are one person, afterward you are another. The men at Monroe will always be prisoners, even when they are released. You go to prison and the outside world will never be the same. What’s more, you will never be the same in it. You know something about life that so many others never will. You have survived something that many others will never even have to think about.

I think most cancer survivors can relate. I know more than once since my diagnosis I have felt like I was looking at the world from some place outside of the normal world. From my own box, with my own walls and bars. I felt handed a sentence. I felt the responsibility of it, as well as the resistence to it. And until you’ve been in there, you just can’t know what it’s like. You can’t imagine. I realized, being at this retreat, that it is important for me to connect with other cancer survivors. It’s like connecting with other writers. They speak my language, they get my humor, they share my fears, my anger, my questions and my joy.

Doing time, I suppose, isn’t only restricted to those guys up at Monroe. I wonder if it’s possible that my cancer diagnosis helped to do away with my fear of going to Monroe to do the work I’ve been wanting to do for so long. What do I have to fear? Really? My only real fear now is that I’ll waste what time I have, and I refuse to do that. So I go where there is real, honest conversation. I go where people have been to or at the edge.