So, if you want news about other stuff going on in the state's criminal justice system this month - news that's likely to be out there already - Google it, and email me the link if it's something you think urgently needs to be here. I'm otherwise going to be occupied trying to keep up with what has become a flood of prisoner correspondence, most of which are desperate men pleading for help just surviving sentences for drug and property offenses. Others are working more with the women - they haven't been forgotten. The day to day struggle of these prisoners and their families are my first priority, not my blogs. My blogs are just tools to get the prisoners what they need, anyway.
That said, this reprint of Sue Ellen Allen's 2009 prize-winning essay "Fear", seems an appropriate way to kick off the month. Find her and support the work she does with GINA's Team.
Someone told me there are 365 references in the Bible to fear. Basically, all of them say, “Fear not, for I, the Lord thy God, am with you.” So, with my faith that I treasure, why am I afraid, always afraid?
It started in Estrella Jail where the incessant noise, violence, hostility, and indifference overwhelmed me. It is a hellish place for a healthy person. Everyone is in black and white stripes and the conditions breed anxiety and stress. There are rules you don’t even know about, and one hostile officer who is having a bad day can make yours miserable. I was brought up to respect authority and obey the rules, but these girls have no respect for anyone and will “go off” on anybody . . . inmate or guard. There are lock-downs. There is pepper spray. There are brutal searches by the terrifying ‘men in black.’ Why? Fights, drugs, who knows? I try to stay in my corner bed and read, read, read so that my mind can escape. The noise continues nightly until well past 3:00 a.m. and I long for silence. There is no silence. Instead, they yell at each other to be quiet. “Shut up.” “No, you shut up.” “Shut the f—k up.” “No, you shut the f—k up, bitch.” And so it went, night after endless night.
I guess it could be funny, but I left my sense of humor at the Horse Shoe, at the Madison Street Jail where I was processed. Thirty-six women were squeezed into a 10’ x 12’ cell with literally no room to sit down. Using the open toilet in the corner meant climbing over tangled bodies while you tried not to kick someone accidentally. Privacy was non-existent. I was there for 12 hours. Then, because I was sick, they moved me to a 6’ x 6’ cell with a blessed, filthy mattress. Oh, bliss. I didn’t sleep, but I was able to lie down. I had been up for 36 hours and had only baloney sandwiches to eat. I felt exhausted, unbalanced, and terrified of this weird netherworld where I’d landed. In the hall, there were two men with mesh hoods on their head, strapped to strange looking chairs, screaming and swearing at the top of their lungs. Doors clanged all night and I lay on the floor on the filthy mattress and shook and prayed. Where was God? I knew he was there, but I couldn’t hold his hand or feel his arms around me. I have never felt so alone.
About 10 hours later after processing, I was handcuffed and shackled for the ride to Estrella. There I was fingerprinted all over again and had my first strip search before donning the famous stripes of Joe Arpaio’s infamous jail. Then we were led down the hall, dropping off women at various dorms. Mine was last. It was July and I could feel the heat conquer the air conditioner as we walked towards the last door. A blast of hot air and noise took my breath away as I walk into “the slumber party from hell.” But, even here in hell, there is kindness. A very young girl helped me find my bunk and made it for me the “prison way.” (You have to tie the sheets at both ends so they won’t slip off the skinny, plastic mattress.) She showed me the ropes and made sure I was okay.
Okay. How could I be okay? I had no idea what to expect and no one to ask. I alternated, first shaking and then breaking out in a cold sweat, my heart racing. I later learned that these are panic attacks. I’d never had one before. I’d never seen people treated like this before. Many say they deserve it. Maybe so, but it seems to me if you take a dog and put it in a cage in the back yard, give it really bad food, yell at it all the time and kick it a lot, and then in a year or ten, let it into the house to play with the children, you’re going to have a very angry, very confused, very frightened and hostile dog. That may not be a proper psychological analogy, but that was what I saw around me.
After living in this nightmare for two and a half months, on September 26, at midnight, I was handcuffed and shackled and taken in a bus with 49 other women to the old jail where we sat from 2:00 a.m. until 4:30 a.m. in the old morgue, a big windowless, dirty concrete room with an open toilet on one wall. There are no chairs, just the floor that is so cold it feels like an ice rink. There are little roaches everywhere, despite the cold, which you think would discourage them. Some women sit, some lie down, some pace despite the shackles that cut into your ankles, all waiting for the door to open at 4:30. Then we are given a sack lunch and moved upstairs to the old condemned cells, 8’ x 16’, four metal bunks, and one open toilet. There are 10 women to a cell. Here we wait some more and try to eat the horrid, nutritionless meal. Two pieces of baloney, six slices of bread, one orange and one small box of blue Kool-Aid. This is the only food we will get for 12 hours or more. It is still freezing. We shiver, we pray, we talk, we shiver some more while we wait for the dawn.
All of these women are going to court. Not me. I am going to Maricopa Medical Center for a mastectomy. I’m not supposed to eat. I just wait and pray. I think my surgery is scheduled for 9:00 a.m., but instead, that’s when they come for me. At the hospital, no one tells me anything. I am locked in a room alone, freezing. I ask for a blanket. No, they snarl. Why is everyone so nasty? Finally, about 3:00 p.m., a female guard comes to tell me they had an emergency but I’m going soon. I haven’t eaten in 20 hours, I haven’t slept, I’m freezing and facing surgery alone. I am afraid.
There is no one to hold my hand or comfort me or pray with me. There is no kindness. When I change into the surgical gown, I see myself in the mirror for the first time in more than two months and I don’t recognize me. I’m 15 pounds thinner, nearly bald and very pale. Who are you? Maybe it’s not really me. Maybe it’s a nightmare.
Five days later, I am back at Estrella. No one has touched me except for the surgeons with their knives and the nurses with their needles. The surgeon finally comes to tell me my margins weren’t clean. I’m due for chemotherapy and maybe more surgery. Three months later, I am sentenced and the judge expedites my move to Perryville Prison because I still have not had any chemo. It was supposed to begin in mid-October, but the jail has delayed it, hoping to get rid of me and save the money. At Perryville, I tell this to the check-in nurse. She frowns and says, “Well, the judge can expedite all he wants, but you’re in prison now and you can get in line.”
Finally, my chemo does start and I am very sick. The kitchen sends me trays of regular food and I vomit. I go to the kitchen to beg for just broth or plain potatoes. Nope. Nothing they can do. On my way back to my yard, I collapse, vomiting. A guard comes and asks if I can walk the three blocks to medical. There are no wheelchairs. I’ll try. One third of the way across the soccer field, I collapse and vomit some more. As I lie there, a sergeant comes toward me, asking disgustedly, “What’s the issue, Allen?” How do you answer that? Cancer. Chemo. I’m sick. And I vomit some more. His shoes are eye level. Shiny. Not boots like everyone else. I notice he keeps them well away from me.
At last, I weakly pull myself up and continue across the field. No one helps me. By now, there are several more officers and a nurse. They walk behind me. I make it to the picnic tables in Visitation where I stop and vomit some more. I hear the sergeant bark, “Get somebody to clean this up.” No vomiting on the rocks.
I make it to Medical where the nurse put me in a room on a hard, cold leather table. She hands me a wastebasket and I continue to vomit. How can I vomit so much? This never happened when I had chemo outside. My oncologist was so determined that my nausea would be minimal. In here, there is complete indifference. The nurse comes with the news that the doctor says he is too busy to administer the shot to stop the vomiting. Even the nurse is frustrated. She says there is no other emergency. He’s doing paperwork. I vomit until there is nothing left and then I dry heave until I cannot lift my head. At last, an hour later, the doctor comes in, obviously irritated to deal with me. He acts like I’m faking and reluctantly administers the shot. Eventually, I am sent back to my room alone. I am dismissed.
I have three more treatments of chemo. Despite the rigid schedule, never is the medication ready on time nor is the newly discovered chemo diet ready. I have to spend my sickest days walking to Medical, begging for what I’m missing. When I’m supposed to be healing, I’m worn out battling for proper treatment. I do not understand the indifference. These are supposed to be health care professionals. I know I’m an inmate but does that mean I’m to be mistreated? I am so sick.
I lose all my hair. I ask for a turban like Christine has. Medical looks at me blankly and sends me to Security. It’s not their responsibility. Security shakes their collective heads and says that’s a medical issue. Back to Medical who refuses to see me. It’s not them, it’s Security. I’m sick and finally in tears as I face yet another sergeant. She must feel some pity for my futile efforts and says she’ll talk to Ms. Bailey, the Assistant Deputy Warden. I trudge back to my room, exhausted. A few hours later, there is a knock at my cell door. The sergeant appears with a blond lady in regular clothes whom I have never seen before. They have a beanie for me and look very proud of themselves. They’ve had the Garment Factory make it. I am very grateful but wondered why there is no policy to deal with this situation. Why was it necessary to bat me around like a ping pong ball, wearing me out, diminishing me, emphasizing my helplessness here?
That’s the real fear . . . my helplessness in the face of a medical department that is incompetent and apathetic. My life is literally in their hands and I’ve come to feel they don’t give a damn. I am not a patient with cancer. I am an inmate with cancer and that is full of hidden meaning.
Chemotherapy is finally over. Radiation starts. No more nausea. Burning instead. Meanwhile, my roommate Gina is getting sicker. She’s been to Medical and the nurse told her to come back in two weeks. If she’s still sick, they’ll know she’s not faking! They are treating her with the same hostile indifference that I experience. I know that sounds strange but it describes it perfectly. Gina had previously given me a little pep talk when I cried over my situation at Medical. “Come on, Sue Ellen. It can’t be that bad.” Now she is abjectly sorry. “I was wrong. It’s worse.” She agrees that when you’re sick, it’s awful to be neglected and feel so helpless.
Gina is a thin girl and can’t afford to lose the 15 pounds she’s lost. Her coloring has turned gray. She says her throat feels like she is swallowing ground glass and she can’t eat. Her head throbs constantly. Her gums are bleeding. We don’t know what’s wrong. They have refused to do a blood test, even though her parents called and asked for one. They said she was getting appropriate treatment. They gave her some antibiotics, but for what? They said she had a sore throat, or maybe allergies. Antibiotics, but no blood test.
On June 19, Gina dies.
The last week of her life was spent in horrific pain, crying, terrified, neglected. Medical was hostile. No one listened. She lay on her bunk, literally beating her head against the concrete wall, wailing, “Why won’t the pain stop? Make it stop, make it stop.” Finally, she couldn’t even walk. Unable to climb to her top bunk, she lay on mine, crying as I held her and prayed the 23rd Psalm over and over aloud. On June 16 , they finally took her to the hospital while I was at radiation. When I returned from treatment, she was gone. I went to Medical to get my burn cream and pain meds. My chest is a mass of blisters and feels like a tiny fairy is dancing on it with razor blades on the soles of her shoes. The nurse says they don’t have my meds and I can buy IBU’s at the store. Well, I could if it was Walgreens. We shop once a week and I have no money anyway. This is cancer. The meds are ordered. Why can’t I get them? Why is everything such a battle?
I am exhausted and worried sick about Gina. I’ve cared for her for weeks, but now I’m not allowed to know anything or talk to her parents. “Confidentiality,” they say. B.S. That is just the smoke screen they hide behind. The silence is deafening. Gradually, I hear surreptitiously, from the guards, that Gina has leukemia and it’s serious. But leukemia is very treatable. I do not understand. But suddenly, two days after they took her to the hospital, she is dead. How in the hell does a healthy 25-year-old die so fast? DOC says she had myeloid leukemia, fast acting and a death sentence. I wonder. If that’s true, does it mean you die in misery and pain, isolated and afraid, unable to say goodbye to your children?
The shock of Gina’s death is overwhelming. There is no counseling for inmates, but they do offer it to the officers. They continue to treat me with ignorance and apathy. Soon after this, Christina is released, has a second mastectomy and dies three months later. If her cancer had been diagnosed and treated when she discovered her lump, maybe she’d still be alive too.
Finally, my treatment is over. The radiologist says the protocol is a visit to the oncologist or radiologist alternating every three months for two years, then every six months for two years and then annually. But this protocol is not followed and nine months later, I start the laborious grievance process. Finally nearly one year after my last visit to the radiologist and 16 months after my last visit to the oncologist, I am allowed a teleconference with an oncologist who is completely unfamiliar with my case. He answers my questions, but there is no way for him to examine me and he’s never seen my file. He recommends a tumor marker test. Six months later, it still hasn’t happened. My cancer was stage 3B. My tumor was six cm. My margins weren’t clean following surgery. At the time, the oncologist said I had a 60% chance to live five years. Gina and Christine are dead. There are fourteen members of our cancer support group and all of them have terrifying and heartbreaking stories of neglect.
Before I was indicted, I had normal fears, but I always subscribed to Dr. Susan Jeffer’s book, Feel the Fear and Do It Anyway. Whatever it was, I could handle it. If it was a problem, I tackled it. A person, I faced them. An event, I met it head on. Sometimes I succeeded. Sometimes I didn’t, but always I tried, no matter what.
Then on February 14, 2002, I was diagnosed with cancer and I even tackled that. I researched my condition. I found the best oncology team (after I learned what an oncologist was).Together we faced the fear. We managed the pain. I was in good hands and I trusted their knowledge, their experience and their compassion. Cancer is a condition to fear, but you can face it. The justice system and prison are another story. Prison with cancer takes fear to a new level. I can control my mind. I can be optimistic. I can pray and believe and have faith, but I cannot change the horrible conditions, apathetic nurses, indifferent, incompetent doctors and mean-spirited officers. When they make decisions that affect my health, I am helpless. Gina wrote and her family called to no avail. They were all helpless.
That is why I am afraid. No amount of platitudes and cute sayings, no mind control, no positive imagery can change the situation. My life and my health are in the hands of the State and I am helpless against its inadequate, mismanaged, incompetent, uncaring power. This isn’t irrational fear about some hostile guard or stupid rule. I can deal with that. This is about the State, an enormous multi-tentacle octopus whose head cannot control all the thousands of tentacles who unite to form an impenetrable wall of incompetence. How do I deal with that?
Do you remember the story of Pollyanna? Her father taught her to play the Glad Game. No matter what the circumstances, always look for a reason to be glad. That’s really hard in here, but I’ll try. I’m glad I came to prison with cancer because I’ve experienced something firsthand that most people outside couldn’t believe. I’m glad Gina was my roommate and we were able to share her last days together. I’m glad my hair loss is visible and makes me vulnerable. As a result, many women come talk to me about the lump they’ve found or how it felt to lose their mother to cancer. Their stories touch me on so many levels. I’m glad Gina’s family is advocating for changes in the system so that Gina’s death will mean something positive.
There, you see. There are reasons to be glad. All of this reminds me that there are so many that suffer regardless of where they are. No one’s pain is unique . . . certainly not mine. I will use my fear to strengthen my resolve and use the Glad Game to strengthen my joy and maintain my balance in the midst of chaos. I will use this experience, cancer in prison, to help others survive their pain wherever I am . . . inside or out.