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Archive for the ‘Cancer Survival’ Category

March 18, 2009 to March 18, 2019
TODAY is the day I complete ten years of Probation.

Ten years is a good time for a review. What have I being doing since 2009? Well, first I’ve been reporting monthly to a probation officer. At first we had to submit a urinalysis  or “pee in a cup” every month even though we weren’t in prison for addiction. We also had to provide a monthly summary of our expenses and our income as well as a copy of our bank statement and a money order to the Clerk of the Court for restitution. Whenever I’ve travelled out of state, I had to ask for a travel permit. There has not been nor will there ever be privacy in my life. Actually in this age of media overload, if you think you have a secret, Google is not your friend. 

That’s not all I’ve been doing. I realized that our lives had been changed forever. We would never go back to the life we had. The prison experience was unforgettable. I wanted passionately to impact the world of criminal justice reform and David wanted to support my work. In the first two years I co-founded GINA’S Team, established a program at Perryville Prison to begin a bimonthly Speaker Series and find sponsors for the Toastmasters Club. This lead to the  GAT (Gina’s ATHENA Team) Leadership Class three times a year and a monthly book club for GAT graduates.  The Speaker Series included outstanding leaders like Rep. Kirsten Sinema (Now a Senator), Rep. Cecil Ash (now a judge), and Olympic Gold Medalist Misty Hyman. We started a monthly Speaker Series for the juvenile girls at Mingus Mountain Academy and helped amass over 2,000 books to begin their library.  We partnered with ASU to begin an internship program and became a community partner with the ASU Art Museum for “It’s Not Just Black & White” about prison reform. Volunteers showed up to start creative writing classes and civics classes as well as a Welcome Back program. Putting this together was like juggling cats into a marching band, but somehow we had a marching band of very cool cats.

One of the most significant achievements was getting approval for our 501(c)3.  We got a lot of help to cut though the intimidating legalese of that hefty application process and I breathed a sigh of relief when that approval arrived.

I published my memoir of my prison journey, The Slumber Party From Hell, and started speaking to a myriad of audiences, including Ignite and TEDx, with the goal of bringing the audience into my prison cell to hear my voice and share my emotions. To humanize the women I met and see them through my eyes. To shine a light into the darkness and to educate people about our wretched system. 

January 31, 2010
David and I renewed our wedding vows on the anniversary of our wedding in Acapulco so long ago. When David was released from prison, I hadn’t seen him in over seven years and I almost didn’t recognize him. He trembled badly on his left side. His gait was off, he had no balance, his speech was slurred, and he couldn’t even open a jar. At the prison when he went to Medical, they said it was nothing. “You’re just old.” Actually, it was Parkinson’s Disease. No proper diagnosis or treatment forthcoming.

Kudos to the VA for an accurate diagnosis. He responded well to the medication and the trembling became minimal. His balance and his gait came back and he worked hard to stay healthy because he wanted to take care of me while I went through a second mastectomy and the long process of reconstruction. The implant  on the side of the radiated skin was rejected by a dangerous staph infection.  Rushed to surgery, the implant was removed and I was watched like a hawk for danger signs. Four months later we tried again, this time using tissue and muscle from my latissimus dorsi.  We held our collective breaths while I healed. This time it took and this time David was with me every step of the way. 

Only one problem, he kept complaining of back pain and dealt with it unsuccessfully through stretching and yoga. The VA did lots of X-rays of his back. Nothing showed up, but his pain was visible.

March 1, 2014
We’d been out five years when one Saturday David said, “I think we need to go to the ER. I’m having trouble breathing.” In 24 years, he’d never said that. Terrified, we rushed off, and in just a few days, we learned he had a rare form of brain cancer. He was transferred to Barrows. The surgeon removed his brain tumor. His back pain stopped immediately, but the cancer was all over his body. Standing in the hall discussing treatment with the oncologist, considering my experience with cancer, I asked, “Are we talking months or years?”  His answer, “No, days or weeks.” My knees buckled. I had to tell my husband he was dying.

I slept on it, wondering what I could say. The next day when I told him, he looked at me peacefully and all he said was, “OK.”  We went home and Hospice came. Five weeks from his surgery, my Darling David passed on. He’s always with me in spirit, but loosing my husband numbed my body, my heart, and my soul. Just like everything else, a direct experience raises your empathy in uncountable ways.

OK, this was the five year marker. New role. Widow. Ugh.  Everything alone. Home alone. Meals alone. Sleeping alone. Conversation alone. I wanted to lie under the bed in the dark. I wanted to watch old movies, 1936 old. I wanted to scream and cry and die, but I didn’t. Remember, “this too shall pass.” Not easily, not well, not clearly. Slowly, painfully, harshly. Life went on and so did I.  Thank goodness for Purpose.

November 2015
Invited to speak at Operation Reform, a conference in Florida about criminal justice reform, I had an AHA moment.  A lot of nonprofits talked about their outstanding prison programs. However, none of these programs touched more than 10% of the prison population, usually much less. Nowhere in any corrections facility was there programing for everyone. There is no vested interest in corrections staff  increasing the number of programs or available seats in each class. Job security does not encourage successful programming.

Our programs at GINA’s Team saw outstanding results, but we only touched about 200 women a year of the 4,200 women housed at Perryville Prison. We were trying to empty the ocean with a slotted spoon.

Nothing was changing significantly. We needed changes in our laws and in our culture. We needed a paradigm shift. How can we do that? How can we create a cultural shift in our society? With a shared vision, collaboration, a passion, determination and never giving up.

January 3, 2016
The unthinkable happened. Sunday night, waiting for Downton Abbey, the phone rang. ID unknown. I don’t answer ID unknown. Ignored it. Rang again. Ignored. Rang again. Finally, voice mail. Said it was the White House calling! Sure it was. 

Actually, it sure was. It was an invitation to be a guest of the First Lady in her box at President Obama’s  final State of the Union Address the next week representing criminal justice reform. I was Very Cool. . .

“Seriously? You know I’m an ex-felon?” 

“Oh, yes m’am. We know all about you.”   

I’ll bet they do…

One week later, I was in Washington, D.C. I got to meet with Attorney General Loretta Lynch and Chief White House Advisor Valerie Jarrett. There was a lovely reception at the White House before the address. Then Mrs.Obama’s 23 invited guests were ushered into the motorcade and, with sirens blazing, rushed to the Capitol, just like a movie. Never in my wildest dreams would I have imagined this. It was not on my bucket list. Nor was emergency surgery the next day. I went from an incredible High to quite a Low in 24 hours.

Fortunately, that trip lead to more invitations to the Obama White House and the opportunity to meet like-minded people in our field. Among those was the team from #cut50. They recently lead the fight in Congress for the successful passing of the historic First Step Act, the first criminal justice reform in decades. For three years we’ve also collaborated on the National Day of Empathy and, thanks to them, I went back to the Trump White House for more action on justice reform.

April 2016
ReInventing ReEntry, a new nonprofit, was born. It was time to stop trying to empty the ocean with a slotted spoon. It was time to focus on criminal justice reform.

At that time, I was introduced to a life changing experience, a Reentry Simulation designed by some very savvy people in the justice arena. It was being conducted for government officials to educate them about the obstacles the formerly incarcerated face. The power and authenticity of the experience to create a paradigm shift excited me and immediately I wanted to bring it to the general public. In two years, I’ve facilitated the simulation around the country, including Columbia Univerity, University of California Irvine, Slack, DKB Foundation, Friends Seminary, and others. None of this was on my bucket list either.

March 23, 2017
After a bone-marrow biopsy, I was diagnosed with Myloid Displastic Syndrome. They don’t know what causes it, but they think it’s from all that chemo and radiation I had 17 years ago to kill my breast cancer. Great. It’s a cancer of the blood. There’s no cure except a bone-marrow transplant. Not on my bucket list. Right now my hematologist calls me a “watch and wait” patient. My platelets are low and I get tired, but big deal. People can live quite a while with this and I intend to, mainly because I have too much to do. Enthusiasm, purpose and that hopeful heart give me the energy to keep moving. Do I think about death? Sure, but I think more about Purpose and Chocolate.

May 2015
One final Big Deal in these last ten years. I wrote a letter to President Obama basically asking him to visit a prison. Additionally, as a child of the 60’s, I was watching overt racism rearing its ugly head again. Horrified, I shared my thoughts on racism in America, too. Pretty cheeky, huh, sharing my thoughts on racism with President Obama? But it was all for my own entertainment. I never expected anyone would read it. 

I later learned my letter was what triggered the invitation to the State of the Union Address. I was told The President gets about 15,000 letters, emails, faxes, phone calls a week. From those, the OPC (Office of Presidential Correspondence) chooses ten representative letters for his briefing folder for him to read at the end  of every day. Not the best; not the worst. Simply the voices of America speaking to the President. One day your letter was one of the chosen ones.”

Oh my goodness, I won the White House letter lottery. That letter changed the trajectory of my life and gave me more of a national platform, leading to more invitations from both the Obama and the Trump White House, using that platform to make a difference. It also lead to the inclusion of my letter in To Obama: With Love, Joy, Anger, and Hope, a fascinating book by Jeanne Marie Laskas about all those letters to the president. 

Remember, I’ve always said getting out of prison is like being shot out of a cannon into a brick wall. When I got out, my wall was padded. I went to live with friends in North Scottsdale in a gated community on a golf course. I know what you’re thinking. I went from one gated community to another gated community. What a difference a gate can make. 

Of course, they introduced me to their Scottsdale friends and I knew I had to tell the truth about where I’d been. “Hi, I’m Sue Ellen Allen and I just got out of prison.” Everyone had the same reaction. Big frozen smile. One eyebrow would go up. Slight look of confusion and panic.  They had no idea what to say and I had no idea what I wanted them to say. 

Then one day, while getting gas at a QT, a homeless man asked me for some spare change. It’s a tough way to make a living and now I was counting my pennies so I said, “Oh Sir, I’m so sorry. I just got out of prison and I. . .  Before I could finish, the homeless man threw up his hands and said “Lady, congratulations, Welcome Back!” No one else had said that to me, but the homeless man got it. He gave me a gift that day. He welcomed me back.

Being welcomed into the community is a critical part of reentry. It begins with awareness and empathy. Now I travel the country taking the Reentry Simulation into universities, corporations, churches, chambers of commerce, foundations, other nonprofits. Our goal is to raise awareness, empathy, and outrage about this incredibly punitive system. And it works. Wherever we conduct the simulation, participants describe their emotions: “Helpless. Frustrated. Angry. Defeated. Vulnerable. Furious. Failure. Unwanted. Unwelcome.”

How can we fix this? It can’t be fixed.  It must be Reinvented and we should not expect those who created the system to reinvent it. For the BEST reinvention, we need the BEST minds in business, technology, justice, health care, and  academia, to come together with the formerly incarcerated (or as I like go call us, the Alumni of the system) to look for solutions outside the traditional box, instead of “checking the box” on any and every application, “Have you ever been convicted of a felony?”  That’s on applications for jobs, housing, volunteer positions. It’s the highest brick wall we face.  

Did you know one in three Americans now has a criminal record.* Did you know every year, over 1.2 million students drop out of high school in the United States. That’s one every 26 seconds – or 7,000 a day in America.* 

Until lately, most of our national prison population have been people of color, but the opioid crisis is leading to more white people being arrested for crimes related to drugs. At every speech I give, people come to me afterwards to tell me about their son, brother, sister, mother, father, friend…in prison. Our Criminal Justice System is touching everyone.

In prison I learned everything I could about the system because I knew my journey was going to take me in a new direction, criminal justice reform. Prisons are successfully designed to be out of sight, out of mind so the hideous system isn’t visible until it touches you, and for seven years, I was directly touched. Then ten years ago, I walked out the prison gates into freedom and a life of advocacy for criminal justice reform. 

Life is a journey and in a lifetime, we have many journeys. I’ve had incredible ones and, at the end of this ten year probation journey, it’s a good time to take stock. What about you? What have you been doing for the past ten years? Is it time for you to take stock…inside or out?

*The Sentencing Project https://www.sentencingproject.org/
 *DO Something.   DOSomething.org

 

 

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screen-shot-2017-02-13-at-11-27-36-pmWhere were you fifteen years ago, Valentine’s Day 2002? Some of my young friends weren’t even born yet. Some of  my sisters and brothers in orange were inside. Some of you were celebrating Valentine’s Day and some of you were lamenting the lack of cards, chocolate and flowers.

I was sitting in a doctor’s office hearing the words, “You’ve got  stage 3B breast cancer.” What? No, that can’t be right. I’ve never smoked. No one in my family has had cancer. I eat my veggies and exercise. And what the hell, it’s Valentine’s Day. Seriously??

But it was right and none of that other stuff mattered. I was tapped on the breast by Breast cancer behind the wiresthe cancer demon and began a journey I never expected. Curiously, it almost paralleled with my prison journey. If I hadn’t been diagnosed on Valentine’s Day and started chemo and had my medical records, I wouldn’t be alive today because most of my treatment including my mastectomy was behind prison walls.

Although “they” told me I probably wouldn’t live five years, fifteen years later, here I am. Christine died; Gina died; Paula died; too many died; even David died, but I’m still here. Often I wonder why. And then I look at the book by my bed, The Book of Joy by the Dalai Lama and Desmond Tutu.

I first checked this book from the library, but after one chapter I knew I had to own it so I rushed to Costco where it sits amongst the latest book bargains, hot off the press. You might not notice it, but Pay Attention. Forget the best selling novels screen-shot-2017-02-13-at-11-32-38-pmand take this one instead.

It’s divided into three sections:

I    The Nature of True Joy

II   The Obstacles of Joy

III  The Eight Pillars of Joy

This book will open your eyes to the difference between joy and happiness. It will open your eyes to the incredible power and joy of LIFE, despite suffering and sorrow.

You’ve heard me say it a million times, “Everyone has a story.” Mostly those stories are about pain and suffering. You’ve also heard me say that there is great power in your willingness to be vulnerable and share your story with others.

The Book of Joy distills the power of our grief, pain and suffering and gives meaning to our stories.  I’m not going to give you a book report. Nope, you have to buy it  and keep it by the bed with a marker to highlight the meaningful parts. And then put a journal with it to write your own story so you’ll know why you’re here and what you’re meant to do.

What’s your story? Have you figured out your purpose? If you haven’t, no worries. I didn’t “get” mine until I walked into prison at fifty-seven years old. (Slow learner.) Judy Pearson calls finding your purpose your 2nd Act. 

Judy is a breast cancer survivor with an incredible story and a clear vision to make a difference in the world of cancer. She founded A 2nd Act to do just that. A 2nd Act: Survivorship Takes the Stage is a live, curated stage performance, featuring a cast of eight women survivors of ALL types of cancers, local to the city in which the show is being held. Professionally produced, each woman has auditioned for a slot to share her own story of how she’s using her post-diagnosis gifts of time and experience for the greater good.

I’m deeply honored to have been chosen to be part of the Phoenix cast for 2017 and Sunday we had our first table reading. At that table, The Book of Joy came to life. All of the women there realized the power of their stories while they were going through their suffering and from their pain, they have manifested extraordinary 2nd Acts. Their courage is humbling and inspiring.

The Phoenix event on Sunday, March 12th. I hope you will visit the website to get the details. If you know anyone who has battled cancer or if you have, I urge you to attend this event and bring your friends. You will laugh, cry, be outraged delighted and you may see yourself in one of the stories. Here’s the link to the site: https://a2ndact.org/the-2nd-act/

Meanwhile, back to Valentine’s Day. Maybe you have a marvelous date tonight. Maybe you’re sad because you’re alone. Consider this. In doctor’s offices all over the world women and men and children are hearing the words, “You’ve got cancer.” In a heart-beat, their lives are changed forever.

Here’s your chance for a really special Valentine’s Day. Instead of feeling blue, why not take some flowers to a senior center or a hospital or the VA? Why not invite your mother to dinner? Think outside the box and get creative. What wonderful thing can you do to brighten someone else’s Valentine’s Day? Who knows, it might feel so good it will become your 2nd Act!

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HairHairHair…

Why do we care
about hair?

What’s with the love affair
with hair?

Any supermarket, drug store or super store sells
miles and miles of hair care

Shampoo, conditioner, jel, mousse, wax, spray, glaze, color and bleach
A $160 BILLION business…Good grief. It’s only Hair.

It gets dirty
splits ends
has to be cut
limps or frizzes
falls out then
grows in places we don’t want it…

And yet

We care
so much
about hair.

Why do I care
about hair?

Born a redhead. Love my hair; thick and long.Screen Shot 2012-04-23 at 6.10.30 PM
Lots of body; does just what I want it to.
Never have to color it, perm it or battle it.
I love my hair.

Then Cancer comes.
Diagnoses instantly brings two thoughts:

Oh My God, I’m going to lose my breast, my hair…
Not necessarily in that order.

It’s on the pillow; in the shower.
The time comes. Shave it off.
TraumaDramaTrauma.IMG_2100
Not painful but it hurts.
Visible sign I’m sick.
I have cancer. I might die.

But I don’t die. Twelve years later I’m still here;
still thinking about hair.

Chemo; hair falls out. Who am I without my hair?
Mastectomy; hair starts growing back.
More chemo; hair falls out again. Who am I without my hair?
Hair grows back…sort of. ThinThinThin and grey and who am I without my hair?

I’m surrounded by Hair. Long Blond, Black, Brown, Blond Hair.
Who am I without my hair?
B & W shirt

Did you know?

Hair can be bought.
Hair can be had.

Did you know?
Beyoncé and Tina and Cher
all buy hair.

For a cancer patient,
insurance will pay for
fake breasts
and fake hair
So… I got breasts
and I got hair.

See there.
427481_392450830808345_1114863785_n

There I am
with lots of hair,
with thin thin hair,
with no hair,
with fake hair.

Who am I without my hair?
Who are you With your hair?

You know what? It’s only hair.
YOU are YOU
and I am Me
with or without the hair.

So there.

 

 

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Pale Pink Ribbon 2It’s October, Breast Cancer Awareness Month. The world of pink –  ribbons, t-shirts, give aways and things to buy. We race for the cure. We stand up to cancer. We support our loved ones battling or surviving the disease. We hear stories of women who have taken the journey, but there is one population we never mention, women with breast cancer behind bars.

Can you imagine the feel of shackles on your ankles? Hard, cold steel that does just what it’s supposed to do. It cuts into your ankles and restricts your movements to baby steps. Even when you are very careful, you wind up with blisters or ankles rubbed raw. And the weight alone drags you down.

Now imagine handcuffs. They too are designed to restrict but they can chaff and cut, especially if the guard who cuffs you is having a bad day. His bad day becomes yours, but your blisters are yours alone.

It’s two o’clock in the morning and the halls of the jail are bustling with guards dragging chains while inmates stand restlessly against the cinderblock walls. Dirty cream walls, faded black and white stripes, clanging, clashing cuffs and shackles. All that plus the commotion of fifty female inmates and ten khaki clad jail guards prepping us for the trip to court.

I’m not going to court; I’m going the the hospital to have my breast cut off. It’s time. I’ve had the poison. Now it’s the slashing. Then it’s the burning. Poison, slash, burn. That’s what they call chemotherapy, mastectomy, radiation. Poison, slash, burn.

I’ve been cuffed and shackled since two AM. I’m exhausted and freezing. The old morgue where they keep us for several hours is like an ice rink. Despite the cold, there are those tiny little roaches everywhere. They add to the despair.

Finally, when everyone else has been called to court and I am alone with my fears, I hear my name, “ALLEN. MOVE IT OUT! Followed by armed guards, I shuffle out to the jail van, jangling as I shuffle. The backs of those vans are cages, not designed for safety. There is a metal bench, but no seat belts, so I lurch each time we turn a corner. I cannot balance myself because of the cuffs and shackles and sometimes I crash to the floor. I’m bruised and shaken to my core.

Finally we arrive at the hospital. I shuffle into another holding cell and wait several more hours, still alone and very afraid. I’m crushed with a feeling of shame that I’m now much less than human. Four hours later I’m escorted to the OR. There the cuffs are removed, a gown is thrown at me and eventually I’m lead to the operating table.  Still shackled, I climb upon the table and they begin the very painful search for my very small veins. At last, as I begin to go under, the shackles come off. The guards will stay in the corner to watch as my breast comes off.

Five hours later I wake up in the jail ward, bandaged and sore but alive and still alone. On this particular journey, no one touches me except the surgeons with their knives and the nurses with their needles. I ask for a pastor or a priest, someone to pray with me, but no one comes.

When I finally return to the jail, the women surround me with love. At the darkest time in my life, the drug addicts, the prostitutes and the thieves looked after me and I will NEVER FORGET THEM. It is nineteen days before the medical department sees me to clean up my incision, take out the stitches and see if I’m healing.

This is the way all women experience breast cancer in prison. There is no comfort or solace. They go alone, they suffer alone, they return to their prison alone. Some might think that they deserve it, but I don’t think anyone deserves that kind of horrific treatment. It is devastating and demeaning to all of us as human beings.

It’s a dreadful journey inside or out, but there are many ways to take it. It’s one thing for Robin Roberts, Christina Applegate, Cynthia Nixon or Sheryl Crow to face cancer. They have the very best doctors, loving family and friends to surround them, and the entire world to care. They are deemed heroes by the press.

I wonder how they would handle the isolation and the incredibly hostile indifference that inmates face.  The lack of information, attention and care. I’m lucky. I have been both a patient with cancer and an inmate with cancer. There is a world of difference. I was diagnosed before I went inside. I’d already had six sessions of chemo. I went inside with a bald head, my medical records and a high profile identity. I think that’s the reason I got treatment. Gina, my young cellmate, didn’t have that advantage and she died a painful death, not of breast cancer but of myeloid leukemia. There are many, many others who have died of cancer and medical neglect. They fought so bravely though pain, fear, neglect, hostility, exhaustion and isolation.

Ask yourself how you would handle this kind of journey? These women are mothers, wives, and daughters, many in prison for addiction or low level drug crimes.When they should be healing, they are worn out fighting for treatment, constantly reminded that nobody cares, nobody cares, nobody cares.

In 2013, 296,980 American women were diagnosed with breast cancer and nearly 40,000 died of it. Everyone who battles this disease is a hero. It is harder than you can ever imagine. I am free now and miraculously still alive, but there are thousands I’ve left behind in jails and prisons all over the world, alone and afraid with their cancer.

Everyone deserves a prayer, but please send a special one to all those invisible women who face this journey alone. No one should be alone with cancer.

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Screen Shot 2014-07-17 at 11.48.40 AM On a day when the temperature has been about 112° for many days, put on your heaviest polyester pants and t-shirt, go out in your garage with a very small fan and spend the day.  Have lunch there, soup (yes, soup) and a baloney sandwich.  Sweep, mop and clean.  Watch a tiny T.V.  Read.  Try to nap on a plastic cot.  Eat a lukewarm dinner.  Spend the night.  This is Arizona prison in the summer.

Summer lasts nearly four months, 1440 minutes a day of sheer, unrelenting, blast furnace heat.  The small bit of grass on the field chokes and turns brown.  The few precious trees are gasping and pitiful.  Looking forlorn, the birds wander into the community showers to drink the stagnant water pooling on the hot concrete.

Prison yards are very spread out.  We walk everywhere, blocks and blocks between buildings.  No shade.  The offices and classrooms are air-conditioned, but that’s it.  Evaporative coolers slog away to cool the cells and cafeterias.  They work until the temperature hits 90°.  After that, the cells become concrete coffins of heat.  There is no relief.

One summer, when the temperature had been 117° for days, there were nineteen heat related seizures in one morning, and there is more heat exhaustion than I can count.  It all ends up costing money in medical attention.  One way or another, the tax payer pays.

My first prison summer was horrific.  The previous director had retired the year before, leaving a final gift to the population.  He had every inmates’ fans removed.  In Arizona, that would be cruel under normal conditions, but I was going through radiation and my chest had third degree burns, blistered, raw, and bleeding. Christine, my partner in cancer treatment, was worse than I was.  We were both suffering from searing pain exacerbated by the heat.  Christine’s father actually called the prison, offering a couple of fans for medical use as a humanitarian gesture.  Request denied.

In the middle of June, Gina was so sick, the heat adding to her misery.  Finally, Gina’s excrutiating death opened some eyes.  We had a town meeting to vent our frustrations and the new director came.  Very little changed in Medical after that meeting, despite the promises.  However, the new director did approve fans.  It was August by then and the heat lay over the prison like a shroud.  We were elated over the new ruling, but it took nine months for prison officials  to source an acceptable clear plastic fan to sells us.  Thankfully, they materialized in April, just in time for the next summer’s heat.  The small plastic fan successfully pushes the hot air around, and if you keep your t-shirt damp, it feels almost cool.

The five summers I spent on Santa Cruz before moving to Piestewa were torture.  Each year, I passed out from the heat.  Once, an officer found me unconscious on the floor of my room.  Twice, I collapsed on the yard on the searing concrete, and once I was sweeping and I just fell out over the threshold.  See, besides the heat, the pill I take to keep the cancer at bay, causes hot flashes as a side effect.  Sitting in a concrete coffin of heat with hot flashes is a different kind of torture.

Let’s get back to your garage.  What can you do in your stifling garage to relieve the heat?  You can’t go to the fridge for an ice cold coke.  You can buy a ten-pound bag of ice for $2.24, about a day’s salary if you are lucky enough to make 30¢ an hour.  For another $1.35, you can buy a very small, thin Styrofoam cooler to keep the ice in.  The ice melts in a few hours, but meanwhile, you can have the luxury of  ice cold water. You can also wet down your shirt and head.  You can wear a wet washcloth around your neck.  You can fill an old hair spray bottle with water and spray yourself continuously, sort of like the misters at an outdoor café.  That’s pretty much it.  Even the showers are scalding.  Maintenance refuses to go to the ‘trouble’ of turning the hot water off in the summer.  No relief there.  No relief anywhere.

My friend Krissy was new to prison the summer the water and power went off.  The entire yard was locked down for three days.  No water, no showers, no flushing, no evaporator coolers in the 6’x11’ concrete coffin.  Staff delivered inmate meals with one eight-ounce styrofoam cup of water that was gratefully gulped.  Krissy tried to stay as still as possible, but she and her bunky poured sweat, constantly using their washcloths to wipe the sweat off.  She said she will never forget the feeling of desperation, locked in that suffocating cell, or the rancid stink of that washcloth.

What’s the purpose of prison? Punishment is higher on the list than rehabilitation and America’s prisons are designed to punish.  Many people think that inmates don’t deserve more than two or three cups of water a day and a rancid washcloth. What does that teach?  It certainly doesn’t teach a person to be kind or considerate.  It does, however, teach inmates that they are worthless, disposable human beings.

Before prison, I was a confident woman.  Prison ate away at my confidence and  I realized then just how much prison had affected me.  It is a daily Chinese water torture of denigration, and if I was affected so dramatically, imagine what it does to others lacking confidence.

In the end, it boils down to humanity.  Is this who we really are?  Are we a nation that prefers to punish in such draconian ways?  Are we really teaching people a lesson?  I learned that what we are doing is treating people so badly that they become bitter, angry and mean, completely unprepared for a life of civility and respect.

I learned other things in prison.  I learned that everyone wants love, but many in prison have never had it…from parents, friends or partners.  Prison is full of horror stories, but the worst was about the girl on my yard whose name I never knew, and she had a nickname too awful to repeat.  She had been abused by all the boys and men in her family and repeatedly raped by her father.  At twelve, she became pregnant with her father’s child and at thirteen, gave birth to her son who was also her brother.  She was never still, always acting out and frequently in trouble.  She was desperate for love and attention, but had to idea how to get it.  Of course, she was in prison.  The abusive men were free.

I also learned that Jesus, Jackie De Shannon, and John Lennon were right…all we need is love.  Of course, that’s simplistic and we have made it complicated.  We have become a nation of fear and anger.  We’d rather flex our muscles than flex our hearts.  Love seems to always have conditions.

We know what we need to do, we’re just not doing it.  Be kind.  Be considerate.  Be respectful.  Stop judging and being petty.  Open your hearts.  Think…Is this the best person I can be?  You know it’s true and you know it works…inside and out.  

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 The Slumber Party From Hell

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Chapter 11

The Birthday Party

July 04. The invitations are individual works of art: small, appliquéd American flags of red, white, and blue. The picnic tables are set in the shade of the tree and decorated with flowers of mauve, pink and yellow. The guests are fashionably dressed in varying shades of the year’s hottest color, orange. It sounds trés chic, but the flags are made of construction paper and glue, the metal tables are under the lone tree on the gray prison yard and the orange is the ugly uniform of an inmate.

A party in prison? Yes, they happen, mostly for birthdays, and this one is for three of us. Melissa, Candace, and me…all July babies. Because we all have different friends, not all the guests know each other so I decide on a game, my old favorite, ‘Get Acquainted Bingo’. I have painstakingly drawn twenty bingo cards with grids (recreated below) and have my precious colored pencils ready to distribute to each guest. The object of the game is to get each square signed by a different person until the entire sheet is signed…a Bingo blackout. It forces you to circulate and talk to everyone. The descriptions should be tailored to your guest list.

I am frankly a bit nervous as I distribute the cards and give instructions. After all, this is prison. Will these women be too “cool” for a silly game? I have successfully played this from Phoenix to Portugal with ages from 8 to 80, but this is a totally different audience. As they look at the cards, there is complete silence while I hold my breath. Suddenly, almost in unison, they jump up and start darting around getting the coveted signatures. It’s working! They are talking and laughing…actually mixing, just like in real life. Finally, we hear “Bingo!” The proud winner is Lisa, a darling young woman who has served fourteen years of a sixteen-year sentence. She wins a bottle of DOM Perryville; a very young vintage of Ginger Ale that Candace has decorated with a Champagne label.

Time for the appetizers. Potluck is a tradition in prison. Everyone brings a dish to show off her culinary skills…a huge challenge here. Inmates are allowed to buy a very limited array of food items from the ‘company store.’ Almost everything available is junk. Lots of chips and candy, but only three items of protein…peanut butter, tuna and beans. These make up the bulk of our menus. What can you do with junk food? The creations are amazingly good, but ultra high in carbs and calories.

Val’s hors d’oeuvres are a hit. She made cheesy tuna roll-ups…tuna, mayonnaise, cheese and jalapenos rolled up in tortillas. She cut them into bite size pieces using our cutting tool, the edge of our very small plastic mirror. No knives allowed. Val even made a serving tray by painting and decorating the bottom of the box that brownies come in, lining it with a pretty magazine ad. Not exactly hygienic, but certainly pretty. The roll-ups are served with a tasty sauce made from squeeze cheese, mayonnaise and powdered milk. No seasoning allowed, but somehow inmates find a way.

Candace made a yummy sour cream and onion cheese dip. Take a bag of Sour Cream and Onion Potato Chips and crush them to a fine texture (Keep them in the bag and use a water bottle). Using the bag as your mixing bowl, add three packages of squeeze cheese, milk and jalapeño juice to taste. Consistency should be creamy. Serve in a bowl with tortillas or crackers. Don’t ask about the calories.

For the main course, the tables are filled with our beautiful prison ‘china’…white plastic bowls filled with various delicacies. We’re only allowed one small bowl so ‘cooking’ is a challenge. Most of inmates actually have two bowls, but the second one is contraband and on quarterly “shakes”, the Correctional Officers routinely throw it away. So then everyone buys a new one for twenty-five cents. It gives the company store more business and inmates then have two bowls for the next three months. It’s a prison game everyone plays.

The highlights of the main course are euphemistically called “Pasta with Tuna” and “Sour Cream Chicken”. (Recipes included). Do not consider making these unless you are rail thin, have ridiculously low cholesterol and just love junk food, because it is indeed junk food.

After we’ve eaten much more than our stomachs are used to, desserts are forthcoming. First, we are tempted by chocolate cake made with candy bars. I made chocolate mint truffles, lots of work, but well worth it…easy to serve and bite size. I, too, decorated a brownie box for serving. In an ugly place, we appreciate the efforts to make things pretty.

Finally, comes the piéce de résistance…Melissa’s lemon birthday cake, star shaped and decorated with stars. Melissa was sick the week before the party and for a few precious days she got meals in her room when dessert was lemon pudding. She carefully saved it for icing and filling. The cake itself was a mix of Vanilla Zingers and Dunkin’ Sticks layered with the lemon filling. She carefully worked it into the shape of a star, then iced it all with a mixture of pudding, milk and lemon drops melted in hot water. The extra stars were made by rolling Star Bursts flat with a water bottle (yes, it takes forever) and then using our special mirror cutting tool to cut the star shapes. The effort is intense, but they really look fantastic, shiny, colorful and sparkly. It is the most beautiful cake I’ve seen in prison, and we dub Melissa the Martha Stewart of Perryville.

Of course, no birthday party would be complete without singing and presents. The singing is enthusiastic and the presents very special…all handmade with love. Except for mine. I have a very special milestone. The girls give me rollers and mascara this year. Last year, I had lost all of my hair and eye lashes to chemotherapy and was painfully bald. This year I have hair to roll. I am thankful.

As the sky turns all the gorgeous sunset hues of the Arizona desert (despite the razor wire fences, we can still see the sky), the party talk mellows to past birthdays in prison and out. Melissa turned 28 years old; Candace is 40 and I hit 59. The hardest milestone is Candace’s. Turning 40 in prison is not exactly reason to celebrate. She is due for release in three weeks and fears starting over with nothing. But I knew that with her energy and drive, she’ll be on top again in the blink of an eye. Melissa fears she is loosing her youth and the best years of her life, but she is beautiful with a perfect figure and excellent mind. I know her best years are in front of her.

From the prospective of our ages, our fears are different. Because I’ve lost everything and am essentially homeless, I fear being a bag lady, sleeping under a bridge somewhere, but then I stop, knowing that’s ridiculous. I am blessed with a brain, energy, enthusiasm, friends, faith and David. I know I will not be under a bridge.

It is a wonderful day to celebrate and practice the little niceties of life. We are isolated in such an ugly place, but we used our creative energy to produce a pretty party to share with our friends. It’s the closest thing to normal possible behind the razor wire. It lifted our spirits and brought laughter into our lives. No matter where you are or what your circumstance, remember that you are a creative spirit with much to contribute and share. Sharing that creativity and joy will give meaning to your life…inside or out.

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BELIEVE IT OR NOT

Recipes that are Actually Delicious and Completely BAD for You

 Sour Cream & Onion Chicken

2 Bowls (small plastic ones, the only ones we are allowed)

Small amount of milk (pilfered from somewhere)

2 pouches of chicken in gravy (mostly gravy)

1 bag Sour Cream & Onion Potato Chips (finely crushing chips in the bag using a water bottle)

Grilled potatoes pilfered from breakfast

Chopped Jalapeños

Boil 1 cup of water with heating coil. Pour into bowl, and immerse pouch of chicken & gravy. Heat up about 3 minutes.

Pour ½ bag crushed chips in 2nd bowl. Add warm chicken and mix well.

Add some potatoes and keep mixing. Add chopped jalapeños to taste and some milk to smooth consistency.

Repeat with the 2nd pouch.

When it’s all mixed well, combine the bowls. Then wash out empty bowl and line with Saran Wrap. Add all the mixture to this bowl, pressing tightly to make a mound.

Turn out on a serving box you’ve decorated with pretty magazine ads and covered with Saran Wrap you’ve pilfered from somewhere. Decorate the mound with 2 whole ships and surround it with crackers.

Alternatively, you can roll it up in tortillas and serve.

 Pasta with Tuna

1 Ramen Vegetable Noodle Soup                                                  1 Tuna pouch

½ bag Sour Cream Chips (crush chips by using a water bottle)

1 ½ Squeeze Cheese Packets                                                        3 Mayonnaise Packs

Whole or Chopped Jalapeños (to taste)                                       Salt & Pepper (pilfered from D.R.)

Boil water and add to soup to cover pasta. Let sit until all the water is absorbed with the pasta.

In a bowl, mix well Tuna, ½ cheese pack, 3 mayonnaise packs, salt & pepper.

In another bowl, mix crushed chips with one pack cheese and a little hot water. Mix so it looks like cheese chunks. Then mix it all together with the tuna.

Add Jalapeños to taste. Serve with crackers.

 Chocolate Mint Truffles

6 Brownies, mashed in a bowl

4 Dunkin Sticks, well crushed in a bowl

6 Peppermints, finely crushed

2 pats of butter with melted cocoa to taste. (You have to sneak the butter out of the kitchen. If caught, it’s a major ticket for stealing off of your own tray).

Mix brownies in a bowl to a consistency of fudge.

Mix Dunkin Sticks to a doughy texture in another bowl.

Combine and add melted butter. Texture should be like fudge.

Add cocoa to taste.

To crush peppermints, throw them, wrapped in paper, very hard on the floor. Roll crushed bits with a water bottle to crush more. Take out the big bits and eat them! Then add the crushed bits to the truffle mix and mix well. Roll out truffles to the size of a small cherry tomato. Sprinkle with cocoa powder.

Chill and serve on a brownie box you’ve painted and then layered with pretty magazine paper, covered with cling film (also pilfered from someone’s sack lunch.)

 

GET ACQUAINTED BINGO

 

 

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In the last month, many people have died or, as in the case of the Malaysian airline, disappeared without a trace. Millions are suffering, aching, grieving or in pain. Right now  I’m one of those people.

On March 13, the VA found a tumor on my beloved husband David’s brain. The same day they sent him immediately to Barrows in Phoenix, one of the best in the world, where he had brain surgery on March 17. The news: malignant, stage 4 and metastasized to lungs and pancreas or from his lungs to his brain. They weren’t sure. Anyway, it’s spread and “grim” to quote the doctors.

On March 25 he came home and on March 27, the VA assigned him to Hospice of the Valley, our choice. Their initial visit yesterday started the process. There are different opinions of “days, weeks, months” depending on the doctor. Of course I heard the same 12 years ago. when I was diagnosed with breast cancer.  Only God knows and we live in hope, that most priceless of emotions.

David is in good and peaceful spirits.  He said when he came in the door of our home, he was overcome with joy and peace and it shows in his quiet strength.

He’s always had that quiet strength while I feel as though I’ve been thrown headfirst off several cliffs simultaneously. There are not enough words to tell all of you who have rallied how grateful I am, beginning with our brother and sisters in orange who have been there every step of this unbelievably unexpected journey to help hold me up when my knees felt like buckling. I’m grateful for the strength God gave me. I’m not a marathoner but I do know how to put one foot in front of the other and fight for those I love, like David and those behind bars.

I’m so grateful we are together. Although I continue to live in gratitude,  I’m just a bit wobbly right now. Gina’s Team’s incredible group of volunteers has circled the wagons and rallied to bring food and hugs in equal measure.  David says he isn’t ready to “leave” yet and I’m certainly not. More than anyone on the planet, David KNOWS ME. We have been on an incredible journey for 27 years. We have shared prison and the passion of Gina’s Team and the loss of everything but each other. There is great comfort in not having to explain anything to the person who KNOWS you. Despite my thoughtlessness, my over-the-top passion and determination, all my weaknesses and insecurities too numerous to mention, David loves me. I consider THAT a great gift and miracle.

His biggest, strongest wish is for us to continue our focus and work with Gina’s Team. As a matter of fact, he says it’s the most important thing. Something happened to him in the hospital that confirmed that with great clarity. I’ll write about that later.

We do have a special request to everyone all over the planet. The common question to both of us and to everyone else going through something like this is “How are you doing?” There just isn’t an answer to this. You ask because you care, but there is no answer. Perhaps you could skip the question and say, “I just called to say I love you.” Hey, isn’t that a song?  Laughter, music, and prayers, surely the BEST medicine. We are most most grateful  to ALL of you and for laughter and music and prayers.

We are also grateful if you add to those prayers, all those others in pain and grief, behind bars or in hospitals or homeless under a bush. No one’s pain is unique. When we remember that, it’s truly a blessing.

And while I’m at it, here’s another request. Instead of a card for David, would you consider making a donation to Gina’s Team? It’s easy to go to www.ginasteam.org and push a button. If you donate the cost of a card, it will make a difference in the life of someone behind bars or free and struggling to change their life. Imagine, the cost of a card can make a difference. YOU CAN MAKE A DIFFERENCE.

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