I’ll goof around on Facebook, Twitter, and other social media playgrounds because I can’t focus on anything else. My writing, my art, my family and friends—my world—float far away from me. I struggle to integrate my worlds, my private day-to-day with the intensity of my public life, and most of all, the fierce nature of my prison work. I battle to find balance, to shift back and forth between my life of writing, family, and friends, and the powerful soul connections I build in prisons.
I’ve learned from several therapists in their “shop talk” that an estimated 10 percent of a client’s “stuff” sticks to the therapist—the stories, the energy, the problems. I’m not a therapist, but the energy from the thousands of inmates I meet, and from staff and management, soaks into me, along with the stories of their families and communities.
Overall, what I’ve collected from dozens of prisons and thousands of incarcerated women could fill a warehouse, a city, a world of other women’s trauma, sorrow, and loss. After facing gyms full of incarcerated women and girls ranging from ages eleven to eighty-five—yes, I’ve met girls this young in youth prisons—I understand how we share a humanity, inside prison or out. These top ten questions arise wherever I speak:
“What do I do with the pain?”
“Where will I find support after I leave?”
“How does spirituality fit into making life changes?”
“How can I find relief from the guilt?”
“How long does it take to figure out a purpose?”
“Will my children ever end their anger with me?”
“What makes you think you can do what you do?”
“I’m losing my children, my family. What do I do now?”
“How do I handle the fear of change?”
“I’m not sure: do all secrets need telling?”
Who of us out hasn’t wondered some of these same things? In fact, when I keynote at a conference of professionals, attendees often ask some of the same questions. I can’t offer absolute answers because I don’t think there are any when it comes to emotion. I just know my story, how I’ve learned to walk in this world of beauty with all its uncertainty.
My work now is to turn myself into more of a sieve and make sure I renew myself in between each prison tour.
GRIEF AND UNCERTAINTY trapped me for most of my life. What if my attempts to eliminate those two feelings had been my real prison?
Maybe I’ve asked myself the wrong questions all along. What if the fight against sorrow, fear, and uncertainty confines us in misery? A wall of fear and resentment, not a bricks-and-mortar prison, had constricted me, even though I was free.
After all those years of anguish, maybe I needed to start asking, “What can I do to feel deep contentment with life on life’s terms?”
Beneath everything I’d struggled through lay a path of seeking happiness. It’s a multibillion-dollar industry: self-help and the happiness quest. And I dove in. I’ve tried positive thinking, visualizing goals and dreams, hypnotherapy, every self-help book and trend, to transform myself, to change my thoughts and feelings—and I learned much from all of it.
But what if we change the premise? Maybe we’re all hooked on a flawed goal, like addicts in pursuit of the next fix, looking for a quick release.
As a culture we’re led to believe we must reconcile everything. We’re a now culture, a fix-it culture. I for one am a right-now person. We aim for reconciliation, and we want it right away. We kick into resolve-now mode in a desire to make everything better. We demand solutions for climate change, for social justice, for political rightness, for a better economy, increased gun safety. We demand solutions, and we want them right now.
Happiness appears, then hides, a moving target, while contentment, when we find it, is for keeps. My search for ways to ward off the discomfort of uncertainty and sorrow—the drugs, excessive drinking, the jump from relationship to relationship, the marathon run away from my demons—kept me locked up. Not my prison birth, not foster care, not my adoption, not the racism and sexism around me, not my struggle about faith and spirituality, not the bad relationships, not the worries of motherhood, not betrayal by family members, not the stretches of poverty in my life, not the loss of businesses and housing.
Even after I cleaned up and changed my lifestyle, my new world brought a different kind of entrapment—overwork and a search for perfection, for happiness targets, and goals like excessive workouts at the gym, the drive for more money, more property, more acceptance by my peers. More more more. I always yearned for what was ahead, which was never enough if I always steered away from the present moment.
No matter where we are, now is all we have.
The exact conditions I battled to avoid—the grip of loss, sorrow, and uncertainty—freed me to live fully, to taste life’s rich flavors.
I continue to live with uncertainty. I’m still in search of information about my birth father and about which boxes to check for race other than “multiracial.” I’ve now discovered through DNA tests that I’m part Taiwanese, in addition to being part Greek and part Latina, plus—as my prison documents revealed—the possible “one drop of blood.” Now, rather than an outcast, I’m a perfect palette of paints, part of the new multiracial demographic. According to the 2010 US Census, the trend indicates that one in every five Americans will be multiracial by the year 2050. In a few decades I’ll be in the majority.
I continue to live in uncertainty about my race and about how I was conceived. Given my prison mother’s lifestyle, for all I know, I could be the product of rape, of prostitution, of a one-night stand, or of a weeklong affair. I put some of these questions out of my mind. Instead, I hold dear the year my birth mother and I shared in our palace.
We live in a culture that pushes us to think of happiness as an end goal. When I lived in Tokyo, I remember one of my Japanese friends asked me why in the West people focused on happiness as an objective. I didn’t have any answer for her. By this time I’d already shifted my focus away from happiness and looked to contentment for the best place to rest.
But I used to. Along the way, I set happiness markers and clung to them as if each one would rescue me:
When I graduate high school.
When I turn eighteen.
When I move to another city.
When I quit drugs.
When I quit drinking.
When I find the right partner.
When I buy a house and find a better job.
When I make more money.
When I dye my hair, or I lighten my skin, or when it darkens more from the sun . . .
I had no idea how loss and pain, if grieved, could lead to contentment, even if it took twenty years to mourn. I can’t identify the exact moment it happened, when a vastness opened inside me like a torrent of warm summer rain and cleansed any doubts I held whether I could go on living with the sorrow.
Yes, I’m happy today, and for no specific reason at all I’m filled with joy. If I’m sad and sorrowful at times for whatever comes about, in the same moments I can feel contentment and find humor and joy. Sorrowjoy, because if we sit still inside and let it in, they live together and we thrive.
CHAPTER TWENTY-FOUR
THEN, THIS
THE TRUTH IS . . . MY LIFE IS GOOD. I’m lucky for life itself, to have outlived the lineup of harrowing escapades. Best of all, I’ve made peace with the family I rejected for so long. I’m grateful for each second, third, and fourth chance at life, grateful for all those who’ve stood by, who believed in me.
One day several years ago I applied for life insurance, something to add a little security for my family. I’m a mother after all. I’m supposed to think of these things. My father didn’t believe in life insurance—he said he didn’t want anyone to profit from his death. Why not, though?
I MAKE AN appointment to fill out a life insurance application, and when the nurse shows up at my studio office with the form, she draws a little blood and asks me a series of questions, none of them memorable.
A week later she calls. “Deborah, we have to decline you for life insurance. Your liver enzymes measured six times the normal level.”
Liver enzymes? What the hell is that? The last time I heard the word enzyme was in high school chemistry. I’m in perfect health, toned from working out, and feel great, other than the exhaustion I have all the time. Since I’ve cleaned up, I’ve never even had a headache and can count on one hand the times a flu or cold struck me. Even with little kids, after I got the mandatory colds they bring home from pre-school, I’ve been immune to every seasonal bug.
The nurse goes on. “You should call a doctor.”
I’m at my desk and the autumn sun slashes through the window at my back and casts its yellow onto the teak desk, the one my father used in his study. Now it’s mine, cluttered like when it was his, with piles of paper stacked into geodesic configurations.
“Immediately,” she adds.
My heart jackhammers into my throat. I ask her what it all means, and she says, “I’m not allowed to diagnose or discuss any more details.” Which frightens me even more.
I don’t remember if I asked any more questions. It starts again, my habit of emotional lockdown.
It turns out I have chronic hepatitis C, an incurable liver virus, similar to HIV/AIDS in that it’s transmitted by blood and, I’ll say again, incurable. The liver biopsy—a stab with a foot-long needle to core the liver and analyze the sample—showed I’m in midstage. I’ve never asked stage of what, because I feel fine.
I’m a mother of two small children and carry this invincible feeling like I’m still a teen—time will never end and there’s no limit to life. I’d been born into loss, and after two decades to break its shackles, I’ve worked hard to build a filter for impulse control and to catch up from emotional delays of early trauma and a lifetime of drug abuse. Now this?
I survived death-defying feats, unprotected sex, and a risky lifestyle. I’d stood up after sorrow sent me to the mat, flat on my back. At last I am serious about life and about living and staying alive, and now, I’m face-to-face with the possibility of death.
I can’t stop my mind from spinning. How did I contract this? Did it happen because I shared needles as a former IV-drug user? Or did the tattoo artist in San Diego at the street-side dive use a dirty needle on me? Or is it one more legacy from my birth mother? Did she pass it on to me in her womb?
I’ve never heard of hep C. Now what? I hit the Internet, a double-edged razor because there are facts, and then opinions posted as facts. The web offers as much of both.
More than four million in the United States and 170 million around the globe have hepatitis C, according to the World Health Organization. It’s a sleeper disease, often with no symptoms. If I’d never applied for life insurance, I’d probably never have found out about it. If I’d kept drinking and ingesting drugs, I’d have keeled over a long time ago. Some of what I learned about symptoms helps explain the deep fatigue I’ve felt. However, I’m a mother who needs much more than young children to tug her into exhaustion.
MY BODY TALKED to me for years, maybe even the stomach bleeding from my drug days and then, later, the loss of appetite, fatigue, muscle aches, occasional nausea, abdominal pain, jaundice, generalized itching, most of these I’d experienced. The progression of the disease into later stages can mean liver scarring, which leads to cirrhosis. Late-stage signs include vomiting, an altered mental state, stupor or coma, internal bleeding. Most of these I’d experienced before, induced by street drugs. Not to make light of this but still . . .
Later stages can lead to dire circumstances, ones I can’t even put on paper or discuss because I am determined to focus on quality of life and not my diagnosis. Or maybe I just can’t face reality. I was never good at this. Not until I’m forced to by, well, the dire circumstances.
Here it is again, stigma. Only now it’s the stigma of an infectious disease. I already know about living with an incurable disease, addiction, but this is different.
How will I ever get past the feeling that I’m tainted? This time it’s literal. My blood is tainted with a virus. I can’t ever donate blood, and when I get a cut, I need to make sure no one touches the area, especially if the person has an open wound.
I’m forced to figure out how to live with an incurable disease, how to remain positive through it all. Incurable for now. Our world changes at a fast pace, and who knows, any day someone might discover a cure.
As much as family and friends want to help, it’s still hard for anyone to understand what it feels like to live with an incurable disease unless you’re living with one. I think of Mother and am glad she’s not around to learn about this. She’d fret, which would then make me fret. No mother wants her child faced with a health issue. I think of Mother during her illness and dying, how I knew she felt afraid. I could see it in her eyes and yet we never talked about fear. I am my mothers’ daughter, both of them. I choose to shift through and beyond the fear.
I learn the hard way about support groups when I attend one for people living with hep C, sponsored by Hazelden, celebrated for their chemical-dependency treatment program. I figured it’s a known brand, so why not? At first when I walk into the room, I plop into a cushioned chair off to the side. Everyone else has pulled up a metal folding chair in a rough circle. I’m still shy in groups and sit alone.
A facilitator begins with his introduction, then we go around the circle of about twenty or so people, and each one gives a brief overview of her- or himself. Most people talked about their interferon treatments and about their fear of dying and of feeling nauseated.
I refuse interferon because I understand it replicates chemo with its side effects of depression, a possible relapse into addiction, and suicidal tendencies, all of which can last for more than a year. Great, a treatment with side effects worse than my symptoms, which are few. No thank you.
My doctor persists in trying to persuade me to undergo this treatment, and after months of feeling pressured by him, I find a different doctor who practices East-West medicine. I feel healthy and take herbal and Eastern medicines, along with doing shiatsu and other muscle-healing approaches to relax.
When it’s my turn to speak in the group’s first meeting, I say, “I never think about hepatitis day to day.” I paused, shift in my seat, scared of the silence. “In fact, half the time I forget it.”
All eyes stare at me. No one says a word, and the person next to me doesn’t begin his turn.
None of them, of course, knows about my ability to tuck something away in a little pocket in the back of my mind when I don’t want to think about it. This time it serves me well. I figure that if I focus on the disease, I won’t heal just by worrying about it. So why worry?
The facilitator turns to the others. “How does everyone feel about Deborah’s denial?”
Huh? Denial? I didn’t say this.
I don’t remember anything that happens after this because I sink into my lockdown mode, feeling exposed, alone, and vulnerable. As soon as the group ends its two-hour session, I bolt and never return. Good thing I’ve learned to go with my instinct and trust what doesn’t feel right. This group was the wrong place for me.
There’s no one right way to live, and no right way to live with a diagnosis. It’s a good idea to focus on a healthy lifestyle, and maybe it’s a time to think about personal growth and life’s bigger meaning. Still, how we react is a personal choice.
Soon after the diagnosis, my mind races with all sorts of thoughts. What about my future? Have I lived as well as I could? What about sex? Do I stop my dreams—are they over? I just started to dream big! I’m scared. My kids! What about my darlings, their little-girl lives ahead of them and their mama . . .
I can’t fill in the blank. Their mama, what?
I have my children tested, and neither of them carries any sign of the virus.
In a way, at first I take the diagnosis as if it were payback time, as if I’d been handed a life sentence. At the same
time, my attitude is, fuck everything and treasure everything.
Then, flash! I recall something from high school. Right after one of my annual physicals, my mother had said, “The doctor called. You need to return for another test.”
I was old enough to drive by then, so I zipped back to the doctor’s office. All I remember is when the results came back to my mother, she reported: “They said your urine looked like you might have hepatitis or something like that.”
I remember precisely the word hepatitis. I never looked it up and thought it was some boring word related to health. I’m seventeen after all, and what girl, especially the kind I was, pays attention to her mother or doctor?
“Drink lots of water,” my mother said, almost as a scold and a command.
But there was no more discussion and I never asked one question.
With the new diagnosis, the thought flickers through my mind: Did I inherit this from my mother in prison? In utero transmission is infrequent. Infrequent but not impossible. So is a baby born in prison, infrequent.
My next thought surprises me: “My mothers are killing me. One from secrecy, the other with tainted blood.”
But this drama moment passed right away because my new muscles for rational thinking kicked in. I’ll never find out how I contracted this, and I can’t get lost in the “what if . . .” I never take the route of victim, so all I’m left with is the stance of warrior, away from the path of suffering. It’s the default I choose as a woman, to veer away from the old story of victim and create a new one where we are warriors, brave and soft in our courage even when afraid.
The diagnosis launches me onto a familiar road—the unknown, an adventure. Fight this damn thing. I pull on my Well, then, let’s see what happens boots, and I’m ready to take this on. Inside, I both brace myself and soften into this new awareness. Instead of thinking, “I have an incurable, chronic disease,” I use the language, “I’ve been diagnosed with hepatitis C, and so far there’s no cure.”
Prison Baby Page 15