Overprescribed and alone, I found myself wondering if beating cancer was worth it
Journal entry, February 11: I can’t move forward until I tell my secret. I know I can’t tell it for myself alone, but for all those who walk the dark path of things unspoken. I must tell my truth for the sake of the silenced and ignored.
“I feel like I’m Sisyphus getting punched in the junk.”
My therapist smiled at this grand analogy. It was the only way I could articulate the experience of necessity as never-ending-ness, of misery as repetition, of life as punishment. Not just Sisyphus, not simply pushing the boulder up the hill to no avail, but also the great arm of Lyssa swinging down from the mountain top, punching me squarely between the legs with each step. Symbols are handy that way, and stories. They gift us a means to express our experiences in Technicolor, vivid with similes and metaphors. A way to make sense of the senseless, to give it shape and a handle we can grasp.
Like when we say “the face of.”
“The face of” serves as a means of understanding the big picture through a single figure, often a way to organize chaos. If we can find one face to signify the whole, then we can wrap our ashen-knuckled fingers around something, anything, to demystify the countless life ruptures we see, hear about, and experience for ourselves. We can grasp “the face of,” the signifier, when the whole overwhelms us. There’s a comfort in it, a survival tool.
My name is Jenny, and I am the face of the opioid crisis.
I cannot tell you my story from beginning to end because, while April 10, 2017, marked the beginning, I still push the boulder up the hill, month after month, while getting punched in the junk, the very image of a woman come undone.
I cannot tell you my story from beginning to end because that isn’t how it is to suffer opioid withdrawal. No straight line, no linear narrative. Only parcels of reality that overwhelm and toss me, rattle me silly, like a bottle of pills or cocktail shaker.
I cannot tell you my story from beginning to end because tapering off of opioids does not gift one a clean story, a make-sense story, a story-arc story. To befall this means living a story without respect for the rules of common sense and a graspable life.
To be “the face of” is survival unadulterated. It is a guttural cry for mercy that does not come. To be the face of the opioid epidemic feels like Sisyphus getting punched in the junk.
We sing a song of survivors.
Allies fill the bleachers,
hashtags flood the webs,
we applaud our appropriation
of suffering without end.
We sing a song of survivors, but only a certain brand. We watch with bated breath as the agonize-o-meter vibrates, ticking this way and that, until it comes to rest on a lived tragedy worthy of telling and hearing and labeling. We take note, mark our scale from the gasp-invoking to stomach-turning, as we determine what deserves an audience.
We calculate the worthy story, humming the song of survivors.
I sing a different tune: If someone had told me that this is what surviving cancer would look like, feel like, be like, I would have been hard-pressed to follow through with my treatments. Why suffer only to suffer, and in suffering, raise my risk of cancer recurrence?
Living the rhythm of life, a survivor’s song, like a scratched LP, stuck, skipping, skipping, skipping.
But nobody wants to hear about that.
Because, as I’ve come to discover, from well-established publications to some of our greatest thinkers and writers, an ugh-not-cancer-again gauntlet has been tossed at the oncologist’s doorstep, the worthy story defined: the New York Times, in outlining their qualifications for a “lives story” states, “Do not make it about illness or death, unless that is the story you have to tell.” Roxane Gay, in the introduction to a story collection she curated, wrote, “I offer up the kinds of work I am not really interested in reading―(…) stories about cancer.”
Hard-knock truth: it felt like a sucker punch, reading those words. The unworthy story unabashedly announced. Stories silenced, survival classified. A stamp of disapproval for the wrong kind of survivor. An echoing emptiness where the nuances of the cancer experience should live, an experience replete with issues of class and gender and power dynamics, an experience with nefarious turns, plot twists like sudden poverty, questions of womanhood, and medical malfeasance. Cancer as stories about finding oneself dirt poor and shit outa luck, parsing out what it means to be a woman without breasts, and near overdoses stemming from cocksure negligence. I never considered that my survivorship would be questioned, that my story wouldn’t meet the worthy-survivor criteria announced and presented as truth. I never considered that my unique experience might strike others as a bore or burden or inspire disdain.
To survive is to live an excruciating consolation prize for not dying―emotionally, psychologically, literally―from some unspeakable wrong. We feel entitled to qualify and quantify trauma and those boundless wrongs because it gives us a sense of control in an unforgiving and uncertain world, a sense of moving beyond and rising above.
Worthy or not, I refuse silence.
Nonetheless, if you will bear with me for a moment, for the sake of context: I am a young breast cancer survivor who did not respond well to the abuse that is cancer treatment. As a consequence, I was prescribed a low dose of methadone to help combat overwhelming post-surgery and radiation pain so that I wouldn’t acquire an addiction to oxycodone. In the course of that pain management, my provider miscalculated a change in my methadone prescription, resulting in a jump from 6.75 milligrams (mg) per day to 45 mg per day, a jump nearly 10 times what I should have been taking and which I was working to taper off of, a jump that would propel me off a cliff into a Frankenstein-like trauma story. The end was medicine gone wrong and without redemption.
There, now that wasn’t so bad, was it?
I don’t know why we’ve singled out illness survivors as storytellers not worth the listening. Maybe because we illness survivors are ubiquitous―sort of. Maybe because we illness survivors embody some of our greatest fears―nobody wants to receive the positive-biopsy call. Or maybe we, each and every one of us, have become so numb to the suffering of others that we feel compelled to illuminate only the worthy stories, to prevent the survival market from flooding. Repression as sanity savior.
Worthy or not, I refuse silence. This survivor, regardless and in no uncertain terms, will be heard.
For two years I worked in special education as a paraeducator. I remember the first few weeks of school, not so much for the goings-on in my classrooms, but for the spectacular spectator sport of watching the chaos that was the kindergarten broods. By no fault of the teachers, but by the nature of the barely controlled madness, the tiniest of the schoolchildren would run amuck, darting in all directions at once, as said teachers attempted to educate them in the skill of standing in line. Teachers’ lounge horror stories abounded, detailing the mayhem and falderal that ensued those first few weeks―untamed tater tots prone to unbridled weeping, wailing, and wetting of pants. Little beasties would crawl atop and under tables and chairs, while bitty sprinters bolted out of classrooms and across fields as though making so many futile prison breaks. The teachers kept a certain bedraggled, determined, tight-lipped smile plastered on their faces until a few months in, when it would relax into general heartfelt exhaustion.
Like gerbils on meth, I would say, laughing from the sidelines at the tiny-tyke tornados.
It’s taken me quite some time to figure out how to describe the methadone-withdrawal affected brain, the way it works, or more accurately, doesn’t. Like gerbils on meth. Like a classroom of unruly, untrained kindergarteners. Like the first few weeks of school.
“May I start my taper after I teach my workshop this weekend?” In my mind, this seemed like a reasonable request, given the tsunami shitshow that is opioid withdrawal. I didn’t want to find myself drowning while teaching. It was the only crumb of employment I had on my calendar, my parcel of passion. I love to teach creative writing to a room of eager wordsmiths. It makes me feel alive.
As I would come to learn in the months and years to come, addiction is a word spat, not said.
Nurse practitioner Joanne narrowed her eyes into accusatory slits. She looked at me as though I’d asked her to do lines on the examination room table. “Well, I don’t want you coming back in two weeks with more excuses or reasons to not begin the taper.” Her words slapped me so hard my teeth rattled. I flushed with shame I didn’t know lived inside me.
It wasn’t my first foray into the bleak world of health bigotry, but it rang louder than previous moments, a symphony of scorn. As I would come to learn in the months and years to come, addiction is a word spat, not said. It carries the weight of the pernicious unknown and misunderstood, burdened with assumptions, misplaced definitions, and unforgiving judgments. It embodies our tendency to seek out the drama, the tragedy, the spectacle of life gone wrong, and make a self-righteous feast of what we don’t understand beyond countless grotesque headlines and worst-case-scenario stories.
“What about other work? Will you want to put off tapering for that as well?” The nurse practitioner looked at me, eyes cold and impassive.
I felt panic and tears rise into a frenzy I could barely contain. I had fought hard for months to find an oncologist who would take me on, a cancer survivor overprescribed and deathly ill on methadone and, while the nurse practitioner stood in for her at this particular appointment, the fear of losing it all knotted my stomach into a tangled mess of terror and nausea.
“Okay. Okay. I’ll start now,” I said, my eyes welling. “I’ll start the taper now.” I wanted to die for more reasons than I could organize into a list. The shame hurt, like a million jagged pinpricks. “I just didn’t want to be in withdrawal while I teach my workshop. It’s only two days, and I don’t have any other work to worry about. But I’ll start now. I’ll start now.”
Joanne pursed her lips and stared at me, measuring whether I could be trusted to not come back in two weeks and make more excuses. “No. No, you can teach the workshop. But you have to start the day after.”
I ached for the one day of decompressing after teaching for two days, but I saw no other option than to say, “Okay. I will. Thank you.”
I thanked her. For shaming me, for accusing me of being deceptive and avoidant, for questioning my integrity and dedication to tapering off of the overprescription that was the fault of another nurse practitioner just like her. I felt like dirt, like I’d let myself down, trapped and governed by the misgivings of a virtual stranger. I knew the truth, but the truth didn’t matter, a fact that would haunt the halls of my titration.
Similar scenarios would play out as a backdrop to the suffering of the withdrawal itself. Again and again and again. As I would discover the hard way, in the minds of most health care professionals, pharmacists, and general folk, there exists no difference between addiction, drug-seeking, and physical dependence. That regardless of the truth, I was, by the nature of the monster they conjured in their minds, guilty, suspect, and inherently dishonest. And if I protested, I was in denial. I couldn’t win — scratch that, I can’t win.
But I can offer an understanding, a perspective, empathy for those struggling with any or all of them. Whether an addict, a drug seeker, or unwitting victim of physical dependence, I can say with confidence that if we are to truly and objectively find a tenable solution for the so-called opioid epidemic, we must delineate and discern, not assume and accuse. We must put aside our false notions and ask the right questions: Why do some feel driven to check out from this life in the way that only opioids can offer? How can we help those struggling and suffering in the pernicious clutches of substances that refuse to leave without a knock-down, drag-out fight? When will we learn that healing doesn’t rise from shame, but from compassion, encouragement, and persistence?
I am physically dependent on methadone, but I am not an addict or drug seeker.
Do you believe me?
Your answer holds a precious piece of my independence.
“I feel high as fuck.”
Three days previous I had begun an altered dose of my methadone prescription, a change from liquid to pill. Phone calls had been made. Something was wrong. I became so ill after taking the first adjusted dose that I couldn’t move or stop the vigorous swirling, couldn’t think or stay awake, couldn’t keep my stomach from raging with nausea. At the same time, I was quite sure I’d never felt so alive, so capable, so boss bitch in all the wrong ways. The world had taken on a soft-focus quality, there was an airiness, a feeling ripe with possibility, an I-can-conquer-anything-if-I can-just-get-over-this-wrong-sick-feeling-ness.
This appointment would set things right, I counted on it. It would explain the extreme reaction to the change. No one expects the disregarded near overdose.
I feel high as fuck.
The oncologist’s office smelled of fear. Cancer-diagnosis musk whirled around me like a dust cloud or a tumbleweed tumbling like rolling hills. Nurse practitioner Vanessa sat across from me. She only smiled sardonically, health-care-provider-knows-best, and, even in her kinder moments, gave off a disingenuous stink. Pungent, cocksure, but with saving grace, once-more-with-feeling energy.
“I’m so glad you’re feeling so good.”
This simple sentence seemed odd at that moment, if not grammatically embarrassing, and within a few months, it would reveal itself to be the very definition of pernicious negligence in real time.
We rarely hear the death knell of everything we know to be true and right and predictable in life. Short of a gunshot marking a violent end, we miss the mighty clang, a sound as period marking the end of a sentence we’ve come to live by. A chapter finished — abrupt — a door slamming.
In the months to come, I would agonize as I pushed self-blame like a boulder up the hill for not fighting harder, screaming louder that day how wrong everything felt―that I didn’t feel good. I would weep that I had failed to hold fast to my truth under the condescending gaze of my health care provider who knew best by the nature of her position, a nurse practitioner who, while knowing best, came within a hair’s breadth of killing me.
But first, I was high as fuck.
So, like, a question:
You know when you go to a party, and you have a few drinks, and you think you’re all good, maybe a little buzzed, but not “drunk,” and you don’t always talk so much, but you’re just feeling easy, breezy, chatty — you’ve got something to say — and you’re less hammered than the rapt crowd surrounding you? You know? And, like, what’s the harm in one more glass? It is all good. You are all good. You’re not lit, no, you light up the night like some kind of genius fireworks show. Your wit and insight are off the hook: You’re the star of the party.
But then, the next morning.
Damn it all, you wake up, mouth dry, brain swelling in your now too-small skull. And the haze may be radiating from your very core into the swirling room around you, or maybe the haze is the room, seeping from the walls and enveloping you.
What the hell were you thinking?
Okay. You were okay. You were all good. But damn if you didn’t talk a lot, and loud, and did you twerk? You think you may have twerked. Or cabbage-patched. Or nay-nayed. Yeah, you did that and more. How could this be, when you were so fine, so on point, so not drunk? The evidence to the contrary makes your stomach tumble like a dryer full of throw pillows.
Methadone withdrawal, the process of tapering, feels like the definition of chaos. More than one practitioner told me it would be a shitshow. It is also the story told again and again and again of how I think I’m okay(-ish), on point(-ish), pulled together(-ish), only to wake up again and again and again and realize, with a welling of bile and tears, that I was the drunk fool at the party. My “all good” was all perception and self-deception. Reality begins to wobble, and after a while, again and again and again, its existence becomes disconcerting, if not questionable. Those close to me, those who know, say that I’m better than I think I am, sharper and indeed on point, but I struggle to believe them. That’s not how it feels, and how it feels swaddles and suffocates me.
I am an expert in the field of second-guessing myself. Is it me talking, or the withdrawal? Am I okay to drive, or do I just think I am? How altered am I, how clear, how in between, and how afraid should I be to subject the outside world to my maybe fucked-up-ness? There never was a party, was there?
“You’ve had a collapse of identity.”
My therapist takes her hands and bows them together, fingers intertwined. This is what a collapsed identity looks like. One hand me, the other methadone. The hands don’t stand alone, but fall into one another until they become inextricably entangled.
I have become my experience, my own personal hell, my inescapable suffering.
My eyes usually dart around the room, but I stop and stare at her woven fingers, my collapsed identity as a visceral metaphor. “How does it make you feel to hear me say that?” I hate when she asks me this, but it’s what I pay her for, since my insurance won’t. Really, it is her gift to me. Painful to admit, but nonetheless a gift.
“It’s true. The methadone, the withdrawal, has swallowed me whole.”
There is no dividing line, no border, no wall between me and what is happening to me, what has happened to me. I have become my experience, my own personal hell, my inescapable suffering. I don’t know who I am anymore. It is: “I can’t pull myself together to do what I need to do.” Not: “The methadone withdrawal hinders my ability to pull it together to do what I need to do.”
I yearn to separate those hands. I long to unsnarl those fingers. I live the collapse.
The drive to cover one’s own ass is a hurricane-strength gale overtaking and destroying everything in its wake including all semblance of sense and integrity.
The nurse practitioner who damn near killed me with a methadone overdose lied about who discovered the mistake, tried to take credit for what I had brought to light, planned to withhold the substantiation of what I knew to be true, to wait the weekend before she told me what I had revealed on Thursday. She took no real responsibility, but made every effort to lay the blame on me — I had already been struggling before the overprescription, so what difference did it make, really? She dismissed any mention of recompense, and instead shamed me for being on Medicaid and threatened to ship me off to a county methadone clinic if I didn’t continue to see her as I worked to taper off of the near overdose.
With the revelation that she had mistakenly upped my dose by nearly 10 times, nurse practitioner Vanessa ceased to do her due diligence to first do no harm, ceased to treat me as a patient under her care, and ceased to concern herself with anything but covering her glaringly guilty ass.
We all know that feeling of unbridled terror when we’ve epically fucked up, the impulse to cover our own asses at whatever the cost. But these moments, what we choose to do, how we choose to react, those truths we risk telling, make up the sum of our character. Because while an ass may be on the line, so may be a life, and how you choose to ride that line speaks volumes about what sort of person you are, and not what you claim to be. And like it or not, eventually, we have to grow up and deal with those “Oh, shit” moments as though the stakes are as high as they really are.
There comes a moment of truth when we must choose the right path, albeit the painful path, or the self-preserving one, the nose-thumb, consequences-be-damned path. Nurse practitioner Vanessa chose the latter. But I’m alive, I survived her malpractice, she failed to kill me, and short of any other tangible recourse, I live to tell my story, the hard truth. Consequences and all.
c. 1300, from Old French eclipse “eclipse, darkness” (12c.), from Latin eclipsis, from Greek ekleipsis “an eclipse; an abandonment,” literally “a failing, forsaking,” from ekleipein “to forsake a usual place, fail to appear, be eclipsed.”
In the summer of 2017, I took advantage of a prescription mishap — not the first slip, not the last, and sure as shit not the worst — an unexpected stash by misstep prescription, not one acquired by negligence. Numbers lost in the chaos of the necessary change in providers and oncology clinics as a consequence of my near overdose by overprescription. The shift had let slide a doubling of my already wrong prescription, and so I found myself with a small bounty. Twenty game-changers, 20 possibilities, 20 departures.
I coveted the white triangular pills, scored down the center.
On both sides, the writing on the wall:
Side A: 57 | 71
Side B: M, encircled with a rounded-edge square.
Like 20 tiny albums, when albums were albums, all the pieces came together to tell the story as a whole. The story of what these pills were, the power they wielded reduced to the most basic of markings. Simple, graceful, fulfilling. Like when albums were albums.
It was the summer of the total solar eclipse, a summer that began with my opioid overprescription revelation, a darkness and shadow cast that I did not yet fully understand. It was the first full solar eclipse since February 26, 1979, when I was just over a year old. Astronomers and astrologers, conspiracy theorists and alien aficionados, amateur photographers, and just plain interested folk camped, girded themselves, wandered out of their houses to witness what they couldn’t look in the eye. I was staying with a friend on Mountain View Road, which, true to its name, had a spectacular view of Mount Baker from the expansive backyard.
I didn’t amass in secret the 200 mg — 20 pills — because I wanted to take them. Not right then, at least. I collected them as a Plan B, a just-in-case, an escape hatch. A sense of control in a life spun out.
I rummaged through my friend’s kitchen when nobody was around until I found a small jar shaped like a Grecian urn and topped with a papered lid that read: Dalmatia Fig Spread. I took the jar and quietly padded past my friend’s mother, afflicted with late-stage dementia and snoozing in the living room, and huddled myself in the guest bedroom, door closed and locked to ensure that said dementia patient wouldn’t come shuffle-barging into the room she once shared with her late husband.
I liked the way the pills looked, lying next to and atop one another at the bottom of the jar. I had done my homework, knew how much an already overprescribed health care customer would need to take in order to run tail from the reality to come. Years stolen while tapering off of the white devils and suffering egregious withdrawal every step of the way. I shook the jar and was surprised to find that it clacked more than it clinked. I don’t know what I expected. It’s not as though the pills were made of stainless steel. And yet I was surprised.
It was my secret, a secret within a secret, as I would hold close the eclipse of my life, from humdrum me, to cancer survivor, to an opioid-dependent stranger.
I placed the jar on a trunk that served as a bedside table, in front of a salt-rock light that glowed pink, backlighting my precious collection of sweet reprieve. Soon, I would wander outside and witness one of nature’s most magnificent phenomena. Rare. Significant. But that wasn’t until later in the morning, and before I tromped outside and down to the pond to see what I couldn’t see, I stared at my jar, picking it up, and feeling the cool glass in my hands every now and again. It was everything. My whole life contained in a jam jar.
I never told anyone about it. Not my therapist. Not my oncologist. Not even my oldest and dearest friend, sleeping just a few walls away. No one. I wouldn’t be locked up or watched over with furrowed brows or stigmatized any more than I already was. It was my secret, a secret within a secret, as I would hold close the eclipse of my life, from humdrum me, to cancer survivor, to an opioid-dependent stranger.
Midmorning arrived, and I took pictures of the eclipse with my phone while gazing at the tips of the evergreen and maple and oak trees encircling the pond. The fish leapt, more than usual, it seemed, and the dragonflies lit lightly on the water’s surface to the quieted song of the field crickets. The blocked sun left sliver-moon shadows on the unpaved road. It was private property I embraced as my own. Another escape hatch. For a moment overshadowed, for a moment darkened, for a moment something like a lived Mary Oliver poem, life failing to appear and appearing nonetheless.
The eclipse ended without ceremony. I kicked up dust as I walked back, down Mountain View Road, to my friend’s house. I said, “Hi, Mrs. Lozier,” just as I did every time I saw my friend’s mother, awake, lost and found in her fog of dementia. She chortled, as I made my way to what was once her room, locked the door behind me, laid down on the bed beside my jar of pills, and, phone in hand, looked back over my myriad photos.
This would be the first of many seasons, many bedside tables, the sun and moon sky dancing, obscured, as my precious opioid accumulation faithfully gifted me a notion of control in the painful passing of days and weeks and months, then years. I held fast to their potential. Permanence as a shadowy reprieve. Lost in abandon. A 200 mg eclipse.
I know the voice of withdrawal howling in the recesses of my soul. It is unforgiving, but I know its rhythm, the upbeat of truths too painful to process, the downbeat of deceptions dressed as reality.
I want to die.
That’s the taper talking, I tell myself.
I want to die.
That’s the taper talking, I tell myself.
Once, the taper told me that, even if I died, the withdrawful rage-grief-anxiety beast snarling inside me would hunt me down and haunt me through the infinite rooms of the afterlife and into whatever lies beyond. For an hour, I believed it. I felt it to be true. Even death wouldn’t bring me peace.
But now the norm: Me, caught in an I-want-to-die loop. And although I know it’s the taper talking, the death-wish knell rings true just the same. A splintered reality. The overwhelming and inconceivable become mundane.
In the course of post-cancer treatments, a woman is overprescribed methadone and nearly dies from an overdose. Which of the following scenarios are true:
A. Multiple attorneys tell the woman that she is indeed the victim of medical malpractice but that it’s not worth the time, money, and energy it would take to unearth some semblance of justice and recompense.
B. A private coaching client of the woman accuses her of being too drug-affected to know what she’s talking about and do her job effectively. A mistake has been made, and 15 minutes later the client texts an -ish apology, an -ish admittance that the woman was indeed in the right, the client -ish wrong.
C. The ombudsperson for the state health authority misleads the woman about the care she will receive in the course of tapering off of the overprescribed methadone, leaving her with less than nothing, admitting no significance to the near-death.
D. All of the above.
Which of the following headlines are real:
A. “A New Fred Hutch Study Finds That Cancer Patients Who Go Bankrupt are Much More Likely to Die.”
B. “Financial Toxicity Associated with Cancer Care.”
C. “Can Financial Advisers Save Clients from the Financial Ravages of Opioid Addiction?”
D. “Opioid Billionaire Granted Patent for Addiction Treatment.”
E. All of the above.
Which of the following best summarizes your experience with opioid dependence and withdrawal:
A. I have no idea what either is truly like.
B. I have personal experience with one or both of them.
C. I know someone who has experience with one or both of them.
D. Everything I know I learned from TV and movies.
We find comfort where we can, grasp for it, gasp for it as though we’ve been held underwater at the public pool.
I turn up Toto’s “Africa” as loud as my withdrawal-induced hypersensitive ears can take. It’s still winter, but my dino-car, a 1992 Nissan Maxima, billows air conditioning year-round, with the yawp-worthy licentiousness of something that doesn’t have to pay for the gas-guzzling consequences. Disconcerting smells fill the car, a nauseating sickly sweet, gasoline, burning rubber, and something else that smells like car death.
The state of things, the waves of withdrawal despair, the muddle-headedness that has become a disconcerting norm, my damn dying car, overwhelm me.
I start to cry. I can’t catch a break. Between sobs, I sing along with Toto. It feels like a hug after not being touched for a very long time. It’s the most sing-along-able, nonsensical-yet-opaquely deep song ever, and I love it. Without shame, with tearful wild abandon, in my death knell automobile, I belt out the harmonies.
We find comfort where we can. If only for four minutes and 55 seconds. I find something like a wounded peace, a tenuous calm, a reason to sing.