Dying and Denying
In December 2005, it would be fair to say I was not a happy camper. I was debating the future of my twenty-three year marriage, and I thought the job I had once reveled in was killing me. Literally killing me. I desperately needed a change; anything that would relieve the internal strife that was causing me to struggle through even an ordinary day.
In the past whenever I felt a similar unrest, I had been able to dream up visions of new happiness, set plans, and manifest those dreams. That’s how I’d come to be living near Asheville, in the beautiful mountains of Western North Carolina, with Michael, the man I had long considered my soul mate, and was six years into an interesting, seemingly meaningful position in economic development at the Asheville Area Chamber of Commerce. But as 2005 was drawing to a close I felt too tired to do anything but deal with daily demands. I was uncomfortable with the status quo and yearned for a magical elixir to reignite my ability to dream big. Something was eating me alive, and I couldn’t put my finger on exactly what it was.
The dilemma in my marriage was not a crisis of love. I loved Michael as much as I had when I first described him in journal entries at age twenty-something (before we even met), but the reality at that time was that our lifestyle had become so comfortable, so routine, so separate, I wondered why we bothered to stay together and whether that kind of marriage, the kind I suppose most people enjoy or simply accept, was enough for me.
And my job? Well, changes in personnel and politics, both within and outside the Chamber of Commerce, had diminished my role and created roadblocks that were making it difficult to effectively help my clients throughout the community. There was much stress and very little satisfaction in the new busywork I was being asked to do. And strangely, though the work was less complex, it seemed more and more difficult for me to concentrate and complete projects, even those that should have been easy. When I left my office each evening I was so depleted of physical and emotional energy that I had nothing left for Michael or myself.
When 2006 replaced 2005 on calendars and checkbooks, I took my first steps toward uncovering a new path, jotting down job search fantasies in my journal. Changing jobs was something I’d done many times in my career, and seemed less daunting than confronting Michael with dissatisfaction I could hardly put into words. Given the quality reputation and contacts I had developed in my six years with the Chamber, I felt confident about finding worthwhile employment, even in the limited Asheville job market. I was betting that a career change would add enough spice to my life, so the marriage dissatisfaction bubble would just disappear. Unfortunately, the world didn’t open up for me when I finally turned in my letter of resignation. Instead the bottom dropped out.
Removing the demands of my pressure-filled job turned out to be like releasing the keystone in an archway of bricks. Apparently the commitment I felt to the job I thought was killing me had been the glue keeping me intact. Two weeks into my between-jobs status, suddenly, every physical system in my body began to implode, so that over the four-month period from April to August 2006, I went from seemingly fit-for-duty to terminally ill. There had been more eating at me than I ever suspected.
When I was first diagnosed with hepatitis in 1958, there was no designation of type A, B, or C. If you were jaundiced and your liver enzymes were askew, it was simply “hepatitis.” If I had needed a transplant at that time, I would not have gotten one, nor likely survived. Not because I was so ill, but because the first human liver transplant was not performed until five years later, March 1, 1963. Bennie Solis, the recipient, was born with an underdeveloped liver. He died at age three from uncontrolled bleeding during the transplant operation, which was performed by Dr. Thomas Starzl in Denver, Colorado. The surgeon then took a four-year hiatus to do research and resumed liver transplants in 1967 with a greater degree of success. By then I was then twenty, blissfully unaware of the percolating disease the hepatitis had set in motion.
Over the ensuing decades, while progressive cirrhosis was surreptitiously gaining its advantage in my body, research continued and medicine made dramatic improvements. In 1958, however, the protocol for treating liver disease was pretty archaic: bed rest and a low-fat, high-protein diet were supposed to do the trick. I don’t remember how my parents implemented the low-fat regimen, but I will never forget their strategy for adding protein: malteds. That’s right, milk shakes with added malt.
Each morning before work Dad would drive down to the nearby Tuffy’s Candy Store, Soda Fountain, and Luncheonette, come home to wake me up, and hand me a twelve-ounce paper cup glistening with cold moisture, filled to the brim with thick chocolate fluid. “Down the hatch, Princess,” he’d grin.
Yech. I was a scrawny pre-teen, bloated and nauseated by my disease. Gulp after gulp of that frothy, slow-moving concoction was close to intolerable. When I complained of aches or pains, Mom would crush an aspirin into applesauce. To this day I can’t even think about malted milk or applesauce without having my stomach rise up to barricade my throat. But back then, I did what I was told, which included staying in bed, being tutored at home all of my seventh-grade year, following the recommended diet, and taking prescribed pills.
Throughout later life, when the medical community was looking for an explanation of one physical anomaly or another in my health, they always looked at the check mark I made in the box next to “hepatitis, liver disease, or jaundice” on the medical history intake form and asked what had been the cause of that earliest manifestation of my gastroenterological disease. There was none.
“Mom, how did I get this?”
“We don’t know, honey. Maybe it was from something not sterilized properly at the orthodontist. Maybe from a germ you picked up at a restaurant or public toilet. We don’t eat raw shellfish; dirt hidden in clams or oysters is supposed to be one of the most common causes.
“What difference does it make? We’ll do what the doctor tells us to do and you’ll get better, that’s all.”
My mom has always been a professional at denial and an expert at turning lemons into lemonade.
I got better, I got sick again. I was hospitalized for testing, which still failed to deliver a conclusive cause for the recurrent illness. The internist’s mandate for “full bed rest” meant though I would ultimately receive a diploma from Jerusalem Avenue Junior High School, I would rarely sit in the seats there. I completed seventh grade at home, eighth grade in school (with intermittent absences), and ninth grade at home again.
My teenage life was devoid of excitement during that time, but the 1950s were filled with breakthroughs for science and medicine. The double helical structure of DNA was discovered in 1953. The heart-lung bypass machine was first used on a human in 1953. Salk discovered the polio vaccine in 1955. And—most important to my life—a new oral steroid drug was introduced the same year by Schering and Upjohn, giving the doctors a big new gun to direct against the mysterious disease attacking my liver.
They called the drug “cortisone.” In our house, we referred to those little yellow tablets as “gold pills,” as much because of their cost as their color. One dollar a pill (not expensive now, but a huge price back then), on top of residual hospital expenses, was a burden on the family budget, and I knew it. I did my best to keep any physical or emotional distress I felt to myself, and there was plenty.
While cortisone ultimately gave me back my appetite and energy and returned my skin to a rosy pink from the color of weak tea, its side effects exacted a terrible toll on my body, my body image, and my self-esteem. To this day I think of it as the Darth Vader of pharmaceuticals.
First up: water retention. What was obvious in the mirror was my new moon face, a classic telltale of the drug’s impact. I tried to ignore it. However, neither my parents nor I even noticed my growing waistline until it was too late (because I was confined to bed).
In order to get dressed for a doctor’s appointment I had to don my six-foot, 180-pound father’s gardening pants, extended at the waist by four inches of rope, due to the ballooned size of my bloated belly. My mother and I joked to each other that if a pregnancy rumor began to circulate, we’d know it was her friend Bea who started it. When we crossed paths with Bea at the door to the doctor’s office, her eyebrows elevated quickly as her widened eyes scanned from my face to my waistline and back. Since I didn’t marry until age thirty-five, and never gave birth, from that time on I had to explain the stretch marks on my abdomen to doctors and lovers alike.
More difficult to defend against was another impact: the steroid-induced five o’clock shadow that emerged as an ugly halo around my already disgustingly round face. I adopted an upbeat pretense with family and funneled my sadness and embarrassment only onto the pages of my journal.
Body image? Self-esteem? While other kids my age made friends, formed cliques, and learned the ropes, I had to become my own best friend. I concocted as positive a self-image as I could. Relying on an unexpected font of inner strength, I convinced myself I was serious, literary, artistic, perhaps different, maybe eccentric, but certainly not damaged. I was the queen of my bedroom and, when I could get out of bed, fashioned elaborate bohemian outfits using pajamas, dance tights, my dad’s oversized shirts, and headbands. I told myself I looked and lived quite grand.
After the hepatitis was “cured” minor anomalies on liver function blood tests continued to be intermittently troubling throughout my teens, but not alarming, given my general good health. In my early twenties, my Dad’s employer, Grumman Aerospace, had a relationship with the Mayo Clinic and his medical benefits allowed us—me—to be seen by sophisticated liver specialists there. We hoped they could explain the persistent signals that something as yet undiagnosed might be lurking. The follow-up to this head-to-toe physical was an emancipation proclamation:
“On review of our examination, your history, and past laboratory tests, we were unable to find evidence pointing to chronic liver disease. Performance of an additional liver scan and a needle biopsy of the liver might give additional information, but we did not feel that it would be essential and do not urge it…No specific treatment is indicated at this time. We feel that your present health is good and that you can carry on normal physical activities.”
And so I did. From that time forward I ate and drank whatever I wanted, though I avoided alcohol, except for the occasional glass of wine, nursed for hours at parties and singles bars. Truth be told, if I needed to bolster my confidence or call up a quick attitude adjustment, marijuana, not alcohol, was my drug of choice, out of respect for my quirky liver.
In the mirror after workouts at the New York Athletic Club near my apartment on West 12th Street in Greenwich Village, I watched my twenty-something body transform like the Hulk. No aerobics with girls in tights for me. I achieved a green belt in Karate as my shoulders, arms, legs, and back grew firm and strong running and sparring with hunky lawyers and handsome architects. Those were the good old days.
Sensei’s equal emphasis on physical discipline, focused attention, and meditation set seeds of great strength in place. In just a few years, my body image and self-confidence were restored, and I developed a deep trust that my body had an inner intelligence originating from somewhere other than the conscious chatter of my ego mind. I would operate from this power base through my thirties, forties, and fifties. Always lean, more active than athletic, but committed to a routine that had as its foundation a daily, physical-meditative “me time.”
After work, before allowing myself a nutritious dinner, I would pop a random LP onto the stereo and be my own sensei, challenging my body parts for about an hour in a combination of stretching, dance, yoga, and aerobics that was Pilates before the name was coined. During this strengthening and rejuvenating interlude, my mind would seek personally relevant messages from the musical soundtrack, and I’d dream up happy visions of what I wanted to manifest next in my day-to-day life.
There were glitches along the way toward my 2006 health crisis, a hysterectomy here, an appendectomy there, but for the most part, from those miserable teenage years on I was simply collecting and practicing lessons of resilience and transformation over and over and over again.
I am not sure why I was worthy of their help, but I am certain that as the wheel of time rolled on there were unseen forces—I’ll call them “angel guides”—that were giving me everything I would need to be set up for success when the shit hit the fan. By the time it did, we were a well-prepared team.
After years of comprehensive interviews, Elizabeth Kubler-Ross outlined these stages of the process of death and dying:
Denial – Anger – Bargaining – Depression – Acceptance
My experience is that these are not distinct stages. They are just as much a swirling, overlapping spiral of action and emotions as every other part of life.
In 2006 I was dying. I wasn’t “sick in bed with a fever” or “comatose in a hospital, fed through a tube” dying. I was home watching my tits and ass disappear, losing my hair, unable to walk up the stairs or type a letter without error dying, over a period of eight months.
Let me assure you, whether dying after a short illness, a sudden accident, or following a long, drawn-out bout, there’s always sufficient time to go from denial to acceptance. Everyone approaching death moves through these phases in their own unique way, at their own pace, but apparently we all cover the territory. For five of the eight most severe months of my battle against cirrhosis, Mike and I were co-dependents in the first stage of dying, denial, which I realize had taken root as early as December 2005.
Journal December 2005
Spirit is with me, acts through me, and is my strength. Fear, anxiety and depression are just misinterpretations of cosmic harmony. All is as it needs to be. My willing participation in this improvisation called “my life” is all that is required. Curious, courageous anticipation is my role.
I’d gone shopping for an outfit to wear to the holiday party hosted by Sherwood Lumber, Mike’s employer. I selected a silk after-hours pantsuit and commented proudly to Mike, but with a bit of amazement, “I’ve never been a size six before.”
I disregarded the weight difference because denial is a deceptive trickster. I concluded that Stein Mart sizes their clothes to flatter the egos of ample-bodied women of a certain age. It was easy to ignore warning signs. My internists through the years always used the tagline, “Someday you may need a liver transplant,” but no one had ever said straight out, “Now is the time to worry; now is the time to get listed.”
Before transplantation became a viable option for treating patients with severe liver disease, the medical alternative was to manage complications. An assessment tool was developed at the Mayo Clinic for predicting the potential longevity of patients undergoing transjugular intrahepatic portosystemic shunt or “TIPS,” a procedure commonly used to control portal hypertension, which is a serious side effect of cirrhosis. As the use of transplantation expanded, a new formula was needed that would be more accurate for predicting the relative risk of death faced by patients on transplant waiting lists, thus assuring fairness in organ distribution. The Model for End-Stage Liver Disease (MELD) system was implemented in 2002 as a national standard for prioritizing adult patients waiting for a liver transplant (another score, PELD, is used for pediatric patients).
The MELD system assigns points based on the probability of death within three months if the patient does not receive a transplant. It’s calculated using only laboratory data in order to be as objective as possible. The three lab values in the formula are a patient’s creatinine (a measure of kidney function), bilirubin (liver health), and international normalized ratio, or INR (blood-clotting time). A score can range from 6 (the patient is less in danger of death within three months) to 40 (gravely in danger).
Not one of my doctors ever mentioned MELD or educated me on how my lab scores actually compared with the MELD criteria. In fact, right up to the year before my health crashed, every gastroenterologist that tracked my health uttered that same general phrase, “Based on your lab tests no transplant center will even evaluate you for the list of potential recipients.”
This didn’t mean I was healthy or that my chronic liver impairment had stabilized. In fact it meant my disease was unfolding in such a way that my labs might never reach the status necessary to put me on a waiting list, much less move me to the top. But at every turn, Michael and I were happy to misinterpret messages from my doctors as nonthreatening and ignore the increasingly dangerous signals from my body. Since I seemed so healthy on the surface, we turned our faces to the sun even when it should have been easy to see storm warnings going up.
I left my position at the Asheville Area Chamber of Commerce in April 2006 to pursue new, more satisfying work, thinking that eliminating the work stress would give my stamina and mood a boost. I had to wear a stretchy black sheath dress at my going away party to cover a bloated belly. Although the scale said I hadn’t gained an ounce since December, I didn’t think this indicated anything serious.
One month later the uncomfortable bloating seemed in no hurry to abate, so I scheduled a non-routine visit with my gastroenterologist. The doctor sat impassively in the corner of his examination room at a safe distance from any emotional reaction I might have as he recounted the history of mounting changes in my health over the years as well as treatment options already exhausted to control the effects of liver disease.
“What you are experiencing now is a complication of liver disease called ascites.” His delivery was matter of fact. “It’s caused by the buildup of fluids within the abdominal and/or chest cavity, fluids high in protein that would normally be processed by the circulatory system through the liver, into the intestines, and out through the kidneys. The damage to your liver probably began with the hepatitis you had as a teenager and has been progressing ever since. I’m sure you recall the surgeon who removed your appendix in 1987 telling you he’d observed signs of cirrhosis even then.”
So far he’s told me nothing I don’t already know. I remembered all too well the call from my gastroenterologist almost twenty years before.
“Mrs. Willen, how are you feeling after the appendectomy?”
“I’m OK. It’s a slow process of getting my strength back, but I had practice six months ago when I was recuperating from the hysterectomy last August,” I joked.
“Yes, well…the surgeon has asked me to share with you some of the findings he recorded while performing your most recent operation, so I’d like you to stay on the line for my receptionist and make an appointment to come in.”
Findings? Appointment? Calling himself? I don’t like the way this sounds.
“What findings?” I asked.
After a painful pause he responded in a controlled professional voice, “He tells me he’s seen evidence that you have a chronic progressive disease of the liver—it’s not cancer—but it is a progressive disease for which we have no known cure at this time.”
Holy crap, what is he saying? I could feel my stomach tighten and my hands go cold.
“I want to emphasize, it’s not cancer and you’re in no immediate danger, but I think we should talk. Why don’t you and your husband make an appointment to come in as soon as possible and we’ll discuss this more fully?”
You and your husband…as soon as possible…chronic, progressive…no known cure.
“Of course,” I said. We ended the call, and I made an appointment immediately.
Michael and I braved a New York snowstorm the next day to hear more. And thus we learned in 1987 that the childhood hepatitis, while conquered, had set in motion ongoing damage to my liver—cirrhosis. For a few days I tied myself in knots thinking this ever-present threat would impinge on my living a full life. Then a Socratic dialogue with my wise friend Bob helped me relax.
“Sharon, I understand you’re shook up emotionally, but how are you feeling physically today?”
“I’m fine, just still recuperating from the operation.”
“Are you any less healthy today than you were before you learned of the doctors’ observations?”
“No, not really.”
“Right. The only difference between you today and three days ago is now you’re more informed about your health. Remember, I have asthma that has weakened my lungs. I live with that awareness. We all carry some kind of time bomb, it’s just that some of us know about ours and others are still in the dark. Now you know about yours and can act accordingly. True?”
“True.” I took a deep breath and chose to leave cirrhosis out of my consciousness until, if ever, it forced its way in.
My Asheville gastroenterologist continued his 2006 review of my history of liver disease and its impact on my body. “Although no one has ever been able to say for sure where that original hepatitis came from,” he went on, “it definitely left your spleen enlarged, and that accounts for the low white blood cells and abnormal platelet count, which make you prone to bruising.
“We’re also staying ahead of another circulatory problem, portal hypertension. The portal vein is the large vein through which oxygen-depleted blood from the stomach, the intestines, spleen, gallbladder, and pancreas flows to the liver. Since your liver tissue has been cirrhotic for many years, this blood flow is more and more blocked. We’ve been keeping the hypertension under control with a small daily dose of blood pressure medicine, hoping to avoid another bleed like the one you had before moving here to Asheville, from varicosities in your esophagus.”
I remembered that unwelcome intrusion of my liver disease, also, all too well.
It was 1999 and I was working for a Long Island school district, developing a K-12 school-to-career curriculum and school-business partnership to help students answer the eternal question, “Why do we have to learn all this?” I had seen what appeared to be dark blood when using the ladies’ room toilet one morning, but felt otherwise fine and decided to wait until the end of the workday to call my doctor. At 3 p.m., when his receptionist related my symptoms to the doctor, I was told to head straight for the local hospital. The doctor would meet me there.
The presence of dark, undigested blood indicated internal bleeding from an unknown source, so I was admitted for overnight observation. Because of the growing pressure on my portal vein due to cirrhosis in the liver, varicose veins had developed in my esophagus. One or more had now leaked. My bleed was a single, minor episode. Some patients with similar problems are not so lucky, they suffer potentially fatal hemorrhaging. In my case, a few weakened, bulging veins in my throat were treated with two rounds of “banding” to tie them off. Nonthreatening, mildly invasive outpatient procedures under minimal sedation, plus follow-up endoscopies, and that was that. No reoccurrences, which allowed me to follow my tried-and-true pattern. I let bygones be bygones.
If my Asheville gastroenterologist had new news to offer, especially something that would relieve my current bloating, I wished he would deliver. I was longing to end the trip down memory lane his narrative was provoking.
“All these symptoms relating to your gastrointestinal system are caused by the progressive nature of cirrhosis,” he summarized redundantly. “Liver damage is irreversible. It will continue, but no one can give you a timetable as to when it will turn critical. In general, you’ve been very healthy, almost symptom free, for a good long time, but this may be a turning point.”
After all the twists and turns and jargon, the unemotional delivery of this litany of medical history finally ended. The doctor had pulled no punches, remained scientific and rather impassive, but never conveyed any doom and gloom. He mentioned a turning point, but diluted the impact of that phrase by suggesting a more powerful second diuretic, Furosemide, be added to the mild dose of Spironolactone I was already taking to relieve the fluid buildup. Furthermore, he closed with the familiar refrain that always provided a loophole for my fears. “You could try to make an appointment with a transplant center, but because all your liver tests and other labs are still close to normal, you probably wouldn’t be considered a candidate for transplant at this time.”
I refused to hear alarm bells because he used the word “normal” in relation to my liver function, offered yet another pharmaceutical trick to offset my current symptoms, and made no dire predictions about needing to move toward more serious measures. In spite of my physical malaise I was still participating in community life, making note of upsetting physical changes in my journal, but sticking to my rose-colored glasses.
Journal Entry – Spring 2006
Since I “retired” I’ve taken two trips to New York, worked at my computer, provided volunteer services to groups I used to get a salary to assist–trying to keep myself in the spotlight so I can ultimately get another job with benefits. I set up a home office, hosted my book club for dinner, made sure all the flower boxes were filled for summer–same old, same old–doing, doing for others, not relaxing for me (even though I have felt like shit). Not eating but one or two teensy meals a day (feels too distended after I eat). I am not sure if my weight loss is from discharging fluid (doesn’t feel like it) or losing body mass. I could see my ribs in the mirror this morning. My brother’s baby ring that I wear all the time falls off my pinkie).
There is a stillness within me, but I am not still. I am seeking help from allopathic, holistic, and nutritional healers. I read and reread spiritual and motivational books. I ramp up my exercise (from zero to one?) and indulge myself with on-demand asleep/alert patterns similar to those of an infant. I have a day of relative relief from the discomfort of water retention and I am hopeful. I have a day when the scale says another half pound gone, but the tape measure shows no reduction in my belly size and I have to cut through the elastic waistband of my comfiest white pants.
Is the cure for this within my control? Or is that vestigial longing for control the root of the problem?
What is best? Surrender? Accept? Fight?
© Sharon Lamhut Willen, 2013