Sunday struggles searching for unobtainable perfection

Today was supposed to be different. I planned to lift weights at the gym and then work on my novel at the coffee shop. I have not met either goal.

Instead, I procrastinated. I can’t even remember what I did this morning. Then I went grocery shopping, hoping to prepare healthy food for my girlfriend and I for most of the week.

Alas, my afternoon attempt at frying tofu cubes to a crisp for my vegetarian variation on kung pao chicken failed. The oil was not hot enough. What heat it did have dissipated quickly as soon as I dropped the half-centimeter cubes into the oil.

The last time I cooked this dish was in a commercial kitchen. I now realize frying tofu cubes at home is nowhere near as simple and perhaps even impossible without the right equipment.

I had to throw out the soggy mess.

Rationally, I know it’s just one meal, and I can always make the vegetables into something else. But I still hear the invisible parent within me shouting, wondering why I can’t make a dish I’ve made half a dozen times before, why I can’t motivate myself to don a pair of shorts and head to the gym, why I can’t drive to the coffee shop to escape the temptations of on-demand reruns, guitars, and Madden 21.

My girlfriend says I am too hard on myself. A previous psychologist would concur. I can hear him now, “Respect yourself.”

But my current psychologist and I made a pact. He and I agreed on four goals to work on over the last month, and I’ve barely met one.

I’m trying to be kind. I’m trying to remind myself I edited my novel for an hour yesterday. I opened my laptop qua 21st-century typewriter today. I’m writing now.

But impossible standards and unrealistic expectations are my curse. I could blame the Protestant work ethic of my parents. I could blame the all-or-nothing thinking that accompanies ADHD. Either way, they have become part of me, stations on my lifelong search for unobtainable perfection.

I smell the pork rubbed with brown sugar and freshly cracked Chinese five spices roasting in the oven. Perhaps we’ll have dinner after all.

Plus, there’s still time left to go to gym.

Silent spring and the summer without an end

I roll my eyes at the weather app on my phone. The mercury rises above 110 degrees for the fiftieth day this year, obliterating the previous record and taunting Arizonans like some rival home-run king smacking grand slams at will. I press my palm to my face to hide my frustration, only to feel a sweaty film forming across my brow.

Below my third floor perch, an apparition walks its equally ghostly dog. With its face concealed by a mesquite tree, the creature could be man or woman, old or young. I listen for a bark, a howl, even the sounds of children playing, but all I hear is the gentle whir of the ceiling fan and the jet-like sweeps of traffic on Southern Avenue.

Anxious for the weekend, I close the lid on my work computer and migrate downstairs to escape my home office. What used to be my earthly paradise, my escape from it all, has become a prison.

I plop into the leather couch. Our cat, Jane, comes up to nudge me. She might be the only creature in this world glad that I have been home almost 24 hours a day since March. I begin my ritual scroll through shows on Amazon Prime and Hulu. Never before have humans had so much instant access to entertainment, and yet, never before have we been so bored by it all.

The summer of hobbies and low-interest financing

In March, I told a friend Amazon, GrubHub, and Netflix would be our saviors during this pandemic. One glance at my credit card statements proves my prediction.

I smile at my new Fender Stratocaster. The cobra blue electric guitar cost more than anything I own, save for my house and my car, but throughout this ordeal, it has been my saving grace, my one pride and joy. Plus, nothing will motivate one to practice like spending two grand on an instrument.

Truthfully, though every day is a never-ending nightmare for someone as extroverted as myself, COVID-19 has been relatively kind to me. Despite being in the high risk group, I have not been sick. Traffic to and from my frequent medical appointments has been non-existent. I haven’t been laid off, and the few weeks in April my team spent on part-time were a welcome relief from the 50-hour work weeks.

I shave three-hundred dollars from our mortgage payment by taking advantage of low-interest rates to refinance our condo. And I happily obliged car dealers desperate for customers by trading in my expiring lease for an electric-blue Hyundai Elantra Sport.

Perhaps one day I will even look back and see this year as a blessing. But right now, despite those positives, as it has for most of us, 2020 has stretched the limits of my sanity.

Endless summer stretches the limits of my sanity

What started as a spring so silent that Rachel Carson’s classic now reads like the musings of a whiny birdwatcher has turned into an Orwellian summer without an end. Words like social, connotating closeness, have been combined with veritable antonyms like distance, implying far away. Activists obsessed with skin color are being called “anti-racists.”

Masks that may or may not work, depending on which study you cite, are required to go literally anywhere. Police are being asked to shame or imprison those who refuse to comply. Schools all over the country have been canceled, delayed, or gone virtual.

Like an emperor at gladiatorial games, Arizona’s executive branch holds the fate of local restaurants, bars, and gyms in its hands. Thumbs up, you may re-open. Thumbs down, brace yourself for the sun-heated steel of the governor’s sword on your neck.

Our other cat, Bert, curls reposed at my feet. Like most animals, he lives for routine: breakfast the minute one of us rises from our bed, nap most of the afternoon, dinner shortly after he wakes. Lather, rinse, repeat. Same shit, different day. Groundhog Day may be our nightmare, but it is his ideal.

Like a schoolchild awaiting news from Punxsutawney Phil, I cling to the weather app and local news websites. Did Arizona’s health czarina see her shadow today? Will she let my gym reopen? Will we have six more weeks of this infernal summer?

Hot and sour soup and the small things in life

In the days after I was diagnosed with dermatomyositis, I had no idea what would happen to me. I knew little about autoimmune diseases, and this one was about as rare as they come.

To ease my trepidation, I ordered hot and sour soup from our local Chinese dive. I shoveled and savored spoonful after spoonful—as though the final slurp would be my last. My worries about life’s daily helping of bullshit melted away. My girlfriend’s concerns about her bridesmaid dress seemed trivial.

I recalled the articles, statistics, and prognoses I read online and pondered what the rest of my life would look like. Would the few available treatments work? Would I be on prednisone for a decade before dying of liver failure or Cushing’s disease? Would I make it another five years?

Fast forward eighteen months: My concerns, though understandable, could hardly be justified. Not one of my eight doctors was worried about premature death. Most said the condition could be managed. And it has been—without prednisone.

Before dermatomyositis, I often let my anxiety determine my future: I spent my days waiting for the next paycheck, for the next vacation, for life’s next major milestone. I spent my nights tossing and turning over what was to come. Like a fortune teller, I feigned awareness of my future. Like a prophet, I predicted imminent doomsdays if my plans fail to come to fruition.

Having dermatomyositis has taught me I cannot hang my happiness on some idealized future. Come what may, I have to accept myself as I am and my life as it may be.

As that bowl of hot and sour soup taught me, life is full of small victories and everyday joys. One would think someone like me, who indulges in fine wines, whiskeys, and world cuisine, would celebrate those happy moments. But the small things in life are easy to forget. And sometimes, those small things are the best part.

Halloween week and the red-blood-cell scare

Horror films with homicidal clowns and chainsaw-wielding serial killers define Halloween for most. But for me, with my health issues, little is more frightening than an abnormal medical test: This week, red blood cells showed up in my urine.

What exactly this means is any doctor’s educated guess. The urologist ordered ultrasounds of my kidneys and testicles, but since I have to wait a week for them, I’m obviously not dying. He also wants to shove a catheter up my urethra with a camera to check my bladder. Fuck that.

Best case scenario, red blood cells in my urine are just that. Maybe I worked out too hard Monday night before the test. Maybe my prostatitis from three years ago flared up.

Worst case scenario, I have kidney disease or cancer. I’m trying not to focus on this because I’ve had my blood tested so many times the last year, doctors would have likely seen something earlier.

Waiting, yet again

Nonetheless, waiting for test results, yet again, sucks. My heart pounds. My mind wanders. My own House episode continues.

I wonder what a couple tests mean for the rest of my life. Is my autoimmune condition destroying my kidneys? Are my medications to treat it affecting my kidney or bladder function? Is this just a fleeting result with little consequence after this week ends? Is my anxiety for naught?

Yet again, I wrestle with existence, with the purpose of life amid a universe that so often seems to bring only suffering. Sure, I’m not alone. I have coworkers with their own autoimmune conditions. I have Facebook buddies with diseases rarer than my own. I even have a good friend struggling with a much more daunting medical issue and awaiting his own prognosis this week. Clearly, the universe does not discriminate.

But are we, as humans, really meant only to survive? What of happiness? Can we really ever flourish when each day brings a new anxiety of its own, when life becomes a series of test results and visits to specialist after specialist, each one delivering another worry, another reason to fret?

Ancient wisdom for the diagnostic life

Western religions teach us not to worry. Christ tends to his flock. Yahweh watches his people. Allah blesses those who believe. Good triumphs over evil. God provides. But what comfort is heaven when you’re trapped in diagnostic purgatory, hoping you don’t end up in oncological hell?

The Stoics teach us to seize the day as it comes, to immerse ourselves in the moment.

“True happiness,” writes Seneca, “is to enjoy the present without anxious dependence upon the future, not to amuse ourselves with either hopes or fears but to rest satisfied, for he that is wants nothing.”

Such advice is all fine and well for the healthy, even for the unhappy or the unemployed. But those ancient words ring hollow when “he that is” cannot be.

Depression: Don’t Be Afraid to Talk About It

An estimated 16.1 million Americans struggle with depression, according to the Anxiety and Depression Association of America. Few of those want to admit it. Fewer still want to talk about it.

Trying to explain the anguish and hopelessness inside you to those who have never battled mental illness is like a woman trying to explain the pain of childbirth to a man.

Sometimes people sense those overwhelming feelings of sadness, especially if you seem gloomy or unusually slow or uninterested in much of anything. But for many, such obvious signs are buried behind much more subtle symptoms. Some overeat. Some don’t eat at all. Many lose sleep. Others are always tired and sleep too much. More recently, psychologists have begun recognizing rage, anger, and irritability as symptoms of depression–especially in men, but also in women.

Trying to explain the anguish and hopelessness inside you to those who have never battled mental illness is like a woman trying to explain the pain of childbirth to a man.

Worse still, many turn to alcohol, drugs, work, and other addictions to bury their depression, anxiety, ADHD, or other mental disorders. When addictions cease to smother the pain, suicide becomes the last resort to make it all go away.

Depression and the American rock and metal scene

Among the most famous is Nirvana legend Kurt Cobain. A chronic drug and alcohol user since age 13, in 1986, he started using heroine. By 1990, recreation became addiction. Unlike softer drugs, repeated heroin use changes the brain’s structure and physiology, creating imbalances that are not easily reversed. Cobain’s brain became dependent on the drug, then developed a tolerance that made it almost impossible to ever deliver enough of the drug into his body to stay happy and alert. Eventually, overcome with mental, physical, and chemical depression, he shot himself.

Chris Cornell’s voice on Temple of the Dog’s “Hunger Strike” shows the pain he experienced most of his career that eventually killed him. The song is a favorite of mine and represents the best of grunge and has helped me get through some rough times.

Cobain is hardly alone among rockers and metalheads. Soundgarden and Audioslave frontman Chris Cornell struggled with depression most of his life until hanging himself in a Detroit hotel room at age 52.

Linkin Park’s Chester Bennington hung himself only months after Cornell, on what would have been Cornell’s 53rd birthday. Stone Temple Pilot’s Scott Weiland battled substance abuse for much of his career and a year and a half before Cornell died after overdosing on cocaine, ethanol, and methylenedioxyamphetamine (MDA).

At the core of these singers’ struggles, as a psychologist once taught me, are feelings of hopelessness. Little brings you happiness. Nothing seems to change. You feel trapped, perhaps useless, unwanted, unloved–even if you are adored by millions.

What causes us to feel hopeless?

Exactly what causes those feelings depends on the individual, but for many, myself included, we feel as though we are running from our pasts, from memories we long ago repressed, from demons we thought we exorcised on a therapist’s couch.

Some, like Cobain, have a family history of depression, suicide, and substance abuse, likely indicating an underlying physiological problem with the brain. For others, like Weiland, are simply unable to cope with terrible traumas and unprocessed memories of rape or abuse. Others still suffer from both.

Many have no idea most depressed people are in so much pain– even singers, musicians, writers, and artists whose lyrics, music, themes, and styles can be dramatic, morose, and hint at, if not signal mental anguish. Often, nobody knows until it’s too late. Our culture needs to change that.

Finding inspiration in those who have struggled

The past several months, I was inspired, though not surprised, to find these themes not just pop up, but humbly honored at rock and metal concerts. Dexter Holland of Offspring paid tribute to friends he lost. From Ashes to New dedicated multiple songs to Chester Bennington, citing him as a major influence and calling him a friend. Breaking Benjamin similarly called out struggles with suicide and depression. Five Finger Death Punch discussed substance abuse. Their lead vocalist, Ivan Moody, shared his own struggles and recent decision to stay sober.

Disturbed truly went out of their way, airing the numbers for mental health hotlines as they paid tribute to all that rock and metal have lost over the past few years to suicide or substance abuse as they played their ballad “A Reason to Fight.” While some have been critical of the track, calling it too much of a departure from Disturbed’s iconic twenty-first-century metal sound, I love the song. Hearing it live with candles and a supportive audience that clearly had many battling their own beasts inside.

Depression: You should talk about it. With the help of friends, family, therapy, medications, support groups, and hotlines, you can win the battle. I am proof of that.

In Disturbed’s words:

Don't let it take your soul, 
Look at me, take control
We're going to fight this war
This is nothing worth dying for

Are you ready to begin
This is a battle that we are gonna win


The best people, like the best wines overcome chaos

Wine is one of the most peculiar, particular substances ever invented by humans. Try as winemakers do to control and perfect it, so much of its production is beyond their control: Grapes are as finicky as plants come. Weather is unpredictable. Soil and geography exist independently of humans and where we choose to work and live.

And yet, by growing simple grapes in some of the most inhospitable soils in some of the most unforgiving places on Earth, we create the most complex, most beautiful beverages.

Priorat wine is made possible only because the grapes stress and struggle.
Priorat is made from the otherwise unimpressive garnacha grapes. But when grown in windy, semi-arid conditions in shallow, nutrient-poor soils in the Catalonian foothills, garnacha must develop deep roots to find water and nutrients. The result is invigorating wines with rich cocoa, raspberry, and tobacco aromas that rival the best in the world.

Similarly, as humans, we stress. We toil. We often work against ourselves and against each other. We must resolve issues given to us by families we never chose. We must yield to authority we often do not agree with or choose. We must invent tools and means to overcome nature. We often lose.

Like wine, the best humanity has to offer is often born of and must learn to overcome chaos.

Yet, like wine, sometimes the greatest among us survive the worst conditions. These men and woman beat the odds so often stacked against them. They write the works of literature that last the ages. They compose the symphonies and sonatas humankind will listen to centuries in the future. They invent the most indispensable tools. They change how we live. They enrich our lives. Like the world’s finest wines, we revere them. We remember them. The best humanity has to create and to offer is often born of chaos.

Itching and burning and the rashes from hell

The severe itching has returned. My arms are inflamed and covered in rashes that resemble first degree burns just before they turn into blistering, second degree ones, that vivid ruby rose color that looks like I feel asleep in the Arizona sun. I feel like a shell of the creature who was once called a man.

Today marks week five since I started taking hydroxychloroquine. It is not yet working. I try to stay optimistic, to remind myself many patients only notice effects after six weeks, most notice nothing until months later. But until then, am I supposed to live in hell?

Meanwhile, my primary rheumatologist has been tapering me off steroids, slowly reducing the dosage to keep my immune system from overreacting. Taking corticosteroids for more than a few months could cause damage to my immune and endocrine systems.

Must I choose between damaging my body years from now and living in this itching, burning hell? Is the price of a quality life today a shorter tomorrow?

Some evenings, I curse my doctors’ treatment plan. Other evenings I curse myself. Others still, I curse whatever natural or supernatural entity decided I must suffer yet again, as though Scheuermann’s disease wasn’t enough, as though ADHD and depression haven’t been enough, as though life isn’t already hard enough. What kind of being would cripple his creation with a rash that makes you wish you were dead?

In reply to some twisted medical corollary to French mathematician and philosopher Blaise Pascal’s famous wager, I told my girlfriend I would gladly trade a long life in hell for a short one in paradise.

Must I make this choice?

To quote Djimon Hounsou’s character in Gladiator, Juba, “Not yet, not yet.”

One more week. Can I make it? Yes, but will six weeks be enough?

Finding beauty and inspiration in feeling overwhelmed

Today was tough. I felt overwhelmed. I’m trying to manage an autoimmune disease and four proposals at once. I itched more than usual this week. My hair has started to quickly thin. My rashes flared up. To top it off, dumbass drivers clogged Phoenix roads with accidents, turning a 20-minute drive into a 45-minute commute.

Caspar David Friedrich - Wanderer Above the Sea of Fog
Caspar David Friedrich’s “Wanderer Above the Sea of Fog” depicts man above the choppy seas, as though to say, “I can and will conquer whatever chaos may come.”

For the first time since being diagnosed, I wanted to give up. I didn’t want my life to be going from doctor to doctor, lab to lab, spending every penny I have on increasing insurance copays only for doctors to basically say the same thing week after week until the medications show results.

I’m collecting specialists like preteens collect Pokemon. At first, I thought this could be fun. Like a grueling sports practice, fun has turned into work.

In the past three weeks, I saw a dermatologist, two rheumatologists, and a psychologist. A radiologist reviewed my CT scan. Pathologists analyzed my blood. Thursday, I see my psychiatrist for my ADHD medications. I made an appointment with an ophthalmologist to monitor my retinas because of known side effects from hydroxychloroquine (Plaquenil). Next week, I have an electromyograph (EMG) with a neurologist at Mayo Clinic.

I’m collecting medical specialists like preteens collect Pokemon. At first, I thought this could be fun. Like a grueling sports practice, fun has turned into work.

Turning despair into inspiration

I want more from life. I want friends and strangers to see me not as some guy who battles an incurable illness, but as me—a writer, a thinker, a proposal specialist, an amateur saucier, a wine connoisseur.

I try not to focus on the difficult parts of my life. I try to borrow strength from overcoming my past.

This evening, I channeled my negativity and hammered out almost a thousand words in my new novel, even if they were about my character’s obsessions with Russian vodka and marijuana politics, about him being stood up by a strip-club cocktail waitress.

Writers and artists teach us how to make things beautiful, attractive, and desirable even when they are not.

Writing is what I do. For over fifteen years, it’s what I’ve done when the future seems grim, especially when I feel down. Besides, inspiration has to come from somewhere.

As the philosopher Frederich Nietzsche comments in The Gay Science, art and artists, including writing and writers, teach us “how to make things beautiful, attractive, and desirable for ourselves [even] when they are not.”

The spirituality and sensitivity of broken skin

I look at the rashes covering my skin. I wonder if people notice, if the woman looking at me at the gym thinks I’m cute or just some monster.

Is God punishing me? Mocking me? Testing my faith? Has the devil come to collect the bill for the body I sold to keep my soul? Has Anubis weighed my heart against a feather and sentenced me to a watery, crocodilian hell?

Am I an evolutionary accident, some creature that should never have survived infancy, some being that should not be? Of the 20,000 genes in my body, should a single mutation change render me less than human?

Most people ask if I’m sunburned. I try to be polite, but how do I explain autoimmunity to the grandmother at the dermatology clinic, to the child at the store?

Before my first visit to the dermatologist two months ago, the rashes itched and burned so horribly I could not sleep—even with two antihistamines and melatonin. I could not sit in my own home with the fan on because the moving air scratched and irritated my skin. I hid under blankets to relieve the pain.

I’ve never been more thankful for prednisone.

The Hebrew Bible refers to skin diseases as tsara’at—meaning to be thrown down or humiliated. Those afflicted with these conditions were considered ritually impure; presumably, their disease was God punishing them for behaving immoral.

The Bible is not alone in its discussions of skin diseases nor are the Jews unique in their treatment of persons with them. As Philip D Shenefelt and Debrah A Shenefelt point out, across cultures, humans feel a spiritual connection with our largest organ, perhaps because it is the part of us most visible, and “persons with visible skin disorders have often been stigmatized or even treated as outcasts.”

Though we understand more than ever about skin diseases, though modern persons are not ostracized or forced to shout “unclean” as they walk down the street, I often still feel judged—even if the only one judging is the person looking back at me in the mirror.

Since being treated with corticosteroids, my symptoms have improved. My face is mostly clear, save for my Rudolph nose. The itching and burning is a fraction of what it was. I sleep better. I walk taller.

And hopefully, in time, my doctors and I will find a treatment to make my skin look new. In time, I will again feel human.

When knowing something is worse than knowing nothing

Antinuclear antibodies. Autoimmune. I thought they were terms from contrived Hollywood procedurals to make the characters sound smart, words worth dismissing alongside the rest of the medical-school jargon I overhear in hospitals or read in news articles posted on the wall at the internist’s office.

Now, in some poststructural mockery of my own life, of my own beliefs, those words play hegemon over my mind like the Bratva over Moscow. Language has become reality. Who I am, who I was is lost.

Antinuclear antibodies. Autoimmune. I thought they were terms from contrived Hollywood procedurals to make the characters sound smart. Now, those words have become my reality.

For almost a decade, I have bowed to no god in heaven or earth, sworn allegiance to no flag but my own, obeyed no master but myself. I now supplicate to some being I cannot hear, I cannot see, wondering what a handful of numbers mean.

My last blood tests showed my antinuclear antibodies exceed thirty times the normal range. An indirect fluorescent antibody test returned a speckled pattern. My rheumatoid factor—another antibody test—is elevated.

My breaths are shallow. My chest is tight. My arms, legs, and chest are covered in rashes. Sunlight is either the cure or its burning me from the outside in, and I, like the biblical Job, cry “Violence!” to a god I do not believe in; I hear no answer—not from Jehovah, not from my doctors.

My internist suspects lupus or some other mixed connective tissue disease. My dermatologist believes I have dermatomyositis. Both say I need more tests.

Antibodies are proteins produced by the body in response to foreign substances—for example, viruses, bacteria, toxins. Antinuclear antibodies (ANAs) are produced when the body fails to adequately distinguish between what cells do and do not belong. Though healthy bodies can and do produce ANAs, more often, high concentrations of ANAs indicate an infection, most often, an autoimmune disorder.

I now wait with just enough information to make me anxious, paranoid, afraid, hopeless, depressed, but not enough knowledge to move through Kübler-Ross’s remaining stages of grief.

I spend too much time online reading about these diseases, wondering why I have them and from where they come. I am a sinner in the hands of this enigmatic twenty-first-century god, this omniscient being we call the internet, this entity with all the answers. I search website after website, looking at prognoses, forecasting my future. I see no answers.

My chest x-rays are negative for any lung disease. My electrocardiogram (ECG/EKG, depending on how much Greek you know) was completely normal. I try to focus on these positives, but I wonder if I am just bargaining. Grief stage two.

I speak with my girlfriend, with my parents, with close friends, with my therapist. I let some of my coworkers in on my news—after all, they need to know why speaking has become tough, why some days are more exhausting than others, why I keep leaving for different doctors. All are encouraging. They assure me modern medicine always has a cure (or at least a treatment).

But does it?

I try to remain positive. But at what point does optimism become denial?