Tag: existentialism

Hot and sour soup and the small things in life

Posted on Posted in anxiety, autoimmunity, dermatomyositis, dermatomyositis, existentialism, mental illnessTagged , , , , ,

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

Posted on Posted in autoimmunity, existentialismTagged , , , , , , , , , , ,

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.

The best people, like the best wines overcome chaos

Posted on Posted in culture, existentialism, wineTagged , , , , ,

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.

“Gone Away” and life’s transience and fragility

Posted on Posted in culture, musicTagged , , , , ,

This weekend, I had the privilege of watching Five Finger Death Punch cover The Offspring’s “Gone Away” here in Phoenix. Three months ago, I watched Dexter Holland play the piano version of his own song from almost the same spot in the same venue.

Both singers paid tribute to friends they lost years ago. Before his version, Five Finger frontman Ivan Moody discussed his struggle with alcoholism and recent sobriety. He then asked the audience if they knew how much time they had left in life.

I turned to my friend and told him I did not want to think about that. The honest answer—for most of us, but especially me—is I don’t know.

As a writer and guitarist struggling with dermatomyositis, songs like “Gone Away” almost make me cry these days. They remind me, as Moody reminded us, of life’s transience and fragility.

My Rudolph Nose

Posted on Posted in autoimmunity, dermatomyositis, dermatomyositis, symptomsTagged , , , , ,

My nose glows red with a dermatomyositis rash like the mythical reindeer of childhood Christmases past. The moral of that story—at least the CBS claymation version—is that what seems a flaw, what makes one different, what subjects one to ridicule, may be a blessing in disguise. But humans are not reindeer. No bearded, red-suited legend is going to ask me to guide his sleigh come some unforeseen foggy Christmas Eve.

We had a web conference with video at work today. It was all too obvious to me with my nose glowing on the screen, I am not who I was. I don’t feel attractive. I don’t feel positive. I don’t want my girlfriend to touch me. I barely feel human some days.

Doctors tell me in time my hydroxychloroquine will help. It has helped a little, but not enough, not fast enough.

Still, I wait for true relief, for what after six months seems like waiting for a miracle. Still, I taper down my steroids. Still, my nose gets redder. The skin on my jaw itches so much it wakes me in the night.

Am I supposed to find meaning in a red nose? Inspiration? Am I supposed to thank God or curse nature? Am I supposed to search for some metaphorical St. Nick for some purpose in this suffering?

As the philosopher Walter Kaufmann, paraphrasing the philosopher Frederich Nietzsche, observes, nature is too well designed to lack purpose but too ill designed to demonstrate intelligence.

Yet, as intelligent, conscious beings, we think; we feel. Aware of our own fragility in the face of near constant chaos, we agonize; we suffer. Aware of our own imperfections, we criticize; we despair. We seek symmetry, predictability, stability, security, order.

So what do we do with our imperfections? Can we fix them? Should we fix them? Or do we embrace them, stare nature in the face, and tell ourselves we are more than our faults?

I may not have a red nose forever. But right now, looking at myself in a photo or a mirror hurts. I tell myself these rashes are not who I am. But right now, I see only who I used to be. I tell nature I have had enough.

When knowing something is worse than knowing nothing

Posted on Posted in autoimmunity, existentialismTagged , , , , , , ,

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?