Architecture, free speech, and the fight for the individual soul

Posted on Posted in architecture, culture, free speech, literature, Politics, When Love SpeaksTagged , , , , , ,

When Love Speaks -- a novel by Tobin Spratte

A single week of news could do more to sell my books than a decade of marketing to family, friends, and anyone who will listen.

Click here to buy the Kindle version of When Loves Speaks. Click here to buy the printed version.

This week, a pair of Bostonian architects have come to the defense of brutalism while conspiracy theorist Alex Jones has been censored by Facebook, YouTube, and Apple on the grounds that he incites violence and hate. My first novel’s themes have come to life.

Alessandra Burley and the politics of architecture

When Love Speaks is a romance between an architect and an opinion columnist. The female protagonist, named Alessandra Burley, works to restore and rebuild century-old homes along Colorado’s Front Range. She loves architecture that glorifies the best of humanity and dislikes the abstract, inhuman appearance of modernism. She would agree with Donald Trump on one thing: Brutalist architecture is ugly.

The J. Edgar Hoover FBI Bulidng in Washington, DC, uses cold, post-World War II aesthetics to convince individuals their soul no longer belongs to themselves but to the state.
The FBI’s J. Edgar Hoover Building in Washington, DC, embodies the underlying ideological message behind brutalism: Your no longer belong to yourself. You are no more your own man (or woman).

Brutalism evolved in post-World War II Europe from forms created by the Swiss modernist Le Corbusier. Steel wasn’t widely available following Europe’s costliest war, so architects and engineers built structures from concrete. The movement, explains Mark Pasnik, is about an ethic rather than an aesthetic: Be honest about your materials, show them for what they are.

Thank you, Ellsworth Toohey.

The movement caught on in the 1960s and 1970s and represents what Alessandra Burley sees as the architectural antithesis of human decency and liberty: Function over form, matter over mind; the needs of the many outweigh the needs of the few.

Brutalism’s proponents hardly disagree. Pasnik and Chris Grimely state the movement “became synonymous with the modern international bureaucratic order” (it’s all over Washington, DC). They write:

“Concrete buildings recall a time when our country invested in the civic realm [that is, when government elites invested in themselves], when government could be a positive caretaker of its most vulnerable people [when communism was most popular], when the nation could sincerely express collective aspirations and openness through monumental structures [when people were easier to control by giving them bread and circuses].”

For men like Pasnik and Grimely—men who worship the state as though it were God and praise the J. Edgar Hoover FBI Building as though it were Rome’s colosseum or Chartres’s cathedral—these are good things. To them, the individual matters not in an age where her body, mind, and soul can be crushed by a single concrete block.

As another of my characters, Argentine architect Miguel Estrada Ramírez, tells Alessandra Burley, “All architecture is a reflection of politics. All buildings demonstrate ideological goals.”

Brutalism exists to convince you your soul is dead and remind you your opinion no longer matters. Its message is clear: Get in line for your bread and embrace your government-controlled future. (But first please fill out forms GSB-1071 and GSB-1074E.)

John Cartwright and the politics of free speech

John Cartwright, the columnist in my novel, is willing to die to defend the freedoms he holds dear. He finds himself in trouble after the government passes the Brandenburg Act, a law named for the US Supreme Court case which limits speech that incites imminent violence.

But unlike Alex Jones, John Cartwright is a moral man. He would never harass Sandy Hook families. He would never spread rumors about Hillary Clinton and a pizzeria-based child sex ring. He would never interview much less vote for Donald Trump. He harbors hate only toward those who would keep men and women from living and thinking as they choose—whether they call themselves Christian democrats, communitarian republicans, libertarian paternalists, progressive liberals, constitutional monarchists, neoconservatives, or communist revolutionaries. To Cartwright, these roses by any other name still reek of power and control.

In response to Jones, free-speechers on both the right and left have canceled their gold-card memberships. Neil Macdonald of CBC News calls “the doctrine of free speech flawed” and brands Jones as a bigoted liar who “deals in viscous stupidity.” His penultimate line reads: “Alex Jones’s horrifying incitement goes too far.” Anoa Changa at the Huffington Post absurdly and inaccurately claims free speech laws and media corporations protect only white, conservative speakers. She writes: “Jones is not the hill any free speech advocate should want to die on.”

If we do not defend the rights of society’s most deplorable to speak, then soon, none of us will be able to speak.

Alex Jones is a rotten piece of anti-intellectual neofascist filth. He no more loves liberty than Cartwright does control. But if we do not defend the rights of society’s most deplorable to speak out, then soon, none of us will be able to speak out.

Toward the end of my novel, one of Alessandra Burley’s friends asks her, “But you don’t think he [John Cartwright] goes too far?”

Jones’ ban from major social media platforms again raises that question. Do you believe in freedom for the thoughts you hate? Would you place society’s vilest men on the gallows for mere words?

Becoming your own House episode

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

Six months have passed since scaly, irritating rashes first appeared on my elbows and knees. Based on my family’s medical history, my doctor thought it was psoriasis.

Two months later, a much larger, much more painful blistering rash appeared on my left arm. Another massive rash formed across the crest of my shoulders through my lower neck and across my chest.

This third rash—called a shawl rash by doctors—is characteristic of dermatomyositis. Add in what look exactly like all these other rashes along my joints (called Gottron signs), the results from two skin biopsies and from my blood tests, and I thought my dermatologist correctly diagnosed me.

However, yesterday’s visit to a well-regarded Phoenix rheumatologist put me right back where I was a month ago. We know I have an autoimmune disease. But after looking at the pathology reports and examining me, he hesitated to jump to a conclusion.

This is the point in an episode of House, MD, where the title character stares at his patient while his body fails him. Family demands to know what’s wrong. House replies, “I don’t know.”

Turns out, my skin biopsies only rule out psoriasis and fungal infection and confirm my immune system is attacking my skin. But as I mentioned in an earlier post, there are probably more quarterbacks capable of winning a Super Bowl than there are dermatopathologists who can differentiate dermatomyositis from lupus under a microscope.

Blood tests, at this stage, are also inconclusive. My labs show elevated aldolase—an enzyme that helps convert glucose into energy and points toward muscle damage. But all the tests for antibodies associated with myositis came back negative, except for one, which was barely detectable.

The rheumatologist also thinks my antinuclear antibodies are much too high for a typical dermatomyositis case. He also doesn’t think my muscles are weak enough.

All he is willing to conclude is I have interface dermatitis and dyspnea—that’s Greek for a complicated rash and shortness of breath.

This is the point in an episode of House, MD, where the title character stares at his patient while blood appears in the urine bag. Family members demand to know what’s wrong. House replies, “I don’t know.”

“I need answers, not tests, people,” I want to scream.

He re-assembles his team around the glass table, writes “kidney failure” on the white board and pours himself a cup of coffee.

“I need ideas, people,” he barks at his hand-selected team of doctors.

It's not lupus. Except when it could be lupus.

No, my kidneys are not failing. And yes, my doctors know much more about my condition than House’s team does 33 minutes into an episode. But like House, my rheumatologist ordered more tests. I need a CT scan of my lungs. I need my urine analyzed. And my blood has been sent to a lab specializing in detecting antibodies and other biomarkers associated with autoimmune conditions.

“I need answers, not tests, people,” I want to scream.

To make the House parallels worse, my rheumatologist has suggested lupus. Where’s a wise-cracking misanthropic diagnostician when you need him?

Surviving adolescence: lessons for a suffering seven-year-old

Posted on Posted in autoimmunity, dermatomyositis, dermatomyositis, kyphosis, Scheuermann’s disease, symptomsTagged , , , , , ,

I asked my dermatologist when he last saw a case of dermatomyositis. He said a year ago. A little kid came in with it.

Picturing a tiny human being suffering as I am suffering is enough to raise one’s blood pressure and turn one’s face red.

Most children have such sensitive skin and so little muscle to begin with, I can only imagine how he must feel—burning, itching, being teased at school.

To anyone else out there suffering: You are no more your disorder or disease than I am mine. We are humans, not monsters. And we must love ourselves as we are.

When I was twelve, my pediatrician noticed a curve in my spine. Fast forward three years: the curve became a hunch. Add in my dorky green glasses, middle school levels of self-esteem, and grades our teachers posted on the wall (“anonymously” by number, but everyone knew) other kids could only envy, and I was ripe for ridicule, the proverbial wounded gazelle on the Serengeti. Two kids nicknamed me hunchback. My own sisters called me Quasimodo.

Despite being close to six feet tall before reaching high school, my Scheuermann’s disease left me weak and deformed. I played nose tackle on one of the eighth-grade intramural football team, but I couldn’t push anyone off the line. Despite loving music and being one of the best trumpeters in school, I quit after two days of band camp because I refused to be yelled at by my section leader, assistant section leader, drum major, and the martinet of a band director for a physical deformity I never asked to have.

High school eventually improved as I grew and added muscle during cross-country practice. After all, nobody is going to pick on someone who stands half a foot above them. But scars like that never fade. Time doesn’t heal all wounds.

A kid covered in rashes from dermatomyositis looks like a leper victim. No doubt other children believe him to be contagious. Ignorant parents are equally concerned. He becomes an outcast.

We want to be angry for the suffering of innocents, but at what or whom? We blame abuse on bad parenting, but who deserves to be chastised when a seven-year-old develops an autoimmune disorder?

I imagine him still. I have not seen his face. I know not his name. But I see him now—as clearly as I see the thickened, scaly skin on my left arm, and I wonder if he sees as I see, if he feels as I feel, if kids are as cruel in 2018 as they were in 1998.

Is he, like me, tired all the time but unable to sleep? Or is that a symptom reserved for an adult hopped up on caffeine, workout supplements, steroids, and stimulants for ADHD?

Does he, a small boy, contemplate his own mortality and he waits for modern medicine’s miracles? Or is like seven-year-old me, happy and content building pirate ships from Legos as he looks forward to spring breaks, summers, and turning eight?

Childhood traumas hurt. But we can work past them. And with the right attitude (and help from friends and therapists), you see what you never saw before.

I wish thirty-something me could have told teenaged me that girls tease you when they like you. I wish thirty-something me could have told teenaged me some things you shrug off and others you just don’t have to put up with.

But would my life be the same? Would I be who I am today without those wounds, without those hurtful words? Would I be able to persevere through my latest genetic disease if I had not already conquered two?

I may never know who my doctor’s other dermatomyositis patient is. But if he’s out there, now or ten years from now, reading this, I hope he remembers as I so often remind myself: He is no more his disease than I am mine. We are humans, not monsters. And we must love ourselves as we are.

Living on the edge while working on the frontier

Posted on Posted in dermatomyositis, treatmentsTagged , , , ,

I manage and help write proposals at a university placed by the Times Higher Education in the world’s top 1 percent. Few places on earth are better for studying and advancing research in industrial, computer, electrical engineering; materials science; earth and space exploration; and biotechnology.

In doing my job, I see even before other academics and researchers how the world’s best scientists and engineers expand the frontiers of their chosen fields.

One engineer has a method for getting rid of dendrites in lithium batteries. I cannot say anymore than that, but in short, he and his partners know how to overcome one of physics and chemistry’s biggest obstacles to higher-capacity, longer-lasting lithium batteries in smartphones, drones, laptops, and electric cars.

A team of biochemists is folding nucleic acid nanostructures into geometrical shapes that can be used to reinvent biology on a nanoscale. Some day soon, they may be able to fold DNA and RNA—nature’s genetic instructions for life to grow, develop, function, and reproduce—into cures and treatments for cancer and infectious diseases.

My hope is they or someone else uses such methods to invent a cure for autoimmune diseases like dermatomyositis.

Living on the edge of what’s possible in modern medicine in a chaotic world seemingly controlled by corrupt institutions can be discouraging. Not knowing what cures and treatments await me induces as much anxiety as simply having the disease and as much frustration as dealing with hospital and insurance bureaucracies.

But it helps knowing such people are out there, looking at ways to improve humanity and society, to make our lives easier, is encouraging—especially for those of us waiting for a miracle.

The spirituality and sensitivity of broken skin

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

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.

Exercise and dermatomyositis

Posted on Posted in autoimmunity, dermatomyositis, treatmentsTagged , , , ,

Exercise is important for all of us. For me, it may save my life.

The worst symptom of dermatomyositis is muscle weakness. This happens because when you have myositis, anti-inflammatory cells meant for fighting infection attack your muscle cells. Over time, without regular use, your muscles waste away faster than they would in a healthy person.

Exercise is one of the best ways to combat the muscle deterioration caused by dermatomyositis.

This, of course, means I will have to give up my dreams of becoming a fitness model for a Slavic-language bodybuilding magazine or the National Football League’s oldest rookie wide receiver. Similarly, I will no longer be moonlighting as a piano-moving, tuxedo-clad male stripper. Sorry, ladies.

But muscles are not just for opening safety-sealed jars and trying to embody all that is man. You use muscles every time you move, talk, blink, wink, beat, or breathe.

The body’s diaphragm and external intercoastal muscles operate the lungs and help expand and contract our chest cavities. If these become weak, breathing becomes tough. If they get weak enough, you can’t breathe at all.

The heart is also a muscle. If your anti-inflammatory cells begin to attack it, without treatment, your heart would eventually fail. Fortunately, heart involvement in dermatomyositis only occurs in about 10–15 percent of patients. Fortunately for me, my last electrocardiogram revealed no abnormalities.

Exercise is important for all of us.

For me, it may save my life.

To keep my lungs and heart healthy and regain the lost strength in my muscles, they need to be exerted and stressed. They need to continue to break down and rebuild themselves to combat my immune system.

My whole life I have stayed active, so working out adds nothing new to my routine. At times, I lifted weights, ran, or played touch football with friends as many as five days a week. The last several years, I added protein or creatine or other workout supplements to help build muscle and soften the jump over age 30—at which point, almost all men start to see their athletic performance decline.

So I’m ahead of the game. And doing more of the same—exercising, eating well—can only help me for now. Plus, turns out, creatine supplements are a safe, relatively inexpensive way to improve muscle performance and function in dermatomyositis patients.

What is dermatomyositis?

Posted on Posted in autoimmunity, dermatomyositisTagged , , , , ,

My dermatologist called this week with my skin biopsy and blood test results.

Microscopes revealed my purplish rashes are thickening my skin in places, wasting it in others. Inflammatory cells meant for fighting infections have clustered around my blood vessels.

My blood shows elevated levels of creatine kinase and aldolase, the former an enzyme that breaks down the creatine commonly used by athletes and bodybuilders, the latter an enzyme that helps convert glucose into energy; these enzymes presence in my blood reveal I have muscle damage.

I have dermatomyositis.

Dermatomyositis is an inflammatory disorder in which the immune system mistakes the body’s muscle and skin cells for invaders and attacks them.

No autoimmune disease diagnosis is good. But the more common ones—lupus, psoriasis, rheumatoid arthritis—have modern treatments, including advanced immunosuppressive drugs. Over 90 percent of those afflicted with such diseases in the United States live a full life.

Dermatomyositis affects less than five in 100,000 people. Odds are my dermatologist has seen only a handful of cases in his lifetime (even in a city of five million). By contrast, over three million Americans have psoriasis. Lupus is about half as common as psoriasis, affecting 20 to 70 in 100,000.

To compare these autoimmune disorders with the more familiar, as many as 35 million Americans every year get the flu; 38.4 percent of Americans have or will have cancer.

An estimated 16,000 people in the United States have dermatomyositis. Considering the world’s third largest population is spread out over the world’s fourth largest country, the chances you ever meet one of them is very small.

None of these figures are to downplay the symptoms and suffering of other autoimmune, infectious disease, or cancer patients. These merely illustrate the rarity. If lupus is a medical-school disease, then dermatomyositis is that annoying challenge question some irritating MD-PhD-MPH snuck onto his medical student’s exams (interesting med-school fact: to the untrained eye, skin biopsies from dermatomyositis and lupus look very similar under a microscope).

Dermatomyositis is an inflammatory disorder in which the immune system mistakes the body’s muscle and skin cells for invaders and attacks them.

Major symptoms of dermatomyositis

  • Itchy, painful, bleeding purplish-reddish rashes occurring along the shoulder line like a shawl or in a V-shaped pattern above the breasts
  • Gottron’s papules, which are scaly, red rashes on the knuckles, elbows, and knees
  • Muscle weakness
dermatomyositis muscle biopsy under a microscope
In myositis patients, immune cells attack the body’s muscle cells, causing muscle damage and weakness. Here, the immune cells are purple, the muscle cells pink.

Other symptoms of dermatomyositis

  • Rashes around the eyes and on the face made worse by exposure to sunlight
  • Swollen, sometimes painful joints
  • Difficulty breathing from weakening lung muscles or interstitial lung disease
  • Difficulty swallowing
  • Calcium deposits

By modern standards, treatments for dermatomyositis are primitive. Every single drug used to combat any form of myositis was developed and used for something else like treating cancer or malaria. All of these have serious, even life-altering or life-threatening side effects. Corticosteroids are the first-line treatment, but they are not without serious risks; long-term users can develop additional muscle weakness, peptic ulcers, steroid dementia, osteoporosis, or Cushing’s syndrome.

Of course, doing nothing is not an option. Without treatment, dermatomyositis kills you.

So where does that leave me? Where does it leave others battling some form of myositis?

I don’t yet know.

Exercise and physical therapy will be very important and may one day save my lungs or my life. Stem-cell therapy may eventually work. New wonder drugs and therapies are being invented all the time. New uses for current drugs are always being explored. Meanwhile, there’s prednisone. And I’m not giving up on myself, on my disease, or on the marvels of modern medicine.

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?