After three weeks, seven vials of blood, one vial of urine, and a computer tomography (CT) scan, my doctors have once again confirmed I have dermatomyositis.
Yet in true House episode fashion, this is an atypical presentation of dermatomyositis, called amyopathic dermatomyositis. In this instance, my skin itches, burns, and aches from the rashes on my arms, shoulders, and chest. But my muscles have not wasted enough to diagnose me with myositis.
Underneath my skin, my aldolase levels are still elevated. My breaths are sometimes shallow. I lost some muscle weakness. (But this could just as easily be all the corticosteroids I have been taking.) And my creatine kinase levels, which would indicate systematic muscle destruction, are within normal range.
Apparently, my body has decided having a very rare autoimmune condition does not make me special enough. According to Callander, Robson, Ingram, and Piguet, amyopathic dermatomyositis affects only 5‒20 percent of dermatomyositis patients. Doctors have only known about the condition since the early 1990s.
Good news at last
For the most part, this is great news. Exagen’s AVISE® test confirmed I do not have lupus, which can affect multiple organs. My urine and blood tests ruled out any kidney or liver damage. Functional muscle strength means I can maintain the quality of life I want.
However, amyopathic dermatomyositis is more likely to affect my lungs. Since my CT came back normal, for now, my doctors are not concerned. But interstitial lung disease remains a possibility. My immune system may also decide to begin attacking my muscles more severely.
My doctors and I will continue to monitor my disease. My rheumatologist has prescribed hydroxychloroquine (Plaquenil), an antimalarial drug used to combat autoimmune diseases. He has also started tapering down my steroids. And my dermatologist gave me a large tube of fluocinonide cream to keep the itching at bay.
Sometimes, being medically special is a good thing. A smile has returned to my face.
Under the auspices of truth, harmony, and justice, in my novel, When Love Speaks, the government threatens to shut down any publisher or broadcaster who will not censor their own for printing or airing anti-establishment rhetoric. If this sounds familiar, it’s because, as Glen Greenwald tells us, that’s exactly what the Israeli and US governments are doing to Facebook.
US senators call for laws that would ruin the internet
Irish journalist Danielle Ryan also reports US Senator Chris Murphy tweeted that hate-speech instigators like Alex Jones use sites like Facebook to “tear our nation apart.” He called on tech companies to “do more” than take down controversial websites, adding that democracy’s very survival depends on privately led censorship.
Ryan warns us Alex Jones may be among the first, but he won’t be the last. His ban is about normalizing internet censorship and controlling truth.
A leaked memo drafted by US Senator Mark Warner, Ryan adds, proposes regulating social media. Warner wants to protect consumers by forcing Facebook, Google, Twitter, Amazon, Apple, and others to verify identities and locations of accounts, to do more to determine which accounts are “inauthentic,” and to “label” bot accounts.
Worse, in a proposal only a nonpracticing Harvard lawyer could devise, he wants to make social media platforms liable for state-law torts (defamation, false light, public disclosure of private facts). Under Warner’s proposed law, if Alex Jones libels Hillary Clinton in a YouTube video, then Clinton could sue YouTube and its parent company, Alphabet, for damages.
Such a law would ruin the internet. It would make platforms and content providers legally and financially responsible for anything anyone says or does using their services. Courts would be clogged with disgruntled corporations suing YouTube for negative product reviews. Pissed-off parents would sue Facebook for high-school rumors. Politicians would sue Apple for dishonest podcasts. Every dollar these companies make would be spent litigating. Even if they won every case, those kinds of operating costs would finish YouTube and Facebook. Competing platforms would never stand a chance.
Using Facebook to Censor controversial content
Facebook and YouTube do not have to provide contemptible trolls like Alex Jones a platform. Tolerating free speech is not the same as the right to a microphone.
But one cannot help but wonder if the government is forcing Facebook to do its dirty work. How else does one explain Mark Zuckerberg’s change of heart?
On July 18, 2018, Facebook’s CEO defended allowing InfoWars and Holocaust deniers on his platform. He said remained committed to keeping Facebook an open platform.
“As abhorrent as some of this content can be,” Zuckerberg said in his July interview, “I do think that it gets down to this principle of giving people a voice.”
Barely a week later, Facebook banned InfoWars and Alex Jones. A company spokesperson told journalists that Jones and InfoWars violated their terms and conditions. In other words, Facebook banned both for hate speech—a term so baffling, convoluted, and presumptive that neither Zuckerberg nor the US Supreme Court can agree on its definition.
The First Amendment keeps the American government from censoring its citizens. But if Facebook won’t stand up for its own rights, how can we expect them to support ours? Has Zuckerberg become the establishment’s stooge?
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 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.
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?
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.
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?
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.
