Kelly Davio’s previous Waiting Room columns for The Butter can be found here.
Next month Fox brings back its wildly popular show, Empire, featuring Lucious Lyon, the fictional music mogul, record executive, and bad guy of Shakespearean proportions.
Lucious spent the first season of the drama believing he was dying of ALS. But in the final hours of Season One, a smiling neurologist told Lucious he actually has myasthenia gravis, and that it’s “highly treatable.” Shortly after, a home nurse gave Lucious an unidentified shot and told him that, within a short period of receiving these injections, he would be be symptom-free.
Hours after the Empire finale, bloggers were writing their hot takes on Lucious and his revised diagnosis. Slate summed up Lucious’s new reality by saying he has “something non-life threatening called myasthenia gravis.”
To me, a myasthenia gravis patient, the idea that I have “something non-life threatening”—and that there’s a magically curative shot nobody bothered to tell me or the medical establishment about—comes as news.
Someone else who might be surprised to hear from Empire that myasthenia gravis isn’t life-threatening is actual artist, songwriter, and producer Stephen Ellis Garrett, who was diagnosed with MG seven years ago.
You might not recognize Garret’s name, but you’ve almost certainly heard his music. Garrett, who wrote, produced, and performed as Static Major, worked heavily with Timbaland (who, if you’ve been watching the credits closely, you’ll recognize as the executive music producer for Empire), collaborating on ’90s touchstones such as Ginuwine’s “Pony”—which has found its second life in the Magic Mike movies—and on Timbaland’s remix of the Destiny’s Child hit “Say My Name.”
Static backed Jay-Z on “Change the Game” and wrote “Can I Take U Home” with Jamie Foxx. He’s the songwriter behind Aaliyah’s success—he wrote her hits like “Try Again,” “We Need a Resolution,” and her final single, “Rock the Boat.” He’s featured on Lil Wayne’s crossover hit “Lollipop.” And that lo-fi vocal on Drake’s “Look What You’ve Done”? That’s Static’s voice, sampled from an old home video.
But we can’t ask Static what he thinks of the way Empire handled MG. In February of 2008, Static was admitted to Baptist Hospital East in Louisville, Kentucky, for treatment, and he didn’t leave the hospital alive. He was only 33 years old.
You could be forgiven for thinking that MG is no big deal if you relied on Empire for information. The most trouble the disease seems to give Lucious is a wobbly hand while he tries to shave one morning and a bout of hazy vision when he plays piano. His symptoms last no longer than a few seconds each time, and they don’t, frankly, seem any more serious than a hangnail.
Reality couldn’t be more different.
Here’s what actually happens to a person with MG: communication between nerves and muscles breaks down. That breakdown causes muscles—important ones—to stop working properly. If Lucious were a real patient, one of his eyes would likely droop or close completely. He might have trouble speaking above a whisper—singing would almost certainly be out of the question. He’d probably be frustrated by spending so much time at his bar, Leviticus, because he might not be able to swallow well enough to get a single cocktail down. He’d probably have difficulty walking normally, much less striding through his office like a god. He’d definitely have to take a whole cavalcade of pharmaceuticals just to get through the day, and some of his pills would work for only three, maybe four hours at a time. Some of his drugs would likely be chemotherapy standbys, and the side effects would be exactly what one expects from chemo. If he were very lucky, Lucious could potentially go into remission, but odds aren’t in his favor.
That’s the easy stuff, the day-to-day living. The worst part of MG—the part that patients like me and like Static have experienced—is something Empire doesn’t even broach: MG affects the muscles needed for breathing. When muscles grow too weak to allow a patient to breathe adequately on his own, he’s said to be in a myasthenic crisis, and is usually placed on a ventilator to keep him alive while he undergoes additional treatments. One such treatment is plasmapheresis, a procedure in which a high-volume catheter—a device that looks like it came out of an Alien Versus Predator movie—is implanted in a patient’s neck. Or hopefully it is. Sometimes the catheter goes astray, puncturing a lung or giving the patient a hematoma. Over a period of several days, all his blood is pumped out through this catheter and effectively scrubbed clean of the antibodies causing his symptoms. And he’ll be awake and alert for the whole, painful process.
It was during plasmapheresis treatment that Static died of respiratory failure.
In the video Drake sampled for “Look What You’ve Done,” Static stands before the camera, the lens close in. He looks almost shy despite the fact that he’s a powerful man, a kingmaker among artists who perform his songs. He says “music is,” and pauses. “It’s like breathing.”
Static didn’t want to undergo plasmapheresis. His wife Avonti told Leo Weekly in 2009 that her husband was crying during the procedure. “I’m not feeling them fucking with my arteries,” she remembers him saying.
I understand that sentiment. When I found myself in the ICU during my first myasthenic crisis, the neurologist insisted I have the catheter implanted in my neck immediately. All I could say—whisper, really—was “I can’t.”
Later, when I could speak again, I tried explaining myself to the attending doctor. “I couldn’t handle it psychologically,” I said. “Plasmapheresis—it’s barbaric.”
He looked at me for a long moment, then nodded. He said, “Most of the treatments we have to do are barbaric.”
Watching Lil Wayne’s “Lollipop” video, it’s hard to imagine that Static—flanked by beautiful women in the back of a Hummer limo, singing poolside at a Vegas villa and wearing a designer suit, upstaging Lil Wayne with his effortless cool—would be dead just weeks after the video shoot wrapped. But Avonti, in the same Leo Weekly interview, said that she noticed her husband’s speech slurring when they talked on the phone, and that he reported being unable to open his right eye. She said his breathing sounded so labored that it seemed he was choking, and that he was so weak that he came off a Louisville flight from Atlanta in a wheelchair.
That’s how quickly MG can move—how insidious it is. By the time the “Lollipop” video debuted, Static had been dead for over two weeks.
That’s what Empire wants you to believe is no big deal. That’s what Lucious’s doctor is talking about when she says myasthenia gravis is “highly treatable.”
In the U.S., there are just 70,000 of us with MG. That may sound like a fairly large number, but compare that with the nearly three million breast cancer patients in the U.S. and you begin to get a sense of just how rare a disease we’re talking about. That rarity is an obvious plus for Empire’s writers; it’s easy to play fast and loose with the details about a disease that few people have ever even heard of. The show’s creatives feel abundantly free to whip up a fictitious shot that Lucious can take to be magically cured. Who’s going to call foul, after all?
The problem, though, is that now we patients have to live with the misinformation that Empire’s spreading; it’s difficult enough to navigate daily life with a body that, when it’s at its worst, is barely functional. We don’t need the added wrinkle of having our friends, acquaintances, and coworkers brush us off as having “that non-life-threatening thing that Lucious Lyon was cured of.”
Nobody’s saying Empire has a duty to realism. This is a show, after all, that featured a rival record company hacking the Empire office’s elevators through the magic of the Internet. Its characters write fully realized, perfectly harmonized duets on the spot. Everyone is beautiful. Everyone is talented beyond believing. We watch Empire for the drama, the music, and the fantasy, not for clinical reality.
And I’m not asking for gratuitous portrayals of suffering—I don’t need to see Lucious drop dozens of pounds because he can’t swallow food, or see him totter when he has to stand unaided. I don’t need to watch him walk with a cane or stop being able to carry a tune because his diaphragm is too weak. I don’t need to see his body broken in all the ways mine’s been broken just to feel seen.
What I am asking is that Empire’s writers demonstrate a little bit of responsibility. I’m asking them not to wave away myasthenia with fictional and impossible treatments that belittle lives like Static’s, or like mine. I’m asking that what we have to live with—from life-threatening symptoms to the lack of safe and fully effective treatments—be handled with a little more compassion. It might be too much to hope that Timbaland use his position as executive producer to honor his late colleague Static’s music, but I hope for as much anyway. If we real patients can’t get a dose of Lucious Lyon’s cure-all shot, at least give us that much.
