Empire is Fox’s hit TV show that millions of people can’t help but love. For Myasthenics, this show in particular was put on the map in our communities when the writers chose to use Myasthenia Gravis as a dramatic element for one of it’s main characters, Lucious Lyons, played by Terrence Howard.
Back in 2015, awareness efforts on Twitter and Facebook were at a frenzied pace. I remember living on my phone almost the entire month of June that year, to the point where I wouldn’t realize the passage of time or interact with my family. Myself and several others pushed hard for awareness on Twitter, reaching out to everyone we could for retweets, shout outs and love. Empire had premiered in January of 2015 and the buzz reached an excited pitch when Lucious Lyons had been diagnosed with MG later on in the first season. Our Twitter awareness efforts extended out to the Empire writers and cast as the news broke about his wrongful diagnosis from ALS to Myasthenia Gravis.
Pictured Terrence Howard (Lucious Lyons)
EMPIRE ©2017 Fox Broadcasting Co. CR: Chuck Hodes/FOX
And I watched as the instantaneous reactions lit up Twitter and blogs with headlines and articles lamenting their “disappointment” that it wasn’t ALS, that it was “just Myasthenia Gravis” and how “boring that was” etc etc etc…
Just like that, the precedent was set and stigmas and incorrect information were resurrected and affirmed for the masses. Hundreds of articles were quoting the teeth grinding ideology that “most Myasthenics lead nearly normal lives and respond well to treatment”.
Other than spotty encounters with MG over the last two years with some off beat depictions that sometimes get part of it right, Empire writers have stuck to the plot line that MG would be a peripheral issue for Lucious Lyons. It is a disease the writers have subsequently left to the shadows of the show in a mercurial form that is pulled back into focus when needed for some dramatic flare but no permanent harm.
Leading in to their season premiere (April 12, 2017), the community began to buzz again as trailers teased, showing Lucious struggling on a vent and our hope once again became palatable. Last night, the season opener started on the mark with Lucious struggling to speak and breathe and a doctor urgently seeking to get him to a hospital, telling him that if it wasn’t treated, it could be fatal. They intubated him and cut away with Lucious laying there, struggling. I felt myself growing more hopeful that this time, Empire would get it right.
They come back to Lucious still on the vent, supposedly sedated but very much alert and able to comprehend what is happening around him. The plot line moves on as other characters move deliciously in and out of their woven drama, entwined in complicated relationships with one another. The camera comes back to Lucious yet again and we see that he is being threatened by a beautiful female character on the show and she pulls his vent tube from the machine. His eyes widen and he begins to panic and his breathing distress augments. She smiles until she looks down and sees him pull out a gun keeping his arm close to his chest but still able to hold and aim it at his would be threat. My hope rapidly began to dwindle. Call me a nitpicker or overly critical, I can handle that. But from my perch as a Myasthenic who has almost died far too many times to count and has advocated for more Myasthenics in crisis than I can recall, I began to pick apart the reality of the depiction from his lack of weak neck flexion and his ability to gesture and use his arms quite prolifically with a critical eye. Yes, we are all different. No, we will not all have the same crisis experience for those unfortunate enough to walk in that. But the truth remains that there are foundational principles that MG falls back into, in spite of the uniqueness in presentation from person to person.
In my experience as a patient and a patient advocate, if your diaphragm and intercostal muscles are flaccid enough to need a ventilator for assistance, weak neck flexion, bulbar and bilateral extremity flaccidity is also typically present to varying degrees. The presentation may vary and not all will have every symptom, but it is almost unheard of to have it strictly manifested as a respiratory distress.
At this point, my mind is racing and I am now tensely watching the next cut to Lucious as the show goes on after he draws his gun and is still on the ventilator. Next thing the audience knows, Lucious is off the vent, sitting up in bed with a perfectly bilateral smile, strong neck flexion, able to lead a meeting, freely gesturing and while his speech is gravely and perhaps slightly hypophonic from the vent, his recovery is nothing short of a rapid miracle. Drama ensues with his son and the board meeting he called (which, in most cases would have further weakened him due to high stress post crisis) and the scene cuts away with him sitting up in bed, alone.
The next time the audience sees Lucious, he is miraculously walking into an election party, sharply dressed, no sign of obvious weakness, talking, stirring up some good old Hollywood drama, singing and playing the piano.
For anyone who has ever had to recover from crisis, this ending scene was cringe worthy. To go from a flaccid diaphragm that is struggling for basic contraction that allows continued breathing/respiration, being on a vent a short time, being removed quickly and then bouncing back to go to a party, let alone singing and playing piano expeditiously is so against the basic science and reality behind the disease, it isn’t even funny. In fact, it is down right insulting.
While many may argue with me for my “critical assessment” of his vented performance and recovery, I do not know anyone who could refute the knowledge that no MG crisis ever recovers like that. Ever.
Myasthenia Gravis is nothing if not a complicated nuance. We look for the big picture symptoms and miss the small details and, in my experience, it’s often the small details that matter most when tackling accurate individual care and saving a life in the critical moments.
Even in the best case scenarios with appropriate treatment and accurate triage, the Myasthenic in crisis doesn’t recover so swiftly and completely.
As a community, we now face an audience of millions of viewers who have no other reference to MG other than what they may Google about it or see on a show like Empire, House or Grey’s Anatomy, all of which have fallen far short of tapping into the reality of MG. Our uphill battle in fighting against stigma and pleading for awareness has just grown steeper in the lay community. While not all will take the Hollywood portrayal as gospel, the influence has cast a long shadow against the idea that MG is not easily treated, managed or lived with, it does cost lives, treatments have their own hell and for most, normalcy is a dirty word in a rear view mirror.
Yes, this is Hollywood. Their main game is ratings and making money and MG was their ticket for just the right amount of controllable drama to catch attention and tease out the nature of the disease while still maintaining control that it won’t keep their main character down for long as he seeks to stay at the top of his game. But, I will argue all day long that when they chose MG, they silently accepted a responsibility to thousands of sufferers who are desperate for a voice to show millions of people that our struggle is real, to make it resonate and bring validation. It is what it is. You cannot profit from a disease and not have the courage to get dirty with it’s truth, with the lives it touches. MG doesn’t need a writing staff to lend it drama. It is drama and it isn’t going away.
Empire, you have once again angered and deeply disappointed me. You have made me feel personally invalidated and quite frankly, insulted. While my struggles to live with MG may not look like someone else’s, my unfaded memory of blue lips, shallow gasps, doctors telling my screaming parents I was just anxious as I slumped down onto my side, unable to move or speak, a paged code and the eerie awareness that I was on the line of living and dying tinges my critique. I’ll admit that I am biased and happily so. I earned that bias. My struggle and thousands of others deserve better from you, Empire. We deserve your time, your diligence and your skill.
Just one woman’s two cents (and some change).
– Rebekah Dorr
Founder, Myasthenia Gravis Unmasked