"There Is No Before" Myalgic Encephalomyelitis And Surviving Apocalypse
Station 11
This post is my interpretation of Myalgic Encephalomyelitis as an apocalypse through the new HBO Max series Station 11 based on the book by Emily St John Mandel.
Station 11 takes place 20 years after a devastating plague with 99.9% mortality. It follows the stories of a group of disconnected characters, who use the art of Shakespeare and Miranda Caroll who has written the in universe graphic novel Station 11 to make sense of their trauma and loss.
The characters of Miranda, Tyler, and Kirsten are brought together by Miranda's art which processes the trauma of seeing her whole family die in front of her 20 years before the plague causes a similar trauma to the entire world.
All quotations in this post are quotes from Station 11 in one of its 3 forms. The messages are what I took away from its themes, applied to yet another form of trauma.
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"I remember damage."
ME steals lives. Regardless of whether you die as a direct consequence of this illness your life as you know it has ended. Your social network is fragmented or torn to shreds. The activities and routines you lived in are a dream you can only remember. The before you knew is gone. "There is no before."
The natural response to this devastating loss is anger and grief. Pain and loss define our community, and with new patients joining every day the loss is always new, always fresh.
"I stood looking over the damage, trying to remember the sweetness of life on Earth."
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"My memories are the same as yours. They mean nothing."
Trauma itself bends together the past, present, and future. Traumatic memories pull us out of the present. Flashbacks are a central part of PTSD. Collectively we flash back again and again as we watch more and more people fall into our void.
This is the paradox of our apocalypse. There is no before and yet we cannot leave the past behind, and as long as we are stuck in this loop we cannot move forwards.
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"Survival Is Insufficient"
To survive any apocalypse there must be a vision to rebuild. In our community, there are people who have lives. Not the life they had before, not even comparable, but lives nonetheless.
But survival is not enough. Survival alone in a post-ME world is hell. It is only with purpose, hope, or both that we can live on.
We need art. We need visions for the future. We need community and love. It doesn't matter how much our basic needs are neglected, we still need these things.
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"There is no rescue mission. We are the same. We are safe."
What happens when you face the apocalypse but go on living? This is what so many people with ME experience. Our lives ended, our ability to ever live them again within our control ended, but we are still here.
It is easy to feel a continuous sense of danger when you live with ME. Indeed "the world is still a very dangerous place" for us especially those lacking financial and familial privilege.
In many ways accepting danger is easy. It is harder accepting safety, accepting that this is reality now, a reality where perhaps the greatest danger is simply... boredom?
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"There is no before."
Our lives before are gone. But they will also never leave us. "The past is a map, and it got us here."
But it is also essential that we do not live in the past. That we do not let our trauma trap us. That we move forwards and build new lives.
We need to live in the present. Even if that present is difficult or even unbearable. Because we cannot go back. Only forwards. And the lives we build from here should not be the ones that were stolen from us, even if we ever get that opportunity. They should be better for everything we have learned.
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"I find you because I know you and I know you because we are the same."
The disability community, the long covid community and the ME community are all tied together by these shared traumas and experiences. We find each other and support each other.
ME patients immediately knew what long COVID patients were going through as soon as they started dropping ill with post-exertional malaise.
We all want to feel unique, to feel special, but our similarities are multitudes greater than our differences. The human experience of trauma and loss binds us together and that is a good thing.
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"You will know your endpoint when you reach it"
Life with ME is a constant battle. The future feels uncertain, the past is an intangible dream slipping further away day by day.
Between 39% and 57.25% of patients with moderate to severe ME experience suicidal ideation.* Yet most people with ME can recall so many days of unbearable pain that somehow, we have survived. "The worst I may be yet. The worst is not, so long as we can say 'this is the worst.'"
*https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8227525/
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"I have a job to do."
Apocalypse causes unimaginable loss of life. Yet life remains, and while it does so must hope and purpose. What job each of us finds to do in this post-apocalyptic landscape is for everyone different.
What is the point of performing Shakespeare in a world where 99.9% of people are dead?
What is the point of anything but to find a reason to come together and to make our world a little bit better. Research, advocacy, there are obvious jobs to do of course. But texting a friend through a crash, brainstorming ways to stay sane as we lie in our dark rooms waiting, making art, these things matter too.
It is not the job that matters. It is the thought "I have a job to do."
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Our culture has a fascination with the Apocalypse. It's the end of the world... as we know it. But is this not what every person who has experienced Myalgic Encephalomyelitis or profound disability has experienced in some form?
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This post is a bit different from my usual writing. Inspired by the HBO max series Station 11 based on a book I read in school before my own apocalypse by Emily St John Mandel.
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The covid pandemic was not the world ending affair imagined in Station 11. For most people, the world has returned to how it was "before" despite the ever present threat of covid. But for those with long covid there is no before. For those with ME / CFS this apocalyptic change to our worlds has been happening over and over to each of us in turn for decades.
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It is easier for many people to believe that disability is the end of the world than to imagine life after. So many people believe that were they to become profoundly disabled they would take their own lives, and indeed many people struggle with suicidal ideation after disability, but most survive despite it.
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The theme of trauma is ever present in Station 11. The shared trauma of a virus stealing everything you knew from you while somehow leaving you alive. Long Haulers feeling called out?
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Yet also present is the theme of art and purpose. Of someone else expressing a feeling better than you can do it yourself. Of falling back into quotes and plays because the metaphor makes the reality easier to process as I have done throughout my life.
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Station 11 is a show I wholeheartedly recommend to anyone with ME. But I hope that regardless of whether you watch it this post helped give you some words for our collective loss.
