Ankylosing Spondylitis Eradicated? A Post-Apocalyptic Fantasy Called GreenEva

February 17th, 2073.

Everything was eerily calm. Aside from a few fiery crashed planes and the last of the human-powered trains derailing, the world was quiet. Too quiet, except for hungry dogs with full bladders barking inside suddenly empty houses.

Traffic lights changed from yellow to red, red to green, then yellow to red again. Clock towers struck 9:00 AM and the Times Square marquee scrolled unchanging stock market shares. Swing sets swung and flags unfurled in the breeze.

This wasn’t the post-apocalypse sci-fi anyone had read as a teenager.

People had simply vanished. Poof.

The dark green fog, Green Evanescence, had taken every human with it.

Almost every human.

I’m one of the survivors. I survived because I used to have Ankylosing Spondylitis.

GreenEva took so much from us. But it also gave back so much. The memory is hazy now, but I remember waking up that cold February morning in 2073. It was like walking through a nightmare.

November 5th, 2081.

It’s been nearly 9 years since the storm.

This morning I was scouring an abandoned parking garage for a warm coat. No luck on the coat, but I did find some dehydrated mushroom broth – huge score these days. But what stopped me in my tracks was a faded note scrawled in charcoal on the third-floor stairwell above an old ad for spine transplants:

“I’ve been cured. I’m no longer in pain. All ankylosing spondylitis sufferers are cured. None are in pain.”

The note brought it all back as if the storm had happened that morning. It’s taken the whole day for me to calm down.

GreenEva took so much from us. But it also gave back so much; we just didn’t know it yet. The memory is mostly hazy now, but I do remember waking up that cold February morning in 2073. As I said, it was like walking through a nightmare.

And that nightmare has now merged into our new reality as a planet.

The world is now inhabited by a population of mostly healthy ex-chronics – people who used to have Ankylosing Spondylitis. We thought a cure would happen with some sort of stem cell transplant, but the scientists never got that far. The storm is what cured us. But the price of the cure was the disappearance of everyone else.

Everyone else simply ceased to exist. If it wasn’t for video diaries and DNA banks we would be hard-pressed to trust our memories that healthy people ever existed at all.

The graffiti from the parking garage got me thinking about how much has changed.

We are now 10 million people (in 2018 they believed just 2.7 million people in the US had the disease) – and we have no nations. We are too busy living to separate ourselves. All the babies born in the past 8 years have been completely symptom-free with no need to investigate for possible AS and we’ve all but doubled our population. But none of us adults are sure this AS cure will last. After all, the idea of a cure was still laughable in 2070.

We’ve confirmed the majority of our population has the HLA-B27 gene (90% HLA-B27 postive, 10% HLA-B27 negative), and those without it show visible signs of being extremely sensitive to GreenEva toxins. B27 negative people now have a permanently green sclera, so anytime the warning sirens go off we prioritize shuttling people with green eyes to sealed ground pods so they aren’t exposed to more of the fog. We built the pods after noticing some sunsets are tinged with green. Who knows if another storm will come? We have to be prepared, and preserving lives is a top priority.

Oh, I should mention the robots. Alexa, that “new-age” Amazon.com device from the early 2000’s, was the start of an influx of robot technologies that began to power our homes and our lives. Thank God for most of our world’s intelligence remaining intact through their systems. This information has been useful mentally, socially, physically, scientifically, and governmentally.

Most of us are still upright, but there are groups of us whose spines were already fused in that telltale hunchback. A cure doesn’t mean we returned to our pre-disease shapes – but luckily there is no longer pain. Those who are happy to hobble with their canes and rove around in their wheelchairs are of course permitted, but a lot of us elected for the space-age technology left behind by NASA and the NIH/CDC’s 2037 10-year collaboration with the American College of Rheumatology (ACR), European League Against Rhuematism (EULAR), the Spondylitis Association of America (SAA), the National Ankylosing Spondylitis Society (NASS), and the Canadian Spondylitis Association (CSA) to form completely new spines, regenerate muscle that went years unused, and heal organs that had been crushed.

Not quite cyborg-material, but close enough.

It took a couple years after the storm for me to realize that the next day I would wake up without pain. It took that long, too, for my medical anxiety to lessen. I was so accustomed to my regular infusions that it took some serious therapy to get used to not needing regular treatment.

I’m still getting used to breathing a full breath of air again without lungs fused to my breastbone. Amazing what medicine can do these days!

I know most of the people responsible don’t exist anymore, but I remain forever grateful this progress was made possible through the uncharacteristic special approval by the United States Congress for the NIH/CDC to federally fund the multi-national collaborative research project. It helped that the United Nations jumped in to facilitate the negotiations.

At first I suspected GreenEva was all a cruel joke. The first weeks were spent gathered in living rooms trying to figure out why we were spared. And slowly we grew to realize what we had in common: ankylosing spondylitis. Those who hadn’t been diagnosed, well, we had to backtrack all their symptoms and retroactively diagnose and then retract their diagnosis.

AS simply didn’t exist anymore. Eradicated. What kind of storm does that?

Then I thought it was terrifically funny. I had severe laughing fits where nothing made sense. My grief in losing so many friends to the Evanescence on top of suddenly being apparently disease- and symptom-free was too much.

That’s what we do when we’re in shock, sometimes, is laugh before we cry. What cruel Truman Show did this to me? Did I ever have AS? Did I take the blue pill and forget about it? What would I do with all my health now that there was so much of it all of a sudden? Should I push my body and really run, jump, swim – or whatever I pleased?

Our support groups from the past became our town hall meetings where we supported each other in our sudden recoveries from pain and disease. Even with the scars that were left on our bodies there was grief in coming to terms with a return to health after lives spent in incurable bodies. We never expected a cure and now that we had one we didn’t know whether to prod it with a 10-foot pole or toast the heavens and sing Hallelujah.

Imagine you’ve been told your whole life you’ll never amount to anything and then you win the lottery the same day the love of your life dies. Or something like it.

Of course the healthy people who vanished wouldn’t have understood our state of mind if they were still around. Is that why we, in our cured states, were spared alone? Because no one else would have understood what it meant to be cured from such a horrific disease?

And then, there is a constant reminder that AS may have been eradicated, but there are people who had AS who also have other diseases: Rheumatoid Arthritis, COPD, Diabetes, Tarlov Cyst Disease and other lifelong diseases. A cure for AS is great, but the other diagnoses they have still affect them. How do we support people whose diseases are still around and as devastating as AS was, with no cure in sight?

So I’ve made it my personal mission to establish an expectation and responsibility for those of us who regained our complete health to use our health-privilege for good. It is upsetting, even with the excitement of being cured, to know that not everyone’s suffering has disappeared. We have a responsibility to invest ourselves in a world that could one day be completely disease-free.

So I’ve developed a virtual campaign to help those who are still living with lifelong diseases tell their stories and access the appropriate and adequate services they need to live a high-quality life. It’s what I wanted when I was still sick; a platform for people to share authentic stories of pain alongside adequate medical care. Why should I change my pre-GreenEva life goal of making ankylosing spondylitis a household name when there are still diseases out there that are invisible?

Socially, I get by these days hoping the electricity doesn’t flicker in the middle of a virtual reality call with friends overseas. I moved into a small house with a nice yard, something I could have never afforded living on the disability vouchers, and I host potlucks most weeks. I cook all the time from my garden – thankfully it seems our soil wasn’t tarnished from the storm. Well, if it was I guess we wouldn’t have another option anyway.

I must say I’m thankful we hit the pause button on developing newer technologies because of this. It was all going a bit too fast for me – and my goodness it feels so nice to just dig in the dirt rather than be tethered all the time to some microchip the government is watching.

GreenEva in the Big City — Image hand-painted by Denice Ristau

Eight years gone and we’re no closer to solving the puzzle of GreenEva, but teams are working on this exploration and giving regular reports through virtual reality live-streamed conferences each week. Tuning in is encouraged – not mandatory – but I haven’t missed one yet. Even though there are no developments to speak of and I’ve basically memorized the weekly script there is a calming effect knowing that a dedicated group of people has made it their life’s work to find something, anything.

We ruled the alien theory unlikely, especially considering how advanced our communications systems had progressed in the mid-2050s; we were in regular and peaceful communication with all other life forms in our galaxy. If anything, the alien organisms and beings were also grieving the loss of life on our planet alongside us.

And that’s about as far as we got, except for the BSCO group you’ll read about below. I feel they’re controversial enough to include in this next section, but that’s just me.

Our biggest political debate as AS-free people has become whether we seek a way to reinfect ourselves.

We have those who call themselves the ASBackers, whose campaign boasts that if we can reclaim our diseases then the atmosphere will return to pre-GreenEva days and bring back those we lost. They have a whole manifesto modeled off the works of Ray Bradbury. We have yet to see their plan for how to actually get AS back. Stay tuned, I guess.

Then we have the Anti-Spondies who are shamelessly appalled by the idea of willingly returning to pain and degeneration by reclaiming the AS disease state. Their awareness pamphlets remind people of the horrors of AS – lest we already forgot – and eloquently offer a charge forward into the continued procreation of our population as is. They remind us that even though the dinosaurs became extinct, life wasn’t fully extinguished and a way forward was discovered.

And then there are the people who want to make life as safe as possible under current circumstances with the hope that something about the atmosphere will change for the better. There are some theories that the green fog contains barium, strontium or cupric-oxide (BSCO). A 17-year-old discovered these possibilities after finding news about NASA experiments in 2017 – but since top NASA scientists are no longer around to test the chemicals in the atmosphere this remains a theory and nothing more. There are, of course, thousands of people who are convinced we need to develop siphons the size of the Large Hadron Collider (or retrofit the LHC to work for their purposes) to filter the three chemicals out of the atmosphere. These people – the BSCO Group – have support where they want it; and for now it doesn’t seem like a dangerous idea.

I struggle with the conflict surrounding the ASBackers, Anti-Spondies, and the BSCO Group. All I remember is how much we – the whole AS community – used to beg for awareness and a cure.

And now we’re just fighting with each other.

Ankylosing spondylitis – a curse that was cured by a scary green storm that left us with unimaginable loss, unimaginable gains, and a tough question about where to go from here.

Will I ever actually be fully free of the damn disease?

This story was inspired by Susan Loomis, whose quote appears in this post. She replied to a Facebook prompt asking for a word or phrase people would like to see in my next blog post: “I’ve been cured. I’m no longer in pain. All ankylosing spondylitis sufferers are cured. None are in pain.”

The two paintings featured in this post were painted by my dear friend, Denice Ristau.

If you found this post entertaining, please consider (if able) supporting my writing with a $3 tip at ko-fi.com/beingcharis. Your support will help me keep the lights on (maybe?) and make me smile. Unfortunately it will neither prevent nor cause an actual GreenEva.