Michael Bihovsky

May is Ehlers-Danlos Syndrome (EDS) Awareness Month. I thought I’d use the opportunity to talk about something personal I’ve been going through as that’s a much lesser-known development with EDS (I didn’t even know about it until it happened).

Back in March, I was on set directing when I suddenly saw what looked like a massive translucent worm out the window. It turned out to be a large eye floater – most likely part of a Weiss Ring, which forms when the vitreous (the clear gel that fills most of the eye behind the lens and attaches to parts of the retina) pulls away from the optic nerve at the back of the eye. This is called a Posterior Vitreous Detachment (PVD). It’s most commonly associated with aging and usually happens gradually. It also, apparently, can happen quite suddenly to people in their 30s with EDS.

Within two days, both my eyes were filled with hundreds of floaters (strands and clumps of collagen and other vitreous material that drift through my eyes and cast shadows on my retinas wherever I look). They are mostly a mix of little brown dots, webs, and translucent twists. It looks like a Jackson Po***ck painting (which frankly I wouldn’t want to look at even every ten years, let alone every second I spend in the light). I didn’t do anything to make this happen; it just happened. And then every day, bad went to worse.

I’ve seen two general ophthalmologists and a retina specialist, and none of them have ever seen this happen in both eyes at the same time. The odds of that, I was told, were “astronomical.” So astronomical that when I suggested to the first ophthalmologist that this was what was happening, he refused to even test for it, and told me to (this is a direct quote): “Stop making everything so complicated, and just do what I tell you to do.”

This is at least the tenth time in my life when something horrible with “astronomical” odds happened to me. We EDS patients are accustomed to being doctors’ first cases of something in virtually every medical specialty. We’re just as used to being dismissed and sometimes ridiculed by the doctors we pay to take care of us, having to find one who’ll even do the tests we need, and eventually being told we were right (when all we really wanted was to be wrong). This is a special sickness unto itself within the medical world, and is the cause of much of our suffering. Why do a medical test when you can just tell the patient they’re a melodramatic hypochondriac? Now stop asking questions and pay your copay.

The floaters aren’t going away. I might get more used to them in time, but they don’t “get better.” In fact, since my detachments are still only partial, the retinal specialist assured me that as they continue to separate, they’ll spew out even more floaters. He said I need to go back to him when the separations are complete to make sure my retinas haven’t detached or torn as well (which would require surgery that’s also contraindicated due to unrelated medical issues. Again – astronomical odds).

“How will I know when it’s complete?” I asked. “It’s already horrible.”

“Oh,” he said. “You’ll know.”

So that’s what I have to look forward to.

There’s no cure for PVD, and the only surgery for it is off-limits to me for three separate reasons. “Trust me,” said the retina specialist. “You do NOT want me to do that.”

When a surgeon refuses to operate on you because it’s dangerous and unethical, you listen. You also weep through your permanently broken eyes, because you have no options. Just “Here’s one more permanent loss to grieve and get used to that you didn’t even know was possible to lose.” And “Here’s the cure! And here’s why you can’t have it.”

This has been an awful and preoccupying development in my life. It also caused some friction with some of the people closest to me, who’ve had an occasional floater that went away and can’t seem to understand what I’m complaining about from descriptions alone. And I get it – no one can inhabit your body, let alone literally see through your eyes.

So I decided to do something about it. We talk a lot in chronic illness advocacy about “making the invisible visible.” So I described my floaters very precisely to ChatGPT and asked it to generate two images reproducing what the world looks like to me now. Its images are quite accurate (though it doesn’t look this bad in low light).

The first image in white has a key on the right, summarizing the descriptions of the different floaters I described to ChatGPT. It demonstrates what I see when I look at a blank white surface (cloudy days are the worst). The second image is a simulation of what the sky looks like to me at sunset.

This is what I see when I look at my surroundings, on my computer screen as I’m writing this, and even when I look at the people I love. This is what is distracting me when I try to write a song or just take a walk with a friend. This is what I have to get used to. And unlike in these pictures, the floaters do not stay still. They chase my vision wherever I look, jumping around to catch up. Given that I also have a severe visual-vestibular disorder triggered by movement in my visual field, I’m seeing my worst nightmare all the time.

And I always will.

I can’t put a positive spin on this – nor do I think I should. I wrote this because I think it’s important to be open and honest – especially during an awareness month.

I hope those of you with chronic illnesses and disabilities might also be inspired to find ways to make your invisible problems visible, when possible. It doesn’t make the problem better, but people generally understand you better and become more compassionate. Ever since I generated these pictures, the tensions with people I love have stopped. They get it now. Or more accurately, they know they can never really get it – especially when they remember this devastating development isn’t even in my top five medical struggles right now.

If you’re interested (and have the means), The Ehlers-Danlos Society is a remarkable organization that funds advocacy, awareness, and vital scientific research into this condition. They have a goal to raise $100,000 in May, and would put your donation to excellent use.

Something special coming soon... 😉 Stay tuned!

Photo from tonight’s battle: Chemistry vs. Physics with . Spoiler alert: physics (AKA I) won 😁

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Michael Bihovsky | Official Website - Michael Bihovsky | Official Website **Featured Items** A story of love and disability in the age of COVID-19by Michael Bihovsky Stream “Paperweight” on Spotify and all your other favorite music platforms, and be sure to read Broadway World’s feature for the story behind the music video and song! Keep your sense of humor healthy ...