Ian's story

I’ve been aware of my vision since I was nine years old. 

About halfway through the 4th grade, I noticed everyone in class was following the teacher’s prompts but I just couldn’t keep up with what was happening. A quick check-in revealed I was myopic (near-sighted) and needed glasses. That blurry chalkboard was legible to everyone else, and I had been missing half the story!

This was my first encounter with pathologies in my eyesight. But thankfully glasses are so readily available that the issue was addressed and life got back on track.

Later, in high school, I made the leap into wearing contact lenses. After wearing high-prescription glasses for five years, suddenly my vision was perfect and distortion-free. I felt like a normal kid.

Elated, I decided to keep the lenses in as often as possible, and habitually began falling asleep while wearing them. Without proper lens hygiene, I began experiencing eye irritation that quickly became severe. My ophthalmologist diagnosed the issue as a corneal ulcer caused by a bacterial infection, which required immediate attention in order to prevent permanent damage to my vision. A topical medication needed to be applied to my eye at regular intervals around the clock.

Thanks to a tireless mother who was willing to wake me up through the night to apply the medication, I fully recovered and my vision was saved. What a relief!

A decade later, in 2015, I went with friends to a camping music festival in the desert. For a week we attended concerts outside, and were exposed to challenging physical conditions: hot and arid days, cold nights, heavy exposure to alkaline dust blowing up from the ground. 

One morning, midway through the trip, I awoke in my tent with a new semi-translucent stringy amoebic shape floating in the center of my vision. I’d seen opacities like these when squinting up at the sky as a kid, but they always seemed to dart away, too shy to be looked at directly. Short-term visitors that caused more intrigue than annoyance.

But this one seemed to sit in place. It must be different. Was this dust in my eye? I blinked to clear it away. But it remained in place, undeterred.

It must be my contact lens falling apart…no problem: I had a spare set with me. Easy enough to swap out.

But when I pulled out the suspect contact lens, I noticed the shape was still there - a smudged webby patch in my blurred eyesight. I squinted and its shape seemed to come slightly into focus.

It’s got to be dust.  Just needs a little extra nudge to move along. I rubbed my eye a bit more furiously.

The stars faded, but there remained the shape, defiantly staring back at me.

Oh right, it’s got to be a stray hair dancing in front of my face. Hah, why didn’t I think of that?

Okay, no….that’s not it…hmmm.

I rubbed my eye some more, unable to escape the gnat inches away from my eye. A sudden panic - get away from me! Claustrophobia began to build. Get out of here!

And then compounding the panic, I began to worry…

Was something wrong with my eye itself? Had I mistakenly looked at something that damaged my vision? A laser? Pyrotechnics? Being in a festival setting, I began to suspect some faulty lighting equipment may have damaged my eye. 

Frustrated and worried, I made a plan to visit the ophthalmologist as soon as possible.

Upon visiting my first eye doctor, I was told something I would hear many times over the coming years:

“Your retina is healthy. There is no detachment. You shouldn’t worry.”

Initial relief that I hadn’t damaged my vision was short-lived, as it didn’t answer the obvious next question: how do I get rid of this aberration floating in the middle of my line of sight?

“It’s a floater, and it’s normal.”

“It’ll probably drift out of your line of vision.”

“You’ll learn to ignore it.”

“You’re okay. Don’t worry about it too much.”

And then the most frustrating line: “You may want to give it a name, because your floater friend could be with you for a while.”

Wait, what? Are you saying you don’t have a way to get rid of this? That’s got to be a joke…

A second opinion, a third, a fourth. Waiting for it to heal itself, move, settle, or shift out of the way. Each hour with this fly in front of my face, a lifetime; each day, a test of endurance. Weeks of full-time frustration…months…years…

“You’re fine. Your eye is healthy.”

“Don’t worry about it. Just ignore it.”

But it’s the first thing I see in the morning. I can see it through my eyelid in the morning light, even before I open my eyes. It wiggles and swirls every time my eye moves, with every line I read, every image I look at. Every sunset, every mountain view, every family holiday. Every conversation with a friend, it’s there dancing in between me and the world I used to be a part of.

Hard to work, hard to read. Hard to have a conversation. This has knocked my life off course.

The frustration is hard to describe. I’ve broken bones, pulled muscles, battled sicknesses, and honestly, none compare to the toll this takes on one’s life. Because an ailment without an end-date or a route to recovery feels like a life sentence. Every waking moment becomes a taunt. The inevitable depression, grief for a normal life lost, anger, frustration, isolation, disbelief.

And over the years, my floater has gotten worse. Larger, more opaque. Trending in the wrong direction, I stand by a helpless witness, watching the crime in real time. And then salt in the wound: while laying in bed with COVID, dehydrated and feverish, the other eye developed its own…

Now they each dance independently from one another, layers that overlap and distract, each with its own rhythm and strategies to intercept my attention. Even more punishing than before.

But then after years, curiosity creeps in. Who else has this issue? Online forums reveal similar stories. Wait, there’s a name for this? “My-oh-dess-op-see-uh.” 

Dead-end solutions of every variety:  supplements, pineapple extracts, eye-movement exercises. Snake oil. Unfathomable to give someone false hope.

But there is legitimate research too? Backed by science, clinical? YAG lasers, vitrectomy, new techniques in development. An epiphany, and possibly a solution?

But there are risks. And they’re serious.

Am I willing to lose my vision altogether trying to fix it? 

Am I willing to trade the floater for cataracts?

Am I willing to wait 5, 10, 15 years for technology to improve and become safer?

I’ve weighed the pros and cons daily.

But then the internet reveals that there are peers with this condition, and they understand it just like I do. They know that life with myodesopsia is not okay. That we are not okay. That we must push to solve this issue for ourselves and each other - and one day for our kids, so they won’t know this same struggle. 

This connection to others with the disease has been the most helpful to me in my journey with the condition. Sharing information and coping techniques, corroborating the experience, and putting our energy together to help develop a safe solution.

And so if we can organize, if we can come together with our various stories and talents, if we can convince the medical community this issue needs attention and that our community is large enough to warrant the effort, then the new technologies and treatments can begin to come into focus. And we can begin to envision our future once again.