on sickness

“Being sick shows us how society is sick” - Martabel Wasserman

On September 24th 2019, at the age of 31, I was told that I was going blind. The damage had already been done: in my left eye, the top left part of my field of vision had already started lose some “pixels”. An ironic analogy that was not lost on me, as I spend so much of my life starting at a screen.

It was a routine eye exam, but I had an intuition that things would not go well. Over the summer, I had noticed a strange patch of fuzzy vision in the top left. I would close one eye and then another, staring at the ceiling or at the sky, trying to diagnose myself.

Back and forth between the eye doctors and my primary care physician I went. I was diagnosed with glaucoma, which is deeply unusual for someone at the age of 31 to be diagnosed with it. There are some cases of infants being born with it. My physician was the epitome of kindness, even as she ordered a battery of blood tests to make sure I didn’t have something else going on.

Glaucoma is manageable but incurable. What that means is, like so many neurodegenerative diseases, Western medicine has figured out how to manage it and slow its progression but not cure it. Optic nerve cells, part of the central nervous system, slowly die off. This part is another bit of irony – we live in an age where supposedly artificial intelligence will replace humans, yet we have still yet to figure out how to regenerate certain human cells. And while dreams of quantum computing tied with neural networks are seductive, such stances overlook the extreme intelligence our cells possess.

Glaucoma is common amongst elderly patients. “And if you’re already 80 years old and get it, well by the time you do go blind, you’re dead!” chirped one eye doctor pragmatically. “But for you, well, given your age…” he trailed off,”there might be some great medical advancements in your lifetime”.

At first, being told that you are going to go blind is devastating. That devastation was tempered by the strange ways people react. I would tell people that I was diagnosed with glaucoma, which meant going blind, and an average person would suddenly transform into a doctor or nutritionist. Getting a disease becomes an insult to someone else’s sense of control in their daily lives. After all, if this could happen to you, it could happen to them. A whole range of reactions occur. People love to say, “Maybe eat more carrots?”, “What about wearing sunglasses?”, “Could you exercise more?” etc. The other end of the spectrum of help includes the “It’s not that bad” scenarios. “At least it’s not cancer”, people would say (which I hesitate to think what these people’s reactions would be if someone said they had cancer). “At least you’re not dying”, is another good one: as if life is so certain that we couldn’t just encounter a fatal accident today or tomorrow. The whole thing ended up being funny because these reactions were mainly other people trying to make themselves feel better. Which is fine by me, I get it. The world can be a scary place.

After a month of telling people, I began to feel better based off of people’s bizarre reactions. At least, I thought, I wasn’t subject anymore to the delusions of operating in a controlled, normative world anymore. Most of all, I remained puzzled by others’ unmet needs (to borrow from Marshall Rosenberg’s Nonviolent Communication) to exercise control over their lives. We like to say “Sometimes things just happen”, but when bad stuff happens, we’re forced to believe it.

And of course, I was very lucky enough to have friends and community that did have supportive, loving reactions, people who still love and support me every damn day. I am grateful for them.

Being sick continues to hold lessons for me every day. Right after being diagnosed with glaucoma, I overcame my complete terror of water and learned how to swim at Miracle Swimming. A few months later, I would swim in the ocean for the first time in my life. Up until then, I held such a fear of water that I was convinced would stay with me my entire life. This is an important lesson. If I could get diagnosed with a random disease, if I could overcome my fear of water, what else did I think was impossible that was actually possible? (A sidenote: I’m now a swimming/water fanatic).

As time passes since my diagnosis, in my waking hours I mostly manage to not think about going blind. The pace of life has changed. Glare and long hours on the computer screen feel uncomfortable, especially after eyedrops. I am slower, time is different. I choose sleep over work. Being well rested has improved my health in other ways, alongside a boost in mood.

Like many others who are sick, sickness has taught me compassion for others. I usually don’t bring up glaucoma with strangers and I do not “look like someone who has a disease”. While I have always strived for empathy in the past, now empathy and compassion hold new depth. I could never, ever, know all the difficulties, the heartaches, the sufferings of another being. There are many actions that people take, actions that come out of pain. Instead of shutting the door on them, I am curious why people do the things they do, out of pain, out of ego death.

There are plenty of other lessons too. The healthcare system in the US is messed up (but you probably already knew that). I’ve learned the ways that capitalism embeds itself deeply into the ways we think about our lives, through mechanisms of planning and control, and that capitalism thrives off that deep fear and uncertainty at all scales. I’ve looked back upon old computer vision homeworks and love reading about recent AI applications in computer vision. The experience of having my vision threatened has allowed me to understand how computers will never see with such gusto, passion and depth the way humans do. Sometimes in bouts of depression induced searches, I read endless troves of papers about glaucoma, vision research, computational neuroscience and the central nervous system. Because I do hope for a technological fix. More than a technological fix though, I hanker for a cure or the fulfilled promise of cyborg-ness. We simultaneously know so much and so little about the brain and about seeing. Mainly, what we know is that the human brain is not only extremely complex, but that the brain works alongside part of the body in fantastically interesting ways: the importance of microbes in feeling, the role of the liver in vision. And so on. It’s made me internalize the knowledge that no amount of linear algebra or fast processors could achieve really seeing.

Seeing the sliver of gold shadows cast onto my living room wall, sunlight filtered through vines and leaves, as darkness and light glimmer, I understand that it is a shadow, a beautiful shadow at that. It is a shadow that I have never seen before, but I understand the depth of the image in a physical way. When the wind blows and I see the shadows wiggle and change, I almost feel the gust against my face. I am reminded of Oliver Sacks’s distinction between information and knowledge. Computer vision has the power to sort and classify information, to aid humans in building knowledge, but I would not call computer vision a form of visual knowledge building.

The threat of blindness looms, and while somedays I approach it with scarcity or sadness, most days I try and approach it all with abundance. I have learned a lot from this but there are no easy conclusions. The only thing I can do is to keep learning.