Hello Darkness, My Old Friend

photo of magnifying glass on top of braille

When I was about seven years old, I learned that some people in my family had trouble with their vision. I didn’t think much of it at the time, but it never really left my mind. I remember doing tasks in the dark or with my eyes closed as “practice” in case I ever went blind. It wasn’t an anxious activity and I truly never really worried about it but I did take comfort in knowing that I could go to the bathroom, shower, brush my teeth, comb my hair, and get dressed in complete darkness. It was more of a game than anything else.

At school, I paid extra attention when we learned about Braille and picked the subject up quicker than my counterparts. I had enjoyed Origami since I was five years old so when I learned that blind people sometimes folded their money in special ways to denote their value, I paid extra attention. I spent the next summer perfecting folding paper cranes with my eyes closed.

Contrary to what it may seem, this type of behavior wasn’t strange for me. I was always imagining a different life as a child. I learned how to pick things up with my feet incase I ever lost my hands, I took cold baths and showers incase we ever ran out of hot water. I’d fast before I even knew what fasting was just to empathize with the hungry people, I saw on tv commercials. In hindsight, I looked for ways to be optimistic about things I could control because there was so much that I couldn’t.

The general conclusion of my childhood experiments were incredibly useful and translated into adulthood; what I once had and then lost may be painful but with time, whatever adaptations I have to make will become my new normal.

I was thirty-two years old the first time I lost my vision. I was happily working on my computer at my corporate job and suddenly, there was a dark hole in the middle of my vision. I had been having migraines with light orbs so I was somewhat familiar with vision disturbances but this was different.

While my vision was darkening, I started walking to go get help. My periphery vision was still intact so I was able to find my way and sit down near a managers desk. I quietly got her attention and told her I couldn’t see. I asked her to dial my husband and to ask him to come take me to the hospital. I remember the smell of her perfume. I remember the faint vibration from my apple watch alerting me that my heart rate was over 120. I remember hearing the whispers of my coworkers.

My stepdaughter came to get me from work and brought me to the hospital. I was completely blind when I walked into the hospital, and by the time they called me back to see the doctor, my vision was returning. In total, I was blind for about twenty-five minutes. The light hurt but I could see. I started to tell the nurse that I was fine and that I could go home now and then the worst migraine of my life hit me and I started vomiting. My vision disturbance was due to a migraine. I wasn’t going blind.

I had three more episodes of losing my vision and then promptly getting hit with a migraine over the next four years. Each time I was treated with steroids and migraine medication. Each time I worried less and less about it when it happened. Then I had children and my migraines stopped. For five years, I occasionally had migraines with light sensitivity but nothing like the literal blinding migraines of a few years earlier.

Two months ago, I was having a conversation with my friend in her home and my vision left. It came on slow enough for me to react by finding a place to sit and to inform my friend what was happening. My friend who is medically trained gave me some Aleve and said she thought I was having an ocular migraine. We then carried on our conversation like nothing had changed and within thirty minutes, my vision had returned. I waited anxiously for migraine that never came. I felt fine. Everything was fine.

A week later, I lost my vision again while leaving Walmart with my son. Like the previous incident, after thirty minutes my vision returned with no other symptoms. I went to the eye doctor who preformed scans and determined that my eyes were healthy but strained, a condition easily fixed with glasses. I was assured that any genetic blindness would be detected through scans years before any permanent blindness would set in. The doctor did however inform me that I was experiencing ocular migraines and that light was my trigger.

Two weeks ago, I lost my vision twice, two days in a row. Both times occurred when I was outside during sunset and the sun was particularly bright. Both times I was wearing strong prescription sunglasses. These two experiences were different than the times before because it came on almost instantly, like snow blindness. I was devastated. Despite the eye doctor’s assurance, my eyes were failing me.

Self-pity flowed through me. I felt it. Accepted it. Spent a day in it. And then I let the self-pity pass. I reasoned through the thousands of dollars we would spend to go to doctors who would send me to other doctors to tell me that they don’t know or that I have migraines. I reluctantly decided to consult a friend, who happened to also be a doctor, who correctly diagnosed a sunburned retina. An issue apart from ocular migraines. My eyes just needed to rest to recover.

Last week, I tried an eye treatment to help my eyes heal. The black powder is applied at night. The next morning, there is certainly a raccoon vibe as it looks like heavy eye liner. I liked how it looked so I left it. That morning it was noticeable how much less my eyes hurt when I went outside. My husband said it was my version of “eye black” like what the baseball players use.

Since then, I’ve invested in some wrap around sunglasses and continue to wear my unique eye liner. My eyes are feeling better. My husband has happily taken over most of the driving and I’m planning activities around the bright parts of the day to avoid the sun as much as possible. I’ve invoked my inner child’s adaptable spirit and have found ways to make my bi-polar eyes less problematic.

It is gift to have a sense temporarily taken. I would not ask for it, nor would I wish it upon anyone else, but now that I have experienced it, I have a new perspective that is full of gratitude. My vision is a gift.

Today, I’m writing a blog on a bright yellow keyboard in a dark basement with my eye comfort backlight on my screen. I’m not sure if any one wants to read about my brushes with blindness but it is a gift to simply be able to write about it. Gratitude is what I wish my readers to glean from this. I will embrace the creative spirit of my inner child and take all of adventures my body wishes to throw at me with enthusiasm. In the meantime, I will thoroughly enjoy these fine pleasures of sight, taste, sound, touch, and smell.

Leave a Reply

%d bloggers like this: