On Thursday I worked from home while my son had virtual school. We went to a protest for police accountability and racial justice; we held signs, we chanted, and we listened to powerful speakers. On the way home, we sang along with the radio and danced in the car, not caring how silly we looked. We stopped at a fast food drive-thru on the way home. At home, we read, got ready for bed, and snuggled up to go to sleep. A typical day in 2020.
Friday morning, I woke up and started getting ready like any other day. I was supposed to go in to the office that day and meet a client in jail. That meant, getting up and dressed in real clothes, getting my son up and dressed in real clothes, making sure he had a lunch, I had coffee, and we both had masks, then dropping him off at the on-site care at his school, and driving to work. So, I got out of bed to start our morning routine. I looked around my room and it was blurry. I didn’t have my contacts in yet, but still, something was not normal. I blinked several times, thinking maybe there was a film of sleep over my eyes. Nothing. I put eye drops in my eyes. Same. I put on my glasses. Still, not normal. I started to panic. “Am I going blind? What is happening?” I closed one eye and then the other and it was clear that I couldn’t see out of my right eye. It wasn’t pitch black, but it was distorted to the point that I could not see. I’ve had glasses since I was three, LASIK after college, many migraines, and rarely take sick days or go to the doctor. This was not normal.
My heart started racing, my chest was tight, and I was having a hard time breathing. I was panicking. I sat down and tried to take deep breathes and calm down. “What do I do?” I’m home alone, with a seven-year-old, I need to get to work, and I can’t see.
I explained to my son what was going on, as calmly as I could, trying not to convey my panic. He can be stubborn and sarcastic and even mean when he’s trying to be funny and cool, but he can also be the sweetest, most loving kid. He said, “Mom, you know, there are lots of people who can’t see at all, and they’re fine.” Which, actually made me smile and calmed me down. Then, he went and got Baby Yoda and brought him to me. We had binged all of Star Wars and The Mandalorian during COVID, and eventually got our own Baby Yoda. Baby Yoda had a calming effect on both of us; whenever we were feeling sad or depressed or anxious during COVID, we’d grab Baby Yoda for a snuggle. It helps! I swear.
I decided whether I went to work or the doctor, I needed to take my son to the on-site care. So, I calmed myself down (deep breaths), got us ready, and out the door. I don’t know why, but it never occurred to me that I couldn’t, or shouldn’t drive. I had things I needed to do, so off we went. I drove him to school with one eye closed. My left eye was normal, but keeping them both open was very disorienting. Imagine you went out for the night, drank too much, and everything was fuzzy and making you dizzy. That’s what it felt like to keep both eyes open, even worse driving with everything moving around you. I got him to school and then pulled over to stop and think about what to do.
I was still debating going to work and then dealing with the doctor after my meeting. I don’t know why that seemed like a reasonable solution. But, I came to my senses, called in sick, and called the eye doctor. I’ve always had bad eyes and I slept in my contacts far too often. So, I was thinking maybe I had scratched my eye or had an infection. Maybe a detached retina? That was scary, but seemed fixable. The woman at the doctor’s office asked about my symptoms. Sitting in my car outside my son’s school, my vision was very blurry, like a film was over everything, and then there was a blurry, brown box, blocking out the center of my vision, but I could see pretty clearly around the edges. They made me an appointment for later that morning.
I went home, because, I don’t know? What else was I going to do? And, I called my mom. Because, even at 40, that’s what you do when you’re sick and you’re scared.
I don’t like going to the eye doctor. I’ve been doing it my whole life, but I hate (HATE) people putting shit in my eyes. It’s a mental torture; not physical. But, the idea of not seeing was scarier. The eye doctor did all the normal, unpleasant poking and shining, plus A LOT more. And, I sat there, calmly, letting her, hoping for answers. She did the letter chart, ya know, with the big E at the top? I could not see anything. I saw a black square. My heart started racing. They showed me those circles with numbers inside to test for colorblindness. Again, I saw nothing. A black square. WTF?!?
The eye doctor looked worried. That made me more worried. She said there was nothing physically wrong with my eye. That it was an inflammation of the optic nerve and my eye was not transmitting light and color to my brain. She called the on-call neurologist and went back and forth talking to him and asking me questions. The neurologist wanted me to go directly to urgent care for a neurological exam, steroids, and an MRI. She said optic neuritis could be caused by different things. She didn’t say what things. My brain said, “brain tumor.” I started to shake and cry.
And then, I got back in my car and drove myself to urgent care, with one eye closed.
3 thoughts on “Day One: I Can’t See”
I cannot imagine your panic. I have CIS since 1 year, have decreased vision response to light on my left eye and am on DMT (Tecfidera) since Aug 2019. I turned 40 this year too like you and now deal with many other MS symptoms. I hope you recover your vision after steroids. I cannot tolerate MRIs but no choice here. Stay strong , find support and keep working as long as you can.
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I recently had such a similar experience with optic neuritis! I also wrote a blog post about it and included it in my book as well. It is certainly VERY scary to feel you are losing your vision, and I am so happy it sounds like both of us are on the track to better days of seeing!
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Remember we are always here to help and can drive you and your Son anywhere you need to go! Do not drive like that again just give us a call.
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