[WARNING: This is an intentional PICTURE-FREE post. Read on; all will be revealed…]
It’s probably not the first time I’ve said this, but…
I have an experiment underway.
It came about after I started having some trouble seeing. Like, literally, trouble seeing, with my eyeballs. About 10 days ago. My vision started getting… weird. All of a sudden.
Now, I’ve had 20/20 vision my entire life. Even though I’ve been clinically diagnosed with Multiple Sclerosis since my mid-20s (which I admit, was a long time ago now) and probably had it much longer than that, I’ve passed every eye exam I’ve ever had with flying colors. I escaped the terrible eyeball genetics of both my parents and I’ve never experienced any of the vision problems common to people with MS.
I’ve been lucky so far — fate has spared me.
But, given that I’ve been in a clinical MS relapse state since January 2016, I wasn’t surprised when my eyes started acting “weird.” I’ve been waiting for this disease to dent my perfect vision record. I spent days insisting I had “chronic eye fatigue” from staring at screens too much. I even admitted I might be getting old enough to need glasses – you know, just that normal middle aged stuff (gross). I made an appointment with an ophthalmologist.
But over the last day or two, my vision is changing again. And I’m pretty darn certain the things I’m seeing (or not seeing) aren’t the fault of my eyes. They’re the fault of my brain.
My left eye is fine now, but my right eye is stuck in a sort of early-onset migraine aura (I’ve also suffered from rare severe hemiplegic migraines since I was a child, and they’ve accompanied every clinical MS relapse I’ve ever experienced; luckily, though, I’ve been medicated on a daily antiepileptic drug to keep them from fully “surfacing” for years now). I can see out of it, but I can’t focus it 100%. It feels sort of cloudy and lazy; it’s sensitive and my head aches just slightly behind it, and all these symptoms intensify in bright light. When I stare at a white wall, I can see the very edge of my field of vision distort in swirls, but when I try to train my eye on that corner and make out what’s behind those swirls… I can’t understand what I’m looking at any more.
Make sense? Probably not.
Bottom line is, I have a whole bunch of active lesions on my brain thanks to MS, and I think at least one of them is causing me to have a migraine that’s been going on for days now. There is some science that supports this.
In a worst case scenario, it will escalate and I’ll devolve into a blind, bedridden, puking, incoherent mess. I’ve been there before: 2005. On a home care dose of IV solumedrol to treat an MS relapse, I had a severe hemiplegic migraine take hold for days. I rolled around in my bed in agony with a towel over my face, throwing up every couple hours, unable to talk, listening to the radio in the background to keep an anchor in reality. When it finally passed, I had to move out of my apartment because I couldn’t stand to set foot in my bedroom any more.
In a best case scenario, it will work it’s way out quietly, which I’m thinking is a possibility. And in the meantime, it’s prompted this life adjustment experiment that I just might continue in perpetuity.
After the first couple work days with wonky eyeballs, you see, I was so excited to get away from flickering office lights and screens that at the end of the day I put my phone away in my bag and rode the bus home in silence. No texting, no music, no earbuds, no looking up political news on the way home (my addiction, I admit).
It was a choice made out of necessity. I just couldn’t BEAR to look at the dang screen.
But something interesting happened…
Making just my regular commute without that protective shield of my phone — a built in excuse to ignore conversation, avoid eye contact, turn off my own thoughts — was kinda transformative. I heard things. I saw things. Things I’d somehow NEVER NOTICED before.
I felt like a bubble had burst around me.
So the next day, I did it again.
Everywhere I went, I was surrounded by people and yet I seemed to be utterly alone, save for little old ladies and homeless men. When they talked, I heard them. I talked back.
No one else heard us.
When a young Latino mother got her stroller caught in the BART escalator, I stopped to help her while hordes of commuters marched through the matrix around us, earbuds in (probably silently admonishing her for taking a stroller up the escalator because they didn’t hear her plaintive apology that the elevator was out of service).
I decided that good eyeballs or bad eyeballs, I HAD to keep doing this. How could I be in charge of community engagement for a tech giant in San Francisco and NOT do this? How could I know the “community” if I refused to hear it, talk to it, look it in the eye?
Yesterday morning, I gave a dollar to a homeless man on a bus and I think he fell in love with me for a moment. When he asked me what my job was, I struggled to describe it in terms that would fit into five blocks.
“I’m a community organizer,” I said.
And I actually believed it, in that moment.
Today was my fifth straight day of what I’m now calling my “mindful commute”. I want to do it forever; I know that’s naive because there will be times I just HAVE to make that phone call, or I HAVE to be on time and use the dang smart bus app. But I think it’s my new default state.
I’m going to document it as best I can from time to time, but I can’t do it with pictures because, you know:
You’re just going to have to trust me.
(turning off screen NOW)
“The present moment is filled with joy and happiness. If you are attentive, you will see it.”
― Hanh Nhat Thich, Peace Is Every Step: The Path of Mindfulness in Everyday Life