My eyes are always the first thing people notice, and I never take for granted how rad they are in look and function. They are everything to me – especially in my career. They allow me to see the awe-inspiring beauty of this world, travel independently, take photos, design websites, cook and style food, read, write, learn, create, and connect with humans on a deep level. And I’m not going to lie, they sure do open a whole lot of literal and metaphorical doors.
And while my vision has been absolute shit for as long as I can remember – I’ve worn crazy strong glasses and contacts since elementary school – I’ve never been so aware of how critical even my crappy sight is until last year, when my eyes suddenly started to fail me.
It began when I felt like I had something – a grain of sand – in my eye, which quickly progressed into feeling like that grain was a chili covered pebble, which progressed into endless searing pain and an inability to open that eye, which then led to an inability to open either, which led to unexplained hives under my eyelids, which led to the discovery of super thin ready-to-tear corneas, which led to a diagnosis of chronic extremely dry eyes, which led to several months of eye rehab and steroids and struggle.
But then, eventually, they got better. So I was sent on my way with a simple diagnosis, and I simply chalked it up to shit-that-happens-as-you-get-older. I moved on, fancy eye drops in hand.
And then, a couple months ago I got a bad case of salmonella. It was brutal. I was endlessly dehydrated and sick and weak and malnourished. After a month and with the help of one soon to be bashed Balinese clinic, one frighteningly efficient Thai hospital in the middle of trying to shoot my dream job, and a whole lot of drugs, I kissed it goodbye.
I picked myself right back up and continued on at a warriors pace. I had shit to do. Things to create. Impact to make. A life, a world, to build.
And then, after about a month of regaining my strength and weight, I woke up one day unable to speak because my mouth was so so so dry. Dry like the damn desert. Filled with cotton. And no matter how much I drank and what I did, I couldn’t go 30 seconds without a lozenge or a sip of a drink. I couldn’t hold a conversation without alarming whoever I was with by my white mouth and my increasingly hoarse voice.
And then, a couple weeks ago, I started to get very, very tired. Like to-my-core fatigue. Like I had just run a marathon or pulled 13 all-nighters in a row. Any 5 minute output of energy took at least 2 hours to recover from. It was hard to get out of bed. To move.
And then, my muscles and my major joints began to go. My hips felt so inflamed, my body so stiff, my old injuries feeling so new again, that I was moving like an 80 year old. I climbed the stairs on all fours. I braced myself so I didn’t topple.
And then, I started to feel like I was no longer “there”. Like I was speaking to people and hearing their words, like I was seeing things with my eyes, like I looked like I was sitting in front of them, but in reality I was experiencing scenes as if they were reflected in a funhouse mirror. Or like I was sitting way back at the end of a dark tunnel with noise and sights echoing their way back a mile or two, making their way a couple layers deeper inside my brain than where I normally existed. I felt stoned, but not in the fun way. In the way where you just need it to stop, FAST, because everyone sounds like they’re speaking gibberish and looks like they’re wearing a mask. Like I was seeing a crack in the matrix, and people looked and sounded and seemed, just, different.
You know that scene in Interstellar where Matthew McConaughey is floating in his space suit behind the book case inside multiple dimensions all at once? You know the way the film makes speech and light and sounds and images look? And the way it makes you feel when you’re watching it? Or in Arrival where Amy Adams if floating around in the alien goo at the end? That’s what I felt, and feel, like. About 75% of each my days.
And then, as if that wasn’t enough, my eyes started to go again too. Contacts glued to my eyes. Dry as the desert, dry as my mouth.
And it only continued, and continues, to worsen.
Over the course of a week went to several doctors over and over. I sat in the exam room many a time as my doctor fucking Googled (!) possible diseases in front of me. I had to be the one to tell him to run blood tests and thyroid tests and urine tests and blood sugar tests because he told me it was nothing. As they told me that I seemed fine. But I knew I was absolutely, definitely, without a doubt, NOT fine. So then, after a couple rogue blood sugar results, he diagnosed me with diabetes. And I lived for 24 hours believing I would spend my life living with that. I broke the news to my mom. I bought all the supplements and did all the care research. And then the next day I was told, nevermind, I was fine. What. the. Actual. Fuck. So I continued to scour the internet and crowdsourced. But my blood and physicals and searches continued to turn up nothing. Zero. Zilch. Nada.
Then, one night, as I sat frustrated and exhausted and at a dead end, with a few minutes to spare before a scheduled call with a doctor friend back home, I decided the only thing to do was toss out everything familiar, everything myself and my not great Balinese doctors and my well-meaning community had guessed, and start the search over, fresh. And instead of googling possible known diseases and looking at the symptoms, I flipped it, and put ALL my symptoms I’ve had for the past year that could possibly be related into one really fucking long list into Google.
And this time, I got a hit. And that hit was the ONLY thing that came up in the search results. Nothing else.
And as I read about it, every single thing from my past year clicked into place. All the small seemingly unrelated symptoms I’ve experienced with my health – mind, body, and spirit. All of them were right there in front of me, listed as the exact symptoms of this very Swedish unpronounceable auto-immune disease.
And then, I got on the call with the doc, told him my history and symptoms without sharing my hypothesis, and the ONLY thing he came up with was, well, you guessed it: Sjögren’s. I just had to laugh.
It turns out everything I’m experiencing is textbook, but it’s tough to diagnose because so often the symptoms are seen at different times and never puzzled together by all the disconnected doctors. The average time it takes to diagnose is 10 YEARS, because all the shit happening is often misinterpreted as side effects of medications or attributed to other illnesses or just not taken seriously. It comes in flares, and the when it finally gets bad enough to diagnose it’s often been triggered by an infection (aka my Salmonella), exacerbated by stress and turmoil and sleepless nights like those I’ve carried for an entire half a year, found 9/10 times in women, and the typical age it starts is right smack at mine.
There is no cure. It lives inside you forever. And the road ahead doesn’t look particularly pretty.
I’ve been living inside Sjögrens Facebook Groups and researching scholarly articles from Hopkins and clinical trials and talking to specialists and going down the YouTube rabbit hole. I’ve seen every one of my symptoms reflected in checklists without exception. I dealt with the doomsday possibilities of my teeth falling out and my corneas tearing and lymphoma and organ failure. I saw everything that matters to me slowly being taken away. I’ve cried and felt sorry for myself and cursed the universe and my own body for failing me once again – in a new and spectacularly creative way – all at the exact moment I needed my brain, my energy, my words, and my sight the most and in a place with sub par medical care.
I can’t get the tests I need to confirm the diagnosis while in Bali, but, even without them it’s pretty clear what’s happening. My body is attacking the stuff that creates tears and saliva. It’s attacking my blood and my joints and my brain and my organs. It’s attacking all the stuff that makes me, well, me.
But you know what the craziest thing is? Something that I only think I could be feeling at this point in my life, following my year from hell and the past four months in Bali that were completely focused on learning to surrender, let go, and trust that in time every damn thing that happens eventually shows it’s often incredible reason. That crazy ass thing is:
I feel grateful.
With all of this, even though I would a million times over wish be healthy if given the choice, I’m still finding a way to face it with some sort of silver lining of trust that this will all make sense when it is supposed to, and with some kind of gratitude.
Grateful that at least I have a strong hunch of what’s happening, which means I can start taking action to do something about it. Grateful that I was able to become my own advocate in a system meant to dismiss me (something I had never had the courage to do before in America because I always trusted they knew far more than me and suffered greatly for in the past), and because of that advocacy found my way to answers. Grateful that if I have to face something like this, something that was inevitable to come to light, that I am living in a place at the time when the disease fully attacked me that prioritizes holistic and alternative medicine. And so with a disease that has no cure and with drugs (that only treat the basic symptoms) having so many side effects people often don’t take them, this location is a godsend. Grateful that the exhaustion and pain and brain fog is teaching me to slow down, to lean into stillness and self-care and breathing and sleep, and to accept the help and support of the people who love me who I’m usually too tough to lean on fully. Grateful my mind is miraculously silenced for the first time in my life enough to be able to truly meditate every day, something I have been trying and failing to do for years. Grateful for the reminder to be present, to surrender, and to let go of anything that’s not essential. Grateful to have the push to minimize my days and continue to Marie Kondo my life. To rest.
And most of all, it’s a reminder of something I only truly learned when my dad died, a state of mind that I have been trying to exist within since. The reason I’m sharing this post now instead of a month or a year from now when I know more and can be certain of what is happening. And that’s this:
What “they” say is so true: Life is fucking short, and it can all be gone in an instant. Waiting for “some day” is for cowards and those who play small. There is no some day, there is only now. Because your some day could be taken away without warning, notice, or any consideration of your perfect timeline and best laid plans.
You have one body, one mind, one heart, one soul, one life and just one big fleeting CHANCE to use them all. Don’t wait to take action on your dreams, to do the things you’ve always wanted to do, to create the things you dream of creating, to make an impact in the way only you can, to design a life worth living, to exist in a way most others wouldn’t dare to.
Don’t wait to use your voice to say the words that need to be said, to use your eyes to see all the places and things and beauty this world has to offer, to use your finite energy to explore and experience what sets your soul on fire. Don’t wait to forgive or thank or leave or love someone, to write that text or letter or email, to share your story. Don’t wait to listen to the calling of your deepest desires. Don’t wait to live in alignment with your highest truth. Don’t wait to use your body to feel the sand under your toes on a distant beach or the burn in your muscles as you trek through the forest or the gentle touch of a lover and the wind in your hair as you run wild and all the other simple and grand pleasures this world has to offer.
Don’t fucking wait. Because you could wake up tomorrow and no longer have a voice, or your sight, or the use of your legs, or the ability to think and create and feel a single thing. Your chance and your choice could be gone. Just like that. Tomorrow.
Whether this ends up being Sjögren’s as I believe, or something far worse, or far better, I do know this much is true: don’t fucking wait for it all. I feel it in my creaky bones and my parched lips. I feel it in my wild, brave heart. I feel it when I write this. I feel it when I see your face. I feel it when I think of you.