Losing my eyesight in Italy (a personal case study, part 2)
This is the worst electronic concert I’ve been to. Seriously, who let this guy on stage? Wait…what is Leon Bridges doing here? Hehe. I think I’m funny. Okay, okay focus. Breathe. Breathe.
These were the thoughts that kept me company as I lay in an MRI machine for an hour, the deafening beeps and clangs of the machine battling the soulful indie music the radiologist selected for me. I mean he read me well, but maybe death metal would have been a more harmonious pairing. Whoever comes up with a silent MRI deserves a Nobel Peace Prize and a billion dollars.
33 hours after my exam, I received my results online.
"Approximately 10-15 T2/FLAIR hyperintensities are seen within the periventricular, subcortical and juxtacortical supratentorial white matter. There is a small T1 hypointensity within the lesion just superior to the left lateral ventricle. No infratentorial lesions are identified. Many of these lesions demonstrate enhancement and at least one lesion demonstrates restricted diffusion. Findings are concerning for a demyelinating disorder including multiple sclerosis."
Well, shit.
In my last post, I traced the sources of inflammation that triggered my optic neuritis flareup and shared that it was up to the doctors to understand why my immune system was having this kind of reaction—demyelination—in response. Now we know.
After two appointments with my neuro-ophthalmologist, several eye exams, bloodwork to rule out other auto-immune disorders, and an onset of new symptoms such as muscle spasms, weakness, and numbness, I knew what was coming. My gut said MS before I even got into that MRI. But seeing it written out like that, hearing it from my doctor over the phone, was still a massive blow.
My mother has this analogy for life: she says that life is like a game of backgammon. You cannot control the roll of the dice, but you can control how you play the board. I got a shitty roll, y’all. A really shitty roll. But luckily, I know how to play this game.
I find it weird and miraculous and deeply ironic that over this last year I completely re-oriented my life to support my own personal well-being and the health and wellness of others. I’ve got a running start on this disease because I know how to nourish my mind-body system and keep myself in balance through food, movement, meditation, breathwork, and more. It’s like the universe put me in a training camp for my own personal health Olympics.
Health is a privilege not everyone has. It’s our roll of the dice. But wellness is something we can all strive for, and in the coming years, we will all need to learn how to play this game better.
The continued destruction of our natural world means we're facing growing risk of infectious diseases that will be exacerbated by extreme climates. We don’t know when disease or disorder will hit, but if they do, we’re better off if we have healthy blood sugar levels, a well-functioning digestion, balanced hormones, strong and flexible bodies, and know how to stave off inflammation.
Please don’t wait until you’re facing a chronic disease to honor yourself. Do the things that make you feel happy, healthy, and whole. Eliminate every source of stress you can and change your relationship to the ones you can’t. Shore up your mind, body, and spirit so that they can withstand any surprise or demand.
You only get one ride in this unique expression of consciousness–please don’t waste it.
Over the next few weeks, I'm hoping to meet with a Neurologist/MS Specialist to receive the official diagnosis and get started on medication. I will be sharing my journey along the way, so stay tuned if you’re interested.
Thank you again for all the messages, thoughts, and prayers. They are a source of strength in this weird wild time of my life. With the love and support of family and community, I feel ready to tackle this thing head on.