I open my eyes, roll over and cozy up to my partner in his sleeping bag. The sun is already shining brightly through our tent and I slightly lift my head, paying attention to any changes in my body, so I can tell if it is going to be a good day or not. Today, I don’t feel the heaviness and fog that is indicative of my vestibulopathy acting up, so I smile and cuddle back up, surrounded by the forest and the heat of the rising sun. I think back on how incredible my life is and how much has changed since I was first diagnosed.
Flashback to four years earlier. I was 26, living in Brooklyn and had just finished my Masters degree in Psychology. Out of nowhere, I began experiencing random spurts of intense dizziness, indiscriminate tingling and very intense and often confusing vision changes. It was like microdosing on mushrooms, intermittently and uncontrollably. However, as the trip begins, you are told that you have to continue spinning in a chair for an undetermined amount of time. Suffice to say, my mind didn’t work so well while this was happening.
One of the scariest moments was during a neurological assessment when I was asked to draw a clock showing the time. 4:25 p.m. As hard as I tried, I could not draw the clock. Yes, I was a modern girl and my phone was the only watch I owned, but my inability to do this simple task was particularly concerning. It felt like there was a thick cloud blocking my ability to think.
Once my symptoms began, I started bouncing around town looking for answers: seeing neurologists and opthamologists, getting CT scans and MRIs. But it was the ear specialist who finally got to the bottom of things, inducing extreme dizziness, just by puffing some cold air into my ear canals. I was diagnosed with Left Peripheral Vestibulopathy. Some unknown virus had attacked my inner ear and as a result my left vestibular system lost 73% of its functionality. The reason that I was experiencing fogginess was because my brain was putting all of its effort into stabilizing me, leaving less energy to tackle the tasks less essential to survival, such as drawing a clock.
It was a huge bummer to learn that there was no cure for this affliction. It was a dark time as I worked on accepting this new version of myself.
Despite the reassuring explanation for the strange changes in my body, it was a huge bummer to learn that there was no cure for this affliction. It was a dark time as I worked on accepting this new version of myself. I had days where the symptoms were so bad I could barely leave my bed. As a result, I saw myself turn into that flakey friend who would ditch at the last minute, or randomly leave the party without saying bye. I couldn’t drink alcohol because that made my symptoms worse, so I had to find a new way to socialize. My job began to feel like a prison because anything from looking at a screen for too long to feeling pressure or stress from my boss made the brain fog particularly intense.
For a couple years I went into survival mode, doing what I could to appear normal, maintain my friendships, and not mess up at work too severely. The realization came to me slowly that to live a happy, fulfilling life I would have to make some fundamental changes. I remember there were three days in a row where all of my energy was put into maintaining the status quo at work and basic survival (eating and sleeping). The following day, I began longingly staring outside the window, seeing that it was only 12:30pm and imagining dramatically throwing things off my desk and strolling out into a life of freedom.
In March 2019, over two years after my official diagnosis, I quit my job and began taking the steps towards my dream job of becoming a sexuality writer, educator and coach. As a freelancer, I could create my own schedule and eliminate the stress of working for someone else. I stopped hanging out with friends who were not willing to accept the unpredictability of my condition, but also became closer with the friends that took the time to be patient with me.
I don’t know if I would have been courageous enough to do any of these things if I had not been hit with this unfortunate condition.
About a year into my freelancing career, I decided to leave my apartment in Brooklyn and ventured into the wilderness where I can breathe fresh air, exercise everyday and lead a fairly stress free life. I also met my partner. I’ve been on the road with my sexy Russian adventurer for six months, pursuing my freelance career in sexuality and living the best version of my life.
I don’t know if I would have been courageous enough to do any of these things if I had not been hit with this unfortunate condition. It helped me focus my energy on what is most important; my lifelong friends and fam, engaging in transformative sexual education and having the freedom to explore the world, without letting my condition dictate my happiness. Because, what do you do when you feel unwell on the road? You cuddle up, watch Star Trek and wait for it to pass.