I struggle with this trip - is it a superfluous self-indulgent endeavor, or a deserving epic last dance? Do my issues really justify a journey this long? What better things could I be doing with my time and money? What about all the other people who would love to do something similar, but can’t?
Roughly a year ago, I was in comically rough shape. Grounded with vertigo, I was glued to the bed because standing up risked vomiting. There was a constant feeling of someone grabbing my shoulders and pulling me off my feet, and it pulsed in time with my heartbeat. Any noise above a whisper was perceived as explosively loud. My own bodily sounds - jaw moving, vertebrae creaking, footsteps falling - were akin to ear splitting construction equipment. Worst was my own voice, which sounded like I spoke into a microphone, reamplified it with a cranked PA speaker, and played it back right into my face. It felt like my senses were attacking me, totally isolating me from the outside world. It was, and still can be, absolutely maddening.
Superior semi-circular canal dehiscence a brutal condition, and one that I wouldn't wish on my worst enemy. It strips away so many of life’s joys and does so in a manner that’s largely invisible to the outside observer. Explaining the symptoms is a long process (although I’ve got it down to a sales pitch), and there are so many that it always comes across as melodramatic and fabricated. I tend to focus on vertigo because it’s easier to explain, but the auditory issues are just as impactful. At the moment, there are no great options for treatment. A surgery exists to plug the bony hole that creates these symptoms, but it results in a permanent loss in balance function. Success rates (for me at least) are unacceptably low, especially since other middle and inner ear issues compound risk (like in my case, having Otosclerosis as well).
A year ago I made a deal with myself - if I ever recovered to the point where I could enjoy outdoor activities again, I would take some time off work to pursue them. My doctor at the time was pessimistic, saying it was unlikely I would ever hike comfortably or ride a bike again. Not happy with that answer, I saw two other neurootologists, one of whom recommended vestibular physical therapy as a hail Mary. 6 months later, pushed and enabled by the most badass vestibular therapist in the Bay Area (Brittany from Vortex), I was riding a bike again. Game on.
Right now, I’m sitting in bed with my heart beat blasting away in my right ear, as usual. It’s annoying, but it’s the new normal. I’ve self medicated with white noise generating hearing aids, which mask the heartbeats and tonal tinnitus. The white noise also blends with loud internal and external noises, greatly reducing the effects of hyperacusis. With daily PT, my balance has improved to the point where I only feel it when pitching forward, and migraine medicine has further reduced the rough edges. Music, once such a huge part of my life, is approaching enjoyableness again with the audio customizations available in apple’s headphone accommodation features (seriously, thank you so much for this… having some form of music again has been immeasurably helpful for my mental health). My autophony is still quite loud, but the people around me at least understand why I speak softly now. Overall, my quality of life has improved significantly, and if things could stay the way they are now, I’d be happy. However, I’m starting to get symptoms in my opposite ear, which makes the long term balance prognosis significantly worse. My favorite doctor, who mixes a rough bedside manner with useful pragmatism, recommended the following: “If you have anything on your physical activity bucket list, you should go do it now. Assume you will develop SSCD on both sides, and live accordingly.” Well doc, I have a lot of things on my bucket list. Game on, again.
I’m not one to do things half assed. If I’m going to do something, I’m all in - the full ass is engaged. It’s a strategy that’s served me well over the years and I see no reason to stop now. So we’re going big - a year long road trip. Make a huge dent in the physical activity bucket list. Bike, hike, ski, fish, drive, all the things. Get into the backcountry with an off-road capable rig. No home base. Go get it while the gettings good.
So, is this superfluous and self-indulgent? Perhaps. Is it a deserving last dance? Possibly. I’m still not sure where I land on this one… check back with me in a year.
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