I categorize my condition as a challenge, not a condition, illness or disease. A challenge can be overcome. I can rise to a challenge. I also don’t define myself by my challenge. I don’t introduce myself to someone and say “Hi, I’m Sara. I’m 41. Have 3 kids, 4 dogs, 4 cats. I have bilateral loss of the vestibulae.” In fact, if you met me face to face, you wouldn’t even know that I had this condition, unless you looked carefully at how I walked, maybe..maybe then you would see it…the slight change to my gait (how I walk) and maybe I might walk in a crooked line rather than straight. You’d have to really pay attention though and in today’s world, many don’t, they just assume. They assume, based on their perceptions, that I’m perfectly normal.
I first noticed the differences when I was a Senior in high school. Someone would slam a cymbal or blow a trumpet loud, in marching band, by my ear and I would lose balance for a hot moment. It didn’t always happen but it was there. It continued into my freshman year with loud noises. I would notice is more in band than anywhere else. Then, one day, I stood up out of bed and fell right back into it. Odd, but I just figured I was just tired. Then, I had trouble walking a straight line. I would have to stop, correct my trajectory, and keep walking. I also had to change my gait. I went from a narrow stance to a wider stance. It just felt more stable.
This continued for 10 years. The doctors tested me for MS and other things but were often left baffled as to what it was. I was told I had Meniere’s syndrome and then have that reversed. I was hospitalized twice, once because of extreme fatigue and another because my eyes were bouncing so much that I couldn’t sit up much less walk without being sick.
Finally, I was referred to UCLA neurology department and within 5 minutes of meeting the doctor, she said “I know what you have. I sit on a special panel for this. Come with me.” 10 years and I had a diagnosis. Bilateral Loss of the Vestibulae otherwise known as Bilateral Vestibular Hypofunction (BVH). To say this was a relief would be an understatement. Basically, it’s a fancy diagnosis saying that my inner ears, specifically the semi-circular canals, are really fucked up.
People with my diagnosis usually have trouble with balance, especially on uneven surfaces. Balance is a combination of ears, sight, being able to determine the ground your on with your feet and how your brain interprets all of this. Take away light and it becomes a game of can I get from point A to point B. Give me something like sand, that shifts under my feet, and it’s amusing to watch me try to walk in it. My body can even mistake a tree leaning in the wind for me just not being upright. Yet, I am. Put me in a crowded, indoor environment, like the Louvre, after a long over ocean flight where I did not sleep and my body gets so confused by all the motion that a simple touch of a person passing can cause me to fall.
The eye bouncing is called oscillopsia and it’s common to be part of vestibular conditions. Basically, it means that I can’t track objects very well and my eyes move fast up and down rather than the normal side to side that someone might experience after being on a ride that spins. Because of this, I feel like a bobble head doll on occasion. This means, when I move, so do other things. Up and down. Up and down. I just want to grab my head and hold it still, but since that doesn’t help, I just change where I look. I look down when I walk instead of straight in front of me if I notice things bouncing when I walk.
I have new experiences all the time with old familiar things like trampolines. I love them. So very much. Keeping my balance on it is harder than I remember it was as a kid. Gang planks to planes also become a game of bumper Sara. You can’t feel them move. I can and it confuses my balance system. Disco balls, small boats, crowded indoor areas, not resting well and many more things I have yet to discover can trigger an “episode.” There’s no cure to what I have but I have found some things that help like vestibular therapy, working on my core, and compensation strategies in how I walk.
I’m not going to lie. It got dark. Before I had a diagnosis, I was so bad that I couldn’t crawl, much less walk. I couldn’t drive. I needed a walker. I had to be hospitalized because I didn’t know what the heck was going on, only that this sucked. I went into a dark hole. I was convinced that I couldn’t live this way. I felt like I couldn’t take care of the one child I had, much less be trusted with a future infant when I could fall at any moment. I took off my wedding ring and told my husband he might as well divorce me because I wasn’t good for anything. He argued with me and I thought that I made my point by pushing my laptop off the breakfast bar onto the floor. I told him life wasn’t worth living. He got so scared that he called the paramedics. I realized how low I had let myself become. I had been so intent on focusing on what I couldn’t control and forgot about what I could still do. I forgot that there were a lot of positives in my life. I started changing my tune. Slowly. Ever so slowly.
Looking back on that dark time, I know exactly why I got so bad. The moment I felt the “episode” start, all I thought about was how bad they sucked and how I had trouble walking and how I couldn’t get my eyes to cooperate. I became a broken record of what was wrong with me. The worse I got, the more I focused on it. No wonder it got so bad. Your energy flows where your focus goes. That focus drained me. It left me feeling debilitated and weak. It allowed fear to rule. It allowed fear to paralyze me. Fear is a powerful force. There is no other force greater in the world, except love.
I have never let myself get that bad again. I made shifts in my life, sometimes as small as 1mm, that changes how I do things. I learned to love my condition. I love it. I embrace it. That love replaces the fear and allows me to move forward. Another huge shift became focusing on what I can control. There’s so much in my life, anybody’s life really, that can’t be controlled. In fact, I often found that the more I tried to control it, the more out of control it became. This often left me feeling frustrated, angry and bitter.
Now I release what I can’t control and focus on the things that I can control. I CAN control my thoughts. I CAN go to the gym and work on my core strength. I CAN meditate. I CAN write my goals out. I CAN write in a positivity/gratitude journal. For that, I brain dump, every day, things I’m grateful for, both big and small. I mean today, I’m grateful that I am writing this. More importantly, I’m super grateful my dogs aren’t barking and distracting me. Gratitude is the BIGGEST thing you can do to change a mindset, which is what I desperately needed. It allows me to focus on things that I am thankful for rather than things that, back then, I would allow to drive me batty. I choose to flow my energy into gratitude and what I can control. Every day.
My “episodes” are few and far between. Mostly it’s just exhaustion. I think one of the biggest changes I’ve made is that I’ve learned to listen to my body. If I’m so exhausted that I can’t walk straight and need to sleep, I do that. Because the universe is telling me..dude..slow down. I embrace it. Now, I am usually only resting for a day, maybe two, but if I need a week, I take it. I shut off work. I shut off social media. I binge watch netflix. I eat junk food. I read books. I sleep. I just embrace it because I know it will pass and this is what I need right now. It’s a form of self-care.
Back then, I let my challenge define who I was. I let it become my problem, my condition, and my illness. Now, it’s simply a challenge. You see, challenges can be overcome. I can rise to a challenge. It’s a simple word shift, but it’s a complete mindset change. I don’t see myself as handicapped, while I did back then. I don’t even mark it on forms when I asked. I will put it down, if asked, but it’s almost as an afterthought. Because it never stops what I do in life. I hike. I travel. I explore. I follow my dreams. I just happen to live with a balance challenge every once in a while.
This challenge is not a negative thing. It’s a positive thing. It makes me unique. It makes me realize I can overcome anything. It makes me strong. It makes me grateful for who I am. It makes me…me.
More information about my challenge can be found here: https://vestibular.org/BVH