Cerebellar Vestibular Disorder

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Cerebellar Vestibular Disorder
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    Kat Harrison

    Living With Cerebellar Vestibular Disorder

    At the end of March, I turned 30. I’m not one to grandiosely celebrate my birthday (if you are one of those people, I applaud you. Can I take that cool-as-cucunmber confidence for a spin sometime?) I am finding that as I get older, the more I want to retreat and savor the small moments I otherwise take for granted in the daily grind: my yoga practice, an hour of honest-to-goodness uninterrupted reading time, and a freshly corked bottle of wine… glass optional. But this year, my birthday felt different. It felt big and beautiful in ways it hadn’t before. And it wasn’t just because I was entering a new decade (hey 30s, I see you and I like you already) — but because I reached a very significant milestone in my life. I have now been disabled for exactly half of my life. I’ve written before about my journey to getting diagnosed with oscillopsia, a permanent neurological condition I developed when a harrowing bacterial infection in my head met its maker in a much-too-high dosage of intravenous antibiotics. (You can read more about that topsy-turvy adventure here, if you’d like.) This milestone means more than just a pretty fraction. To me, it proves that despite what I went through, I am still here. I have more than merely survived the trenches of deep physical trauma. I have triumphed the heck out of it. So to celebrate, I’m taking a moment to reflect on the top three things I’ve learned since I lost my balance forever. 1. So much of how our body operates is balance based. Did you know your vestibular system allows you to feel the drops in roller coasters? That it gives you spatial awareness underwater? That it stabilizes your vision? I honestly had no idea until I lost those bodily features. But now I live a life where amusement parks have lost their thrill, I can’t swim or bike or skate for the life of me, and it takes me significantly longer to chop vegetables than I’d care to admit. If you don’t wobble when you walk, just take a minute to appreciate how cool that is. Your body has ingrained equilibrium just by existing. Whoa! 2. As a society, we’re not so sure where invisible illness fits in. In fact, I think many would argue that culturally, we’re not so sure where any kind of difference fits in. But I’ve noticed a trend in seemingly looking “normal” on the outside, a trend in which able-bodied people need some kind of “proof” that I have a disability. But I have learned it is my responsibility, not theirs, to provide an education about a life and a perspective that is a little different than their own. It is my job to expand world views and to use those conversations where the dialogue centers around “but you look so normal ” to say, “I am normal. I just swerve in the daylight. Now tell me about you.” We never grow by living in a bubble. In fact, I would say we grow best when the bubble is burst. 3. The human body is a freaking masterpiece. It has the ability to bend, break, contort, and lose its original essence but manages to regenerate anew. If you’re reading this and are in the midst of the aforementioned bending or breaking, I’m thinking of you. I hope your body is doing its thang and is just waiting to wow you. It has taken me 15 years, but I can now unabashedly appreciate how my body has adapted to my disability. It’s developed workarounds and shortcuts, like an anatomical version of Chutes and Ladders. (That being said, take care of yourself. Your body does its best work when it’s loved.) After 15 years, I can honestly say losing my balance forever was the best thing to ever happen to me. It forces me to regularly slow down and makes all of life’s silver linings glow. To be honest, I’m not quite sure of the person I would be without it. It simultaneously informs my identity while teaching me to live in spite of it. I’m proud of how far I’ve come and also recognize how much more I have to do. It took me half my life, but here I am. Exhausted and off-kilter. But buzzing with the good stuff… joy.

    Liz A.
    Liz A. @taboolife
    contributor

    Coping With Vestibular Dysfunction as a Young Person

    Doctor: “You have unilateral vestibular hypofunction at only 40 percent. You’re a fall risk. It must take an incredible amount of energy to stay upright and focused…?” “You have no idea,” I replied, as tears welled in my eyes. Doctor: “We will start you on balance rehabilitation but there is no guarantee it will work and if it does there will always be reoccurring episodes as its not curable.” That was what I was told when I was diagnosed with a inner ear disorder this past March, explaining my sudden onset of extreme balance issues. “Damage to your right inner ear affecting balance/eye movement and we aren’t sure what the cause is. Infection, autoimmune issues and brain injury are among some of the top causes.” This hit me like a ton of bricks and has been the most difficult condition yet to cope with. Your vestibular system controls your balance and you would be amazed at how greatly it affects your vision once it is damaged.  All of a sudden it takes extreme focus on minor tasks such as reading the price on a shelf tag or walking through a store with the lights reflecting off the floors and stimulation of people, bright colors or objects moving by affecting vision while your head is already spinning. This creates terrifying episodes of vertigo or the feeling of blacking out or extreme confusion. Reading books becomes almost impossible as words jump and vision doubles. As I’m typing this I primarily look at the keyboard and briefly glance up to read and proof the many mistakes I make. This is my new normal. Once you lose your balance you wish and pray you would get it back. When I start rehab I walk into a room where I am greeted by my therapist. She kills me with kindness because she understands how difficult this condition is. It’s nice to feel understood but terrifying to know it’s my new normal. I explain my history and she does a brief retest of simple balance tests including the posturography machine as seen in image. She explains I should be at 100 percent but I’m only functioning at 40 percent. As I enter the large rehab room I notice one thing… I’m the only young person in there. I try not to care and I try not to crack jokes. I’m guilty of cracking jokes and making fun of myself when uncomfortable. data-partner-name="Active Minds" data-partner-slug="activeminds" data-partner-id="5555"> RESOURCES FROM ACTIVE MINDS Join the conversation Find your college chapter Learn how to Be a Friend As I’m preforming VOR and standing/walking balance exercises, I quickly realize how severe I am compared to the elderly gentleman in one corner and the middle age woman in another. I close my eyes, walk straight, open my eyes and I’m two feet left of the line I started on. My walking is constantly corrected as if I’m learning to walk again. This was my first session and I didn’t want to go back. I was feeling so alone due to my age and so angry due to the severity. I was in therapy shaking my head slowly left then right – that was my exercise… to shake my head slowly as if saying “no,” and I was symptomatic just like that, from something so small… so simple. I thought, “What did I do to deserve this?” How a vestibular disorder feels… Imagine a fun house mirror in the worst episodes mixed with confusion. My day consists of nausea, visual disturbances, headaches, general dizziness, unsteadiness and blurry, oscillating vision. At times when it’s dark or the sidewalk’s uneven, I fall sideways as if walking on a moving ocean wave. With a VD you can have difficulty concentrating, retaining information and enjoying simple activities. With my severity I consider it a condition where I cannot be fully independent. Overall, vestibular disorders range in severity for individuals. I don’t want to scare you all – my case is moderately severe – but that may not be the case for you. There are days where it’s difficult to cope with this new normal, but day by day I do my exercises and take on the world. How does your vestibular disorder affect you? Do you use medical equipment for support? Can you drive or are you independent? How do you cope? Do friends and family support you? We want to hear your story. Become a Mighty contributor here.

    Kat Harrison

    To the Back-Row Yogi Who Laughed at Me When I Lost My Balance

    Four years ago, I practiced my first 26-posture Bikram Yoga series. At the time, I couldn’t have predicted the impact that it would have on my life – nor was I really open to the possibility of such change. So, after a summer of several Bikram classes (with a few ice cream cones in between), I took a break from the 105 degree and 40 percent humidity room to focus on work. Then, the abomination that was 2016 happened. I had two grueling surgeries, one on each side of my head, plus two recovery periods that forced me to spend an entire calendar year away from any type of exercise or perspiration. Towards the latter half of the year, I also had to leave my job. Thankfully, a bad year is only so long, and 2017 gave me a new lease on a semi-active life. My medical team said “yes” to sweat and I happily ran (er, drove) to the nearest yoga studio. Aside from the consistency and mental/physical challenge that Bikram offers, I am most grateful for the community it fosters. Unlike other types of physical activity that I have done in the past, the Bikram classroom is a pretty representative microcosm of today’s world. There are practicing couples of all ages, an entire rainbow of body shapes and skin colors, and mother-daughter and brother-sister duos. I always find the people surrounding my mat and towel to be encouraging, genuine, and full of that indescribable “good stuff.” If you haven’t been inside a Bikram room, you should know that there are a lot of mirrors. You very quickly learn to move past your insecurities of how your sports bra looks when you are trying to touch your forehead to your knee, or are arched back and on the verge of passing out during a heart-racing camel pose. I typically set up my mat in the middle of the room so I am close enough to use my reflection for spotting during the balance series, but not putting my wobbly self on display in the front row. Because nobody needs that view, OK? By now, as I’m about 40 classes deep into this year, I care very little about what I look like when I practice. I wobble a lot, occasionally topple over, and sometimes take short breaks so the room can stop spinning. So imagine my surprise when I realized I was the source of entertainment for a back-row yogi during my Sunday evening me-time. At first, I thought she was just extra giggly from an eventful Saturday or slap happy from the endorphins, which happens to the best of us. But once I realized that she chuckled every single time I fell out of the posture or teetered off my mat. It broke my spirit a little. Here’s what I wish I could have said to her in that moment: Dear back-row yogi, I spent the majority of my youth being active. I played in several competitive soccer leagues, did local 5Ks on the side (thanks, dad!), and tried, but painfully floundered, to shimmy and prance my way through a myriad of dance classes. But then something happened. I got really sick and lost my vestibular system during my freshman year of high school. When I was diagnosed with oscillopsia, I had just finished my first season on my high school’s inaugural cross-country team and was in the midst of my first school-related soccer season. At the time, I didn’t realize that would be the peak of my athletic summit -since the majority of my abilities was stripped when I had to learn to see life through a bouncing lens. The initial months of learning to live with no balance were trying. It would take me over 10 minutes to climb a single set of stairs and I often found myself writing diagonally or off the page entirely since I wasn’t able to sort through my oscillating world. My vision would sometimes change colors, a lot of times accompanied by a scrambling migraine, especially after exerting myself physically or mentally. I ran into a lot of walls during that time, too. I had a lot of reasons to give up on my life. I could have shape-shifted into a hermit crab and spent my days mulling around on the beach of life that we call self-pity. But I didn’t. I have come such a long way since then. Did you know that I ran cross-country for three additional seasons? My times were awful and someone usually had to catch me at the end of a race, but I kept going. There was even a particularly memorable race where I fell down a freaking hill…Twice! I finished in second-to-last place but it was one of the proudest moments of my life. I felt invincible. Did you also know that the current state of my body, which is riddled with chronic, post-surgical nerve pain and cluster headaches behind my eyes, makes me throw up just from getting out of bed too fast? Our world is full of people, just like me, whose bodies are waging a war against themselves. And quite honestly, it’s exhausting. So when you kept laughing at me, I don’t think you realized what you were laughing at. You weren’t laughing at a small ember who fizzles easily. You were bullying an indestructible tower who does not sway in the wind. Thank you for reminding me of that. Despite what you may think, I truly hope your life is one of ease. I hope your days are happy and your heart is in one piece. Because when the lights are turned off and you feel that goodness slipping, you’ll need some catalogued strength to wade through that ocean. You’ll need an army to fight the good fight. So tomorrow, I hope you do a little better. Try laughing at yourself, instead of others, for a change of pace. Try building your neighbor up instead of tearing them down. I promise it will make your days of dark seem indescribably lighter. See you soon in the hot room,Kat We want to hear your story. Become a Mighty contributor here .

    Kat Harrison

    Living With Oscillopsia After Gentamycin Ototoxicity

    I was diagnosed with oscillopsia – a balance disorder – when I was a freshman in high school. I had just undergone a radical ear/skull surgery, which stemmed from a bacterial infection that started in my ear and quietly spread throughout the right side of my head. For about eight weeks following the surgery, I sported a PICC line (think of it like an at-home, portable IV that I covertly covered up with a tie-dye soccer sock). Every eight hours, my parents would administer antibiotic “bombs” by flushing the line with a syringe of saline and then attaching the squishy ball of medication. Fun fact: those suckers had to be refrigerated! About six weeks into my treatment, I started having odd symptoms: the inability to focus my vision on a single object (which often resulted in me losing things that were right in front of me), awkward face-plants into walls, long treks up a flight of stairs, and a quick tumble down my high school’s bleachers – just to name a few. But due to the severity of the bacterial infection I contracted, it was decided I needed a couple more weeks of antibiotics just to be safe. Little did we know, but by that point it was already too late, and what resulted was a complete wipe-out of my vestibular, or balance system. It’s an incurable, irreversible disability that I’ll have to live with the rest of my life. People often ask me what oscillopsia looks and feels like. It differs from vertigo as I don’t experience a spinning sensation. I like to say that it’s all in the name; like the verb, to oscillate — to move back and forth. In my case, objects jerk, blur and bounce at different rates depending on the day. Traffic, crowds of people, precipitation (especially rain), bright sunlight, and fatigue can all adversely affect how I see on a given day. And there’s very little I can do to counteract the triggers. Picture yourself at a grocery store. Do you see aisles lined with rectangular boxes of cereal and clear jars of cocktail olives? Can you make out the price of an item with a quick jerk of your head? For me, a solo trip to the grocery store is like the fifth level of purgatory. I just see stripes of colors and dancing produce, like the sandstone layers of the Grand Canyon had a few too many martinis last night. I often see several of the same thing – for instance, seven or eight silhouettes of the same person or building — but each one has varying shading that helps me discern the actual target to walk or drive towards. When I was first diagnosed, I had difficulty discerning which object outline was correct, often resulting in me cutting myself when chopping vegetables, or mistaking paths where there were none and running into walls or falling into small creeks. Gentamicin-induced ototoxicity is probably the most common cause of oscillopsia, but it isn’t the sole culprit. There are also differing levels of vestibular loss ranging from mild to severe depending on the individual. I am what medical professionals call a total vestibular wipe-out — AKA good luck kid, you’ll need it because things will never be the same! As it turns out, your inner ear and brain do a mighty job of communicating about where your body is in space. Your vestibular system is responsible for that stomach drop you feel on roller coasters and also what allows your eyes to quickly track words while reading. Over time, my oscillopsia has become more like a sixth sense, and I can usually compensate for it pretty well. But like a lot of medical conditions, my loss of balance needs constant conditioning and challenging. Those close to me know to always walk on my left side (my balance is more dominant on the right, so I tend to run into others more on that side). I set myself up for success by never cutting a bagel freehand (love you so much, $10.99 bagel cutter) and not driving on expressways or interstates since the flow of traffic tends to be toofast for me to keep up with. I have read research and spoken with doctors about how wobblers (there’s a whole community of us out there) tend to reach a new level of normalcy after five years of damage. For some, there are cases where the inner ear hairs can partially regenerate and you can regain parts of your vestibular system. I have not found this to be the case. I have days, weeks, and months even that seem better and less bouncy than some, but overall, I have found my vision to be more compounding as I get older — especially if there are other medical nuisances (like chronic daily migraine) at play. As you can imagine, my entire life imploded when I was diagnosed with oscillopsia. I had to relearn how to walk, write in a straight line, and integrate into a mostly-balanced society. But I also like to think it’s what makes me different. It is what gets me up in the morning (so I can prove those pesky medical journals wrong!) and what has taught me how to place empathy at the core of everything I do. After all, I just move through life a little more wobbly than you. We want to hear your story. Become a Mighty contributor here .

    Marsha Lampert

    Letter to Cerebellar Vestibular Disorder

    Dear cerebellar vestibular disorder, Can you believe it’s been over 30 years now that we’ve been together for better or worse? It’s a weird platonic “marriage” with no option to divorce you. So I have to learn to compromise with you. You have been a great mentor and teacher to me.  You’ve changed my life forever in a multitude of ways, and taught me life lessons that have transformed me. You’ve been a hard teacher. A boot camp drill sergeant, but with a soft heart under the gruff exterior. The lessons have often been agonizingly painful, but just like heat strengthens metal, you have strengthened me. You’ve led me to find ways to teach those life lessons to others both with and without this life-altering disorder. Sometimes you force me to struggle bitterly, but what doesn’t break us makes us stronger, or so the adage goes. One of the hardest things I’ve had to learn is to ask others to be kind, compassionate and patient with me. I’ve learned the scary lessons about putting myself first and saying “no.” You’ve done a great job at making me assertive, outspoken and poised, and you taught me to advocate not just for myself but for others as well. You’ve taught me that winning is more than the book definitions — winning is succeeding over the odds even when you come in last. Winning is succeeding after a number of failures. Winning means starting over after failures and mistakes. You’ve taught me to put my health and well-being first, even when others balk and get annoyed. You’ve taught me that 24/7 energizer bunnies do burn out. The strongest battery needs recharging sometimes. You taught me to appreciate rest, relaxation, naps and meditation. You taught me the true meanings of self-love and acceptance, how to be happy in the moment and to take each day as it comes. You’ve taught me that nothing is accomplished without asserting oneself, no matter how much anxiety is involved. You’ve taught me CV pride and CV poise. To get through tears and fears. And to keep going and not drown in failure or “pity mode.” Marsha. You’ve taught me to ask for help. I’m still learning how not to cry when I get turned down by others, and how to keep seeking help. I’ve learned to keep hope alive. I’ve learned I can’t do it all alone — I need people, despite my social fears. You’ve taught me to forgive myself and not give up on life. You’ve taught me that sometimes it takes a lifetime to learn something. Life is learning and learning is life. You’ve taught me to get back up after falling down, even when my heart is filled with panic. I’ll never give up trying and learning. Thank you. The Mighty is asking its readers the following: If you could write a letter to the disability or disease you (or a loved one) face, what would you say to it? If you’d like to participate, please send a blog post to community@themighty.com. Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.