By Nikki Lewis
Imagine what it might be like if everything around you suddenly felt like it was moving. I don’t mean a little dizzy or lightheaded either. I mean feeling like every step that you take feels wrong. Feeling like your center of gravity is gone and like something else is moving your body in strange ways against your will. Imagine that one day you’re running from one activity to another, and the next day you’ve lost your ability to walk. One afternoon you’re having a dance party, and two days later you feel like you’re stuck on the tilt-a-whirl feeling like your world won’t stay still.
That was what happened to me. Logically, I knew the world hadn’t really started moving but rather my perception of the world had shifted. Earlier this year I spent five days in two different hospitals having test after test ran on me. Blood work, CT scans, MRIs, and a spinal tap revealed no obvious cause for my extreme neurological symptoms. I had lost the ability to control my body and had no control over anything that was happening to me during those five days. Every life-threatening condition I’d feared was being tossed around. In the end they were all ruled out, but I had suffered through the worst, most terrifying experience of my life.
Eventually, as an outpatient, I was diagnosed by an Otoneurologist with vestibular neuritis: a condition that causes inflammation to the nerves in the brain stem. Essentially, there was a disruption in how my brain was sending and receiving signals from my senses. The cause was unknown and still is. Technically, my brain was just fine. It was simply perceiving the world incorrectly. I was set up with a team of therapists for vestibular rehab and began my ongoing road to recovery. Though this experience was nothing short of a nightmare, I somehow came out of it a stronger person and with a new-found perspective on life.
Flipping the Switch & Learning the Hard Way
It is said that true change in people is rare. It usually takes a powerful experience or a history of learning the hard way to bring about true change for the better. You may have a light bulb moment all at once, or you may learn slowly while recovering from a life changing event. My journey has been filled with both. I’ve had times when deep down I knew I needed to change my ways, but it took something drastic to make me fully aware and ready to change. There have also been sudden moments of clarity when something finally sank in as if someone has flipped a switch in my brain. In any case, I was capable of change I never thought possible that lead to learning valuable life lessons.
1. Functional Fitness – I remember holding on to the walls in the tiny hospital bathroom room wondering how on Earth I was going to lower and raise my bottom half to use the toilet. Suddenly, I was smacked with memories of thing I’d often heard in group fitness classes. “Ladies, you’ll thank me when you’re old and can still get on and off the toilet.” And “This will help you when you need to pee in the woods.” All of those squats and dreaded ab exercises were finally paying off as I focused on engaging those muscles to do this most basic of tasks – going pee. I had to chuckle at the fact that the advice was meant for years later in life and not when I was 34. Of course it might be useful when camping too.
2. What Matters Most – This is an overused cliché thing to say, but when you are faced with an uncertain future, it forces you to think about what really is important in your life and what really doesn’t matter. Perspective shifts when you think about all that is good in your life and the possibility that it might all be gone. You reflect on the precious moments you’ve so carelessly looked past because there was something you “had” to do. You remember the times you told your babies you were too busy to stop and play Candyland, and you think of all the time lost to Facebooking rather than engaging in meaningful conversation with your spouse next to you. You find yourself begging God, or some other deity or the cosmic force of the universe to please allow you to return to those who you love and who love you. You remember your goals that you never accomplished and see a picture of all that you still wanted to do with your life. What a waste. You’d kick yourself square in the butt if only your leg would listen and do it.
I had a profound moment when I reflected on these things, and I made a vow to myself that I would be different. Better. I would not lose any more precious moments. I would not give any energy to people and situations that didn’t lift me up. I had a truly eye opening experience, and I decided to change the way I lived my life.
3. The Mental Aspect of Exercise – While the therapists were helpful in restoring some functions and helping me compensate for deficiencies, I found other ways to help myself by researching, depending on my muscles, and by taking a bold step that many people doubted. Some even thought I had lost my mind and expressed concern, but I was determined to get back to one activity that had helped me already in my recovery: exercise.
Ten days after being released from the hospital I went to my regular Zumba class. I had always loved Zumba and rarely missed a class, always striving to be better and determined to become a Zumba Pro. Zumba hot mess might have been the best way to describe me that first night, as I was out of step and messed up more than I got right. The experience left me exhausted but also proud that I had accomplished what I had set out to do. Being with my friends and moving my body in familiar ways made me feel better, not worse like so many would expect. When I had initially started attending Zumba class it helped pull me out of a depression that had held me hostage for far too long, and now this amazing fitness program was helping me regain my balance and my confidence.
This provided me with the inspiration to do more, and even though I struggled with almost every move, I kept attending class and also returned to some strength training courses that didn’t involve an unsteady person using weights. You don’t really want someone holding weights in the air when they might tip over. Getting back to working out, and surrounding myself with supportive people, was key to all of the positive strides I was making. Eventually, I even found myself feeling almost normal again with only minor bits of my impairments remaining.
4. You Always Have a Choice – Choose to be limitless. Of course I experienced bad days and set-backs that ranged from frustrating to soul crushing in severity. I couldn’t understand how I had felt so great one day and would wake up the next forced to concentrate on not falling down. I had, and still do have, days when I struggle to walk correctly and keep my body in balance. My symptoms will likely eventually go away, but there could be some permanent damage to the nerves in the brainstem that can result in some remaining impairments.
There are many outcomes yet to be seen, and even though I hate living in the gray area, I’ve had to learn to accept that life and medicine aren’t always black and white. One thing that is black and white, is the fact that I have the ability to make a choice. I can lay down and cry when I have a day when my body refuses to stay balanced. Or, I can choose to stand on my two feet, that may or may not be moving correctly, and take positive steps. I have moments of weakness and despair, but one rule I have given myself is that I am not allowed to quit or say I can’t. Zumba might look like a disaster, and I might only be able to do half of the exercises in my other classes, but, and this is a big but, I keep trying and never give up.
I’ve learned that I can only limit myself if I allow it. I always have a choice in how I will respond to my vestibular disorder and other problems that life will throw at me. And remember, getting frustrated is normal. What matters is that you choose to pick yourself back up and glue yourself back together. I have moments when I cry and stomp my feet in frustration, and that is okay because after I’m done getting those bad feelings out, I will choose to dry my tears, lace up my sneakers, and let my two feet carry me to the fitness studio floor or where ever else I want to go.