Marshwood Middle School’s Cynthia Travers Crosses the Finish Line: Her Story of Recovery
When I got sick in 2016, my world as I knew it came to a sudden stop, or rather it was spinning out of control. Literally. On July 10th while standing in my kitchen heating up soup on the stove, the room started to spin, fast, like an extreme carnival ride. That spinning didn’t stop and after a hospitalization and visits with a variety of doctors and specialists, a diagnosis finally emerged: Vestibular Neuritis, caused by a viral infection. The virus did irreversible damage to my vestibular system which includes parts of the brain and inner ear that process sensory information involved with controlling balance and eye movements.
The symptoms included imbalance, vertigo, a constant spinning sensation, blurred and bouncing vision, loss of peripheral vision, nystagmus (involuntary eye movements), nausea and problems with thinking and memory.
Due to the severity of the damage, I was unable to start school that fall. I had been training for the Pumpkinman Triathlon. It would have been my 13th triathlon overall, my 6th Pumpkinman. But all of those plans immediately disappeared.
I began treatment with a specialist at Mass Eye and Ear in Boston and started vestibular physical therapy and balance retraining exercises. At first, simply walking around the house or making my way to the mailbox was a challenge. Every day felt like being trapped in one of those carnival fun houses, where everything is tilted and rolling. I was constantly misjudging door frames, furniture and stairs which led to bumps, trips and falls on a daily basis. Missing the start of the school year was enormously frustrating and depressing. I couldn’t drive. I couldn’t read. I was always motion sick. I spent most of my days sitting on the couch with my eyes closed. I had so much uncertainty about my recovery and whether or not this would be a permanently disabling condition. Even the doctors did not know to what degree I would regain function.
Recovery was and continues to be a slow process. After missing a semester of school, I started easing back into work and responsibilities. My doctor said I would be living in a “state of compensation” with healthy parts of the brain taking over the function of the damaged parts.
Two years later, I’m living a “new normal” . People often ask, “So are you all better now?” That’s a tough question to answer because I’m living my new version of normal. Certainly my symptoms are less severe and I have learned many tricks to help when they resurface. I had to build-up tolerance to the noises and level of sensory stimulation at places like the grocery store, the mall and of course school. I had to relearn how to drive a car. Anything that involved side to side eye movements, like reading, caused waves of nausea. I’m still working at being able to read for more than 10 minutes at a time. I wasn’t sure that I’d ever ride my bike again, or be able to tolerate running or swimming without getting motion sick.
With help and support, I’ve learned to deal with the inevitable setbacks with patience. I’ll admit there are days where everything I see reminds me of something I used to be able to do – better, quicker or without nausea/motion sickness. I get frustrated by needing “stimulation breaks” and I sympathize with my middle school students who are diagnosed with sensory disorders. I know there are many people out there who fully understand the challenges of living with an invisible disorder. Looking relatively fine on the outside while feeling miserable on the inside, creates tremendous psychological stress which over time can really erode a person’s self esteem. There’s also the fear and embarrassment that comes with cognitive dysfunction, and worrying that others will think I’m hung over, forgetful, disoriented or just “losing it”. But most of all I’ve learned to take things one day at a time, with baby steps, and focus only on the task at hand. For me, this is NOT EASY, but I’m a work in progress.
I’ve learned to celebrate the progress I’ve made and think positively about the future. I’m certainly not the multi-tasker that I used to be, but that’s okay. I need more sleep than I used to because the process of maintaining balance must be done consciously now, but that’s okay. It takes me longer to process and recall information and I repeat myself a lot, but that’s okay. Movie theaters, restaurants and large crowds can be difficult for me, but that’s okay.
I’m still here and that’s what I’m focusing on. Living with a chronic illness has taught me so many valuable lessons. I’ve reset my priorities and given a lot of thought to what’s really important in life. I’m reminded of the old tale of the tortoise and the hare. “Slow and steady wins the race” is my new mantra. Slow, steady and enjoy the view along the way. On September 8, 2018 I crossed the finish line at the Pumpkinman Triathlon. Crossing that finish line means so much more to me today than it ever has before. I don’t give a hoot about how fast I am; only that I got on that bike and rode without crashing into anyone or anything. And that I swam without vomiting. And that I ran without without tripping or falling. Each and every day, I wake up thinking about crossing the next finish line – the one at the end of a class, or a work day, or at bedtime. It’s become a type of coping strategy for me. I put imaginary finish lines, complete with flags and cheering spectators at the end of simple tasks like reading emails, attending meetings, doing household chores and completing workouts. I’m always striving to cross that next finish line and doing so with a smile.
I’m grateful for my ongoing recovery, thankful for family, friends and colleagues who have been so kind, caring and understanding during this healing process. I’m greatly appreciative of the help I’ve received from so many medical professionals – and there were many! It took seeing the hospital MD’s, my primary care doctor, a neurologist, and an ENT before finally getting the referral to see an Otoneurologist who specialized in Vestibular Disorders. It took CT scans and MRI’s of the brain and finally, specialized vestibular testing in Boston before getting that definitive diagnosis. Only then did I find the specialized physical therapy I needed to start “retraining” my brain.
After learning that 35% of adults over age 40 in the US have experienced some form of vestibular problem, I’d like to pay it forward in any small way I can which includes creating awareness about this topic. My goal in sharing my story is to serve as a resource or possibly a source of comfort and understanding for anyone suffering from an “invisible illness” or balance disorder.
A great resource I’ve found is the Vestibular Disorders Association, or www.vestibular.org. They also have a Facebook page VEDA which has led me to a host of webinars, blogs, research articles, videos and other networking opportunities.