Faith became a light shining in the darkness during my SMA journey
A challenging test holds a life lesson for when times are dire
In 2019, I had my first videonystagmography (VNG) test. A VNG test uses ski-like goggles to test a person’s involuntary eye movements when moved into certain positions. Inside the goggles, a camera tracks these movements while the doctor assesses the problem on a computer screen. Though vertigo is intentionally induced, and I often feel woozy afterward, many VNG tests in my past have taught me a profound lesson in faith and darkness.
The first time the doctor placed the goggles on my eyes, my head tipped over. They were deceivingly heavy, and my weakened neck muscles weren’t prepared to hold my head up with the added weight. Despite the heavy load on my neck and the extra muscle it took to hold my head up, the test was necessary. Following a concussion years prior, vertigo became a lingering symptom and called for a solution. However, before I could do the test, a greater challenge came first.
For the test to be successful, I had to be skillfully and swiftly maneuvered into awkward positions. For a nondisabled person, tasks like rolling over to one side, tipping backward, and holding the position for 30 seconds are simple. But for someone like me who’s disabled and dependent on others for my physical needs, this part of the test was far from easy.
More often than not, it was my poor mother’s job to hold me in these positions. Fortunately, I was small and easy to handle. Unfortunately, no matter how small I was, flipping me upside down to induce vertigo was not an easy job. But with a few extra bodies to help us out, we made it work.
Being vulnerable
During my first test, several people grabbed on to me as I hung upside down. All I could think was, “Oh, my God, if one person’s hands slip right now, I’m toast.”
With the goggles tightly clinging to my face, my only job during this time — besides panicking — was to keep my eyes open and still while patiently waiting in darkness. This end of the bargain was easy. Being in a vulnerable position, unable to see, and having no choice but to put my faith in those around me was the real challenge.
The more tests I had, the more familiar the position I was in became. OK, maybe I didn’t hang upside down in my free time. But figuratively speaking, I had been in that dark place before, where life had become so dire that I had no other choice but to have faith in the things I could not see yet.
When living with SMA, having faith is essential to my survival. There have been many dire moments in my life — hospitalizations, disease progression, and the like — where darkness has become a familiar feeling. It felt as if there were no path out. But in my deepest and darkest hours, faith became my guiding light.
Sometimes, faith is the only choice I have to see a situation through, especially when it involves people tipping me upside down and holding on to me for dear life. That’s what I love about having faith, though. It keeps me holding on during the unknown. It shines a light in my darkness.
Note: SMA News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of SMA News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to spinal muscular atrophy.
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