I’d like to apologize for my sparse posting lately. I have so many ideas—if only Word Press could read my mind and automatically upload those thoughts? So many things happened these past few months: I got laid off. Someone passed away. Started coaching high school debate. I fell down at TJ Maxx—the fall could have happened even if I didn’t have Myasthenia Gravis (MG) but it’s getting up (both literally and figuratively) that has been hard. And the biggest thing that happened was months of problems with my nose and ears. I have asked myself: What will life be like if I become deaf?
How It All Started
Around April I noticed my nose was congested. Eventually I had a tear in it that only I could see. And I started to hear everything. I mean everything. I would walk through the mall and I could hear every side conversation and every baby crying.
One minute things were normal. Then all of the sudden things would get twenty times louder. The TV would be too loud. I could be having a normal conversation and then suddenly my voice and the other person’s voice would be like megaphones. Every time I drank water, I could feel fluid in my ears.
Moment of Truth
I saw an ENT (ears, nose, and throat) doctor in August. I went through a few hours of tests. I was nervous. I have five illnesses. So most bad news in my life has been delivered to me in a waiting room after taking tests. As my friend Adam jokes, I am a bad test taker. I could live with heightened hearing. Sure it would be annoying but nobody ever died from hearing too much (I think). I would be like Ray Charles minus the talent. But I couldn’t live with the thought of being deaf on top of everything else. I remember an experience at Mayo Clinic in 2008 when I met a nurse with an autoimmune condition who lost her hearing in a matter of two days. Two days! At the ENT clinic, there were deaf patients around me.
During the last test that day, the technician told me to sit in this dark booth with two headsets wrapped around my head. She handed me a clicker. Every time I heard a noise, I was supposed to press a button. At first, it was easy. But over time the noises got fainter. Then came the final exam. The technician told me to repeat every word she said. The first words were, “Clown. Rainbow. Cowboy. Ice Cream.” After a few minutes, I could no longer repeat her words. I could hear sounds but not actual words. Frustrated, I wanted to blurt out random words like, “Trix. Rabbit! Magic! Easter.” But I didn’t. I sat there in silence in the dark knowing I failed. Quick! I thought: How many friends can I talk to before completely losing my hearing? Can I memorize the sound of my nephews’ voices? And what about New Kids—no more NKOTB concerts!
I waited thirty minutes to hear the results. Then the doctor said, “Jessica, it appears your hearing problems are caused by allergies in your nose. Your eustacian tube, which connects your ears and nose, has been damaged…But it’s temporary. You are not going to be deaf.” Immediately, a tremendous weight was lifted. He prescribed medication, which I have been taking for months. I went home that day and cried for three hours. I was overcome with relief—grateful not to lose anything else.
Slowly my nose and ears have been improving. Being chronically ill (whether it’s lupus, fibromyalgia, Sjogren’s, or cancer) it often feels like things can’t possibly get worse. But most of us have something—a sense or ability—that we still have in spite of all we’ve lost. Yesterday at a wedding I was able to dance to a few numbers. Before I got MG, I would have danced all night. Sure I was tired last night but I was grateful that I was able to dance a little with friends and family—especially my charismatic five-year old nephew Mikko. What is one thing you can be grateful for today?
–Your Stylist, Jessica Gimeno