The following Tinnitus Story (ringing in ears) appeared in the the June 2006 Edition of Tinnitus Today published by the American Tinnitus Association.
“My Choice” by Paul Tobey – Copyright Paul Tobey May 2006
I have devoted my life to the study of sound. I am not a physicist, a doctor, a scientist, nor an audiologist. I am a master of sound, an accomplished concert pianist. Since the age of eight, I’ve studied the relationship between the body and the vibration of musical notes. What I couldn’t have known is that one day I would deeply yearn for the one note I would never hear again – the note of “no sound.”
Perhaps the tinnitus was caused by all of those over-the-counter decongestants I was taking for my flu, or maybe it was the stress of being at the pinnacle of my performing career, or maybe it was the news that my wife, Nancy, was giving up a good paying job, or a combination thereof. Whatever it was, one night I dreamt I was sitting on an airport tarmac between two jet engines. When I woke up, I realized this noise wasn’t just a dream. It was in my head! I rolled off the bed onto the floor in a fetal position with hands over my ears.
Over the next few weeks, I begged doctors to help me. My journey of hope began with visits to family doctors, referrals, and audiologists. Weeks turned into years with more research leading my wife and me to more doctors, shamans, and dozens of healers around the world. We live in Canada, but traveled to as far away as Japan.
What started as my journey of hope turned into a dark and painful life with bouts of deep depression. The tinnitus sabotaged my music, my marriage, and sometimes my very desire to live. The worst part was that because my injury was not visible to the world, people had no appreciation or ability to feel compassion for my suffering. I felt very alone. It suddenly occurred to me that maybe Van Gogh cut off his ear to make his suffering visible to the world – not because he thought it would stop his tinnitus.
Believing no one in the world could understand my physical pain, or my emotional burden, I turned to the Internet only to find chat groups with more stories of chronic depression and misery. It became clear I wasn’t alone in my suffering, but it didn’t make me feel better about my situation. That was when my wife became the most afraid, and ordered me to stay out of the virtual company of these sufferers, and instead to stay abreast of research through the American Tinnitus Association.
I was so busy fighting the tinnitus and struggling to make it through the day, I barely noticed my wife’s struggle with my tinnitus too. I had no energy for her personal fight to keep me alive, or to fight the Canadian Hearing Association when they told me they couldn’t measure the volume of the noise I hear (higher than their instruments could measure). I had no strength to fight the audiologist who sold me “white noise/masking hearing aids” that, despite my discipline, hope, and full cooperation, didn’t work for me. I didn’t have the energy to fight other health professionals who tried to help but whose good ideas didn’t work. They got my money; I kept the tinnitus.
My last hope, or so I thought, was an audiologist and medical doctor team who specialized in treating musician’s hearing problems. Because I’m self employed, I have no drug insurance plan. Feeling for my situation, they gave me dozen packets of antidepressants. Feeling hopeful that maybe they would work, I poured the boxes out on the kitchen table. That’s when I noticed my wife’s anger and when she gave me the ultimatum: “Paul, either you choose to live your life on antidepressants, or you choose to face your disability and conquer it. If you choose to conquer it, you will live a happy life with me and Adrian