Today we are fortunate enough to have a guest post by Terry Nagler, a registered nurse. Her husband Stephen was diagnosed with tinnitus in 2000. Below is the story as Terry remembers it.
“You know, my ears are ringing.”
“Really? Both of them?”
“Hmm. Maybe it was the red wine. It always makes me feel stuffy.”
“I still have that buzzing in my head today.”
“Hmm, maybe it was the curry….or the pollen.”
“Yeah, maybe. Hope it’s the pollen. I’ll never give up Thai food!”
“The noise is pretty loud now”
“Hmm, maybe it’s the Relafen. I think tinnitus is a possible side effect of non-steroidals.”
“Yeah, I think I’ll stop it.
Four months and thousands of miles, dollars, and prayers later, my husband, Stephen, and I started to come to grips with the fact that an unwelcome visitor had taken up residence in my husband’s head and in our home. We eliminated the possible offenders: alcohol, caffeine, spices, herbs, medications. We blamed everything from the leaf blower to rock concerts. We sought help and advice from a score of specialists–from internist to acupuncturist. Every physiological and psychological cause was explored.
We had the ultimate good news/bad news diagnosis–tinnitus. It won’t kill you, but at times you just might want to kill yourself. One noted specialist concluded our unsuccessful visit to his clinic with, “You’ve got a beautiful family and a lot to live for. Go home and get on with your life.” Easier said than done.
Over the ensuing months, Stephen suffered a host of psychological and physical symptoms related to this severe intrusive tinnitus including profound depression, a 30-pound weight loss, insomnia, overwhelming nausea, bruxism (teeth grinding), fearfulness, increasing inability to function at work, and an uncertainty that fueled his sense of despair about himself and his future. As spouses, we must appreciate the real physical and psychological toll that tinnitus takes on the those who have it. Tinnitus is invisible–no cast, no limp, no cough, no definitive way to measure its presence or severity. This left my husband with the added burden of continually explaining his head noise, defending his sanity, and justifying his misery.
As a nurse, I understood the impact that tinnitus was having on Stephen. It is much the same with any life-altering illness or injury. However, I found myself becoming impatient, weary, and annoyed with the incessant questions, our redundant conversation, and his constant need for reassurance. At one point I actually thought, “How bad can this really be?” I decided to find out. I placed a portable radio in a purse with a shoulder strap. It was ’tuned’ to white noise–the static between radio stations–at the level of loudness that roughly matched his tinnitus. Then I carried it around with me as I performed several routine household functions. Within thirty minutes I noticed that I was clenching my teeth and feeling irritable. After an hour, I turned the !^%$@ thing off and tended to my full-blown headache.
It’s easy to become a bit blasé about their suffering when they look so normal. But imagine what it would be like if you had to endure a screaming vacuum, siren, or kettle following you from room to room. Could you think creatively, make critical decisions, do anything substantive in an atmosphere of unabated noise? How would the loss of silence and its uncertain return affect your day, your work, your relationships, and your life? The importance of supportive human contact cannot be overemphasized.
Meeting his or her psychological needs may be the greatest challenge for the spouse. I personally focused on three areas that I felt complicated my husband’s recovery and affected our family life.
First, I redirected what I viewed to be faulty or distorted thinking. Cries of “I can’t get out of bed! My ears ring all the time! I’m useless, I can’t do anything!” were met with reality-charged responses like, “I’m changing the sheets, NOW! You seemed to enjoy watching the Braves last night. You can feed the cat and drive carpool.” When I heard, “I don’t think that I’ll ever get better!” I pointed out what he did accomplish while reminding him that there was no finite time line for recovery and that we would continue to work towards resolution.
Second, I sought to combat his inertia by encouraging simple, purposeful tasks that could be achieved within the framework of his shortened attention span. These included short-term community projects as well as household chores. Several times each week I insisted that he join me for a simple outing–a trip to the park or the bookstore–to break his routine and demonstrate that he could ’do something.’
Third, I found it necessary to set some limits with regard to the discussion of tinnitus. While he was consumed with every facet of it, I still needed to attend to many other aspects of our daily life and it was not always convenient to stop midstream to chat or listen–again. Devoting a specific time to talk about tinnitus allowed me to listen without distraction, and it let him know that he had my undivided attention to express the anger, fear, and isolation that he felt.