Donna's Personal Story

Someone once told me there's a gift in having tinnitus. "Gift? I was incredulous! Where's the gift in hearing an obnoxiously loud whistling tea kettle in your ears, 24-7????" I was told it might not be presently apparent, yet eventually I would discover its gift if I chose this journey. Tinnitus has taken me on quite a journey! John Lennon sums up my Tinnitus experience very eloquently when he states in his song, "Beautiful Boy", on his last album, "Life is what happens to you while you are busy making other plans." I had no idea what Tinnitus even was, other than a malady I learned about in nursing school that happens to "other people". It came on suddenly one day in April 1996 about 2 months after surgery, a loud "whooshing" noise in both ears, which I had assumed was just part of the recovery period and would disappear like the short term ringing you often hear after attending a rock concert.

Yet, it persisted and soon changed into the tea kettle sound! At first, I was immobilized and didn't want to get out of bed! All I could hear was this hideous noise! It invaded my sleep, waking me up in the middle of the night and keeping me awake the whole night! I had no appetite and didn't want to socialize with friends or even family for that matter! My husband, Gary, was constantly "surfing the net" for any information he could find on Tinnitus, and my journey at that time became a constant flurry of visits to numerous ear, nose and throat doctors and ear specialists in vain attempts to try to discover the source of the noise. Although well meaning, they were far from helpful!!! The very first ENT doctor told me I had brain damage and to "learn to live with it!" Can you imagine learning to live with a tea kettle in your ears, 24-7???? The problem is that this doctor didn't give me instructions on the HOW part! I even asked an anesthesiologist if there was a connection between the anesthesia and Tinnitus and came up empty on that end as well! After going through a barrage of blood tests, MRI's, CAT scans, spinal taps, hearing tests, acupuncture, chiropractic treatments, taking chinese and numerous other herbs, and not finding much relief, I felt utterly disappointed and even considered suicide. My husband was less enthusiastic about this idea! It was mostly through his love, encouragement and endless support that I was able to eventually get back in the "race" and put one foot in front of the other! I made a decision at that point that living was more important to me and that I would not let Tinnitus control my life!

I have always been a person who loves being outdoors and involved in outdoor sports such as running, hiking, climbing, cross country skiing, snowshoeing, and found that engaging in these activities would take my mind off any problems that were plaguing me at the time. Yet, because of the constant distraction from Tinnitus, I didn't have the energy to pursue the activities I loved most. It was hard just to try and survive from day to day! Then one day, I was reading some literature that my husband found from the American Tinnitus Association in Portland, OR about the research they were conducting on Tinnitus. I also saw an advertisement about a miraculous device that is inserted in the ears, similar to a hearing aid, and read that it was used as a successful treatment in providing substantial relief to many people with Tinnitus. This treatment is called TINNITUS RETRAINING THERAPY and involves wearing white noise devices in your ears for anywhere from a few months to two years. Devices worn for this period of time enable the brain to be "retrained" to accomodate to the sound of Tinnitus. At that point, there were no other treaments even remotely promising, and I promptly ordered the devices and started the treatment.

After wearing the TRT devices for a few months, I began to notice the Tinnitus wasn't as noticeable or prominent as previously. I continued wearing the devices for 8 to 10 hours each day for about 2 years, and gradually resumed my beloved sports, rejoining the "human race!" The longer I wore the devices, the less I seemed to notice the noise.

I eventually became a member of ATA and received more than I had bargained for in the form of telephone support from ATA staff, first hand knowledge about Tinnitus, and especially in sustaining friendships made from having this problem! I wanted to help others with Tinnitus in some way, and inform them about treatment options available, sharing with them all information I had painstakingly assembled over years of having this challenging and life changing health problem! Knowing how scarce any information and treatment was when I first got the problem, I started and co-lead a Tinnitus support group in Denver for a number of years, and provided phone support to callers all across the country. I still feel compelled to try to find ways to come up with a cure for this problem, dreamer that I am! In the summer of 2000, I attempted to climb Mt. Rainier in Washington to raise funds for ATA and public awareness of Tinnitus. Despite running out of gas at around 12,000 ft., I managed to raise $85,000.00 for Tinnitus research. Not bad for a "flatlander" (being born and raised in Chicago, the land of NO mountains!) This July, I plan to give it another go and this time make the summit and raise more funds for ATA. Wish me luck! To this day, I still struggle with Tinnitus, yet what was once blaring in my ears continuously, now waxes and wanes into "good" days, when the noise is barely noticeable, and "not so good" days, when it is barely tolerable! Despite all odds, I have learned how to cope with it by any number of ways such as taking very long showers, (if left to my own devices, I'd never come out!), creating a place I can go to on the "time out" days when I go to my yoga room and distract myself by listening to music and waterfalls, and of course, still doing the things I love such as running, hiking, skiing, snowshoeing and doing crazy things like climbing mountains, and approaching these activities with renewed fervor and appreciation! These are the gifts that I would never have known had life not "happened".