As Melody’s adult life was just beginning, her world stopped after being diagnosed with an incredibly rare form of vasculitis (and hearing loss) in her cerebral circulatory system. As a result, Melody’s hearing deteriorated to the point where she felt like just an observer of her own life. Then, after decades of slipping away from the people she loved, cochlear implants sparked the crescendo of her life’s symphony.
“My father was a career Air Force officer, so I was raised on military bases all over the world. I had hearing at birth and was able to enjoy many childhood experiences which shaped my personality and life. I was a ballet dancer from age 5, played the piano and clarinet, and participated in many sports: volleyball, tennis and racquetball. Overall, I would have to say I had what most people would consider an idyllic upbringing while living in many different countries, cities and cultures.
One of the best skills I acquired from moving as often as I did was that I became a very friendly, outgoing, confident and gregarious young child. I carried these traits with me my whole life until as a young woman, I ventured from Anchorage, Alaska to Eugene, Oregon to complete my undergraduate business degree in 1980. During my final year at the University of Oregon in 1981, I met my future husband. We met on Halloween in 1981, got engaged on New Year’s Day 1982 and were married in September of that same year. My first year of marriage was a joyful continuation of my storybook life up to that point. That life, however, was about to take a major and unplanned turn soon after our first anniversary.
Symptoms, tests and diagnoses
In the fall of 1983, I began exhibiting very uncharacteristic and bizarre behavior. Talking gibberish, forgetting to eat, loss of equilibrium and inappropriate verbal and emotional responses led to my husband admitting me to Sacred Heart Hospital in Eugene. After two weeks testing me for everything they could think of, my neurologist believed he had identified my illness from a medical journal, an extremely rare vasculitis (I was only the eighth diagnosed case in the world) that caused microscopic blood clots to form in my cerebral circulatory system, having the effect of 1,000 mini-strokes. I spent the next month in the UCSF Medical Center in San Francisco where they had treated another patient with the same condition the previous year.
The cause of this illness is undetermined to this day and no cure has ever been found. Through trial and error with previous patients, however, they had determined that massive doses of chemotherapy drugs and steroids suppressed the symptoms, so I was put on that regimen. Over the month I spent in UCSF, most of my symptoms subsided. Due to my high steroid treatment as my illness was diagnosed, I was rendered post-menopausal at age 24. Receiving the news that I could not have kids was devastating, but we lived with that reality until moving to Portland in 1994. At that time, my new gynecologist was able to ‘re-start’ my ovaries and I conceived my first daughter, our miracle baby, in 1994. Due to my medical history, I figured that was it for me until four years later when I conceived again (surprise, surprise!) and this time it was twins!! All three girls were full term (actually over-term!) and are now happy and healthy 25 and 30-year-olds.
Unfortunately, another side effect was an irreversible loss of hearing in both ears. That is definitely not what any recent college graduate and newlywed would want to hear, but it was my new reality.
Hearing loss treatments from vasculitis
After losing my hearing at age 24, I wore bilateral hearing aids (many different brands and styles). They helped a little, but they gave me the bare minimum of ‘hearing’ ability and virtually no ability to understand speech. With my frustration building and my illness not yet cured, I continued to live with it and my hearing continued to deteriorate.
One of the downsides (and there were many!) of my hearing loss was that I went from my friendly and confident self to a very timid and scared ‘observer’ in my own life due to my inability to follow and participate in conversations. As anyone with a hearing loss knows all too well, it was a very lonely and solitary existence. The longer I lived with my loss, the more I withdrew from my life and the people who loved me. Luckily, if that is the proper word for my situation, after 35 years from the original diagnosis, I became a candidate for a cochlear implant (CI).
To learn as much as possible about what was involved and what to expect, I met with two women who had cochlear implants to see how being cochlear implant recipients had changed their lives. I am happy to tell you that they convinced me that I could handle having cochlear implants, and that it would make my world so much richer, fuller and complete. In other words, cochlear implants could give me back the life I used to have.
The Cochlear difference
Of the three companies the implanting center uses for their implants, I thought Cochlear offered the best options, had the best customer service reputation and based on the reviews of their product, was far and above the competition, so it was an easy choice for me to make.
I received my cochlear implant in February 2014 and it was life changing! My husband (who had stood steadfast by me through my illness and my withdrawal after my hearing loss), my daughters and my extended family could all truly say that Melody was back after so many years of my self-imposed isolation. There was definitely a learning curve, but my life is so much richer now and worth living again. Among others, I can thank Cochlear for making my new life a reality. Life is wonderful and being part of the hearing world again after 35 years is an almost unbearable joy.”
Are you interested in cochlear implants like Melody was? Learn more here.
