A challenging childhood
Treated for a rare childhood cancer in 1984, I was a guinea pig in the cancer ward during a time when childhood cancer survival rates were low. The goal was to eradicate the cancer to save my life. Little was known about the consequences of such aggressive treatment. Sometimes the long-term side effects block the sunshine of the fact that I was originally given only six months to live. The worst of my complications is the progressive sensorineural hearing loss caused by Cisplatin, the very drug that partly saved my life.
Growing up without normal hearing greatly affected my ability to understand conversations, use the telephone, make friends, and participate in daily social life. I lost out in school as many accommodations didn’t exist, yet was given private lessons on lip reading, a coping skill that has lasted a lifetime. In fifth grade, my science teacher told the entire class about my hearing loss in my absence and without my permission. Reflecting on this, it seems he thought my peers would be the ones to help me through an entire curriculum based on a video about a ship. There were no captions, movie script or other help. Of course, I didn’t know how to advocate for my needs, nor about loop systems, specialized phones, personal amplifiers, or higher tech hearing aids as would have helped.
Finding Support
Peer support has been a tremendous help. I attended weekend retreats with other childhood cancer survivors, two of whom are my best friends today. There is a magical bond and feeling of acceptance and security when you realize you are not alone, and that there are others on your boat, as well as captains to help navigate the high seas.
I didn’t seek out that support for hearing loss until after college. When I finally joined the Boston chapter of the Hearing Loss Association of America (HLAA), I knew that this education and peer support group was the medicine to ease the burden of living with hearing loss. It took decades to advocate for myself and label my hearing loss as a disability. Now it’s a blessing to know what to ask for from helpful friends, to avoid breaking down from fatigue and stress. When I stated and accepted that I was disabled by hearing loss, it also brought perks, such as discounted public transportation and, if needed, priority boarding on airplanes (thanks to fellow HLAA Convention goers for teaching me)!
The Progression
Over time I was missing more words and woke up one morning with no hearing in my right ear. I tried steroidal injection, but alas my hearing was gone. Luckily, again thanks to HLAA meetings and conventions, I knew what could come next. Despite all of my pride in my “better than that” hearing, and denial that I would ever need a cochlear implant (CI), my time had come.
My audiologist recommended a CI and I was so grateful to know how CIs helped many peers with profound hearing loss. Two great resources, a friend with a CI and an audiologist, led me to the right people and brand and I was on my way to getting an implant. While nerve-wracked from picking a brand, the entire CI community welcomed me. Fortunately, the Hearing Rehab Foundation helped me learn to hear again, as the first sounds heard with my implant were not words, only noise and “whah, whah, whah”, like a Peanuts cartoon.
Continuing Education
Soon after, I visited my brother and let him feel the keyhole shape embedded in my head. He was happy for me, yet naively asked “so your hearing loss is fixed now?” Oh, how I wished he’d been right! Alas, it must be explained that CIs and hearing aids, technology, lip reading, and other coping methods only help but cannot fix hearing loss. It is true that after training and five years with CIs, my hearing and speech have improved, but I still struggle in many circumstances. I’m thankful when people understand that my hearing is not fixed by devices, are willing to face me, slow down, repeat or reword, or write down words when I can’t understand. I hope I have done my fair share of educating and advocating, and held back from blaming those who need more.
I also have delayed processing, so the time for sound to travel to my brain and to decipher the sound into a word is slooooow. That delay added to a captioner typing for me what was said on the phone was slow and most people hang up or figure I am ignoring them; two calls for the price of one, c’est la vie. I am grateful for patience.
The Bright Side
To make lemonade tolerable, one must add a little sweetener. For me, that is humor.
Called into jury duty, hearing loss is no excuse, but “accommodations” were an old amplifier with headphones. Long story short, I got myself into a bit of trouble emailing the person in charge of accessibility. The judge summoned me the next morning, and reassured me that not everybody is meant to serve on a jury. He asked about stepping down. Yet the judge had already pleaded with me to serve, moved me to the seat next to the witness stand, and told me to raise my hand if I can’t hear. Now all the lawyers wanted to know if I was indeed able to hear enough to serve? I answered: “I cannot state that I would hear everything, nor would I promise to understand everything heard”. Then I asked the lawyers if they knew the song, ‘Smooth Operator’, and after they nodded, I shared “to my ears, the song is ‘Ooh Lasparella.’” I stayed on- a most trying experience, but at least I got a good laugh.
Wish Granted
Years ago I visited a temple in Japan. The floors in this temple made the sound of nightingales when stepped on, a sly security system for the Emperor inside. For years I have regretted not hearing that sound. So now, one of the best things about having a cochlear implant is that I finally hear the birds! When I hear the chirping, I count and echo back the same number of “chee-chees”, then wait for the next call and repeat all over again. I reminisce to the mourning doves cooing in my window as a child and smile. When the sounds shift to the screeching and cawing of the crow, I simply remove the magnet from my head and enjoy the hush. I have the power to hear the delicate sounds of nature, with the freedom to silence the undesired: be careful or I will mute you too!
Liz Olson is a social worker with compassion to empower people to find solutions for life’s challenges. She enjoys crafting greeting cards, completing Kenken and jigsaw puzzles, and creating laughter. She can be reached at lizo87@aol.com.