Gael’s Note: My guest blogger this week is my friend Wanda Gower-James from Gisborne, New Zealand. I met Wanda in 2007 when I was speaking to the New Zealand Hearing Association in Christchurch. A year later she received a cochlear implant, and she shares this beautiful before and after story of her journey. Te Ara Ora is Maori for ‘the path to wellness’; this blog is a little longer than usual, but you will want to read every word.
Part 1 – Written in 2007
Before hearing loss, life was so good. I was healthy, with a loving family, a wide group of friends and a kindergarten teaching job I enjoyed. I had just returned to work after 10 years at home with our babies who were now moving into the teenage years.
In January 1999 I was fitted with bilateral hearing aids. I had been diagnosed with an unexplained hearing loss (no known cause) – moderate in one ear and moderate to severe in the other. By September 2006, I required the most powerful hearing aids available, and I’m now severely deaf in both ears.
I changed from a confident, short-haired and socially ‘out there’ woman to one who was reclusive, isolated, and unsure, with hair covering my failing ears. I said no to anything that required listening, which is saying no to life. For six years I was in total denial about the need to address my hearing loss, not knowing whom to turn to or what to do. My friends and family stood on the sidelines, in despair, not knowing how to help. I hit rock bottom, hiding under a blanket and crying away six years of my life.
A coffee in a shady quiet café with a friend was the catalyst for change.
In April 2006 I went to see a hearing therapist. Where did all these tears come from? She explained that it was a loss and before I could deal with remedies, I had to deal with the loss. She helped me with the practical side of a hearing disability, but I needed to see a counselor to help deal with the grief. This realisation was like the beginning of a new day, and I haven’t looked back since.
The first part of dealing with a hearing loss is admitting you have a loss. Now, with the support of my counselor, hearing therapist, Audiologist, New Zealand Hearing Association, family, friends, work colleagues, technology and others with hearing loss, I am striving to live my life to the fullest.
Solutions don’t just come – you must take responsibility for finding them. You have to be proactive in seeking advice, trying new technologies, developing support networks, and educating your whānau (extended family), friends and work colleagues.
Yes, I miss hearing the rain, listening to music, and the spontaneity of ringing a friend to go for coffee. I miss easy chatter and pillow talk in the dark. I can’t hear my footsteps, or the warmth of my 18-year-old daughter’s voice on the phone from overseas, the roll and crash of our beloved sea, the call of the birds, twigs snapping under foot, and the sounds of my home.
It is hard to explain the terrible isolation, the crushing loneliness and the despair of not having the warmth and ease of communicating with fellow human beings. It’s hard to understand how someone’s spirit can be crushed by humiliation and become reclusive because so many personal relationships are ruined by misunderstanding.
I have a new awareness and unconditional acceptance of other people’s disabilities. New relationships have developed and I have explored how deep friendships really are and what family love means. Every day I’m challenged to find new ways to do things, and the people in my life are making an effort to change their routine in order to keep our relationships. My teaching team has embraced this reality, showing sensitivity and innovativeness in supporting me as a fully effective member of our team.
Where am I going? I don’t know, because I don’t know how far my loss will progress. The spectre of total deafness lurks, but it doesn’t hold the fear it once did because I’ve learned that being deaf won’t make me a lesser person. With the support of good people and the courage to face and name your problems you can overcome them.
Solutions take time, so be kind to yourself and share the journey, te ara ora.
Part 2 – Written in August 20, 2008, her birthday, one week post-switch on
My cochlear implant lives in a treasure box covered in stars that I have touched every day. This is only when my world is going to sleep and I have found out all that I need to know for the day.
In the morning Excitement visits me as he understands the language of sound….he works at many jobs bringing the song of the birds, the flight of a bumblebee, the tread of my footsteps, the voices of my loved ones, the roll of the waves, the scattering of pebbles, the creaking of the washing basket, the gentle shushing of the rain……he always moves around and sometimes, when he dances with Trust, there is lightning in the air.
Pleasure is wild and sweet. I used to sleep early and do all my jobs to avoid her. Pleasure carries a purple bowl that is full of speech and sound. When it overflows my children sing and dance. My husband wonders at the beauty of her….I wonder why I never saw her before.
I wore Loneliness around me like a grey blanket and he nearly convinced me that relationships are so fragile they may not survive. His best friend is Despair, and together they broke my heart, because there is no arguing with them. They even managed to stop me from listening to music.
But Courage looked me straight in the eye and transformed my fear into Determination. When I was with Courage, I was not afraid to weep or pray, even when I was not sure who I was praying to. I walked from Loneliness to Solitude because Courage is also very kind and he helped to heal my heart.
On my birthday I had lots of visitors. I was living on a hill surrounded by beautiful roses. Clarity was my first guest. He told me to listen to the same thing every day until it started to speak to me. I heard Trust every day after that; she was gracious, subtle and simple. I found out her mother is Love.
Confidence knocked on the door with Doubt but I told Doubt I had too many house guests so he left. Confidence only has one limitation and that’s his own.
I now wrap myself around with the Beauty of Sound – she will dance with anyone who is brave enough to ask her. She is especially fond of people and when they talk she sends love letters to the stars.
Harmony is one of my best friends now. He gives me space to be my whole self and when I go to work, the sounds around him are lyrical.
I have had a great desire to walk with Joy and at times I wondered if the effort to reach her was worth it. The distance seemed overwhelming – she was too spontaneous and faint, I could never quite hear her. But Joy has chosen to walk with me; she is now my daughter, running barefoot just to hear the wind and rustle of the grass underfoot. She plays the flute with her sisters and loves all kinds of sounds. Her laughter fills the sky…
Wow! I never would have been able to describe loosing my hearing like this! You have an amazing ability to describe it the way it really is for all who have loss their hearing for one reason or another. Then the miracle of our Cochlear Implants that allows the ability to hear the sounds that were taken from us! Thank you for expressing the whole picture!
Wow Wanda, another gift your journey has given you, is to be a writer and touch the world we know with understanding. These words are truly beautiful. Arohanui Lynsay
Hi Wanda, they are all so right you are able to express your feelings & put them down on paper, a gift in it self. The wonder of hearing all those sounds which have come flooding back is truly amazing, & one has to thank all those involved in making this possible, one can`t say enough thankyous to them.
Will catch up soon & compare progress.
tony
Wanda you truely have a gift of the written word and our world needs to HEAR your voice, a gift to be treasured always. I was so moved again that those tears flowed freely. Arohanui Mandy
A truly inspiring and moving journey. Thank you for sharing such an intimate part of your life. I too, was moved to tears.
The cochlear implant programme is, to quote one of the specialists, “a no brainer”. However the courage of the recipients is truly inspiring. It goes without saying Wanda, that you are an inspiration. Meg
Thank you so much for sharing your beautiful and uplifting story. Undiagnosed and untreated Lyme disease has cost me my hearing in one ear among many other related problems. Sounds are very distorted now and I must listen to buzzing in my ears every day that accompanies and often hides the beautiful sounds of rain drops or birds singing. I am so touched by your writing and your honesty. The loneliness of hearing loss is so hard to describe to others. You are an inspiration and I am going to save your story for continued hope!
Wanda, your words are so moving, the tears are freely flowing, You have such an amazing talent for making your journey so real…. thankyou for sharing your journey and much love to you and yours….
Thankyou so much for all these wonderful comments
This whakatauaki ( Maori saying) is always in the forefront when I think about my hearing loss journey
He toa takitini taku toa,Ehara te toa takitahi: My bravery was the bravery of many, not just one warrior
As with life its always about the team.
A wonderful reminder how ‘precious’ it is to have my sister returned to me. beautiful words Wanda – how proud I feel to be your sister and understand your courageous journey and courage that you continue to live life with on a daily basis with your hearing loss.