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The Silence is Deafening

  • The Big Swtich On!

      1 September 2019

    Tena Koutou, Dear friends, If you dont know already, Two days ago (the morning after my surgery), my cochlear implant was switched on for the first time. You can watch it here.

    It's been a bit of a ride these past two days as I find my self in Day 3 of Switch On! Didnt know a general anaestheic could be this exhausting. The left side of my brain very happy to have all this stimulation, but also tiring. Had my first visit from a friend this am and enjoyed the beeps, echoes, hisses and rolls of the chat, then v. happy to rest!

    Left hand side of head is tender and neck sore. Bit wobbly on the old balance (Crashed into bookcase first night and broke mum and dad's sheep from scotland), but now balance getting better. Had my first walk round block today. Bit kind of achey in left side of my head.

    Also had to have the taste nerve cut - very unusual. So missing taste to a good part of the left side of my tongue. That is very weird.......

    I am trying not to practice this week.......they say just rest the first week. But already I am doing little practices. I cant help myself. Got mum to say three colors behind my back this am. I got red and yellow right, but not the color purple. Not bad. Well I am a bit tired as you can perhaps tell.

    This campaign page has just two more days to run. But you shall see more of this amazing journey if you would like! I will be running a "Hearing Journey's" webpage from my own site at http://www.kalewiswilliams.com soon.

    Thank you all for all the ways in which you support me and for being interested to learn about this CI journey.

    Mauri ora

    Lewis

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  • ON THE BRINK!

      27 August 2019
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    Tēnā Koutou, Dear friends,

    Okay, last post before I receive my first cochlear implant. This happens this coming Thursday, 29th August in Tamaki Makaurau / Auckland. Have to admit I have a bit of nervous feeling in my stomach today! “On the brink” refers to the potent mixture of the “unknown, hope and turmoil” that that often occupy the state of change. All going well, I stay in hospital just the one night and the next day go straight from the hospital to Hearing House to have the implant switched on. I am told that initially I can just expect to hear a lot of hisses and buzzes as my left ear hears for the first time in a long while. In fact my information sheet tells me “We can promise when you first hear sound it will sound like rubbish. Let us know if the sound is too much at any time”! I am told I can expect to do a lot of practice around my new way of hearing!

    It’s a strange feeling before surgery, a mixture of anxiety, anticipation, savouring the last days of having nothing foreign in my body and the feeling of my skull without the implant, and also just wanting to get out the other side of all this, though the operation and into a space where I am able to hear better; and I hope be much more one with the flow of life.

    What the psyche does with the process of having an implant is an interesting journey for me. I have been through a process of both pushing the thought of surgery and disruption away and getting into action around the organizing. Below the surface my psyche has been working to integrate. That integration has been from anything like feeling the left side of my head and quietly telling its “there’s going to be a big change coming up”, to dreaming the experience of re-learning to hear and in my dream re-cognizing the “new sounds” of old. In the dream I experienced such amazement and I am trying to hold the hope for myself that this is what I will feel and experience in real life, when I can hear better again. Who knows how I will describe this journey differently when I am out the other side of it.

    I am also really aware of just how fortunate I am to be receiving this chance at hearing again! It’s a new chance at life! Many people do not get this opportunity. Once through this, my plan is to keep fundraising for the second implant.

    The picture I have chosen today is one of myself and Leif Shantz, my Canadian nephew taken a couple of years back. Leif has two cochlear implants and is one of my role models, not just in CI land, but in life. When I was skyping with Leif one day a month or so back and was having some anxiety around ''would I be able to learn to hear again" (kind of similar to my starting school anxiety - would I be able to to learn to read and write - Ask my mother about that one!), leif's simple reply was "Dont under estimate yourself"! His reply hit just the right spot for me!

    My deep gratitude to you all for your support that has come over the past months to me in so many ways. It’s meant so much!

    Arohanui

    Lewis

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  • FEED ME ALMS FOR EARS!

      22 July 2019
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    Dear friends,

    Seem like an unlikely title for this update? Well its taken from the sign that the wee piggy (bank) in the picture wore around her neck for a fundraiser held for my second CI (which will likely happen some time next year after I receive my first publically funded one) by my friends Helen and Bron. It was a great night, where we got to come 'dressed from our past' and were asked to bring food from our past. Lots of fun and laughter and a welcome reprieve from more serious CI -related things. Incidentally Helen and I met at social work school in 1984 (that makes us start to seem ancient!) and quickly became good friends. Apparently in those days, well I guess in the summer anyhow, I would always turn up to Social Work School in shorts and Jandals! So even though it was a cold wintery night in the Tauranga Moana here in Aotearoa, I dressed accordingly from my past! Brrr! Thanks to all who attended the evening and for the fun had. And thanks all for your continued support.

    Arohanui, Lewis

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  • IT'S ALL ON! THE SILENCE IS DEAFENING CAMPAIGN UPDATE

      15 July 2019
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    ITS ALL ON! tHE SILENCE IS DEAFENING CAMPAIGN UPDATE https://givealittle.co.nz/cause/the-silence-is-deafening

    Kia ora Koutou friends, well, its all on! I received notification last thursday that my cochlear implant surgery is really happening! August 29th 2019 I will recieve my first cochlear implant. As Wayne Fossey put it "another chance at life". Thank you Wayne that so crytalized my feelings. I will continue to fundraise for the second implant. I'm excited and very humbled by all the support I have received. Big thanks to everyone's support and encouragement for my previous update "Getting to Cant and Other Deaf Things". Watch this space! Arohanui Lewis

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    • 16/07/2019 by Simon

      That's fantastic news Lewis.

  • Getting to Can't and Other Deaf Things

      2 July 2019
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    Dear Friends,

    Okay despite the title of this update, I am going to start back to front with the “Other Deaf Things”. Here goes. I received some great news last week from Hearing House: I’ve been formally accepted onto the surgery list for a cochlear implant in the public health system and am now awaiting my surgery date. I felt pretty emotional on receiving the news. It’s also a little nerve wracking on a few fronts. It is, also I realize a huge responsibility (even more so given the present impoverished funding levels for adult CIs here in Aotearoa) to commit to having the implant and keeping my end of the bargain up – i.e., to put in the hard work and practice I am told it takes to learn to hear all over again post implant. As the New Zealand public health system here funds one implant per adult and I need two, I have been told to keep fundraising for the other implant. So that’s pretty much the “Other Deaf things” covered.

    Now onto ‘Getting to Can’t’. I realize it’s been a quiet month as far as my The Silence is Deafening campaign updates go. My own personal hearing journey however has not been idle. ‘Getting to Can’t’ has been a significant part of my reality in the last while. Perhaps not the sort of thing I should be writing in an ‘upbeat’ campaign update! However, from the start I have wanted to keep these updates ‘real’.

    So ‘Getting to Can’t’ has been about fully facing into the things that my deafness prevents me from doing. In the weeks leading up to the cochlear implant program assessment, you might remember I wrote an advocacy research letter to the Chief Human Rights Commissioner voicing not only the impacts on my own life of untreated severe to profound deafness, but how this is also affecting the lives of 100s of others throughout this country. Both writing this letter and the cochlear implant program assessment in May required me to compile a detailed inventory of the loss and changes to my life through the deafness. The reality of the inventory was stark, overwhelming and powerful, all wrapped into one! ‘Can’t’ is not a place I like to be in for long- it’s frustrating and painful. However, fully naming the experience, planted my feet firmly on the ground in a different sort of way.

    Since then, for my own wellbeing, during this waiting period, I have made a deliberate decision to focus on the ‘I Cans’. Why? Because I need the hope and the connection with life that that the ‘I Cans’ bring me. For example, recently a good colleague and friend from Canada, knowing of my current hearing situation put the following invitation to me: “If you feel up to it, we would love it if you participated in our panel at the North American Indigenous Studies Association conference”. Of course, hearing wise I am no more ‘up to it’ than I was a month ago. And I am certainly less up to it than I was a year ago! However, I said ‘yes please’ because even though there would be plenty of awkward ‘deaf moments’ at the conference, I knew how much being a bit more a part of things would give me. So I went. Albeit, with a few apprehensions, but also excited at the thought of seeing many of my friends and colleagues again. We people with deafness often have conflicted relationships with ‘connection’ you see. On one hand I long to connect with others, on the other hand, attempts at this sometimes cause embarrassment or a greater sense of confusion, inadequacy and isolation. So it often becomes a kind of oscillation between connection and isolation to maintain a sense of being comfortable ‘enough’ with the process of life.

    So I went and had a blast with old friends and new friends on our Transnational Indigenous Feminisms Panel at the conference. True I couldn’t hear a lot of my friend’s presentations, which meant my responses were awkward at times. But, it was ‘enough’….to express my ideas and have the feeling of once again flying, soaring amongst possibilities in the world of ideas, and having the sense of flying alongside birds of the same flock. It was so uplifting and good for my spirits.

    Even so, between times, I was careful at the conference to give myself plenty of ‘’hearing breaks” – times when I give myself permission to get away from the people and the reality of struggling, and straining to hear. Despite the significant energy it took, the conference was absolutely worth it. So big thanks to my friends for the invite and reaching out to me – it meant a huge amount to me to be a part of this. By the way, I am the person in the middle of the picture taken at our panel presentation.

    So that’s a little bit about the reality of getting to ‘I can’t’ and playing with ‘I can’ as I continue this hearing journey. Heartfelt thanks to all of you for your continued support. Arohanui,

    Lewis

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  • I do not put a tick that I have a disability on the job application

      30 May 2019
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    Kia ora firends,

    these were the words of Helena Swan (pictured in the update), cochlear implant recipient in 2016 who was born deaf. "I do not put a tick that I have a disability on the job application. When I do get an interview, they ask me why I didn't tick it. I say because I do not have a disability, I am deaf and I am a gifted and talented person and how come you don't have a box for gifted and talented on your application?" (Helena Swan, 2016).

    As I scanned through the pages this morning and thought about what update to put out I realize that I in the past couple of weeks I have felt very much "'in the turbulence and messiness of the journey". Perhaps going through the assessment does that? I'm not sure. However, Helena's words caught my eye as does the story of her journey.

    To read more about the incredible hearing journeys of Helena and two other women click on this link

    https://www.nzherald.co.nz/bay-of-plenty-times/news/article.cfm?c_id=1503343&objectid=11560862

    Regarding my own campaign I am currently revising and expect to be in touch shortly about plans to move this forward.

    Big thanks for your generosity and continued support. It really makes a difference for me.

    Arohanui

    Lewis

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  • The Promise of a Non-Disabling Society

      22 May 2019
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    Tena Koutou / Dear Friends, As a signatory to the Convention on the RIghts of People with Disabilities, New Zealand aims to be non-Disabling Society. Yet current NZ policy and practice regarding Cochlear Implants is clearly disabling many New Zealand Adults who could otherwise be leading much fulle and productive lives.

    This week's update is a miz of the personal and the political with the release of the Labour Government's budget later this week. Yesterday some of you may have seen the article in New Zealand herald "Hundreds of Deaf adults missing out on life-changing surgery" https://www.nzherald.co.nz/nz/news/article.cfm?c_id=1&objectid=12232855&fbclid=IwAR2K964NC31oGhsWgL_UmJa7AMike_jUSDJyP5G7gfOXaCfLzdDt-fkCV6g This is the harsh reality, many on the sidelines with few resources to speak

    about their situation. Read Riki's story in the article.

    Also worth a read is my recent article submitted to the New Zealand Medical Journal "Severe to Profound Hearing Loss and the Cochlear Implant Situation: How Policy and Practice are Disabling New Zealand Society". A self-case study, it combines my personal experience of SPHL with my professional experience as a Maori Public Health researcher. A full copy of the article has been published on Researchgate at https://www.researchgate.net/publication/333235627_Untreated_severe_to_profound_hearing_loss_and_the_cochlear_implant_situation_How_policy_and_practice_is_disabling_New_Zealand_Society

    Thank you all for your continued support. I appreciate it!

    Nga mihi nui

    Lewis

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  • The Hearing House - The visit I never expected to make

      13 May 2019
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    Tena Koutou, dear friends,

    I met some fabulous people at the "Hearing House" in Greenlane, Auckland last friday. My mother Shirley and sister Julie accompanied me to what was a very intensive assessment process for a Cochlear Implant through the Public Health system. I met some very dedicated hearing professionals. The visit and the couple of weeks leading up to it was quite a process. Putting together my submission to Paul Hunt, the Chief Human Rights Commissioner and undergoing this assessment really called me to acknowledge to myself, the immense challenge of living with my deafness all these years. I've often been a box on kind of person. But this has made me stop and look and take a few deep breathes in a good kind of way.

    The good news is that I have been accepted onto the waiting list for a publicly funded implant. The other critical piece of news is that I should keep on fundraising as I need two implants and it is not certain how long I will wait for the publically funded implant. But still v. good news.

    The journey of being human certainly has so many twists and turns, for all of us, with the different sorts of challenges we face. One decision that has come from facing more deeply into my deafness these past couple of weeks in particular, is that I will be establishing a Hearing Jouney's Page as part of my professional / personal web site. My intention is to fully own this journey and share the resources that come out of it with others. More to come!

    Big thanks for your continued support everyone!

    Arohanui,

    Lewis

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  • An Open Letter to the Associate Minister of Health

      8 May 2019
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    The Silence is Deafening - Campaign Update. An Open letter to the Associate Minister of Health and Disability Rights Commissioner. Hello friends, thanks for your patience over the past few weeks whilst the campaign updates have been rather sparse. I've been busy gathering information for the ADVOCACY part of my campaign. It's turned into a fairly significant piece of research - I expect to publish a copy of this letter in full very shortly! For now, you get the idea! Thanks heaps everyone for your support, I truely appreciate it, Arohanui, Lewis

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  • Stories of Courage and Tenancity

      14 April 2019
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    Dear friends,

    I am finding that this campaign is bringing with it many unexpected gifts. One of those gifts is the opportunity to meet some amazing and inspiring people who are part of the CI (cochlear implant) whanau. One of those people I met over the past couple of weeks is Josie Calcott, a Tauranga mother and nurse and long distance runner! Here's her CI story in brief. Over the next couple of weeks I hope to feature more of these stories of courage and tenacity belonging to those walking this journey.

    I am humbled by these stories as well as the support, learning and aroha that I am receiving in so many ways through the Silence is Deafening Campaign. Arohanui

    Lewis

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  • On Challenging the Deficit Model of Deafness

      1 April 2019
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    A big thank you to the growing list of supporters for this campaign. It's wonderful to have gone over the first $5,000 mark!

    This week I am featuring a personal reflection on losing my hearing written by my younger self some 24 years ago. Here I name myself as a "Woman of Changing Abilities", refusing to see myself as 'less than' because of my deafness. Still a lot of truth in it for me. Have a read and see what you think!

    With best wishes and much appreciation for your support!

    Lewis

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  • Appreciating your Support

      26 March 2019
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    Kia ora Koutou,

    A big thank you for your donnations and the others ways in which you and others are supporting the Silience is Deafening Campaign.

    Due to the national tragedy in Christchurch I made the decision not to post campaign updates over the past 10 days or so. I wanted to support that give a little page https://givealittle.co.nz/cause/christchurch-shooting-victims-fund and, also I am sure like many of you have needed and wanted to take time to process what has happened.

    I am now coming back full swing into the Silience is Deafening Campaign. For this week, my awareness raising is focused on the impacts of Severe Hearing loss and the Benefits to the Social Economy of Cochlear Implants. Got to https://vimeo.com/230530984 for a three minute video watch!

    Thank you everyone for your support. I appreciate it!

    Lewis

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  • Campaign has Successfully Kicked off thanks to you!

      9 March 2019
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    Dear "the Silence is Deafening" Donors. Big thanks to you for getting behind my campaign in these early days and helping it get off to a great start. Your support and the good energy behind that makes a big difference to me.

    As part of my weekly campaign updates over the next three months I have made the committment to share more widely about experiences of deafness.

    My first sharing is a 5 minute film about the experiences of deaf people in Canada. I was part of this film. You can view it here https://vimeo.com/249199075

    With best wishes

    Lewis

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