My Monthly Life Journey..

“In Philippians 2:13, Paul wrote, “It is God who works in you both to will and to work for his good pleasure.” And it is. God gives us the will and the power for life.”

My mother asked me if I suggested typing a life journal after hearing about my new health issues two months ago (June 2024). It is time to start thinking about the first day of the month and how I manage daily life wherever I am, at work, home, or anywhere else. It is essential for any of you never to experience one-off disability or impairment but live with a permanent disability or more than one disability that develops a new permanent impairment later on.

At the age of eighteen months old, I was diagnosed deaf with rubella when my mother was in the 2-trimester stage, and my sister had rubella from the MOPs group. Note New Zealand was the last country to learn about the severe Rubella epidemic, and no vaccines were available for all mothers and children. I found a way of problem-solving, and my family helped me through daily living when there were many obstacles in the community and at home. I did not identify myself as a deaf person until I was a teenager, and today, I use the small letter ‘d’ as my first language is English, and I didn’t spend my time with the Deaf community until I worked as a Deaf and People with disabilities community liaison/Advocator from 2001.

Then, I suffered another excruciating nerve pain from the neck down to my hips a month after moving into my second home with a mortgage in the late 1990s. The GP could not diagnose my symptoms, but he suggested that I continue with physiotherapy and pain relief until my symptoms are resolved. There was a long battle with the Health Services, ACC and the specialists to get to the bottom of my mystery symptoms. Note I haven’t received any compensation from ACC. Their referral of specialists by the ACC was not fully qualified to understand my permanent disability as deaf. It did not cover a complete check on the nerve from the central neck and cervical spine base; instead, it said it was in the head, taking more pain relief, a cortisone shot injection in the elbow and physiotherapy. I refused to have two more cortisone shots because it would damage my body, and I saw several people with disabilities suffer from this; even my partner, who had the last surgery, refixed after discovering he had three cortisone shots in the past. I explained to him and his specialist that one of his specialists failed to explain the risk of taking three or more cortisone. Yes, it was a lot of crap bureaucracies and ableism in that area.

Out of the blue, my ex-GP came out of the UK and served in the Army Medical area. He read my reports before meeting me during my personal GP’s routine health visit and getting to know me. He saw many notes flagging errors in finding my symptoms by other specialists, and he referred me to the top specialist at the hospital with his wording, and these symptoms had nothing to do with my deafness or my head. This ex-GP assumed what I may have because he treated several veterans back in the UK, and we waited until the final result to confirm my symptoms. Finally, in 2018, my symptoms confirmed that I have C4-7 Cervical Disc Degenerated Radiculopathy. Over the years, I adapted several activities around the home, gardening, the workplace, and travelling. Today, I continue to maintain activities and learn to ask my partner and other people to assist me, such as carrying heavy cargo and boxes, cutting up meat bones for our three dogs, digging holes in the ground, doing DIYs around the home and reducing vibrating gardening equipment. I continue to take prescriptions for these symptoms, make an appointment with the same physiotherapist in Hillcrest whenever I need some help with massage, and, of course, get more rest and reduce long-distance travelling by taking a break at each stop. This symptom is my new disability, to add my first disability.

Now, I have a new symptom that showed up early this year. The eye specialist discovered it and referred me to the Optometrist at the hospital. Twice, we (my partner and I) visited the Eye Clinic at the hospital, and the optometrists did several eye tests, including pressure tests and Retinal Imaging tests. The Optometrist told us what they expected and gave me the night eye drops until the next appointment for more tests due this month.

Currently, I am working on adapting when using a computer/laptop/iPad screen, font size, and background brightness, moving a bit close to the PowerPoint screen for reading and watching the interpreter sign, the lighting in the rooms, and wearing reading glasses as a short-sighted person. Driving is okay as it is below the average eyesight requirement in New Zealand, and an acceptable certificate will not be present until years to come. My new symptom will be added to my two disabilities as my age is sixty years old, and it will change from time to time. I have become less independent than before. I am fortunate to have learned by making adapted tools, equipment, and technology for people with disabilities, whom I have supported over many years. Now, it is my turn to change the way I work and home.

Kei te whakaatu te Rakau Magnolia (Magnolia Tree is displaying)

 “The eternal God is your refuge, and underneath are the everlasting arms.” Deuteronomy 33:27

Ko ngā putiputi whero-pīngao e whakaaturia ana i te mara i tēnei ata i te rā whakamātao

Magnolia tree behind the large Silk Tree at the back

(Pink-red flowers are displayed in the field this morning on a foggy day.)

Something unexpected or uncertain about my old Facebook account may be restored today or over the weekend. What is the story about my old Facebook account?? In March 2024, someone hacked and made a big fat lie to the Meta Service that I breached the community standard. I sent the report about someone who did not comply with the community standard guidelines, but the Meta Team believed that hacker instead of my report. They shut down and blocked my Facebook account. Yes, they failed this, and now, in the end, the Meta team realised it was not my fault; it was the hacker, so how foolish was the Meta Service. Never mind. Yesterday, I saw the news from the Meta Service that their service was the best vote for making disability more inclusive – what is the heck? I disagree, and there is more work for D/deaf people and persons with disabilities over friendly accessibility, the need for human contact support lines, and less language to allow anyone to navigate around social media.

Shifting back, I see the Magnolia trees in the chilly sunshine today. It is a sign of late real winter and Spring on the way.

Ka whiti te rā ki ngā putiputi whakakaha, ā, ka whakararuraru i te tirohanga pai i te wā o te hōtoke whakamutunga

(The sun shines on the beautiful flowers and gives us an excellent sight of the display during the late winter.)

We have three more Magnolia trees—one old tree with new leaves finally coming out from the bottom trunk and two young shrubs—which are a bit of a worry and will need care.

“I’ve always loved magnolia trees and their blooms – there’s something so beautiful about a magnolia blossom. It demands attention, and you can’t help but love those big, creamy petals and that fragrant smell.”

— Joanna Gaines

Whenever I am working and travelling to Hamilton and other towns around Waikato, I am always delighted to see our home with flowers displayed in the fields, at the driveway entrance, and by the side door, where our dogs wait keen to get out by greeting me or my partner or even both of us during the weekend.

When the first light of sun, Bless you. When the long day is done, Bless you. In your smiles and your tears, Bless you. Through each day of your years, Bless you.

Ko te whakatūwhera o ngā oranga ki ngā rākau, ngā rauaroha me ngā pūrerehua ia tau

(It is like a rebirth of lives in trees, shrubs and flower bulbs each season.)

May the sun shine all day long, everything go right and nothing wrong. May those you love bring love back to you, and may all the wishes you wish come true.

Update about the project donations.

My projects on Kickstarter and GoGetFunding can potentially gain donations for the work hours spent preparing, typing stories, and publishing, even for getting a new laptop with a large GB external drive memory and hard drive. The donation will be used outside of my work hours as a deaf community liaison officer/advocate and community support worker.

It has been slow, and nothing has happened yet except the backers were interested in supporting. The situation is becoming urgent as the cost to pay upfront from my income is mounting.

Your support and advice are crucial at this stage. I have been considering any improvement: changing the plans instead of using my income without any donation or letting it wait and see next month.

Your advice or support could be invaluable at this stage. I have been busy with my work and meetings, and my projects are sitting and waiting for the action.

Jean’s home office

The funding applicants will be available next year, while other applicants are closed in New Zealand. The projects will have to wait until 2025. I will try two or three funding applicants, but I will go through the small print of the application guidelines, whether it is for an individual or with the organisation.

They are more or less successful in finding a solution for the community. New Zealand’s economy is not good for everyone.

Calling Donations for two projects

Your contribution is not just financial support but a vital element in the success of Jean’s projects. Your involvement will have a significant impact and make a real difference.

I have set up two different sites for donations and funding the projects I am making for the communities.
These are the platforms where you can contribute to Jean’s projects. I have included the links for your convenience.
http://kck.st/4baNnK1

https://gogetfunding.com/deafhistoryprojects

Reaching out to audiences can be challenging, and I pay one backer upfront using my income. I am grateful for the support we have received so far, with one person donating the Epson Scanner for the project, a Deaf senior supporting me in gathering around the ex-deaf members about this project, and another promising to donate after he is residing in a new home.

I sourced funding/donation applicant grants in New Zealand, and sadly, most of the applicant funding renews next year, in February 2025. There are one or two funding grants for which I may get the equipment but not for the projects of hours, preparing and publishing a book and a couple of Domain sites under WordPress.com. One is called the Lottery Individuals with Disabilities (six times a year by the committee board’s decision-making).

I suggest heading over to two domain links where I made the starting platforms of the website for readers/audiences to learn about our Waikato Deaf History, New Zealand. Please have a look and consider supporting me by donating to these projects. Without our Waikato Deaf History, it will be lost and untouchable in the Waikato Deaf Society Inc. and Waikato Deaf Units.

https://waikatodeafeducationunits.blog/

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Helen Keller Day – June 27

Helen Keller Day is a significant day that commemorates the extraordinary journey of a woman who, despite her profound challenges, managed to make a lasting impact on the world. Her story is a testament to the power of resilience and determination.

“Optimism is the faith that leads to achievement. Nothing can be done without hope and confidence.” Helen Keller

The theme for Deafblind Awareness Week 2024, ‘Embracing Diversity: Breaking Barriers Together,’ is not just a slogan but a potent call to action. It echoes the challenges faced by the Deafblind community and underscores the strength of unity and collective effort in overcoming these barriers. This week, a symbol of solidarity, runs from June 25 to July 1, serving as a poignant reminder of the community’s ongoing struggle and collective power.

This week is timely, reminding me about Helen Keller Day. I have been involved with a small group of Deafblind people for many years. Only one particular person was Elsa, who moved to New Zealand from the United Kingdom and lived in Auckland and Cambridge, Waipa. Elsa was born deaf and lost her eyesight from time to time. Her communication was sign language in tactile form, and she used reading tools such as a magnifying screen pad. Then technology came, and magnifying screens improved but were expensive for reader use. Here are the photos and the video from the Central Library, Hamilton.

I recently had an eye test and was referred to the Waikato Hospital for further tests. The diagnosis of my eye test was early, and I knew what to expect in my life and the future. I sit back and enjoy the moment as I go through daily life at work and home.

In the past, the Deafblind community grappled with significant challenges, relying on braille equipment, walking canes, and tactile sign language for communication. However, the advent of technology has ushered in a new era, offering fresh possibilities and enhanced accessibility for the millions of Deafblind people worldwide, instilling a sense of hope for the future.

Today, many ITs and inventors are improving technology to match and fit the lifestyle and workplace of Deafblind people through a friendly, accessible environment. However, the main problems are the cost of technology, the need for more funding, and low income.

Jobs are struggling for Deafblind graduates and qualified people while other Deafblind people stay home, struggling to have their freedom in the community. Yes, several Deafblind people are working in a different area of work, but it is not fully accessible, and they receive low incomes. The result of the difficulty and struggle is due to the lack of awareness and understanding of their (Deafblind) disability/disabilities. People without a disability have no experience or limit of empathy with the family, friends and staff in the community because people without a disability have no idea of how to live with the impaired disability themselves. Why not learn and try to understand from us?

Today, the world is changing faster than anyone expects, for example, global changes, future technology, financial and economic decline, job cuts, increasing poverty, crimes, health issues, etc. Mm, let you know we will have an increasing number of disabled people plus children’s everyday lives, and there is so much to tell you and expect you to learn about us, including Deafblind people.

Have you ever thought about yourself losing your eyesight and then losing your hearing loss or losing hearing loss then eyesight?? Let me tell you; it is a more significant challenge to learn late than early if you do not think about Deafblind people or any other people with disabilities.

Here is one of the famous quotes that the United Nations Convention on the Rights of Persons with Disabilities used when addressing the assemblies: “Nothing about Us Without Us” by James Charlton. I use this quote wherever I attend meetings, Government agencies’ meetings, Health Advisory groups, and other places.

Here is the link from the newspaper HuffPost, and feel free to read the article “Nothing about Us Without Us – Mantra for movement.”
https://www.huffpost.com/entry/nothing-about-us-without-us-mantra-for-a-movement_b_59aea450e4b0c50640cd61cf#:~:text=To%20quote%20James%20Charlton%20who,of%20Persons%20with%20Disabilities%20and

Optimism is the faith that leads to achievement; nothing can be done without hope.” Helen Keller’s quotes – Optimism

Here is the funding page I am making a book and a website for the everyone to learn about our Deaf History in New Zealand. Thankshttps://www.kickstarter.com/projects/nzdeafprojects/waikato-deaf-soceity-inc-1956-1999-dissolved-2004/

Matariki is coming up

The Moon is the reflection of your heart, and moonlight is the twinkle of your love.

Debasish Mridha

As we step into this chilly evening, the waxing Moon above our home hints at the approaching Matariki, a significant event in the Māori culture, set to occur next week on June 28th, 2024.

Have you ever wondered what Matariki means to you, readers?

Matariki, also known as the Pleiades or the Seven Sisters, is a cluster of stars in the Taurus constellation. For the Māori people, it holds a special place in their culture, symbolizing the start of the Māori New Year. The name Matariki is a shortened version of Ngā mata o te ariki o Tāwhirimātea, or ‘the eyes of the god Tāwhirimātea’, a name that reflects its celestial significance.

https://www.learnz.org.nz/location192/bg-standard-f/matariki

Here is another link – https://matariki.co.nz/

It was a night filled with a unique ambience as I called our dogs back from their night runs. The waxing Moon cast its ethereal glow everywhere, and the distant sounds of traffic passed by.

I like to think that the Moon is there, even if I am not looking at it.

Albert Einstein

While we were sleeping overnight, the sound of the rain came heavy until it disappeared in the morning today (June 23rd). Note that I did not hear the sound, for I am deaf at night without hearing aids.

Worked with a disabled, elderly man (with cerebral palsy, speech impaired and deaf), and his name is Jacek. Jacek asked me if he needed his raincoat while we were going to make his requests for groceries, an outing, and lunch. He bought his raincoat in case. Jacek learns about the public holiday on Friday, June 28th, because he does not know Matariki and what it is all about. I explained to him, and he replied that it is good for us (my partner and myself) to sleep more.

Moonlight drowns out all but the brightest stars.

J. R. R. Tolkien

Projects – Funding/Donation Request

I want to share with you all the links I plan to use to raise funds or donate to specific projects of Waikato Deaf Society Inc. and Waikato Deaf Units, such as [Project 1] and [Project 2].

https://www.kickstarter.com/projects/nzdeafprojects/waikato-deaf-soceity-inc-1956-1999-dissolved-2004

https://gogetfunding.com/deafhistoryprojects

There are no resources or stories in the library or on the website. Many people and the families of their ex Deaf members do not know a lot about the Deaf seniors’ lives through Waikato Deaf Society Inc., Their experience in their Deaf community is unique and different from other communities. They face unique challenges, such as specific challenges, which can often be hidden, silenced, or forgotten. These struggles are usually due to barriers such as communication within the families, staff, and the people in the community, where we may not resolve the difficulty in the Deaf Seniors’ lives. The Deaf Seniors’s children (CODA – Children/Child of the Deaf Adults) may remember the good times and learn to understand their parents’ struggles with many barriers and the good times such as camping, outings and getting involved with social.

The projects are the main resource for publication, such as publishing books for the community and websites I made under WordPress.com

       – https://www.mydeaf.blog/

I have started collecting and scanning photos to write stories along with the Deaf senior who is supporting me. I need the funds for travel costs, hours of research and writing, scanning photos to a good laptop with large memory (GB), video chats by recording, the cost of paying monthly through the WordPress site and many other tasks.

Here are a couple of fundraising/donation links to the projects. If you can help, please share them with your family and friends and spread this message. Your support, no matter how small, is invaluable to us, and we are deeply grateful for it.

https://www.kickstarter.com/projects/nzdeafprojects/waikato-deaf-soceity-inc-1956-1999-dissolved-2004

https://gogetfunding.com/deafhistoryprojects

If you have any questions about paying to the account, please send me the request so I can send you the account when you do online banking.

Thank you for your time.

Jean

“There are two seasons in Scotland: June and Winter.” – Billy Connolly.

Before the storm hits New Zealand this week, bright, colourful leaves are falling on the fields everywhere. I remember a time when I was walking and watching our dogs play and romp around the fields, and it was such a delight to see so many colourful leaves. I couldn’t help but join in their playful chase, feeling the crisp air on my face and the crunch of the leaves under my boots. It’s moments like these that truly make winter unique.

“Winter is on my head, but eternal spring is in my heart.” – Victor Hugo. This quote from Victor Hugo beautifully captures the essence of winter, where the external cold contrasts with the warmth and hope within us. It reminds me that even in the coldest times, a spark of life and joy can always keep us going.

“Blow, blow, thou winter wind, thou art not so unkind as man’s ingratitude.” – William Shakespeare.

Last Wednesday, late afternoon, the storm came across the North Island, and we were prepared for safety and warmth in our homes. Several power cuts, high winds, and trees falling over in Greater Auckland and Raglan as we saw the news on the television. The storm disrupted our daily routine, but it also brought a sense of adventure and resilience. Thursday morning came, and I inspected the property while the dogs romped under the watchful eyes because our young pup managed to slip through the fence while chasing the bloody rabbit. There was no damage here except that the wall of the roof sheet in the garden blew down, and loose dead branches were everywhere. As I wear hearing aids, I can hear the crushing noise, but it is not strong enough when I walk through fallen colourful leaves.

Winter is here! 01/06/2024

“Winter is a glorious spectacle of glittering fractals complete with a soundscape and atmosphere entirely its own.” – Anders Swanson. Winter is a time of unique beauty and wonder. The way the frost sparkles on the trees, the sound of the wind whistling through the bare branches, and the crispness of the air are all part of the magic of winter that I truly appreciate.

Putting the gumboots on, I walk while the dogs play, chase each other, and romp over the leaves. Our older dog, Jazz, accompanies me side by side. The vibrating of the sounds through my gumboots gave me the echo-vibrating sound travel up to my upper body through my hearing aids of the leaves crushing sounds when I walked on. The air was crisp and cold, and the sound of the leaves under my boots echoed through the quiet winter landscape. It was a moment of pure winter magic.  

The sound of the leaves 01/06/2024

It’s Saturday here. My partner suggested we need a blower vacuum instead of raking all the leaves yearly. We headed over to Bunnings Warehouse in the city of Hamilton. We inspected the prices and the weight of handling the blower vacuum for me as I have Cervical disc Degeneration Radiopathy on my right side, and to ensure I don’t prolong the period when using the equipment and strain my right side overnight, which causes soreness and pain. Winter brings challenges, but with some creativity and support, we can find ways to overcome them and enjoy the season.

“Winter is nature’s sleep.” – H.S. Jacobs

Leaves, leaves and leaves

“Every leaf speaks bliss to me, fluttering from the autumn tree.” – Emily Bronte.

One serene afternoon, following a heavy rain that had swept across the North Island, the sun gently caressed the damp ground, illuminating the fallen leaves. The wild weather had passed, leaving behind a calm anticipation for the impending cold season. 

The sight of the leaves, a kaleidoscope of colours strewn in a seemingly random pattern, was a breathtaking spectacle, a vibrant testament to the artistry of nature’s palette. 

Leaving the fallen leaves to bask in the sun’s warmth, they gradually transform into compost, ready to nourish our vegetable and flower gardens. And there’s Ben, our playful pup, leaping into the pile of leaves with unbridled joy. 

Our two other dogs walking around and sniffing the rabbit’s scents on the ground. 

Rabbits are busy collecting scrap of food, grasses, rotten vegetables, and fruits in the garden. 

Plenty of wood was stored in the barn, which is ready for our home’s fire heating. 

Hark, it is only May going into June, and the winter is not here. 

“Silence is golden when you can’t think of a good answer.” Muhammed Ali

“Autumn lingered on as if fond of its own perfection.” — Winston Graham, “Ross Poldark”

This morning, on my way out from the Hamilton City Council, where I was teaching staff to learn our language—NZSL (New Zealand Sign Language)—it was a beautiful, chilly morning with sunshine basking the golden, yellow, and brown leaves on the ground. Oh boy, it was a cold morning after leaving our home in Eureka, and it was 3°. 

 One of the staff told me that Hamilton City was 1°. Ouch! 

Hamilton City Council May 8th 2024

“Is not this a true autumn day? Just the still melancholy that I love — that makes life and nature harmonize.” — George Eliot

I reflected on the past videos, especially those by Hamilton Lake/Lake Rotoroa, during the lockdown. Here are the video and photos. 

Lake Rotoroa