“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.
Life in Eureka 