“In January I started building my own house in Kihikihi with my brother.
About a month before Lockdown I changed my situation and got in a disability provider to look after my Enabling Good Lives (EGL) budget.
Life before EGL was terrible, so frustrating. The amount of funding was not very good, and I had to ask permission for everything. It’s good I’ve now got full control.
I lived with my parents up until I was 20 and then moved straight to my home in Hamilton with someone else, he needed support as well.
The past four or five months I’ve got back on track in figuring out my health issues and so now I’m doing part-time work for my friend’s building company, doing some admin, payroll, things like that.
I sent my support workers away and went into Lockdown with my mother and brother. I had four people working for me at that time, I now have three.
Mum and Dad run a joinery business in Te Awamutu and my brother is used to helping me out.
My care workers understood the situation. I reassured them that everything would be fine, they would be paid, pretty much as usual, and that there was nothing to be afraid about.
We swapped a few messages here and there.
Lockdown was alright, the weather was nice and I watched lots of YouTube. I had Zoom meetings and appointments.
I watched Ozark and Tiger King on Netflix.
I read books on the computer, Kindle stuff.
I used to play video games quite a bit with my friends, I can’t do that. I can’t use my hands. That sucks.
I had PPE (personal protective equipment), and the people from EGL dropped a shipment off to me.
Considering there was a shortage, I did pretty well. We had masks and gloves, sanitiser and I had no health issues.
I was living in Fifth Avenue, in Enderley (Hamilton). There were a lot of people on the roads, it was crazy, there were cars and trucks, all day and all night, and heaps of people were out and about cycling and walking.
Just before we went into Level 3, I decided to have my support workers back.
My mother and brother were keen to have a break.
It was lucky that Covid-19 didn’t mess up all the house plans, so moving day on 26 June into my new house went okay.
I need 24/7 for everything. I’m doing okay, I’ve seen some other people with this condition not doing as well. I started to walk until I was two-years old and then I stopped walking. The doctors just thought I was lazy.
When I was younger, I could do a lot more with my arms, and could support myself a lot better.
When I was 14 or 15, I could use a pen, and write. I could hold my thumb properly. Now I only have the right thumb and that’s about it.
Bits here and there started going. I’ve lost heaps compared to five years ago.
About a year ago I lost the ability to eat and drink. I can’t swallow and chew properly. It’s probably the hardest thing I’ve ever had to adjust to. It’s because the muscles in my throat can’t swallow.
In the last two months, I’ve lost quite a lot more. I can’t do anything much these days.
There is treatment but not in New Zealand.
My lungs are always in decline. I have to hold my head up, that will be the next to go.
It is what it is, it just feels normal to me.” – 17 September 2020
- This article appeared in Life in a Pandemic, a book about disabled and autistic people in Covid-19 Lockdown, 2020. © Life Unlimited Charitable Trust (now known as Your Way | Kia Roha).