Tag Disability

5 Weeks Nonverbal, What Have I Learnt?

Ashley Kahurangi Leave a comment

Week 5 begins of being Nonverbal. Friends and chosen family have taken it in their own stride to adjust while we all have learnt how to help me communicate still.

We’ve learnt I have really quick thumbs so now I look like im hooked to my phone at the moment even though i’m just relaying messages to be part of a discussion.

I thought after another month being nonverbal it would be good to jot down how it has been going for me with this experience. In this time I did have another hospital admission, and sometimes I can manage a whisper or two, but i’m still in this cPTSD crisis.

  • How your mind thinks of words, changes. I’ve been nonverbal long enough to notice a subconscious change in thought patterns to match more my current top speed, restricted vocabulary for pace of communication etc.
  • The amount of thinking about what your going to say next is a lot less but when you know, it’s still not enough words.
  • You learn how close friends remember your regular go-to stories when they share them for me.
  • You enjoy the immersive moment during conversation more. Without the worries about what to say next, you can get lost in your own imagination about what the person is talking about and fully engaged as a listener.
  • Your other senses do get dialed up, I feel like my hearing has been ramped up even more. Whether that’s a good thing or not is hard to tell yet
  • There’s a difference to listening to a discussion and being part of a discussion that many verbal folk don’t realise. Even if its a 1 on 1 chat.
  • Body language becomes an important form of conversational communication that it is no longer seen as communicating any appearance of poor or good mental health.
  • Even after 5 weeks, if I could have my voice back, I would in a heartbeat. I don’t think I could ever get used to this. And while it has been a big learning experience, if my brain is ready to heal and carry on, I’m ready when it is.

1 Week Non-Verbal, So Far

Ashley Kahurangi Leave a comment

My disability has progressed to the point that I can no longer talk *gasp*. Specialists say its not permanent so I am trying to keep hopes up and to keep trying to get my voice back. But I thought I would share what I have learnt so far after a whole week being nonverbal:

  • You definitely can’t communicate as much in your body language without speech in conjunction. I may be getting better at charades but I still can’t tell someone urgently to stay in the room.
  • Speech-based conversations are usually moving too fast to contribute to as a nonverbal person.
  • You can’t set personal boundaries in conversations like you would if you were verbal.
  • You communicate a fraction of a fraction of what you could when your verbal, you spend the attention span on others wisely with few questions.
    • But still need to remember to crack a joke once in a while.
  • Sharing how your feeling becomes a moot point when you need someones attention to get the dog to stop chewing something he shouldn’t.
  • When you communicate with the world differently suddenly, your outlook and interpretation sure changes too.
  • Going from being verbal to nonverbal is like being made to live in the loneliest hailstorm in a teacup. You can only daydream so much until you are stuck with forced self-contemplation. No matter the revelations about yourself and others, no one’s gonna hear you scream internally.
  • Journaling becomes so much easier when literally everything you have said is already written down.
  • Other people by default speak quieter around nonverbal people for no reason at all other than social assumptions.
  • Text-to-speech apps are essential to make sure car rides are not in weird silence.
    • There definitely isn’t enough options for these kind of accessibility apps than you’d expect.
  • Every “friend” who doesn’t like text-based messaging will disappear from your life.

Hauraki, My Tokotoko; A Story

Ashley Kahurangi 1 Comment

Despite my cPTSD crisis this year, getting access to CBD oil medicinally during it has helped my mobility a LOT!

I started from an ability to walk slow and painfully only with crutches and multiple braces for maybe 100 meters (110 yd) a day and my mobility.

Within the space of a month, I achieved to improve my mobility (maybe 250 meters / 273 yd a day in total, covid lockdown meant I wasn’t leaving home 99% of the time anyway) before I was in hospital for my mental health again (they still don’t allow prescribed CBD oil in hospital settings here in Australia), it got to the point that I started small shopping trips without the wheelchair so long the walking was short with pauses for my fatigue as well. I do still have to use the wheelchair most of the time when leaving the house and for the “bad days” when symptoms flare up.

Everything we do, wear and use can be a tool of self expression.
Not our opinions.

This made crutches, bulky and not necessarily needed every time im upright. When suggested, I was originally very anti-walking stick. You know the usual social stigma around them and how people with them are approached; I know ableism very well with 4 years so far using the wheelchair.

When something can end up becoming part of my identity, just like how people used to describe me as “that guy in the wheelchair with the mohawk” I know I want it to express my identity while being something for me above all, everything we do, wear and use can be a tool of self expression and that includes a walking stick and my friends know much i enjoy diversity and everyone to have the right to express themselves.

A tokotoko is a traditional walking stick in New Zealand. This one was carved by a hobbyist named Ted Hatchwell from the Waikato region, the same region I was born and spent my first eight years as a country kid.

The tekoteko (the person carved on the stick) is a human-like figure most commonly placed on the gable of a house or gateway, and is there to ward away evil spirits. I named this guardian Hauraki after the Hauraki Gulf in Auckland for a very special childhood memory.

When I was 10, I was sent by the school’s health nurse for a whole school term to “Health Camp” in Eastern Auckland area, which I later found out in adulthood was for vulnerable at-risk youth; as I was under heavy depression issues from home life and unable to make friends at school. The Maori cultural teacher became my go-to therapist with the rapport we built while I was there.

To watch the Taniwha under the cloud shadows cross the Hauraki Gulf, feeling them work their way around the island Motukorea to find their way back to land to find whatever person or place they feel need guarding.

I used to sit on top of the playing field every chance the weather allowed and watched the clouds roll over the Hauraki Gulf and over the land. She enjoyed how I would make up stories, merging maori mythology with my own creative ideas, and to this day her words of “if you were here before Europeans, you would be considered a great story teller.” After this experience, this is when I started journal keeping, took a leap and got into creative writing. I don’t remember her name but she was the first person ever to help me believe in my own abilities of telling stories and encouraging my passion in Maori culture.