I shouldn’t be cringing and anxious with regards to writing about my own disabilities and health situation, but I am.
It’s deeply, deeply uncomfortable for me, but it IS important information; both to those who follow my work and to people who might be going through similar experiences. Anyway, it’s an upcoming part of my website - I’d like to include general news about the conditions I have, some links on these topics, and a little bit about my experiences with each of them and how they affect my life.
It’s just going to take a little time to get it out in a way I’m happy with, and I’m writing this blog entry to provide a bit of context.
Having a Profound Hearing Impairment is one thing - to me, being deaf is normal… I’ve simply known no other way of experiencing life, even though I grew up amongst hearing people and didn’t receive any treatment until I was 30 years old. For me, a silent world is entirely natural - it’s the noises that come through my hearing aids that are odd!
Two of the other conditions; severe psoriatic arthritis and chronic urticaria (that’s itchy, lumpy red hives - everywhere!) have only really manifested in the last 10 years, and I’m still adjusting and adapting to them myself. Treatment and medication is still a very new thing for me, as is my need for a cane or stick to assist me with walking.
The big ones for me that are very difficult to write about are my Essential Tremor and my problems with mental health - notably Bipolar Type 2, Anxiety and Depression. These conditions have shaped my entire life, and been almost impossible to live with at times. Thanks to increasing awareness with regards to mental health, some of the stigma surrounding Bipolar as well as anxious or depressive disorders has been overcome - but it’s still a difficult thing to discuss publicly.
As for the Essential Tremor, it’s a condition that makes my hands (and occasionally upper body) shake uncontrollably at times. It’s a very common movement disorder, but it’s also very visible at times and causes a LOT of comment. Which, sadly, makes the shaking even worse. So if you see me in the street and I’m a bit wobbly, I’m not scared or nervous (I get asked that all the time…) Heck, I’m (probably) not drunk, either - that’s another one I get a lot!
As you can imagine, being a visual artist with hands that often refuse to cooperate is something of a trial. I’ve developed a lot of patience over the years. Talking of patience, it’s going to take a little while to finish off the health/disability advocacy section of my website I mentioned above, so please bear with me until then.
Till next time,
Niss
xoxox