I've been taking a break from blogging for a while because it seemed to me that the world had bigger problems than autism and Asperger's syndrome. I figured that eventually things would go back to normal but now it seems they never will. Too much has changed.
One of the key moments was the loss of one of my good friends, a fellow blogger with autism who I met a couple of decades ago when we all used to call it Asperger's. We never met in person, though we once got within 100 miles of each other before illness intervened.
Her passing hit me hard, but it's odd. It didn't hit so much immediately, but it's certainly been hitting me over the past few weeks.
I'll try to explain that.
|Kate. from her facebook pictures, June 2014 (with a few colour tweaks)|
I think that initially it's much easier to lose someone online than it is to lose someone you see every day in "real life". It's because with people who are online, we're used to them being offline for long periods of time. What I've learned however is that the long term effects are just as devastating.
I'll see something and think, "oh wow, I'll have to tell Kate about that..." and then realise that I can't. I'll be doing simple things, daily tasks, for example hanging out the washing and I'll remember that she thought it was weird that people in Australia hang their washing out instead of putting it into another machine for drying. It's the little things that hurt.
I wanted to talk a little about Kate. I think it's important because there are so many other people out there like her, and because sometimes talking about things can often help me to get to a better place in my own head.
When I first met her, Kate was a very outspoken young lady who had strong ideas about what was right and what was wrong. They were her personal ideas and though I don't necessarily agree with them all, she was incredibly defensive of them. In many ways she was much more caring and forgiving than I.
Kate could spot offensive words or turns of phrase in songs, TV shows and everyday speech. At times, I thought that everything was triggering for her. She would instantly jump on a song that I like for the tune and find fault with it - and she could take the head off even the best "well-wishers" if they put a word out of place. It was okay though, I learned a lot from this.
Kate seemed to happily approach the shadiest of individuals to talk to them and bring a little joy to their lives with her jokes and puns. She was the very opposite of judgemental.
Autism brings with it a whole heap of challenges but the challenges that Kate faced were some of the worst I'd ever heard of. She didn't seem to be bothered by many of the usual issues which make social interactions difficult for autistic people such as eye contact but she had a lot of "invisible" sensory challenges which made a lot of everyday activities impossible for her.
Kate had high sensitivity to noise, smells, touch and sight. Going shopping could be a nightmare for her. We talked about options such as dark glasses and earplugs but she felt outraged at having to make these changes when other people did not. It took me a while to really understand her anger at this but I did understand. It was unfair.
My constant search for solutions didn't help either. Most of the time, she just wanted someone to listen -- but of course, "solving problems" is very much a male condition. It's something that we do subconsciously. I'd also try to listen though but my listening skills were so poor and being "emotive" just doesn't come naturally to me. Sometimes I think that by trying to be calm, I just fuelled her anger. I think she wanted others to feel the same level of outrage.
One of the biggest issues towards the end of her life was the year-long "chair saga". She needed a new chair but was unable to simply purchase one. She had back issues and needed to get something suitable, something tested. It was difficult for her to get to the shops to try chairs out and even when people donated chairs, they weren't comfortable or non-allergenic enough.
It's easy to see why people stopped trying. For the rest of us, it's just a chair right? We can sit on anything. To most of us, even an uncomfortable chair is better than "no chair". In Kate's case, she simply did without. For a year.
Every now and then, when I hadn't heard anything, I'd ask, "so did you get a chair?" This would usually be with a barrage of insults, anger and anguish... and after a few months, I simply stopped asking.
There were other people around helping Kate. Great people who were far more active than me. People who lived nearby. People who took the time to help her.
I'm not planning to name, names. You know who you are and regardless of what happened or how she spoke to you in those last months, it's important that you know that Kate was grateful. She mentioned that in chats. You were good friends and she knew that she could sometimes be hard on people.
When Kate began to get sick, she talked about her symptoms. People urged her to seek medical advice but of course, her challenges in the real world made this task difficult. She treated her illness in the same way that she treated the chair. She put off doing what was necessary for far too long and by the time she acted, it was too late.
She was only 37.
Kate. You left this world far too early.
I'm ending on an a quirky note, because that's exactly what Kate would have wanted. Tasteless though you might think this is, she loved puns and I'm always going to remember her when I hear a pun from here on out. Wherever you are now Kate, I'm sure you'd be googling puns about death.
Rest in peace, gentle soul. I will miss you.