The battle of Whimsy Manor – my private challenges

I’m on Facebook at the moment. I have my IPad next to me running through a slideshow of my memes and the occasional pictue of me speaking at something interspersed with images of Mr Kitty and various artworks I have either created of have displayed at my little flat which is known to its friends as Whimsy Manor. Stephanie the iPhone 6S is downloading the latest iOS and Mr Kitty is at my feet, waiting for a well-deserved cuddle. I have music on and a glass of wine. The cooler is on and I am in my pyjamas but wearing the sparkly shoes I wore to my talk with Temple Grandin in November. I’ve just finalised minutes from a board meeting and am feeling quite content.  It mid-December in the busiest, most challenging, magical and amazing year of my life. I have spent the whole year in a limbo state between mental illness and triumph,  misery and victory. In the past eighteen months I have gone from being a barely-known Autistic author to a well-known advocate and sought after speaker.

I could very easily publish a post banging on endlessly about how amazing everything is and how I’m in charge of my domain and am confidently changing the world and what not. However, this wouldn’t be true. This post is more a reflection of how I dealt with the things nobody really saw much of – my private world.

This year has been the ‘year of Jeanette’ in a lot of ways. I signed a contract for, and subsequently wrote a book about mental illness and Autism, along with two coauthors, one of whom has become a close and highly respected friend. I spoke at th Asia Pcific Autism Confernece (twice), met and presented alongside one of my very few role models, Temple Grandin, wrote 99 blog posts (100 including this one), was published in all manner of magazines, journals and websites, had thousands of cuddles with the little black kitty therapist, Mr Ronnie, gained a profile as a social media ‘personality’ and had a bunch of wonderful movie nights with my friends. Plus I spent the entire year working full-time where I was unable to not so long ago. I met people, built my friendships. strengthen ties with my parents, gave lots of people gifts and received some lovely gifts from others. If I compare 2015 to pretty much any other year, it outranks all of them in terms of accomplishments and experiences. You might think it was one big party where I did a happy author dance constantly and felt proud of myself.

This year was the first year that my mental illness took the stage with me and featured in my writing as a specific entity. I discovered the website The Mighty this year and quickly became a reasonably regular contributor of articles to the site, mostly about my ‘other’ diagnosis. I have been in denial about this diagnostic label or ashamed of it (or both) for most of the twenty years it has been a part of my life. The illess is a head to define thing but most reputable, non-evil  psychiatrists call it a psychotic illness or schizophrenia. There is a lot of misinformation and stigma about schizophrenia and psychosis. Because of this I find it a lot harder to talk about in public but this year I set that aside and decided to own both of my main diagnoses.

My illness occupies a different part of my character than my Autism. Autism is almost like a friend, albeit a frustrating and misunderstood one at times. Schizophrenia, on the other hand, is more like a relative I don’t like who gets drunk at family gatherings and if I’m very lucky she just embarasses me. If I am less fortunate she destroys my house and everything I care about and I have to start life from scratch. So while Autism is a different processing system, my schizophrenia is simply a bastard.

Reflecting on this year, what I think of most is sitting in my flat alone (well, not really because you can’t be alone with a cuddly cat making his precious presence felt). I spent so many  weeks sitting on the couch, confused, thinking there were ghosts in my house, thinking Mr Kitty is a demon, not trusting my senses and trying to explain away terrifying experiences. The weeks leading up to each big presentation were all filled with doubt and worry and a strong sense that I would be unable to fulfil my expectations as an invited speaker… ‘What happens if I cancel APAC? What happens if I can’t go to speak with Temple Grandin?’ ‘What about my reputation if I cancel something?’ Combined with medication issues this was very stressful and worrying.  And the medication was an enemy in disguise at times. Ten days before I flew to Melbourne to speak with Temple Grandin my lithium level all of a sudden raised to a toxic amount and I was physically weak. Climbing one flight of stairs would leave me out of breath. Even getting dressed in the morning would leave me exhausted with sore muscles. How would I be able to stand on stage for an hour and talk to 1300 people? Thankfully a trip to Dr Google (closely followed by a trip to my actual psychiatrist) resulted in a reduction of the lithium dose which miraculously resolved within a week and I was able to present.

Every success was tempered by a struggle, Every win the result of a private battle. Today on the way home from work I thought about how great my life is but at the same time I spend most of my days scared and confused. I am terrified of the supernatural and see it everywhere. I see and hear things which terrify me and confuse me as I try to rationalise and explain them. So yes, 2015 was an amazing year, but a degree of effort and challenge went into the success. I don’t think this is confined to me either, I think everyone has that private life they don’t share where they lack confidence in themselves and have private battles to fight. I don;t want to complain about my experiences as we all have challenges to face. In fact when I reflect on it, I think I should be quite happy with the fact that I kept every single one of my speaking engagements and they all went well. IT s also a good thing to have to battle a mental illness enemy in my life as it keeps me humble and makes sure I don;t get too carried away with my success. So 2015 was an amazing, challenging and very interesting year. I’m interested to know what 2016 will hold….





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