Ever Evolving

CaptaVitae Photography - http://www.captavitaephotography.com
Alter ego, Sparklemuffin, performing my act ‘Not My Illness’ . Photo by CaptaVitae.

My identity has been impacted by three important events in my life.  The first one, was when I was 25 and I started Art School.  The second one was the first time I came out as same sex attracted at age 36, and the last one was when I was diagnosed with ME/CFS nearly two years ago at 50. Each one of these things have impacted who I am and can’t be separated.

Before I went to art school, I was aimless in my life direction. I finished year 12 in 1985 and then got a job, because that’s what you did back then. No one in my family had been to uni and I only learnt there was such a thing as an art school when I was in year 12.  I finished school and I got a job in a bank, where I tried to fit in for several years but never really did. I was always a bit too different. I looked different and I behaved differently. The 80s were a very conservative time in many ways, and I was a bit ‘out there’. I remember I kept getting into trouble for the way I dressed at work. One of my favourite outfits was a man’s suit. I had gone to an op shop and bought one, taken the waist in and I wore it all the time, with my paisley shirts and my pointy shoes and my short haircut.  The bank manager didn’t like the way I dressed, most of the other women wore straight pencil skirts, heels and had big hair. I did this for about 5 years then changed jobs, I did a couple of other jobs I was equally not suited to.

During this time, I got it into my head that I wanted to do graphic design at TAFE and I developed a portfolio. I applied and didn’t get in, I then decided I wanted to try art school. This was a big deal because I was ‘old’ at around 22. It would mean giving up work and studying and surviving on a small government student allowance.  It was not what my family did, go to uni.  It was also a big deal because up until now I wasn’t the most overly confident person, I was quiet, and it was only some of my clothing choices that made me stand out. I worked towards getting into art school. I did the research on what was needed. I developed a portfolio and did some night courses and worked hard. On the third attempt/application, I got in. I didn’t get an offer in the first round of uni applications, I got in on the second or third round. The message to me being, I wasn’t the number one choice, I had gotten in by the skin of my teeth.

My parents were worried… I think, but I do remember my dad saying ‘Megan, I’ve been in the public service for forty years and I hate it, so you do what you want..’  My mum was uncertain.

Just before I turned 26, I started art school. I had found my people. There was about 86 of us first years, all selected for a range of workshop specialties, however in the first year we were all mixed together and did a range of topics together. We were an odd assortment of people, which made us all fit together. It was a place where there were plenty of other people to talk through our ideas with, and it was an environment to flourish in.  It was hard work, lots of people didn’t complete their degrees.  I loved it.

They were some of the most enriching years of my life, because I had worked so hard to get in and was convinced I wasn’t as talented as others, I was always on top of the work I needed to do, with a few people teasing me because of this. I was also one of the oldest students in my workshop and year. My workshop being textiles, where I learnt all kinds of weaving, screen printing, surface design…lots of stuff. I also did sculpture which I loved.

In my second year I met The Man who later became my husband. Upon meeting him, my mother vaguely threatened him. She told him if he distracted me from my studies, he would have to answer to her. He didn’t. My life with him is a whole other story. My mum had ‘come around’ and seen how much better I was within myself, for going to art school.

After four years of study I graduated. I had not only gained a degree; I had gained loads of confidence and many abilities. I had discovered what passion is, passion for making art. This remains my number one passion to this day.

After I finished art school, I went on to make lots of art and have been in very many exhibitions over the years.  Whilst I was at art school, I didn’t know what I would do next. I was there for me; I knew it was hard for artists to make money and live off their art.  After a couple of years, I went back to further study to do a diploma in teaching. I studied to become an art teacher.

What followed this, was not a career as an art teacher, rather a career as an educator in the community sector, which started off as me teaching literacy to young people who had fallen through the cracks of mainstream education. I worked in youth centres, libraries, wherever the young people were.

In my 17-year career I worked with lots of different groups of marginalised or minority groups, often with an emphasis on young people. I discovered lots more things about myself. I am good at listening and understanding other people’s points of view; I can understand their obstacles and I am good at helping others learn and overcome obstacles.  I can also write really engaging education programs. My super-power is I somehow make people feel comfortable and safe and this helps create a space for them to grow.

At 36 there was another big moment in the development of Megan.  I went away for an artist residency. I had been with The Man all this time; I had even married The Man about a year before. I had been working hard within the community as an educator and was much more confident in myself and my skills as a teacher. I had also kept making lots of art.

The artist residency was the first time I had been away from The Man, ever, in ten years.  Life had been stressful; we were poor and often struggled with money because The Man had some health issues and wasn’t always working. While I was away, many of the stressors lifted off me. I didn’t have to do much except make art.  Make art and contemplate.  Breathe. I did lots of contemplating and I realised that I had had a crush on a work mate of The Man.  The work mate was a woman. This realisation lead me to think about several things from the past and I concluded that I was attracted to ‘some women’, but I didn’t know what it meant. It wasn’t scary, it was exciting.

It was like I had been viewing the world from one angle and I had taken a few steps away and was now looking at everything from a different angle. I soon identified as a lesbian, as I didn’t feel any attraction towards men at all. The following months were equally hard and good/fun. I came out very quickly to all the people around me, the parents and the grandmother were the last to be told.  The Parents were worried that they would lose their relationship with The Man. They didn’t, he still sees them regularly, sometimes more than me. It was a hard time separating from The Man, I still loved him, but not like I should have. It was a slow taring and healing that went on for a couple of years.  He remains one of my best friends.

I started a new job only a few months after the residency and went into the job identifying as a lesbian. I wasn’t worried about being a lesbian, rather it felt like a huge piece of me had just been discovered. I really didn’t know before this. However, what happens with such big changes is you often look at your past and try to work out if ‘it’ was there and I think ‘it’ was, I just hadn’t realised.  In the following couple of years, I went out socialising lots, I met lots of women and started to do lots of work in the LGBTIQA community.  I was able to do this in my job and in my personal life. I even won several pride awards, as nominated by the local community for the work I did.

In the first few years I became so distracted, I didn’t do much art making. I turned towards performance. I started performing as a Drag King and did this for 12 years. Drag Kings are not as well known as drag queens, this made finding places to perform quite hard, especially in Canberra which is no where near as big as other places in Australia. As a king I ran a couple of lots of workshops and helped other kings over the years. Many of them performed for a while then stopped, leaving me on my own again. Mr Green Teal became an important part of me, my identity and my creative expression. I was a very visible advocate for queer people, especially trans folk.

During this period, a whole lot of other things happened that effected my identity. I was fully immersed in the LGBTIQA community and exploring my identity and working out who I was. Over time I realised that I didn’t really think that I wanted one partner and came to believe in polyamory. This is the love of more than one person. Another ‘thing’ that was and still is a bit ‘out there’ and not accepted by wider society. I had met my Girlfriend and she believed the same things. This put us on the ‘outer’ of the lesbian community. I had a friend who took her life and it was after this that my Girlfriend and I withdrew from the community a bit to take care of ourselves. Being Queer and an advocate/activist had taken a toll and I was unwell and tired. I had also enrolled in a master’s degree which I had been completing and I had a thesis to write.

Over the next few years I finished my master’s degree and my Girlfriend, and I lived a much quieter life. We were both experiencing various health issues. Somewhere in there I met my second Partner and had another relationship to both enjoy and maintain. I continued to perform as Mr Green Teal and came to realise that I am a non-binary or gender fluid person. Performing as Mr Green Teal helped me realise this. I also realised that I wasn’t really a lesbian, that I was/am attracted to people. I describe myself as Queer these days as to me this reclaimed word covers all the things/differences. I was performing when I could as Mr Green Teal and had joined up with another performance group and had begun exploring what it was like to perform as a much more feminine type of character. I did this for 7 years. My performance gave me a space to communicate ideas about gender and sexuality. It meant that I could express myself and through performance, advocate for other Queer folk out there.

I realise now, during this time my health had started to give me more and more problems. Over a period of 7-8 years I was slowly ‘unwinding’, running out of energy and could never keep up with what was going on around me. I thought it was my age, but I didn’t really know. I had one health issue after another and very many medical tests for different things.  I probably saw no less than 25 different types of medical professionals. As soon as one problem was sorted another one came up.

I really wanted to do well with my performance, but I couldn’t get enough practise. I couldn’t go to workshops and things to learn more, because I was always so tired. I had left a job because of health problems, had a break and then started another job. I had loads of days off sick in that job too. That job ended and then I had another job. Same thing, I was only working part time, but couldn’t keep up.

The middle of 2017 I lost my job due to the workplace restructuring.  I was unsure about what to do work wise after this. I stumbled around for six months trying to find work. I had a high level of qualifications and experience, but all the jobs advertised were way below the level I had been working at.  I also became more and more aware that I just didn’t have the steam to work a lot.

At the beginning of 2018 I went to my doctor and I asked her ‘Why is it that even when I’m at my most well, I still feel exhausted?’.  She said, ‘You have chronic fatigue’.  I came away from the appointment with a sense of relief. I had been struggling and struggling to keep up with people around me. I spoke to The Girlfriend who I live with and we decided that I needed to rest, she would support us financially.

I went back to my doctor a couple of months later to discuss my health further. I asked her if chronic fatigue, mean Chronic Fatigue Syndrome (CFS) or Myalgic Encephalomyelitis (ME).  The answer was yes.  This was the beginning of the third and most recent event which has impacted my identity, which I continue to work at.

What followed was a lot of pain and discomfort.  This was actual physical pain and discomfort and a lot of emotional pain.  I had to come to terms with the fact that I can’t perform anymore, and I am virtually unemployable as far as my 17-year day job went. There has been a great loss of identity and a lot of me wondering if, just maybe I can do that performance, only to realise there is no way I can.  I learnt that absolutely everything uses energy and drains me and doing something like a performance is a huge undertaking.

This has meant ‘walking away’ from groups of people I performed with. Like many activities in life, when you join a group of people to do something, sometimes you form friendships and bonds with individuals in that group, and these friendships continue, but a lot of the people you leave behind. I have left most of them behind, along with my identity. I think many people think I will get better and come back at any minute.

A similar thing has happened with paid work, in that I can’t participate, even at a voluntary level, because I just can’t think and process information like I used to. My cognitive or ‘thinking’ functions have been impacted by my disability. I often can’t connect things. I can’t think of words for things and my memory is bad.  One time I was in the supermarket and I had an eggplant in my hand, and I was thinking ‘What the fuck is this?’… I had to use the pictures on the screen of the checkout to work out what I was doing. This type of thing happens regularly, it was very scary when it first happened, but I’ve learnt not to panic and some strategies of what to do when it does.

Myalgic Encephalomyelitis  or Chronic Fatigue Syndrome, ME/CFS for short, is a chronic illness that has been around for quite a few decades.  The problem with it is that there no known cause.  Which means no cure, and only treatment for various symptoms, which vary from person to person.  I would have to say that out of all the things that make me ‘different’, out of all the things about me that carry stigma, this illness is the hardest to deal with.  I think a lot of reason for this, is because so much is not known about and there is a lot of bad, outdated or misinformation about it. I am very fortunate to have a great doctor who has an excellent understanding. 

I have chosen to focus on the 5% recovery rate, and to call it a Disability, this might sound negative, but it’s not. I call it a disability because it is. It is not something that I am likely to get better from and I must be careful in my day to day activity in case I get worse. People with severe ME are bedbound. The pots on the stove are heavy; I need loads of rest; I can’t walk very far and might need a mobility aid in the future; I’m super sensitive to light and sound and my brain doesn’t function like it used to. I think I’ve always been aware of the needs of disabled people. Being in the job I was in, the education I got and the people I met, I have always been aware of the way the world limits people with disabilities. The way the world makes it hard for people with disabilities to participate, now I am someone with a disability and I feel the limitations every day, it’s not me, it’s the way the world is built around me.

I am losing friends, I know I am. However, a few good people are better than a lot of people who aren’t really friends.  In the years leading up to diagnosis I was doing less and less socially.  When I first started with the performance group I was in, I got lots of invitations to private parties and events. I often didn’t go because I couldn’t. In the last year I was performing I turned up one day for our weekly practise only to hear everyone talking about the party they had been to the night before. It was for someone I really cared about, a milestone birthday. I hadn’t been invited and it really hurt. Probably because I never went to other things. They all probably thought I wasn’t interested or didn’t care or was a snob. Truth was, I was struggling and didn’t really know it and just couldn’t manage. There were several people over the years who extended the hand of friendship, I really wanted that friendship, but it was just so hard making it happen.

I also had to give up on attending any performances or shows that my friends are in or attending, because they are not accessible to me. They are mostly held at night, which is very hard. There are crowds of people, bright lights and lots of noise. All things that put my body under stress and make me unwell. If I leave the house, I need to spend as little time out as I can. I need to sit down the whole time and even then, going to anything, day or night can knock it out of me for days on end. I can plan to go to something, I can try and ‘save’ energy, but even then, my body is unpredictable, and, on the day, I might not be well enough. When I go out, people will inevitably say thoughtless things to me. Not that they mean to, it’s simply ignorance. However, this also makes going anywhere hard. I mean l look fine; I even look ‘great’. If people see me out, they assume I am ‘good’ or ‘better’, however I am out despite being unwell.  Now days I have all the time, but no time, because of how long things take me to do and the limited energy I have.

I have accepted my disability and I am making the most of what I have. I don’t think it’s useful to dwell on the fact that 5% of people get better, so therefore you can recover, so I should somehow try harder and live in hope. Or spend too much time wondering about whether the latest research will bring a cure. I mean, if these things happen, great, however in the meantime I want to do my best to enjoy what I can do. It is hard feeling socially isolated, but with the internet there are opportunities for me to form online friendships. It is hard losing real life friends, but it’s great that the friendships that last will be strong and the people will really know me well. It’s hard that even family members don’t really understand my disability, but in time they will.  It’s hard that I can’t do things at 1000 miles an hour like I used to, but it’s nice to be slow now and really enjoy the tiny things that many people miss. I may not travel the world, but I will know the detail of the environment around me intimately. I know that despite my disability I still have many things others don’t, I am fortunate in many ways. This is what I prefer to think about.

In the last, nearly two years, I have gotten back to my visual arts practise. I am so lucky to have my art and enough ideas to last very many lifetimes. I decided that I needed to try to earn an income, so I have been completing (very slowly) a Certificate 3 in Micro Business Management. I have researched and come up with products and items to sell; I’ve created an online shop and I’ve made a web page. I’ve been making lots of things and have lots of ideas for further art pieces. I ran a crowd sourcing campaign, which gave me the money as a start-up for my business.  All of this has been hard, yet I am determined.

I do all of this very slowly, and when I can. I listen to my body and that dictates what I work on, on any given day. I see this as a long term ‘thing’ and don’t expect to make any money anytime soon, however the most important thing is, I really enjoy what I am doing. It has helped distract me from the ‘hard stuff’. I have items I have made for my business, so cute things to sell but I will also be working on ‘art pieces’ which will have a focus on my identity. My new life as a disabled person, it will create a voice and presence for me, and other people with disabilities, other people with my disability. Art in all its forms is a great way of conveying ideas to the masses and it’s fun to make. While I sit at home making things, I have my pets. My two cats and my dog and they offer me endless love and cuddles. A lot of things have come to an end, but many things are just beginning.

Update… about 6 months later.

I realised that I cannot give up performance. It is something I love doing. It gives me a queer voice, it gives me a disabled voice, it gives a voice of the ‘older’ person (when most performers are much younger).  I basically realised that I can perform, with show producers who are ‘willing’ to work with my challenges. In other words, producers who will support and give people with disabilities a space. Getting to this headspace has been empowering. I now approach people with the attitude of ‘I have a disability and if you want to be inclusive you need to support me and other people with disabilities.  I come to performing with that attitude that I have a lot to offer as a performer and as a person with a disability to all concerned. This is extra education. This is extra work. By this I mean many people who don’t understand the varied needs of disabled people need educating and that’s hard. So, when taking on or wanting to perform I also must act as an educator. This means it’s extra work for me on many levels. As a disabled person and a queer person. I must work extra hard to make things happen, I don’t have a lot of the privilege’s others have.

This was hard to get to and it is hard to do. However, when I realised, I could perform, if people were okay about accommodating my needs, it felt like a weight had been lifted. I realised I had been trying to keep up for so long.  It’s not something that is easy to do. Now I am loud about my needs, and loud about my disability. I will still ‘pay’ physically for days, and literally not be able to do anything but rest for about a week before and after performing. However, this will balance up against the needs of my mental health, which has also been a big part of my health problems for years. I know I won’t perform often, but when I do, I will really enjoy it for what it is.

P1120224
Sparklemuffin during my Woodstock act. Photo by Superflux Media.

 

 

 

 

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