By Viktor Jakovlev

When I was growing up all I wanted was to be was an artist. I grew up knowing that everything has a price and no decision can be entirely selfish or frivolous. This meant that I knew growing up to be an artist was not ideal. Going to university and trying to make a living as an artist would be hard. If I were to be an artist, I needed to work out way to make a legit living out of it. And this was how I became an Interior Decorator. Obviously, there was more to it, study at Central Tafe in the Perth CBD after graduating high school.

 

I left that industry when I realised how unhappy it was making me.

From there I moved into another line of work as I got my mental state sorted. This involved beginning on the path to becoming an Educational Assistant. Meanwhile, I also completed my training to be a yoga instructor. My training gave me an opportunity to reflect and escape from the world into my own space of meditation and wellness. As I resurfaced and re-joined the world it was time for me to follow my true life-path and become a teacher. It was early 2013 and this is when I enrolled and was accepted into university. Actually, all three public universities in Perth accepted me into teaching courses, but I chose Murdoch.

 

I was finally ready to start growing up.

A week after I was accepted into university the seizures began. A month into my first semester, the tests and scans began. I finished my first semester of a four-year Bachelor’s Degree in Primary Education. Then my parents convinced me to change to a four-and-a-half-year Bachelor’s Degree in Early Childhood and Primary Education. To clarify the point here, I will state expected the graduation date of the degree would typically be for the end of 2017. Pretty quickly my doctors jumped in and started talking about limiting the number of units I could enrol in at any one-time to only three.

 

Growing up meant balancing life and study like an adult

For me, all I have ever known of study is how to manage it with an illness. One of the first things I did as a university student was find out what health and equity benefits were available for me. This meant things like registering my illness with the university Equity and Disabilities Office, applying for strategies and exemptions for assessments and providing advanced notice of ‘chronic absenteeism’. Once I had an Equity Plan, I began introducing myself to all my tutors and lecturers. It was clear to me that if the educators and assessors knew me and were familiar with me, they would be more inclined to be forgiving and understanding about my situation, when it became a problem. This was the best move I think I ever made and has definitely seen me through some of the tougher times at university. As it happens, it never hurts to have the people who run the show on your side.

 

Studying with an illness

As mentioned, I have never been a university student without being unwell. This has instilled in me an almost reckless abandon when it comes to juggling my studies with my health. I am overly practical in organising myself. I pre-plan my schedules for what readings I need each week, when my assignments are due and what is expected of me regularly. As soon as I can, I begin planning and scheduling how to complete my assignments so they will be finished ahead of their due date. The result of this is that when I am knocked down with my health, whether due to fatigue, pain or seizures, I thankfully do not fall behind. When I am in bed or hospital, recovering or having a chemo treatment I use my time to take small study sessions. It is in this way that I have only missed two lectures and five classes over the entirety of my degree to this date, and have only failed one assignment. I do not want to sound like I am bragging, but, well, I kind of am. I am proud of my commitment. This is my life and I want to make the most of this opportunity while it lasts.

 

I have never really thought about growing up

That must seem so strange to you, I realise, but if you look back over my life you can see I have just floated around. The idea of growing up has never seemed real to me, but not in the same way as some people who don’t want to grow up. My feeling has honestly come from a place in which I honestly have never seen too far ahead. The idea of reaching my thirtieth birthday, of having a career instead of a job, of owning my own home, well it never seemed like something that would happen to me. Indeed, I have made all decent and genuine attempts to work towards it. But actually, trying to think about what it would be like to ‘do grown-up things’ and ‘live like a grown-up’ seemed unachievable to me. Now with my potentially chronic need for regular chemotherapy, ongoing issues with these brain lesion growths and seizure activity which is likely to be regular enough to keep me teetering on the edge of a licensed driver for the rest of my adult life. There just does not seem much space in my future for things like a full-time job, owning my own home and starting my own family. There are a lot of people out there ready to comfort me and tell me things will change, but they are misreading the facts, choosing to ignore them, or trying to soften the blow for me. I am at peace and comfortable with these realisations, so why do others keep on insisting I change my ways and thinking?

 

Can I really handle growing up?

At the end of last year I took the first of what would be many blows. The news that, due to my ‘three-units-a-semester’ limit I would, in fact, be graduating at the end of 2018, not 2017 hit me like a shock wave. My mother had calculated this, but somehow, I had missed it. Before semester began this year, I was informed that this year I was to have two weeks of practicum placement with 2-3-year-olds and in my final year I would have an extra three weeks of placements (on top of the typical) ten weeks. This is difficult, given that my ability to access my placement school is heavily reliant on whether or not I have a driver’s license at the time, or whether my mother or someone will be able to taxi me. That person will also need to be available full-time as my carer as I get sick with the sudden and drastic change to my daily lifestyle and schedule. As you may recall I contracted a gastrointestinal virus this year, once on the early years placement, as well as a pretty nasty cold virus lasting six-weeks on account of it being right after my chemotherapy infusion. Nevertheless, I am approaching a pinprick of the light that could be the end of this tunnel. For the first time in, maybe my whole life, I am beginning to see a potential for me to grow up. To adult. To have my own life. Except Lupus.

 

Lupus has made it hard for me to grow up

I now live in fear of what it means to be a grown up. I know a full-days work wears me out so much I cannot get myself together to eat properly or clean myself. Actually, I cannot clean myself most days anyway due to my myriad of allergies involving my skin, water, chemicals, neurons and heat. If I have a license, this does not mean I should always be driving. Alternately, nor does it mean that I am completely okay to take public transport. I am so scared of what I can and cannot do without someone’s help that it frightens me. I recall the brave, capable girl of 21 who ‘just has Systemic Lupus Erythematosus’ and I envy her. Now I am almost 29, eight years later and I am trying to convince my parents to let me go camping overnight in the bush. It is almost coming to an actual argument. Can’t they see I just need to prove that I can do this, that I can be just as strong and independent and able as everyone else?

 

Can I avoid growing up?

Some days I wonder what it would be like if I just stayed at university. If I did my Master’s Degree, and then a PhD. I am smart enough. My applications would be successful. The research industry is crying out for education research in Western Australia. And it would be safe. I would not be happy. All I want is to work with children, be a teacher. I am good at it. I like children, as they accept you as you are. They do not judge you like adults do. Children have not yet learned how to be prejudiced, manipulative, calculating or shallow yet. May this is my issue about growing up? No, I do not honestly think this is the case. Maybe I will not make my thirtieth birthday, from a lesion grown too big in the wrong part of my brain existing undetected for too long. It seems that is the only real way I will avoid growing up. But I do want to grow up. I just want to wake up in February 2019 and know that it is all over. Is that too much to ask?

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