I’ve been thinking a lot about what to do with myself next year. It’s been almost two years since I got sick, and I’ve done a lot during that time. But my focus has always been getting back to work. How?
It’s really hard to make plans when I simply don’t know what’s going to happen with my health. Ankylosing Spondylitis is unpredictable, and so is my situation. It might be that I get my MRI soon, and finally get access to a TNF inhibitor, which could change my reality considerably. It might be that I stay the same as I am now. It might be that my illness worsens, in which case, fulltime work is not going to be an option.
While that’s a terrifying thought, it’s scary enough to consider that I might not even see any improvement. I do try not to think about what my life was like before I got ill, because that only makes the reality so much harder to deal with. But sometimes I remember the woman I was and it makes my heart hurt like I lost someone very dear to me. Like I am grieving.
Beyond the heartache of it is a very real sense of anger and frustration. This is not how I want things to be. I’ve had to put so much on hold, and let so much go. I’ve had to reconfigure my life completely. And while doing so has brought positive things too, it’s hard not to get the end of my tether on it all.
So yes, I am focused on ways I can move forward. I am lucky that I can still manage to write, because writing is what I always wanted to do anyway. It’s a balancing act, because sitting at a computer can be exceedingly painful and tiring, and I have to make sure I only commit to limited amounts and liberal deadlines.
My medical certificate says I can be expected to work fifteen hours or less a week, with fluctuating ability. That’s fuck all, obviously. The certificate also says I’m not expected to be able to go back to fulltime work within the next two years. I intend to prove that wrong.
I had hoped that I could do some post-graduate study next year. I’ve always planned on doing it and I thought it’d be a good, flexible way to make use of my time.
Unfortunately, it won’t be financially possible. The National government removed the Student Allowance for post-graduate study, leaving only the living costs section of the student loan available as support. This is about $175 a week, which I guess you are expected to supplement by working as I don’t see how you’d be able to live otherwise. And it wouldn’t be physically possible for me to study and work, so that’s not an option.
I checked in with WINZ about whether it would be possible to study and stay on my current benefit. The basic answer is no. The study would have to equate to less than ten hours a week, and most papers I’ve seen recommend twelve, so even if I did one at a time, I can’t see it working – and post-grad would be much more.
I find it quite incredible that it’s a financially better option for me to stay on the benefit, than to get higher education and contribute to the economy in a myriad of ways as a result. Even if I were totally healthy, post graduate study looks like a really difficult option. I worked fulltime while I was doing 300 level papers and that was hard enough.
It really doesn’t seem to make economic (or any other) sense that we’re not supporting A) people to get higher education and B) people with disabilities to get [back] into work.
All I want is to move forward, and it feels like rock/hard place territory. Maybe I should look into being a bounty hunter after all. It seems to have better perks.
Things I’d do if I had the money and the health.
The Aspire course at Outward Bound.
This lyric poetry post-grad paper at Massey University.
Anything through the IIML.