Things Writing Taught Me About Living with Chronic Illness (and vice versa)

I wrote my first novel manuscript "See No Evil" between the ages of 13 and 16. It is, by a number of people's accounts, one of the funniest novels ever written. It's just a pity it was supposed to be a psychological thriller not a comedy.

When I got really ill as a teenager, and had to leave school for a while, my mum suggested that I finish writing it and send it off to a local children's book competition. The entries were read blind, a fact I think worked mercifully in my favour, as I now cringe in embarrassment at what the judges must have thought reading it against the entries of adult, professional writers. That particular manuscript will probably never become anything other than a file on my computer, but I have since written others that will hopefully turn into "real" books at some point (with some luck and hard work.)

Writing all of them taught me several things, one of the most important being: you cannot write a novel in day. Even if you are an extraordinarily fast typist, or dictating your work, trying to write 50,000+ words in a day will leave you with crippling RSI or an MIA voice. Writing a novel has to be done in chunks, whether it's a little bit every day, or a little bit whenever time allows. I wrote that first novel primarily in the school holidays, so there were long gaps between picking it up and putting it down. Finishing it was a matter of not giving up, doing it a little bit at a time, even if it felt like it was taking forever.

These days, a lot of tasks take me a long time. When I have people coming over, I have to start cleaning up several days in advance because I can't do it all at once. And no, my apartment isn't excessively dirty or untidy! Making soup is a three day process - Day One: Chop onions, celery and other fresh vegetables. Day two, boil them in stock, along with any canned or frozen additions. Day Three: Puree, and you finally have soup. There used to be a fourth day - strain the soup before serving, but then I realised life is short and I'm not on an episode of Master Chef (plus I tell myself the stringy bits are extra fibre.) I'm often asked "Can you do stairs?" and the answer is "Yes, it's just takes a while." The same goes for getting in and out of cars.

The thing is, none of these tasks would get done if I didn't start. Nor would they get done if I gave up in "chapter one." Sometimes you have no option but to keep going - there's no alternative but to keep climbing when you’re halfway up a staircase - but sometimes you do have the choice to give up on tasks, and the motivation to keep going has to come from you. As tempting as it may be to try and do everything all in one go, it's just not going to happen when you're ill. Even if you manage to push yourself enough to complete the original task, you're going to screw the rest of your week up by making yourself too tired to do anything useful the next day. Writing has taught me the patience to pace myself. Or perhaps chronic illness has given me the patience to write.

Another thing writing has taught me is that there doesn't always have to be a tangible reward for the things you do. Ask the majority of writers if they make enough money to live on, and the answer will be no. Ask them why they still want to write, and they'll stare at you with a vaguely perplexed look indicating the idiocy of the question and answer something along the lines of "How can I not?" The writing itself is what drives most writers, not the possibility of monetary success (though I bet they'd all say a bit of that would be nice too.)

I've made some money from writing and associated work. Not a lot, not even a medium amount, just some. But that's never been a reason not to do it.

I don't know if I will ever be well enough to be able to work enough hours in a week to support myself financially - in any job, not just writing. I do know that I need to work at least a few hours a week, and spend at least a few hours writing, to keep myself sane. The monetary rewards from those hours are not a lot. But the intangible rewards are priceless.

Finally, you don't have to know what's going to happen for things to work out okay. Each time I've sat down to write a novel, I've had an idea of a few scenes that I want to include before I get to the end, but haven't had a clear idea of how to fill in the blanks in between them. Invariably, I've ended up writing other scenes that turned out better than the ones I originally had in my head, writing thousands of words of rubbish that made no sense and had to be deleted later, and followed plot bunnies for pages at a time in the hopes that they'd lead me somewhere useful. At the end of it, I've either finished a "manuscript" or written a "something that will never see the light of day, but taught me some lessons anyway."

I don't know what's going to happen with my health. Not just long term; most of the time I don't even know what's going to happen with my health in the next couple of hours. But so far it's all worked out okay anyway. I'm hopeful that things are going to continue to work out okay, even if my story is turning out to be something quite different to the one I thought I was living originally.

Thanks for reading,

Little Miss Autoimmune.

Rest in Peace, Moira

A few years ago, I found having these illnesses a very isolating experience. I'd gone to a support group once or twice before, but hadn't really connected with anyone. Then I went to one, and spoke to a woman, Moira, who felt the same way. She and her husband gave me a lift home, and on the way we talked about how it would be good to be able to meet up with more people in the same position, and we exchanged contact details, but left it at that.

A few months later, a couple of other women, Sarah and Alice got in contact about meeting up, and I passed the details on to Moira. The four of us met for dinner. Meeting up was a bit awkward, and we described the experience as being a little like going on a group blind date with strangers, but out of it, Sarah and Alice set up the Super Young Arthritics of New Zealand facebook which has become a support to many people, not only in New Zealand but around the world.

Not long after that meeting, I was admitted to the rheumatology ward overnight, as I was starting on a new medication and had a high potential risk of a bad reaction to it. I was pretty scared but knowing other people who'd been through the same sorts of things made the experience easier.

This week, Moira passed away. After those two meetings, I only met up with Moira in person a handful of times. I didn't know her well, and I hadn't seen her for far too long. She came into my life at a time when I really needed to meet someone who understood, and meeting her led to many people gaining support and understanding, so I will always remember her for that.

The night I spent on the ward, I wrote this poem about the experience, and about that meet up.

Go well, Moira.

90 at 25

My body becomes a picture

of a skeleton
with hands
bigger than its head
and an ellipse
for a pelvis

The doctor records
my pain
with scratches
of a blue pen
and draws bubbles
of swelling
on my fingers and wrists

I’m asked
to consider
whether I would
prefer quality
or quantity
of life

I make friends
with a superhero
who describes his body
as Gotham City
and his rebelling joints
as mistaken Bat Signals
calling an overzealous
immune system

I go on a group blind date,
no red carnations
to recognise each other.
We watch for those
with limps
or extra metal
appendages

We shy away
from our elders.
We read our future
on their palms
when their clam-shell fingers
are pried back
revealing distorted knuckles
and shortened lifelines