Atarama

Then it dawned on me.

That's normal.

It seems like an almost universal characteristic for humans to believe they're the only one of their kind - at least for some period of their lives. But at the same time, each of us believes that we're also the only ones who feel that way. Some of us search for others to 'fit' with, some of us try to enhance that uniqueness, some of us try to reshape our identities to fit in better with what we perceive as being right, normal, acceptable, whatever. I'd never really had the energy for working to 'fit' with any particular group - instead I kind of assumed that eventually I'd grow into an adult identity and would somehow begin to blend in. That never really happened. Instead, I've mostly come to accept that I'll probably always feel like this - and that my feeling like I'm not 'one of the gang' is probably something that will work in my favour. It lets me make decisions based on what I think is the best response to a situation, rather than what others seem to want me to do. It lets me build relationships with a wide range of people, not limited to people who also appear to be part of whatever group I also think I belong to. And I think I've managed to develop a concept of my identity that's based on who I am rather than what group I identify with. And I find that the people I connect with the easiest are usually people who also seem to have decided to construct their personal concepts of identity the same way... but I might be wrong about that, because I can only ever work from what I see on the outside, not what's happening on the inside. Even so, I still wish sometimes that I were better at fitting in, particularly in the work environment. I make decisions and do things and then realise - I've marked myself out as not being an obedient member of the pack, and my team mates look at me with an expression that says: we're not sure we can trust you. Stupid things, like at a conference we agree to meet at a specific time & go in to dinner together, but I forget and go early on my own and start chatting to some people from a different department and by the time the others stop knocking on my door & come to dinner themselves, I'm happily settled in to a table swapping noisy stories with four sales reps instead of sitting quietly & politely with the members of my immediate team - like they're all doing. It just seems like pack behaviour that I've really never mastered. I can't see the point. And so I don't get included in the girly chats and the gossip and then I don't feel like I belong. It's an odd thing, that I should have a sense of identity that depends on myself as an independent individual, but still feel like I'm missing out on something by not being one of the crowd. Oh well. I guess you can't have it all, right?

The one instance Ata can remember of her sleepwalking occurred when she was aged about 11. Picture this setting, if you will: Ata has a room of her own. Her brothers share a room. When someone is staying overnight (as happened occasionally, because we lived about half-a-day's drive from the middle of nowhere and Premier Inns become hard to find once you get to that distance from civilisation AND workmates of Ata's father were often passing through) - Ata was usually displaced to the floor of her brothers' room while the guest got Ata's room. Also, the place Ata lived was hot and tropical and a long way from civilisation, so Ata (and her brothers, but they're irrelevant to this story) typically slept in just her knickers.

Let me rephrase.

Ata usually slept in HER knickers; her brothers usually slept THEIR knickers. But being boys, they would say "undies" instead of "knickers". Also, theirs never had lacey elastic on the edges. Why do girl's knickers come with that lacey edge elastic? It's scratchy and stretches easily and tears away from the rest of the knickers if mishandled. Ata would have preferred to go about in just knickers most of the time, but her parents insisted on her wearing outer clothes when leaving the house or when non-family members were present, and at eleven Ata was beginning to develop some self-awareness about the need to wear clothing. Anyway. This story is not about young Ata's knickers. Back to the scene. Guest is staying in Ata's room, Ata is sleeping in her brothers' room. This was the one time Ata went sleepwalking - into her usual room, then (bizarrely) into the wardrobe. This is where Ata woke up - sitting on the floor of her wardrobe, wearing nothing but her knickers, while a man Ata had met just that day slept peacefully between Ata and the doorway. To exit the room and return to the safety of her brothers' room, Ata had to creep past the sleeping guest, open the bedroom door, and scoot into the room next door. How is it that when sleepwalking, one manages to move like a ninja? On entering the room Ata had opened the bedroom door, skirted around the bed, and entered the wardrobe without making noise to wake the guest. Exiting the room, however, was a monumental journey fraught with the tension of potential embarrassment. Ata put one careful toe down at a time as she crept across the bare wooden floors. Years of living in wooden-floored houses had blessed Ata with light feet, and she arrived at the bedroom door successfully - it wasn't until she tried to turn the doorhandle that the guest awoke and Ata fled the room in a rush.

The next morning, he asked about Ata's appearance at the bedroom door, and Ata was forced to confess - in front of the guest and all her family - that she had sleepwalked into the wardrobe.

"Oh!" said the guest. "So that actually happened! I thought it was a dream!".

That was the one and only episode of sleepwalking Ata can remember, but she took away one important lesson: people woken from sleep are not really sure what's real and what's not. Therefore, if she ever finds herself standing semi-naked in a stranger's room again, she will DENY ENTIRELY THAT IT EVER HAPPENED.

Want to know an odd thing, blog? Ata is jealous. Jealous of her best friend, who has almost died with a life-threatening, aggressive cancer. Jealous because it will be cured. Jealous because she is having the same procedure that would offer Ata a cure for Crohns, if she were sick enough to be offered it. Jealous and hoping that the next time Ata has a flare, this therapy will not be cutting-edge but standard treatment... and hoping that the next flare becomes serious enough to warrant such intensive treatment before it does too much lasting damage to Ata's already fairly shredded flesh. Jealous and wishing it had been invented 15 years ago... or 13... or 11... or even just 7. Actually, 7 years ago probably wouldn't have done me any good, seeing as the last flare took 6 months to even become serious enough to get me into the adalimumab trial... and was eventually controlled with the steroids that have never helped before. At least we know I don't respond to adalimumab, I guess. That means they won't bother with it the next time around... and if adalimumab doesn't help, infliximab won't either - so that's another one not to bother with. Methotrexate does help, but only in conjunction with steroids and I suspect the medical world might be reluctant to put me on yet another course of methotrexate... particularly if the stem-cell bone marrow transplant is established as offering a long-term cure for Crohns, that would mean no more ongoing azathioprine prescriptions to maintain remission between flares, no risk of liver damage or white cell suppression from the azathioprine, no routine blood tests to keep an eye on liver function and cell counts, no risk of short-bowel syndrome from repeated surgery, no need to cut bits out of me at all, and no more hunting for a new drug with each flare. How far has medicine come in the last 15 years? When I was first sick, it was cyclosporine & steroids & mesalazine & azathioprine that eventually induced remission - along with all those horrific side effects, the shivers and the hair growth and the nausea and the swollen face and skin like tissue paper. TPN had to be prepared in-hospital - now I work for a company that produces it as shelf-stock so patients can stay on it long-term without needing to be hospitalised... so even if the forecasted outcome of me losing my entire bowel and being unable to eat does come about, I'll still lead a more-or-less routine life. Now - if I get sick hard & fast like I did the first three times, it could be as little as three or four months of treatment and I get the promise of a cure with no hanging threat that ALL THIS will happen again. Just like the Amazon. I'm glad she has that promise. But I still want it for myself. Is that so unworthy?

When I say "friend" I should really say "acquaintance". I went to highschool with her, but we weren't exceptionally close. She got in touch via Facebook not too long after I set up an account, and we did a little bit of catching up... she'd been married a few years, had stepkids and I think at least one of her own, living in Brisbane, happy, busy, etc... but we didn't have much communication after that. Then a message popped up in my newsfeed - under her name, but the poster explained she was Sylvia's step-daughter, just putting a message up on her stepmother's birthday as a way of staying connected to her. That was when I realised she'd died. I went to her profile page & read through her newsfeed history, wondering what had happened. And the whole story is charted out there in messages from friends and status posts... Sylvia is very tired... is home sick with the kids... going to doc to find out why I'm so sick... sending me for tests... ER don't know what's wrong... more tests... surgery... feeling better... feeling worse... messages from family: Sylvia is in hospital... would love visitors... doing better... more surgery... fighting... x-rays... still fighting... we're keeping her comfortable... messages from friends: get well... thinking of you... good to see you the other day... glad you're feeling better, you'll make it through this... sorry you're things aren't going well... sorry I wasn't around more often... RIP... thinking of your family... all over two years. Along there way there was one mention of what killed her: a brain tumor. Facebook is a strange thing. Once upon a time, all those thoughts and fears would be temporary, lost on the wind and remembered only by those whom they belonged to. But now there's a record. A fragile one, admittedly. But a record nonetheless. Is it what I would want, if I were dying? My story, told in statuses and I'm sorry's and short messages sent on my behalf, and left to be read by anyone who cared to? Would I NOT want that? Strange. If I had died a year ago, it would have been swift and sudden - no history of temporary recoveries and slow declines, no hopeful test results to post or be read by passing acquaintances. Is that important to me? I'm not sure. Probably I'd prefer that my health history wasn't charted out for posterity and random perusal - that's why I put very little up about being unwell at all. Strange. Just... strange. Very, very strange.

When I was perhaps about 7 or 8 (or was it 5 or 6?), we went to the beach. We lived on an island, so going to the beach is not that unusual an outing, really - most of our outings involved the beach in one way or another. If we didn't go to swim we went to fish or roll down sand dunes or collect shellfish on the rocks. On this occasion, someone was visiting us - a woman, I don't remember who. She might have been a friend, or maybe even an aunt, but I don't remember. We went to the beach and cooked sausages over the fire for lunch and afterwards, when the tide was out, my Dad and brother and the maybe-aunt walked out on the long spit of rock revealed by the receding tide. I'm not sure why I was left behind... maybe I wasn't going to go with them, but changed my mind. I took a jar with me, to catch fish in the rock pools. And along the way - about half way between the beach campfire and the people I was catching up with - I spotted a clownfish in a puddle of water in the rocks. I went to catch it in my jar - I'm not sure what happened, here, but I know it finished with me dropping the jar and cutting my hand on the broken glass. In the first flash I was disappointed that the fish escaped - then I realised I was cut and bleeding. The blood ran up my hand at first, following the crease of my palm, then spilled over and ran down my wrist. And I felt very small and alone and somehow betrayed that no-one was running to my rescue. I stood up and waved to my Dad out at the end of the rock spit - waving my bloodied hand in the hopes he would see it and come back for me. I was caught in indecision - what to do? Catch up with the others, or go back to the beach? I settled on going back to the beach, and that was the end of the drama.

Memory is so unreliable. I know that event happened, but the details are fuzzy and fading into static. Who was the woman walking on the rocks with my Dad and my little brother? In the memory last night, my mother stayed on the beach with my other smaller brother - but perhaps she didn't. Perhaps the woman in the memory was my mother, not a visitor. I don't remember why I dropped the jar - but I do remember a time when I could remember what happened. What was the reason I was hesitant to go back to the beach? Was it because my mother had stayed behind at the campfire, and I knew she would be cross with me for taking a glass jar that could break and cut me? Or was it that there was no-one back at the campfire, everyone was walking on the rocks and if I went back to the campfire I would have to patch up my injury on my own? What I do remember clearly is the thin trickle of blood running over my wrist, the feeling of panic and the sense of being let down by my family - even as I knew that they didn't know I'd been hurt, I'd hung back of my own accord and stopped for the clownfish even though I knew I was supposed to be catching up with the others. I remember very clearly the realisation that I could have been much more badly hurt, and the way that moment of clarity felt when I'd made the decision to go back to the beach for the first-aid kit.

In some ways the lack of memory is comforting - I know that other memories will fade and die the same way, so the memories that sting and hurt and embarrass now will become blurry with distance as the years seperate me from them. But even a day later I can't shake the lingering sense of confusion over the memory that came to me last night, and I keep revisiting it to try and bring the fuzzy parts into focus.

What I can tell you with complete certainty, though, was that I NEVER, EVER took a glass jar to go rockpool-dipping again.

But that's not the end of it. Lists of things to take back with me, lists of stuff left in Adelaide that I want to have here, every day I think of a new list. I'm not really a natural list-user, though. I think them up & rehearse them over & over in my head instead of writing them all down. If I write them down, I forget that I've written them - or I put them somewhere safe & forget where they are. Should we stay with Mr Ata's parents or my brother? I know Mr Ata has asked his parents, and they said yes, but maybe we should stay with my brother. I think Mr Ata's other brother will stay with his parents as well, that'll make for a crowded house. Plus, I'd like to spend some time with my brother & his wife. But I don't want to be a nuisance, and I know he works crazy shift hours, and I also know she goes to a lot of effort for guests. So maybe we should stay with my in-laws. I have floated the possibility of not staying with anyone & going to a hotel instead, but I suspect that someone will get offended if we do that. I think I've mostly convinced Mr Ata that we should hire a car, so we won't be dependent on buses/lifts/borrowed cars. Plans, plans, and more plans.

It was three years ago today that we left Oz-tralia to see what was on the other side of the world. It seems like just yesterday and forever ago all at the same time. Was it a good idea? I'm still deciding that. I have job opportunities I wouldn't have had at home, have met excellent people, done much travelling... but there's that small and insistent voice that says I have, somehow, made the Wrong Choice. I wonder if I will ever shake that voice. It doesn't seem to matter what choices get made, it's always there, whispering away... wrong, wrong, wrong. Left behind my friends and family, left behind the life I had... wrong, wrong, wrong. But before I left, it said the same thing. Living in this ongoing life where nothing changes... wrong, wrong, wrong. Didn't travel when I left Uni, didn't do as I planned, wrong, wrong, wrong.

Screw you, voice. You're freaking wrong, and your opinion is useless.

What am I going to do, make every choice and decision based on the fear of regretting something in the future? All will be well. The friends that are worth having will still love me when I go back. I have met new people, made new friends, all of whom are important and valuable and good to me. I'm only even hearing that voice because I spoke to the Amazon on the phone today, and despite the fact that it was good to talk to her, the realisation that she has her own family, her own children, her own husband, her own life that does not require ME is painful. Even though I know she values me, even though I know she misses me, some selfish and stupid part of me wanted, arrogantly, to be... I don't know, needed, maybe? When I was first sick - almost 15 years ago now, has it really been that long? - she came to see me in hospital. I remember her sitting beside me and saying, if there was anything she could do - if I needed a kidney - she'd give it to me, if she could do anything to make me better... and I haven't reminded her of that since she's been sick, but I can't help but think - just as well I didn't need a kidney, reckon you needed both of yours in the end. Maybe this is the thing, this is what feels unfair - that she could offer to do ANYTHING for me, and I can't offer it to her. Not really. She has family to take care of her, and I'm so many many miles away. I can't even offer to be tested for a bone marrow transplant - between my own medical problems and the whole being-on-the-other-side-of-the-world thing AND the extraordinarily slim chance that we'd be a good enough match, there's absolutely no point. This is a weird thing - apparently, even though the transplant procedures now use stem cells rather than actual bone marrow, you still have to be matched. Probably because they're adult stem cells. I don't know, and the realisation that I don't know reminds me that the clinical part of my life is falling further and further behind me. I feel like I woke up, and suddenly discovered that I was All Grown Up. My friends have kiddies, and have changed careers, and have sold their starter homes & moved to their bigger family-friendly houses. We are All Grown Up - except I still live in a little practical cost-effective house with my cats and am contemplating learning to hang-glide and my major career achievement is writing a nifty little macro that no-one's used yet. I feel like I lost my 20s to dodgy health, and am only now doing and feeling the things that everyone else did and felt 10 years ago. And I am reminding myself that I made Good Choices for Good Reasons, and I will continue making Good Choices for Good Reasons, and everything will turn out alright in the end. I am not wrong, wrong, wrong. If I had stayed in Adelaide I would be frustrated by crappy jobs and hot weather and not having travelled, I would be pulled through the wringer by my Friends Around the Corner and their crazy divorce, I would not have met many excellent internet people, I would not have visited Norway or Poland or France and I would still feel far from the Amazon and unable to help.

And I would be a long way from a decent hang-gliding school.

So take that, stupid voice. I will defeat you with optimistic interpretation of the facts, the calm & logical consideration of issues, and getting more sleep. Tomorrow will be a better day in which I will not feel hopeless and old before my time. Hey, want to know something weird? Today I taught two people to thread and use a sewing machine. Of all the things I would never have expected myself to do, "teach sewing skills" comes in as only slightly more likely than "accidentally make contact with intelligent alien life". But that's what I'm like. I do stuff. Stuff I would never expect me to do. Because my life has MANY FREAKING POSSIBILITIES and any whispers to the contrary shall be diligently ignored as an artifact of insufficient sleep, medications & variable health, and possible lingering effects of brain injury. So there.