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?