Sunday, February 9, 2014

It's a fair cop, but Charles Dickens is to blame

I have to say, I'm kind of disappointed. When I was a kid, given to reading bleak and dramatic fiction, I didn't figure having a potentially life threatening condition would be so blah. Imagine you're a sad, misunderstood, frustrated emo child as I most definitely was, and you feel no one gets you and no one appreciates you. You live in a miserable little cocoon, unloved by all, until one day, you find out you're dying. Then, suddenly, everyone realizes how much you mean to them. They realize the errors of their ways and want to make up for lost time. And even better, somehow your sudden receipt of an expiry date crystallizes all your needs and ambitions, allowing you to rise above the confusion and uncertainty to be the best version of yourself possible. Gone are your petty frustrations and insecurities. The illness and your ticking mortality burn you clean of all but your best qualities. As the flame of your existence slowly extinguishes, you spend your days being as good, kind, and productive as possible, leaving behind a legacy of art, poetry and literature that will be remembered for generations to come.

The End.

Reality has been rather different. Of course, I am not 'dying' as such. Yep, I can somewhat hold out hope that THAT is wrench in the works. (Sigh, yes, I'm that warped.) Not that I'm a lot more mediocre than I dreamed I was. But yes, despite two life threatening diagnoses in a one year period - malignant thyroid cancer over the summer and a brain aneurysm in the winter - I have yet to achieve Dickensian hero status. I am not a better wife, daughter, sister, aunt, friend or Muslim. And while a few old and nearly forgotten friends have come out of the woodwork to tell me how much they care, a bunch of what I thought were fairly solid bosom buddies haven't even poked me to see if I'm still ticking. Ah well. And, as this blog has so amply demonstrated, no brilliance has poured forth from my fingers. While my beloved big sis Zeba has managed to turn her years of terrible/terminal health into beautiful works of love, intelligence and faith, alls I got is this blog and a website that I can't get off the ground. Seriously Zee, whatta fail.

But eh. I'm working on it. I've always believed that who we are is up to us. If I want to produce something valuable and useful, or do acts of service for those I love, then nothing will hold me back but my own lack of will. So, I shall continue to publicly humiliate myself with what will, in lieu of any other forthcoming efforts, be the threat of my 'legacy'. That is, writing this cruddy little blog. And, if writer wisdom holds true, eventually, I will drain all my latent brain crap and start to tap into something a bit more substantive in time. Or go out in a blaze of ordinary ordure. 

Wednesday, February 5, 2014

Give me liberty or give me death but don't give me logistics

So my aneurysm surgery trip didn't quite work out according to plan.

I got to Singapore fine - brain didn't go off as my plane lifted off, leading into a dramatic mid-flight death scene as had been feared. The nurses prepped me for the first diagnostic surgery. Stuck a canula in me. Loaded me up on meds. The works. Then the next day the docs came in and said "wait, you know that condition you told us you had way back when you contacted us two months ago, we finally got off our butts and looked into it and apparently, it's a big deal! People with that condition hemorrhage and rupture like crazy. It's a bloodbath in there! We can't do your procedure!" Ok, well, they didn't say it like that. But you get the gist. 

Then began 10 days of all kinds of ridiculous tests. I saw geneticists, cardiologists, dermatologists, allergists, opthamologists... I got MRE-ed, X-rayed, 2D echocardiogrammed... they came and took my blood so often I even stopped waking up for it when they'd come to take it in the night. In the end, they decided that my connective tissue disorder was too potentially scary to allow for any endovascular procedures, and oh, even more problematically, I'm allergic to the metal that the stent that was going to go in my brain is made out of. 

To the Singaporean doctors' thinking then, that only left one last possible treatment for my aneurysm, which was the big old craniotomy. You know, where after opening my neck for blood control, they crack open your skull, pry apart your brain and break bones inside your head to get access to the aneurysm, which they clamp off with titanium clips. That one is obvs way riskier. Higher risk of death, stroke, paralysis, brain damage, etc. So I said 'no thanks', and hightailed it back to Dubai to regroup and see what other options I have.

It's funny though, I was only in hospital in Singapore for 11 days, but man that felt like an eternity. I would get so stir crazy, many times a day I'd go stand at the window of my room and look out, pretending I was one of the lucky people wandering around below. Mali and I would wax poetic of the wonders of our bed at home. I longed for my car and my freedom. I missed my cats. I wanted food that wasn't bland and boiled. I craved activity so much I'd get dressed in the mornings and tidy up my hospital room in the afternoon. 

And now that I'm home, it's only been four days, but already my hospital stay seems like a distant memory. So much so that I am tempted to forget it all ever happened, including the aneurysm diagnosis, and just go back to life as usual. This doesn't feel so bad, this having a brain aneurysm thing. Sure, I get headaches and dizzy spells, and I'm acutely aware of the 'ticking time bomb' aspect of the bubble of blood in my brain, but, at least I'm free! The idea of doing it all over again - finding a new doctor in a new hospital in a new country who has a new promise of straightforward treatment for my aneurysm, arranging new tickets and new leaves from our employers is rather daunting. Death doesn't scare me. Logistics scare me. And boredom. Sigh.

But I am working on it. I've tracked down a dozen or so doctors around the world who've done some new treatments that are less invasive. Two of them are hopeful that I'd be a suitable candidate. Now I'm just trying to wrangle some insurance coverage for it all. Inshallah that'll come through soon and Mali and I will be off on a second medical adventure, hopefully one where we get good food, free wifi, comfortable beds, and lots of fun visitors to keep our boredom at bay. Oh, and a permanent solution to my aneurysm. Inshallahkhair.