borg and proud
My referrals tell me that people sometimes come here looking for info on hydrocephalus. Odd, since I don't think it's something I've ever written about in detail. It fills me with a wary sense of responsibility - what if a parent of a newly diagnosed child comes looking for information or reassurance?
It's been an interesting process of assimilation. I started as a little kid with all the check ups and prodding feeling special, but put upon. Then came school and the teasing - "put your head in a washing machine?!", "TUUUUUUBE! Oi, tube - if we push you over will your tube bend?"
So it was that I stopped mentioning it and then - a few years later - stopped considering it. I'd been discharged for good, my shunt stayed in but I didn't need it or any further treatment. I went to uni, graduated, started work and never declared it on the medical forms. I moved in with TA.
One day it occurred to me that he should know what to do if I ever went all Exorcist on him and started projectile vomiting. Gradually, thanks to Google, over the last few years I learnt a lot more about hydrocephalus. I learnt to feel blessed and somehow a sense of surviors' guilt started to creep up on me. We knew through my father's work of a little boy who had hydrocephalus too but he also had spina bifida, a wheelchair and two shunts. His dad called him stereo. I don't think he made it to his teenage years. Am I a walking, talking medical miracle? Should I fear a sudden and irreversable catastrophe - shunt malfunction or infection?
Today I was writing to a US-based team-mate about her scan and subsquent all clear after treatment for breast cancer. Here's the [edited] exchange:
team-mate in a round-robin: Just checking in to let you know that the MRI adventure was a piece of cake! I took two Lorazopams. And the machine itself wasn’t scary at all. It’s open at both ends, for one thing, and it’s pale beige plastic, not glistening, cold metal.
me: when I had my brain scan the doctor said, “Pah! it’s nothing – just like putting your head in a washing machine.” way to go doc – I was one freaked out seven year old!
glad to hear it went well.
TM: OMG, what a crazy thing for the doctor to say! Why on earth did you need a brain scan? Is everything OK?
Me: I’m hydrocephalic. It’s no biggie; well, it is for some people but evidently not for me. The scan was to ascertain whether or not I needed an extension to the drainage system they had inserted when I was small…but it turned out that my body had learnt to compensate and – at 11 – I was told I wouldn’t need any more check-ups. So now I just have some interesting, but redundant, hardware in my skull! I was supposed to go in overnight for the scan and be sedated, but my mum mixed up the days and I ended up being squeezed in with the adults and missed out on the drugs!
Doctors can be pretty strange individuals; I guess it comes from all that single-minded study.
TM: Wow! Boy, are you lucky that everything turned out OK. Does your hardware ever transmit any radio signals?
Me: Nah – I’m rather fond of it. it’s a bit like having a little skull spine or – now I come to think of it – a bit of Borg in me! I’ve never set of airport security though so I guess it must be plastic. Wow! I love the internet…