August 27, 2008

calling all survivors…

me: is there really nothing you can do?

gp: sorry, no. there is really no cure for fibromyalgia.

me: i can’t sometimes believe that despite all the advances in science and medicine, you don’t have a cure for this…it’s almost over 15 years now

gp: look, the more we know science, the more ignorant we are about it. we can treat cancer, yes. but fibromyalgia…no.

me (in my head): …because fibromyalgia doesn’t kill? and cancer does? huh? huh?

me: sigh…alright doctor, thank you for your time.

gp: can i ask you a question?

me: sure…

gp: how do you cope with the pain? with no medication or support…

me: well, i still have my will power. tons of it.

i lied.

ok, it wasn’t entirely the truth. the truth is that my will power has a hundred re-births each day. it lives when i foolishly expect to live normally like everybody else. it dies when others foolishly expect me to live normally like everybody else. it thrives when i am fighting by myself. it is murdered when i visit the doctor. it survives because i know i am the only one going through all the pain, and i know i am the only one who can push myself to do more despite it. what kills it is the lack of drive i see around me, and in people who say that life is pointless. again and again. my will power dies and is reborn. what nourishes it are happy thoughts (son, husband, family, phd), and simple truths i cannot do without (multivitamins, ayurvedic stamina-booster-medicines, and the one and only, manasamitram, which relaxes my fatigued nerves each night, and prepares me for – at least a few hours – the next day).

and so i came out of the gp’s surgery last week wondering what was worse. that there is no medication cure for fibromyalgia, or that it doesn’t kill. i think i will never find out.

anyways…

i had decided not to write about myself again. at least not about the pain. but that is all there is these days. so, tough luck.

when i read charu’s blog entry this morning, i thought to myself this was the least i could do to support her cause. i know and have heard that there are millions of fellow-sufferers out there, but i personally dread reading those discussion-lists. the same symptoms, the endless pain, and the one often-unsaid comment i too have had to face so many times: but you look fine!

some days ago, a friend who’s currently in texas wrote to me that she sees fibromyalgia-related ads on tv all the time, and that every time it flashes on the tv, she is reminded of me. the first thought i had was…ahh, at last, one more person understands. and that’s mainly why, even if i’m here in london, i’ll vote for a fibromyalgia-support group in india.

because…and its strange that like charu, i too have mentioned in the past: pain makes you lonely. this support group may not provide the medicines…that is the doctor’s job. it won’t provide you sympathy…we don’t need any, thank you. but what it will provide, like that ad my friend saw on tv, is information. the quiet knowledge that there’s tons of will power around. and the power to survive.

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