Branching Out

Part of understanding and thereby accepting your life with rare disease is processing the stages of grief.

I think denial was a big part of my life for the first 10 months. I kept telling myself I wasn't going to get sick again. It was either major denial or some sort of major mash-up between denial and that sort of positive thinking.

It was a morning and evening chant: I will not flare again. I will not flare again. I will not flare again.

But it didn't work. And every time I did flare again I was caught out, unprepared, unready and mostly, un-accepting.

I'd get angry and rage and hate the world and hate my family and hate my body and hate me. I wasn't very pleasant to be around. Then the self-pity would arrive when I'd see how I was hurting those around me. They were hurting too.

It can't be easy to watch your wife or your mum struggle to the loo, to ask for help wiping and need help cutting her food.

But I hated it. I hated the impoverished way I was leading my life.

It was only sometime in the winter when I got past my most recent pleurisy attack that I realized I should actively plan these things.

Because, no matter how many times I tell myself I'm not going to flare again and that I'm leading a happy, healthy life, this thing is bigger than me.

It's so much bigger than me. It's so much deeper than me. It's in my veins, my blood, my dna. I cannot escape it as I cannot escape breathing or dreaming.

And so to plan for becoming ill is to accept.

I accept that ill health will happen and I owe it to those I love to prepare myself and them for it.

I think by allowing myself to accept that this is happening, that I am sick, that sometime in my future my kidneys will start to fail, I am more able to readily accept myself.

I used to rage against the fact my hands hurt. Stupid hands, I'd think. Other people can open jars, cook, chop, feed themselves. You're bloody worthless, you crappy hands, I'd think.

Now I can process that my hands are hurting and that it's ok. It's ok to take breaks, to admit that I can't do something and I think it's made me grow as a person. It's also opened up my independence into larger areas.

I can volunteer my talents but still ask for help. It doesn't make me weak or lesser, although some people would venture that it does.

Asking my husband to dish up my dinner used to drive me crazy. Now I see it as a nice way he can help. He doesn't mind, so why do I?

It also means accepting my fate, accepting my limitations and seeking help.

I've written to so many people over the past 6 weeks. All with the same resounding response. Nope.

No one in their community knows about FMF. But they'll post something in a newsletter.

No one in their lab has a need for someone with FMF. But they'll put my email in their database should the need arise.

No one is doing studies about FMF in the Pacific because FMF doesn't exist here. But they'll file away my contact details should the need arise.

I think they're all blind and foolish and would venture that if 1 in 200 people in affected communities shows signs of the disease then people in their communities should shows signs of the disease.

People cannot emmigrate from Turkey and Greece into new countries and NOT bring the disease. It's statistically improbable. 1 in 200 of those people DO have the disease and pass it on. It's the simple fact that we're not LOOKING for FMF that is limiting the disease.

I think my journey is limited here and I need to travel to find more resources and to meet people with FMF.

Facebook has been a blessing in that there are several FMF groups starting up with real, live actual people who exist. And these people have FMF.

And I've found that while we share symptoms, our diseases are different. Some were offered genetic tests straight away and are positive. Some respond incredibly well to Colchicine and some are so affected they are dying.

There is a new study opening up in Turkey for patients who do not respond to Colchicine. But you have to be able to travel to the clinic.

The entire world stands between me and that clinic.

But it doesn't hurt to send email after email looking for someone, anyone with FMF experience in the so-called Western World.

Maybe all of this legwork is part of the grieving process too. Maybe it means when I find someone with answers that it will mean so much more.

I was reading today that some Ancient Greeks believed that reincarnation was so vital to the continuance of souls that they refused to eat beans, for fear they were eating a relative or that someone would soon be eating them.

While I don't actively accept the bean theory, I do believe that there is someone out there who has experience with this and that it's just a matter of time before I find them. Perhaps not a continuance of souls, but more a continuance of story.