Shades of Hope

Hope. Such a worn word. Such a weighed down word. So full of desperate expectation with no guarantee of fortune being bestowed.

I remember reading up on this sociological theory as part of a literature review for a research project at University. We were working for a client on techniques to prevent summer incidences of drowning associated with binge drinking. It was targeted primarily at teenagers as the key demographic at risk. The theory (I forget the name) posited that people have a psychological bias towards expecting terrible things won’t happen to them – that they are uniquely immune. Let’s call it the ‘That would never happen to me’ theory. But ‘that’, whatever it is, happens to people all the time. It was an important part of our research because this psychological illusion of immunity to tragedy directly impacts on behaviours that could drastically alter the chance of something bad happening.

Hope in the light of this theory becomes a different, more nuanced beast. It’s not rainbows, cheery yellow smiley faces and cupcakes (though those are all nice). It’s something we can passively adopt and wait for fate to pull us out of the shit like that little cloud thing on Mario Kart (of course paying a few coins for the service…bloody capitalism, is there nothing it hasn’t permeated?…good lesson for the kids playing Nintendo though…”hey darling, if you fall, just try try again – oh and pay up!” if you’ve never played Mario Kart none of what I’m saying is making sense right now but that’s ok I’m leaving this tangent now) but that’s probably, you know, statistically (I have no stats though) the least effective option you could go for.

WHAT ARE YOU ON ABOUT, ZOE?!! I am trying to say that we need to participate in our lives. We need to help Hope along by creating fertile ground for it to flourish into reality. This is NOT the part where I get all cult like and talk about the Law of Attraction. As long as people are born into slums or are killed as a result of domestic violence then I’m not all that on board with the Law of Attraction. Seems to be conveniently popular with a lot of people who are born into developed countries that foster and encourage the pursuit of individual excellence and self-actualisation – I’d love to see the sort of speeches from some of the proponents of Law of Attraction style-thinking given to, say, a bunch of women who work in clothing factories for a pittance in Bangladesh. Make a vision board ladies, and watch the manifestation happen!

I’ve digressed again – what I really wanted to talk about was Hope, my hope, and it’s not the shiny, saccharine kind you see in glittered lettering on Hallmark cards. My hope is deep, messy, it’s the hope that keeps the boxer going in the ring when he’s (or she, let’s not be gender normative here) swaying on his feet and his face is a bloody mess. It’s the kind of hope that is born out of necessity, not a dream. It’s the kind of hope that keeps you searching for an exit when you’re in a dark room and the walls are inching closer.

My version of hope feels like running from a tsunami, while the lifeguards on the beach push you back towards the water. More than that they say, “There’s no tsunami, you’re overreacting, you need to get your head checked, drowning is highly exaggerated and frankly we have lots of reputable research showing that most people can’t drown due to inherent buoyancy.” What an impossible position to be in, but you can still bet your boots I’m going to keep trying to run away from the Tsunami – and to hold out hope for my life.

I’m not really talking about tsunamis or drowning, guys. It’s a metaphor. A metaphor for life with Chronic Lyme Disease today in 2016. About 40 years after it was first discovered.

I have reached the last fringes of hope, the wild west of optimism where things are a bit gnarly and dark and the air is thick with uncertainty. Because instead of hoping for nice things like a pay raise, a nice holiday, a good grade on an assignment – I’m hoping simply to not get worse. Frankly, to not die before my time – or be so unwell that death looks inviting by comparison. This is deep, dark, primal hope. Tinged with realisations that I still struggle to reconcile with, that I have to digest in tiny incremental amounts because they threaten to drown me with grief and despair.

Like the fact that what I have has no known cure.
Like the fact that remission is the goal but relapses are common.
Like the knowledge that I’m really unwell when I’m meant to be at my prime, cut down and debilitated at 25yrs old – how on earth am I going to be when I’m 50? If I get to 50?
Like the knowledge that 90% of the medical community globally thinks I’m deluded for accepting my diagnosis of Chronic Lyme Disease.
Like the grappling with the insane expense of getting adequate treatment – hundreds of thousands of dollars.
Like the fact I’m taking medication that creates a nasty withdrawal when you come off it but if I don’t take it I have whole body shaking fits and will not sleep at all.
Like the recognition that I may have been on the wrong side of history for this, that I got sick too early and my home country is still arguing over the presence of this illness let alone how to deal with it.
Like the schism between what I see in support groups and what I hear from respected authorities. Something has gone terribly, terribly wrong when it comes to this illness.

So my hope is there, and it’s already carried me far through years of: worsening symptoms, broken relationships, new relationships, financial destitution, physical debilitation and complete loss of independence, all while carrying the above realities in mind. Sanity is something I apply effort in maintaining every day and I’m proud to say I’m succeeding. I’m helped by people who love me, without them I guarantee I would not be here to write this blog you’re reading today.

My next chapter involves going overseas (for the second time) to seek medical help, more swathes of money, potentially the kind of aggressive treatment that will save me but may also take me right to the brink of physical and emotional endurance to get through. But when the walls are closing in you are frightened, cornered and you will take any chance at freedom that presents itself. Even if it looks like a thorny rope from a window high up near the ceiling that may not be big enough to climb out of when you get there – it’s STILL better than staying where you are.

So here’s to all the people clinging to my kind of hope, the dark, thorny kind that is the only thing left between you and no longer being you anymore.

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