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Home / Thoughts / Sean's Thoughts / Hope, crumbling away

Hope, crumbling away

Written by Sean on Friday, September 5, 2008

Imagine that all your life, you have seen yourself as a creature that lives underwater, yet, you live on dry land and cannot ever do more than jump in the water for a minute or two. You know you cannot live underwater. Yet you need to. All your life you have hope. You have HOPE. Hope that somehow, someone will find a way, someday. But after decades the hope fades.

You know gills won’t grow on you, no more than wings would sprout on a cat.

Yet you knock on doors and ask for help, and the doors are closed in your face.

The thing is, BIID is a bit like that. Except that while it is physically impossible for humans to have gills (unless you’re what’s-his-face in Waterworld), the surgeries to help with all "flavours" of BIID is very possible.

I’ve had hopes. I’ve had Hope. I kept going for the longest time. Telling myself that "maybe in a few years they’ll find a less drastic way to help". But a few years turned into a decade, which turned into three decades.

In the meantime, surgeon refuse to help, stating "ethical issues", or saying "hippocratic oath". Knock on door after door after door. Even those who see you suffer, can’t help. Or won’t help. It doesn’t really matter which, does it? The end result is that hope is broken away, one chunk at a time.

And you try to figure out how you could acquire the spinal cord injury you need. For 30 years you come up with hare brained schemes that can never work. You follow every rumour, investigate all the leads. Always you come back to the starting point. You thought you were going forward, but you were just going in circles. And each new iteration chips away at the hope.

How long before it’s all gone, I wonder? How many turns of this damned merry-go-round can you endure? How many turns can *I* go through and keep hanging on to hope, which melting away like fog in the morning sun.

They tell you to hang on, that someone will find a cure soon enough. But how soon? How long before they find something that does help, other than the surgery you know would fix it pretty much immediately? How long can you hang on the edge of the cliff, holding by one hand to that small root? Yes, someone’s gone to town to get a rope. Hang on, have hope that they’ll come back before your strength is sapped, before the root rips, before the soil gives way, before you have the ultimate free fall experience. Falling doesn’t hurt, it’s just the landing that can be a bit rough.

You hear that injecting alcohol in the spinal cord will make you paralysed (kids, don’t try this at home, it’s Not a Good Idea). Then you hear further that it’s only temporary. Hope goes down yet again. Then you hear again that while the nerves re-grow, you will have tremendous nerve pain. Hope goes away again. You further hear that such an injection may give you septicemia, or end up with meningitis. Not much hope left now.

So you think "what the heck", and consider just stabbing yourself in the back, between the verterbraes. You know it won’t be easy. In fact you know it’ll damn difficult and painful. You remember your strong survival instinct. You don’t think you’d ever be able to build up the nerve to actually do it, as desperate as you are. Hope keeps on fading away. It’s just as well, really, because you’re aware that there are blood vessels running along the spinal cord. You might cut the cord, but you might knick the veins/arteries, and slowly bleed along the spine, causing a higher injury than you wanted. Or you might severe the blood vessel altogether and bleed out before you reach the emergency room. By now, you’re starting to forget the meaning of the word "hope".

You think "compression fracture", that ought to do it. You think if you jump from the garage roof, and land on both feet at the same time, the shock will compress the spine and do the damage you need. Ha! You have no way to control at which level that would happen. You’d be just as likely to make yourself a C3 quad or kill yourself. Not that death is such a bad thing you think. But you don’t want to die, not really. Hope is… Well, no. Hope isn’t!

What happens when hope has been assaulted and attacked and chipped at and erroded for decades? What happens when hope is nothing but memory?

When that hope is gone, completely gone…

Well, I dare not think about what that might look like. I fear I am coming entirely too close to knowing first hand what it’s like…

Tags: BIID, Compression Fracture, Despair, Hope, Paralysed, Spinal Cord, Spine, Surgery