Well, shit.

Leaving behind nights of terror and fear
I rise
Into a daybreak that’s wondrously clear
I rise
-Maya Angelou

Basically, the entire year of 2016 can go fuck itself.  I mean, it got off to a pretty unforgivable start when it took David Bowie from us all, but it looks like it had no intentions of quitting its utter bullshittery until it was over.

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Anyone who has read the last couple of posts will know I’ve been struggling with vision issues in the one eye I actually have any usable vision in, and yesterday, following some pretty unpleasant tests that involved putting electrodes in between my eyelids and my actual eyeballs, I got some news.  It turns out there is evidence of damage to the optic nerve behind my right eye, which confirms I have been experiencing optic neuritis (swelling of the optic nerve).  Although my vision is not back to normal, this could potentially be it, as far as recovery goes, which would be a real inconvenience to my entire life.  However, I’m hopeful, having read some first-hand accounts online of people suffering from the same thing, that I could experience further improvement in time.  In fact, it can apparently take up to a year to fully ascertain what the end result could be.  I feel it is prudent at this juncture to mention that patience is not one of my virtues, so I was not thrilled with this time frame, though I admit I was comforted that my sight could get a little closer to what I think of as ‘normal’.

The real kick in the balls was the fact that confirmation of optic neuritis, coupled with the lesions in the white matter on my actual goddamned brain that showed up on my scans, point to multiple sclerosis being the culprit for my vision issues.  Following a conversation with neurologists, my eye specialist also said that the lesions appear to be new, ruling out the possibility that it was residual scarring from the congenital toxoplasmosis in my left eye.

Now – as this is technically, at the moment, an isolated incident, I have no official diagnosis.  There is the chance that this is a freak, one-off body fuck-up.  However, when I aggressively questioned the specialist he did concede that it was unlikely to be caused by anything else, all things considered.  He also mentioned that the exercise-induced blindness I’ve been experience may or may not go away, so now my future cycling plans are on the chopping block.  So thanks, Mother Nature, you absolute cunt rag, for potentially taking away from me the one thing that I learned to love after running.

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Also off the cards: rock climbing.  Thanks, James, for taking a blind girl out climbing on wet rocks on Christmas day.  I had a blast.

From here it looks like I am going to be having a chat with a neurologist.  Apparently they may want to do another brain scan, and potentially a spinal tap (fuck my life) in an attempt to make a diagnosis, and then take it from there.  I was put on the waiting list a couple of weeks ago, so I’m looking forward (I guess) to hearing from them and snagging an appointment.

What really tugs at my gut about this whole thing, apart from the unfairness of it all, is the timing.  I was enjoying life.  In fact, I had applied for a sabbatical from my job and I was meant to be, right this moment, packing up my life in Aberdeen and moving to London for a 6 month job there to help me save up for a summer of touring around Europe on my bike, writing, and saying ‘yes’ to any and every opportunity.  The letter granting my request for a sabbatical arrived in the midst of my dad’s visit, and it has all had to be put on hold until I figure out where I’m at.  My adventure was meant to be just starting.

I guess my feelings about this can be fairly accurately summarised by my mother’s response when I called her to tell her the news:

“Well, shit.”

I’m all about overcoming adversity.  Saying ‘fuck it’ to problems and carrying on.  Laughing in the face of catastrophe.  But right now?  Right now I’m in a dark place where I am ugly crying in the shower, letting my mind dwell on worst-case scenarios, and letting the tenacious claws of anxiety take hold.  I feel like ripping all of my plates from the kitchen cupboard and hurling them with all my force at a brick wall.  I want to run as fast as I can up a mountain until I collapse with burning lungs.  I want to scream until I’m hoarse and gasping for air.  I want this all to go away.

But it won’t.  And while there’s no point in throwing myself a pity party, and nobody likes a whiny bitch, I think I’m just going to take ten from reckless positivity just now and revel in my misery, thanks very much.  I’m convinced that once the dust settles, I’ll be ready to ‘rise’ and crack jokes about making a clean sweep at the next Paralympics, but for now, I’m going to fucking wallow.  For the rest of the goddamn year.

Far from Folsom Prison, that’s where I want to stay

Allow me to set the scene.

My vision has been (slowly) improving and my anxiety has been starting to ease back.  It’s a sunny Monday and I’m heading to specialist eye clinic for a follow up appointment and to get the results of the CT scan and MRI of my head.  I’m looking forward to getting in and hearing something along the lines of, “Welp, everything checks out, things should continue to improve, see ya later!”  A palpable sense of relief floods over me and with every step I take that brings me closer to the clinic I feel happier.  I can start making plans again!  I can go back to my life!  I can let everyone in my spin classes listen to me breathe like a rapist and gasp for sweet, sweet oxygen as I struggle to get through a 45 minute session after weeks of sedentary gloom!

Things are looking up.  I’m Johnny Cash about to be freed from my cell at Folsom Prison; about to see sunshine again since I don’t know when; about to drive my mental train a bit farther from the prison created by my own panic.  Man – I feel Zen.  As.  Fuck.

So, you can imagine it was a bit of a sucker punch when, after explaining what had been going on to a new specialist’s face, he told me he wasn’t convinced it was the swollen optic nerve.  And it was equally gut-wrenching when, upon realising I had been for brain scans and was eager to hear the results, he went to his computer to pull up the file and then, discreetly, turned the monitor away from me.

What transpired from my appointment was that there were abnormalities in my brain scan.  I can’t fault the guy’s bedside manner, but you know it’s never a good sign when you can see someone’s brain ticking away while they try and choose the right phrasing for the occasion.  The topic of multiple sclerosis was brought up again, though he made it a point to make it clear that this is not what he was diagnosing me with.  He also talked me through a range of possibilities for what the brain scan results could be (discounting tumors, to my relief, fairly rapidly).

As optic neuritis is closely associated with the onset of MS, and as my symptoms weren’t “textbook”, then the first thing to do would be to try and confirm whether or not the optic nerve was swollen.  For this, I have to have some neurological tests, which I am choosing to imagine will be 2 hours of Clockwork Orange-esque rigmarole, but will likely be much less terrifying.  If these tests reveal I have had swelling in the optic nerve, then GOOD: I know what the issue is, but BAD: MS is more likely.  If I haven’t had swelling in the optic nerve then GOOD: MS less likely, but BAD: what’s wrong with my vision, but also, what’s going on with my brain?!

Well, as the scan remains (for now) the only head scan I’ve ever had, there’s no telling how long the irregularity has been there.  It could have happened years ago and been asymptomatic.  Because my blindness in my left eye (from birth) is thought to have been caused by toxoplasmosis, there is also the chance that something happened there which caused the abnormalities.  Or, as the doctor said, “it is not outwith the realms of possibility.”

There’s even the possibility that what turned up in the brain scan is completely unrelated to what has been happening with my vision.  A final idea is that the vision problems are just physical manifestations of stress.  Now I’d consider myself to be pretty laid back and adaptable, so initially I scoffed internally at this suggestion, but the reality is a few years back, feeling no more under pressure than normal, I started suffering from anxiety and having very real, very scary physical symptoms.  The specialist I was in with even told me about how he ran clinical trials on 30+ people with optic neuritis, but he had been forced to discount the results of two participants – who he had diagnosed himself – as it turned out their symptoms were a result of stress.

So what was his advice for me in the interim before tests and more results could shed some light on the situation?  Try to relax.  Well, at least that got a laugh out of me.  Dude, you have got to be kidding – relax?!  Does that mean treating myself to “stressbuster” massages and Indian head rubs?  Does it mean turning all the lights out in my classroom and listening to guided progressive muscle relaxation tutorials on YouTube while I lie on the floor?  Does it mean buying a Himalayan salt lamp to ‘neutralise electromagnetic radiation’ which can – allegedly – cause stress levels to rise, affect your immune system, and lead to chronic fatigue?  Does it mean sitting at home alone at night and cruising tinder to find a human being to talk to in an attempt to avoid panicking by myself?  Does it mean trying to rebalance my chakra (whatever that actually means) by busting out some yoga moves in my living room? Because I have done all of those things, and while they might alleviate anxiety in the moment (and definitely beat sitting at home crying), they are absolutely not going to bring about a sense of calm that definitive medical test results will be able to.

Frustratingly, the first batch of those tests was scheduled to be yesterday, but I got a phone call in the morning to tell me that the doctor had phoned in sick, and my appointment was cancelled, with no indication of when I could expect them to be rescheduled.

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So until those tests happen, I guess I’m still stuck in Folsom prison, and time keeps draggin’ on.