Being hunted by Vecna
I saw a post from a Redditor whom we'll call StillAir describing the fear of optic neuritis. They describe how they've been blind in one eye since childhood and ask about how people manage the fear of blindness when you have multiple sclerosis.
I'm mostly blind in one eye due to optic neuritis and I have had attacks in both eyes. For sure I know this fear.
But it is true to say that it no longer keeps me awake. I don't think about it often. It’s actually quite a strange thing to think about how different my experience is now. Before, I was constantly mindful of being pursued by a nightmare monster, a creature intent on taking me, blinding me, breaking me. Now I’m still being hunted, but I’ve become familiar with the threat.
Now that I and this monster have become so well introduced, so intimately acquainted, I have come to understand what it is. I can see it more clearly, the threat it imposes upon our lives, and when I saw Stranger Things I realised pretty quickly how good an analogy it was for this disease.
Having MS is like being hunted by Vecna.
People who know me well know that I always have headphones around my neck, they’re never far from me. I joke with people that catheterisation takes so long that it makes sense to listen to a podcast while I work. The truth is that periodically I hear the heavy ticking of Vecna’s grandfather clock. When I fumble a catheter, when I bounce off a doorframe, when fatigue grinds me to dust, and indeed when my vision smears and clouds, the scars of our previous encounters flare and the clock echoes down the corridors of my mind. Stranger Things is actually one hell of an analogy, because Vecna finds us through our fear, the memories of our darkest moments, our loss, our pain, and in those moments his voice calls our name and we are reminded we are only a moment from being broken.
But when I hear his approach, when I start to slip into those memories, into the fear, I put on my headphones, let the music fill me, and find my way back.
Music, of course, is not the panacea it might appear. I can’t defeat this monster with Kate Bush no matter how much the lyrics sound like they could be written about MS:
If I only could
I'd make a deal with God
And I'd get him to swap our places
I'd be runnin' up that road
Be runnin' up that hill
With no problems
The fear of MS and all it entails are founded in the fear of change, and of loss. But the truth of life is that change and loss are intimate partners to us all. Whether we choose to look at it or not, whether we can tolerate looking at it or not, Vecna threatens us all. And for some of us Vecna is right at the door, and a grandfather clock rings a discordant tone that resonates through our minds far too frequently to ever feel truly safe again. But if you don’t really fear loss, can you ever really cherish what you have?
For me, Vecna’s approach makes me clutch at friendship like a raft in a storm. There are precious moments in my life to which, for the first time, I am fully alive. I don’t have plans beyond a few seconds’ time. And in that time I will seek out and make more of my moments precious. They are where life happens. And my time has become too short to allow any more of them to slip my grasp. But in that knowledge, in that desperation, in the literal holding of a friend just a second longer in that tight embrace, in the tears that tumble when we say goodbye, even in the deepest fear that loving fully means inevitable loss, there is life.
In Vecna’s approach we find the kind of love that can only flourish in the heartbeats that pass between the tick tick tick of his clock.
And that’s the journey I am now on. I’m on a mission toward friendship, toward intimacy, toward our truest kin. The threat of blindness is just another in a long list of nightmares that come when such a creature decides that his next focus will be you. And of course under that kind of threat anyone would be afraid.
I am afraid.
But that is Vecna’s gift. When we are afraid, when this monster is right upon us, we pull on our headphones and we find the right music, not because it’s enjoyable, but because it reminds us of the love of our friends. And when we open our eyes it is our friends who are with us, holding us, pulling us home.
I don't feel grateful to this monster hunting us. And if I could slay Vecna I would not hesitate. But we become a stranger to our past self when we hear the ticking of his clock, when he growls our name. And maybe this new woman is stronger, braver, because she is afraid. Maybe she seeks connection, intimacy, because love is the antithesis of the stagnation and entropy of his domain. And maybe the ticking clock makes more of her moments precious.
Maybe it is the threat of blindness that allows us to truly see what is important.