Such Stuff As Dreams Are Made On, or, The Second Coming

Friday brought an appointment with my new consultant.  The doctor shares her initials with the Messiah and is the second consultant I’ve seen since diagnosis.  I duly dubbed her ‘the second coming’. As anticipated it was an excellent thorough consultation.  Yet the news she brought was not so good.

She voiced concern about how incessantly ‘active’ my disease has been and wants me to contemplate a move to Tysabri.  Tysabri infusions are renowned for their short-term effectiveness with Relapsing Remitting MS, many patients at my hospital are enjoying its benefits and are rightly thankful there’s another treatment option out there.  Yet roughly 1.6 in 1000 patients who have been on the drug between two and three years contract PML, a rare brain infection that usually causes death or severe disability.

Just one year in, I was demoralised my MS is deemed bad enough to run the gauntlet with a drug that brings a real chance of fatality.  This evaluation of my condition was a brutal reminder of my fallibility in the face of this disease.

Tears in the taxi back home.  This advent now seeming more akin to the disorientating ‘widening gyre’ of WB Yeats’ apocalyptic The Second Coming: ‘The ceremony of innocence is drowned.’

My disease’s most serious assaults have been these days when I’m confronted with the reality of its implacable course.  Whilst symptoms always bother, most days I sidestep its seriousness.  Or I deny my MS and lapse into thoughts of a future physically unbounded.  Or I ignore my illness and focus on remedies needed for the disease as a whole.  Then I am reminded that my story can’t escape MS’s debilitating restraints.  I have sat silently weeping at information days for the newly diagnosed when faced with the inevitable neurological narratives of MS.

The worst scar from this disease of multiple can be on your sense of self, on how you imagine your story.

All disease humbles: a stark reminder you’re just flesh and blood.  When your disease is chronic and degenerative, this reminder is an enduring admonition.  Volition can only go so far.  As neuroscientist Jonah Lehrer puts it: ‘We are such stuff as dreams are made on, but we are also just stuff.’  There’s the rub.  Post diagnosis, I thought that I’d managed to rid myself of my ‘vaulting ambition’(i), to map out a more grounded story for myself.  Yet that incurable sanguinity still creeps in and before I realise it I am drafting future chapters not just irrespective of my disease, but often reality in general.  Then days like Friday come like a macabre plot twist, an unambiguous portent reminding me my ‘stuff’ is wired wrong, that I am hostage to the ‘thousand…shocks that flesh is heir to’(ii); a prompt to start writing a different ending?

Putting aside my own dauntless dreaming, all of us harbour misguided hopes about our own unique destinies; cockamamie ideas for our future that tend to motivate us to get up in the morning and endure the daily grind.  Most of the time, denying our mortality, we suspect we might be a little bit invincible too.  So what to do once you’ve concrete evidence and daily reminders you are not?

Many resort to the flawed military analogies that conjure ideas of a ‘holy battle’ with illness. Becoming a valiant ‘hero’ in a ‘fight’ with MS may be considered one way of redeeming, even developing, your sense of self.  With all diseases this terminology is profoundly problematic. With MS the idea that one could ‘win’ is currently laughable.  I do not want to deny the power of say meditation or counselling on physical wellbeing, but to imagine one’s ‘spirit’ has control over bodily matter seems an outrageous act of human hubris.

Psychologically, as this blog espouses, it’s often best to put these thoughts to one side and relish the moment.  But the future still looms large.  How do you plot out your forthcoming narrative in the face of the non-negotiable dragon and mice?

These thoughts have been troubling me especially as I have unexpectedly reached a junction in terms of my career as well as my health.   I look at the copious medical notes in my already bursting hospital file on the consultant’s desk and wonder how this narrative will interact with what I’d like to imagine as a blank canvas vocationally.

I’ve not come to any conclusions about how to deal with the future.  But I know that when I’m confronted with my physical fallibility, my bruised ego turns promptly to these pages to make my mark on the world and wrestle with this new sense of self, this Second Coming.

Copyright (c) 2011 Cathy John. All rights reserved

i. William Shakespeare, Macbeth, Act 1, Scene 7.
ii. William Shakespeare, Hamlet, Act 3, Scene 1.