Last week was marked out by a cascade of critical tasks like obtaining a boat safety certificate, mooring permit, and waterways license – all coagulating with the same deadline (as two agencies simultaneously required the original and only aforesaid certificate).
On top of all that it became urgently necessary to reduce all the storage I have not looked at since moving here – quite an enormous and humbling task for many reasons, not least the fact that cleaning is not within my repertoire. I can unpack, organize, and assemble, but am never inclined to throw anything away if it might someday prove useful.
That is why, opening boxes, I found (amongst other things) a yellow scarf purchased at a thrift store on South Tacoma Way in the late seventies and worn exactly once. And the shirt I wore the first time I pitched to VC. And boxes upon boxes of clothing discarded by various people – in many cases, not even people I know.
Purging was necessary but also entirely stressful. Finding my old journals just underscored the fact; Paris, Rome, Tallinn, Helsinki, Trento, Venice, Nice, Barcelona, Amsterdam, Granada, looping jaunts through the United States and United Kingdom, the occasional and always bizarre stay in Canada: my life over the last six years has been at best frenetic.
Remembering that fact is puzzling, and helpful. The sheer physical effort of shifting a life, however, is torture. By the end of the week this is what I looked like:
The morning after that photo I was shuffling around brushing my teeth when I looked in a mirror and dimly perceived something moving. I poked, assuming it was an optical illusion, but no – even without my glasses on I knew it was lice. I commenced hopping around shrieking in rage and horror. Byron told me to act my age.
But my advanced age does not, by default, involve bouts of head lice! Any parent who has been visited by the pestilence knows how hard it is to treat in this chemically saturated age. We’re essentially back to ye olden days of hopeless herbal remedies and tedious comb-outs.
Difficult in the best scenario, but remember, I have excessively long hair. And limited washing facilities. As I crouched dragging a metal comb through the knotty mess I cursed the laziness or whimsy that persuaded me to live without haircuts for decades. If there had been scissors within reach I would have hacked it all off right then.
But there was no time, because to round out the hideous week I had to rush off to the teaching hospital for one of my routine tests. This particular one involves a panoramic x-ray of my jaw to determine if there are tumors hidden away deep down inside. In the past these have been quite devastating, taking out large portions of bone. To date I have had perhaps six surgeries, with experts in several teaching hospitals dolefully informing me that I would need to be followed in specialized clinics the rest of my life.
These things do not upset me in principle – I am not worried about the results, fretful about the interaction with surgeons. For the most part I am laissez-faire to a fault about my health.
What I cannot stand, even now, after all these years, is the test itself. Forehead braced against a post, chin held in place with a plastic guide, teeth clenched on the bit, I am required to be still and hold my breath as the machine makes a steady perambulation of my head. It only lasts for twelve short seconds – nothing at all in the course of a life – but if you grew up in therapy culture or have post traumatic stress disorder you will probably recognize this as a trigger event.
I’m tough, I’m resilient, I can face down anything. But in those twelve seconds I relive fear, pain, loathing, humiliation, a surging wave of memories of blood, surgical dressings, vomit, infection.
The only thing that keeps my face in the grip of the machine is the knowledge that they will continue until they have a perfect image.
When the consultant called me into the examination room he pointed to the X-ray proof of devastation, still visible in shadowy traces where bone and teeth were pulverized by disease. I knew at a glance that the result was fine, no new tumors – these things are easy to read.
What was more surprising was the fact that the doctor looked from the image to my face and then said But you don’t look like someone with this syndrome.
My eyebrows went up but I resisted rolling my eyes. What did he mean by the comment? That I lack a distinctive lantern jaw found in a minority of those diagnosed, and that my original surgeons sacrificed my joints to avoid slashing my face open. The point is however mostly rhetorical since this fellow, even if a world renowned expert, has probably only met three or four other people with the syndrome. If that.
I retorted I don’t have a bifid rib either and he looked even more startled.
He recited the test results; exactly as I already knew from a cursory glance, my jaw is clear. I started to gather my things and said nonchalantly Awesome, thanks!
This was clearly not expected because he replied Erm, what?
I epated Awesome! Thanks!
He shook his head and delivered a final announcement that made me sit back down abruptly: he informed me that I no longer need to be seen in clinic.
Twenty-four years after the definitive diagnosis, seventeen years after the most recent jaw surgery, against all known medical literature and the advice of any previous clinician, I am officially – not cured, never that, but free.
Not liberated from the disease itself, but instead from the experience of being a prized specimen, at least in regards to the function of the lower half of my face. This is only one test of several, and I’ll still need to do it, but in the future I can go to the bright shiny environs of a dental office.
My stateside surgeons would be appalled, since this advice contraindicates the literature, but I am thrilled beyond measure.
There are so many things to love about this country.
My scars are visible to anyone who looks, but the people who try claim they cannot see them; whether the traces of surgery and sorrow are hidden by artifice or attitude makes no difference.
I left the hospital and raced away to London, leaving behind mess and drama, turning a damaged and hopeful face resolutely to new adventures. Oh, and I decided not to cut my hair after all:
