Blow, Blow, Thou Winter Wind

There is a time, a dark time, when normal daylight thoughts are banished. A time when what remains are skeletal shadows, atavistic remnants of ancestral fears, unbidden fragments of anchorless dread which in the fullness of a sunlit day, are sheer cotton. -translucent at their best. It is when doors are left ajar and watchmen sleep. It is a time when filtering is impossible, and  vetting unreliable. It is the time of night when even the moon is asleep, or hiding…

And normally, so am I, but age and diet sometimes conspire to rearrange diurnal rhythms –shuffle the deck- and if I allow the shards of my imagination any attempts to organize unsupervised, the resultant patterns are not ones I would recognize in the light. Nor accept. It is an existential angst, a dark time of the soul.

A few weeks ago, I awoke sweating, and in the nocturnal silence of a moonless night, seemed trapped in an airless blanket of dread. I couldn’t see, and everything around me was still. Unmoving. Mute. If it had been preceded by a dream, I couldn’t remember it; all was numbed by the intensity of the terror, and I was helpless in the current swirling noiselessly around me. Suddenly, the sure and certain knowledge that I would be blinded from complications of impending cataract surgery gripped me like the jaws of an unseen, unexpected predator, and the ensuing silence convinced me of the extent of my coeval deafness. I was, and would be for all time, trapped in a silent darkness -solitary confinement on the authority of cast dice.

Of course the feeling passed, and my daylight remembrance of the event was suitably tailored in the sun, but the feeling lingered. What would it be like to be forever trapped in both silence and darkness, I wondered? What would be left of life? And for that matter, what would be the use of a gift I could no longer use? No longer experience… except as a living, solitary hell?

I suppose I’m being overly dramatic about a highly unlikely confluence of events, but even the possibility makes me shudder -makes me fearful about the fragile egg-shell in which I am encased, and the delicacy of the components it is charged with protecting. It is perhaps a wonder that we as a species –and more specifically, I as an individual- have survived at all, let alone this many years.

With this in the back of my mind, I am surprised I had not heard of Usher syndrome before, although perhaps my specialty of Obstetrics and Gynaecology quarantined me from an extremely rare condition that results in both blindness and deafness as well as a host of other non-gynaecologic impairments. But it was the subject of a BBC article that caught my eye and quickly brought back the horror of my panic attack: http://www.bbc.com/news/disability-38853237

It’s the story of a young girl, Molly, who ‘was born severely deaf and learned to lip read. But, at the age of 12, she was diagnosed with Usher syndrome, a degenerative disease which causes sight and hearing loss. Now aged 22 she has just 5% of sight left in one eye.’ The eye condition is called retinitis pigmentosa which progressively affects peripheral vision and results in night blindness as well.

And, as if deafness and blindness were not enough, she was also a teenager struggling like every other teen, to negotiate the serpentine interstices of social life. She did receive speech therapy, so communication was possible, but as she admits, ‘”I have to strategise everything I do. I am night-blind and so when I go out I would often ask to hang onto a friend. I will only go out with the close friends who do not make me feel a burden.”’

There are also mental health issues with Usher syndrome, not surprisingly, and Molly has a bipolar disease which can complicate her ability to cope with her disabilities at times. Also, ‘Her experiences are often dictated by the support she receives. While she says college restored her faith in humanity, she left university early due to a lack of assistance. “Lecturers didn’t have the time to understand my condition. Training and awareness sessions were set up for staff and nobody turned up. I just needed materials to be made accessible – large text, for lecturers to wear a radio aid that connected to my hearing aids – it’s as simple as that.”’

Some people are truly special, aren’t they? I suspect I would have sunk into an irremediable depression and yet ‘Molly has set up her own charity – The Molly Watt Trust – to support others with Usher and has spoken at prestigious institutions including Harvard University and the House of Commons [UK] outlining how capable people with Usher are.’

But perhaps the spirit soars, even in captivity –or maybe especially in captivity. I’m reminded of Victor Frankl’s book Man’s Search for Meaning and his thesis of ‘tragic optimism’: ‘How […] can life retain its potential meaning in spite of its tragic aspects? After all, “saying yes to life in spite of everything […] presupposes that life is potentially meaningful under any conditions, even those which are most miserable. And this in turn presupposes the human capacity to creatively turn life’s negative aspects into something positive or constructive. In other words, what matters is to make the best of any given situation. […]an optimism in the face of tragedy and in view of the human potential which at its best always allows for: turning suffering into a human achievement and accomplishment […] and deriving from life’s transitoriness an incentive to take responsible action.’

I suppose that it is difficult to judge a response like Molly’s from the outside, though; I suspect that true empathy –experiencing something through another’s mind- is nigh on impossible for most of us in her case. After all, it would require relinquishing all of that which we have come to accept as normal –sight for as many years as we have lived, and the sounds that have accompanied us through the years… An existence unimpeded -until now, perhaps- by significant impairment. The contrast between then and now would be overwhelming, I think.

And yet, as Helena says in Shakespeare’s All’s Well That Ends Well, ‘”Oft expectation fails, and most oft there where most it promises; and oft it hits where hope is coldest, and despair most fits.”’

Thank you Molly!

 

 

Digiphilia

My computer seems to be constantly doing things behind my back, or under my fingers. One minute it’s performing some sort of update, the next, applying a patch or pretending to, at any rate. I have to trust that whoever makes the little signs that pop up is honest and doing things in my best interests. But how would I know -until it’s too late? There’s a lot of hope that goes into owning a computer nowadays -but sometimes it seems more like a Mafial protection racket and I do what it says so I don’t get hurt. So my data doesn’t leak out onto Facebook. Doesn’t de-encrypt on its way to the Cloud.  Of course, that’s what I pay it to do, but nonetheless it always seems busy. Like me.

Sometimes I wonder what that means, though -being busy. Is it like my computer -being occupied with a thousand thankless tasks whose relevance is probable, but unprovable and invisible? Or is busy actually more like what it does for me when I ask it to print something, or search for a particular file and display it? Something I can use, in other words.

The questions are not as odd as they seem. A patient of mine seemed to be confronted with a similarly existential angst one day as she was fiddling with an app on her smartphone trying to find the date of her last period. I’d seen Jenny a few times in the past for heavy and irregular periods, but they’d sort themselves out and I wouldn’t hear from her until the next time her family doctor became concerned. A young-looking woman in her mid-forties, she always seemed busy with something in her purse or in the depths of one of the voluminous pockets of the coat she always chose to wear. Then, like a magician extracting a rabbit from one or the other, she’d hold up a scrap of paper like it was a Dead Sea Scroll and wave it at me in triumph. “I knew I’d written it down,” she would explain, her face red with the effort. “It’s the best way.”

It was different this time, however. I hadn’t seen her for a while and her hair was longer, greyer, and piled on top of her head like she’d done it in a hurry in the dark. Her face had changed as well -more lined. More flustered. She was wearing a dark blue woolen sweater with no pockets, and her purse wouldn’t have held much more than a phone. But as agitated as she looked, she greeted me with a warm smile of recognition.

My first question, after the usual reminiscing banter seemed the obvious one. “Your doctor says that your periods are heavy and irregular again,” I began, glancing at his letter on the screen of my laptop. “When did the last one start?” This initiated a confident dip into the little purse and a rather smug look on her face. She pulled out a standard issue smart phone and started to punch in the password to unlock the screen. I could tell from her expression that it hadn’t worked. “I decided on a simple one, so I’d remember the password,” she explained with a blush. “But I think I entered it backwards…” She smiled to herself and re-entered it with much the same result. “Damn! Maybe I’m using the one for my debit card -the PIN thing…” she added for clarification. “Or could it be the..?” She punched in a few more numbers, this time angrily, then sighed noisily. She blushed again, but her cheeks were already flushed with irritation. “New phone,” she added, but more to herself than me. “Actually, my first smart phone…”

She put it on the desk for a moment while she decided what to do.

“Just tell me the approximate date your last period started,” I said to calm her down a little. “It doesn’t have to be exact…”

But I could see an idea flash across her eyes. “I wrote it down just in case,” she said and stood up to reach into a pocket in her jeans. My fingers hovered over the keyboard in anticipation. “Here it is,” she said, pulling out a crumpled piece of brightly coloured paper the size of a small post-it reminder like I used to stick on my charts to alert my secretary to do some task or other. Jenny had her backup systems.

But it wasn’t the date of her period, it was the password for the phone.  I rolled my eyes when she wasn’t looking, and smiled patiently: my backup system…

Soon she was deep in the inner mysteries of her phone hunting for an app, scrolling randomly it seemed to my watchful gaze. I glanced at my watch -eighteen minutes so far of no progress in solving the problem she had waited so long to see me for.

“I used to just remember things like this,” she said with an embarrassed shrug. “Then, when my periods became irregular, I would write the dates down…”

I couldn’t see her face as she said this -her long, greying hair had come unravelled from its original wrappings and was hanging over her nose and eyes as she stared at the tiny screen, head bowed as if in prayer, frantically scrolling through some app or other with her fingernail.

“My girlfriend convinced me to get one of these,” she said, perhaps pointing at the phone that was hidden in her lap behind the desk. She looked up briefly and smiled at me. “You remember Lara?”

It was a statement really, not a question despite the obvious verbal question mark. I decided I did not have to respond and just smiled in return. I had no idea who Lara was.

“You delivered her little girl a few years ago,” she continued almost as an aside, trying to multitask as she whacked at the screen. “Anyway she said she’d given up pencils for good and was happy about it. No more scraps of paper in her pocket, or sounding the depths of her purse for a reminder she’d forgotten she’d put in there.” She surfaced again for air, and then just as unexpectedly disappeared behind her hair. “No more worrying about where things are; everything’s in the same place…” Her hair quivered for a moment, then the moment passed and the scratching sound resumed. “You can even set an alarm on some of the apps… Not this one, though,” she added, as if to excuse her absence.

“Anyway, Lara says to say hello.” And then a whispered curse, as if her friend had joined her behind the wall of hair.

“Any word about your period?” I  asked, pretending it was a joke.

Jenny giggled nervously and waggled her hair again. “I should have written that down somewhere for you… Well, I mean I did, but I can’t find it.” Two eyes peeked timidly through the hair like children hiding in a bush. Then suddenly, her head bobbed up and the hair parted as a curtain might with a gust of wind. “Wait a minute,” she said, excitedly, “I did write it down!”  She jumped to her feet and managed to cram some fingers in another pocket in her jeans. “Hah!” she shouted excitedly. “Here it is! You always have to have a backup plan, don’t you?” She pulled out another post-it note and placed it triumphantly on my desk.

I smoothed it out and tried to read the now-smudged writing on it as she watched my every move with ill-disguised pride. When I seemed to be having difficulty she gently retrieved the tiny document from my grasp and translated it. But slowly, like a teacher trying to help an unexpectedly slow pupil. “It says nine days ago, doctor. It started nine days ago -well, probably nine and a half, because they often seem to start the night before…”

I have to say she was very patient with me. More patient than I felt. “Nine days ago Jenny?”

“Nine and a half,” she corrected me.

“But couldn’t you just have told me that in the first place? I thought maybe it might have been a few weeks ago, or perhaps a very long time ago…”

She shrugged noncommittally. “That’s why I wrote it down,” she said as if I was still being a bit slow. “I didn’t want to give you the wrong information, after all…”

“But…”

She looked at me, obviously annoyed that I was not being more understanding. “I lead a busy life, doctor. I can’t be expected to remember everything.” She softened her expression like a mother, concerned she might have been a bit hard on her child. “So I write everything down where I can find it when I need it.”

I stared at her phone for a moment and shook my head with a knowing smile. I don’t think she saw that, though, because she was obviously  pleased with her methods and was carefully folding up the password on that first piece of paper and getting ready to put it back in her pocket again. “When you’re busy, you have to have a plan,” she said proudly. “And a backup…” she added wisely, in case I hadn’t seen the wisdom in it all.