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!
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