What on earth has possessed me to go back to university to undertake a PhD? I am in the throes of terminal vision loss with profound hearing loss as well. I have a degenerative condition. I am in mourning for the loss of many of the things I love to do: reading, going to movies and plays…I have set the kitchen on fire once and myself alight three times cooking, I have made my son cinnamon toast with chilli powder instead of cinnamon. Not good. Work has come to a slow, spluttering stop as well. Not happy, Jan.
In fact, I am grieving the loss of competencies in most aspects of life. But then I see an old patient of mine and hear his tale of woe and misadventure in hospital. He has age-related hearing loss and severe macular degeneration. So he can’t hear well and he can’t see very much at all. For four days in a big teaching hospital he neither ate nor drank. He mistakenly believed he was nil by mouth. The staff brought him food and drink and then took it away untouched and unnoticed and unknown. On the fourth day, he went into acute renal failure from dehydration. And that’s when staff put hearing loss and vision loss together and saw how they had failed to look after this man. There but for the grace of God go I, I thought. This could be, would be me.
Does this happen to others? Sadly, shockingly it seems yes. Talking to deafblind people, they all have stories of rudeness, neglect, confusion, distress and trauma in our hospitals. There must be something I can do to ameliorate this. And so a PhD student with a ready-made area of study is born. Why UTS? Serendipity is the simple answer. My supervisor works here and she is a woman of vision and action. Furthermore she gets me a co-supervisor who is a woman of insight and ideas. I am happy, but I don’t foresee how difficult the road to PhD will be. Complicated, severe dual sensory losses make every activity undertaken, every paper read, every workshop attended a herculean task involving assistive devices, adapted equipment, software, accommodations and human help to bridge the chasm of information in its original form to one that I can absorb, process and manage.
I fear that my language skills are not up to the task of writing endless tracts for the PhD and doing justice to the narratives of patients as well as telling my own stories of health care encounters with a sensory disability on both sides of the stethoscope. And so I take up a narrative writing course with FASS’s School of Communications (isn’t this diving into the very deep end of a very deep pool? Well yes, but it seemed like a good idea at the time).
This is, surprisingly the best of times and the most interesting of times. This course sustains me through the obstacles of navigating the university spaces, real and virtual, as well as the policies and procedures that don’t meet the needs of a person with complex communication needs. I make a discovery, I struggle to see and to hear – but I can still tell a story.