December 23, 2016
by Annmaree Yee
Annmaree Yee is a family physician with a Master's degree in psychological medicine. She lives in Sydney, Australia. Along with her wonderful brother and beautiful young niece, she too has Usher syndrome. Life is difficult, no question of that, but it can also be good as Annmaree has the best husband and children ever invented or created! Annmaree has had to change paths in her career many times, as a result of her worsening sensory limitations due to Usher syndrome, and growing up in a climate where support was not readily available. Annmaree hopes the forces that made her retreat into the "closet" are no longer as pressing or prevalent. She is currently embarking on a PhD by researching deaf blind health care communications. Her hope is to engage the Usher community in contributing their experiences in hospitals for her thesis.
The closet is a fine and private space. I know, I lived there for a great number of years. In the closet I was normal, yes normal. I was a student, then a professional. People thought me a little weird at times ("Didn’t you recognise me waving at you? You are such a daydreamer."), and I was considered a great fun drunk (who didn't drink at all knowing that my difficulties got worse if I drank). I could be guaranteed to fall into ponds or into strangers or walls or garbage bins or whatever obstacle was in my path. It wasn't all bad bumping into things - I once bumped into Hugh Jackman…That was nice.
I wasn't always in the closet. In fact, I started out NOT in the closet. I wore my hair up so you could see my hearing aids, I went to classes, did my work, took exams and had a part-time job like a normal student.
At university one of my professors was assigned to me as a mentor. I told him of my hearing loss and he immediately said I must speak to the Dean about this, "We cannot allow you to proceed with the course and inflict you upon patients."
Devastated, I called my father, who flew up to go with me to meet the Dean and defend me against being sacked from a course I was halfway through and that, while incredibly difficult, was undeniably wonderful. In a bit of an anticlimax to a weekend spent alternating between crying uselessly and pacing frantically, the Dean was unperturbed and said he saw no reason to stop me proceeding. This particular surgeon, he confided, had no finesse or understanding of the greater needs of communities and individuals.
But this did something to me; it made me frightened of the loss of approval and understanding from others. Clearly, the way to avoid this was to never tell anyone in a position of power that I was hearing impaired. I stopped wearing my hair up, and I never voluntarily disclosed to another person unless I really had to. My visual difficulties remained undiagnosed at this time, despite attending three ophthalmologists in one year, and many others whilst growing up short sighted, who each proposed that I simply must eat more carrots. When I said I kept falling over obstacles and into unseen bodies of water, one remarked with gravity that he was not a physiotherapist for clumsy people and that I should go to one.
So into the closet I went with a furious resolve. This was not too difficult, as I did not receive any university support or assistance or special modifications or provisions. I got through on the kindness of fellow students lending me their notes and assisting in practicals by repeating instructions. But I wouldn't tell anyone who had no need to know. And the list of people I did tell was very small.
Life in the closet was tricky at times, but generally quite good. I enjoyed not being judged for being deaf as much as I hated being thought I was incompetent because I was deaf. That the closet was the right place for me to be was reinforced at a function I attended where the professor of surgery, previously mentioned, was holding forth with a group of younger students about how he got rid of a ‘most unsuitable young lady who wore hearing aids' from the profession. The young acolytes all laughed heartily in approval.
My dearest friend watched me through all of this and would often remark that I should come out of the closet because life would, in fact, be much easier. Most people were kind, she would say, and would be helpful if they understood. I knew this was not true, didn't I!
One day at hospital in final year, we were sent to examine a man with an ‘amazing visual field defect' due to a rare tumour. Medical students thrive on rarities (which is quite ridiculous really, as most of us would spend our working lives with the common and chronic ailments that affect most patients … Commonly!) Off we rushed to see this medical wonder. Whilst examining this man, I realised with horror that HIS fields were BETTER than mine. I sprinted down to the ophthalmology ward, in which a friend of mine was the senior registrar. “I know all medical students at one time or another think they have the same diseases as their patients and I am probably being overanxious BUT … I have just examined Mr. X and my fields are WORSE than his!” I remember being breathless and garbled and I remember Michael looking up and saying, "Well then, let's have a look."
And look he did, and found what all the ophthalmologists who have ever examined me did not, that I had pretty extensive retinitis pigmentosa. Combined with the neurosensory hearing loss, this meant Usher syndrome. So I was not a neurotic final year medical student (this would have been infinitely preferable). I was a person with a dual sensory loss about to sit my final exams and utterly, utterly decimated emotionally.
Somehow I got through finals (still firmly entrenched in the closet as no one knew of any of my difficulties) and went overseas to work in a children's hospital. This would, in fact, turn out to be the last time I travelled on my own, because I fell down a flight (or twelve) of stairs in a cathedral bell tower. Apart from a very busted ankle and dented pride, I was unhurt.
On returning home to work, I stuck a leg out of my warm and mostly cosy closet and told the hospital administrator of my difficulties. He assigned me to two of the world’s loveliest surgeons who accommodated the fact I couldn't lip read because of their surgical masks by developing a coded sign language, and who taught me how to remove prostates and testicles with aplomb and skill (wasted as I have never, ever used this skill since, but oh so much fun in the learning!)
Fast forward to the child bearing and rearing years. I feared the mothers at my children's schools to be a very judgey judgey lot. In the background my long-term friend kept saying, "Tell people, tell people." One fine but awful day, one of the judgey mothers bailed me up after a school concert and said, "We simply MUST talk about your alcohol problem. We have seen you fall, look confused, fail to recognise people and ignore us when we speak. You talk loud and I am a social worker and I recognise the signs."
At this pivotal moment, I realised the closet had become the judgemental court and not the homey space of comfort I needed. I rushed out, found the most gossipy mother at school and confessed all. I was deaf and going blind and struggling at times. I could be relied on to be socially inept at times, to fall over if not supervised in strange environments and to not understand a lot of what was going on. I could also be relied upon to never, ever give a child of anyone's a lift anywhere as I didn't drive. I could never return those favours. I could also be expected to misunderstand and misinterpret and miss some cues altogether.
Unsurprisingly for my wise friend of old, people were mostly kind and helpful and supportive. Life with my children got easier as other mothers happily transported them north, south and west (east led only to the Pacific Ocean). Life for me got much better, even as the Usher wreaked its havoc. The school mothers organised outings and transport and lunches and gossip sessions. The government too was helpful and supportive with various disability support packages and payments. Suddenly, the hundreds of dollars a month in taxi fares were halved by a taxi subsidy.
Guide Dogs were totally brilliant in mobility and cane training (you can't be in the closet with a cane you know, it just doesn't fit). I caught a bus on my own in London to a place I had never been and survived injury free, feeling quite pleased with myself. Good excuse for a fine champagne celebration. My gorgeous trainer found lots of places (bus depots, markets, airports, botanical gardens etc) to practice cane work, pretending we were overseas. Qantas airways were mostly brilliant (lots of hiccups and you must double check or even triple check every special arrangement, but they have been receptive to requests for seats near toilets and using notepad and pen to communicate in flight). Cathay Pacific are lovely and caring in flight as well - Elaine and Caroline, I am talking about you here. British Airways have good helpers to get you through Heathrow and beyond.
I also have a sublime occupational therapist called Melissa (thank you, Vision Australia ) who is happily and creatively working with me on my latest project: getting me to university again productively and safely. Stay tuned because we are going to do some great things to improve health literacy and experiences for deaf blind people. The Deaf Society sent me a tutor, Daniela, who is another talented professional, to help with finger spelling and signing. She also learned from me, how to spell many new medical words, so it is a two-way learning street. In the closet, it is a bit too small and dark to have positive learning experiences that will support you as things worsen. Degenerative conditions are kind of keen on doing just that.
It slowly dawns on me that the closet is in fact a lonely space, a place of hard work and exhaustion. Pretending to be normal (even if a weird variant) takes a high level of vigilance to keep yourself safe and sane. Being out of the closet means being able to take a good look at the world around you (I am being metaphorical here, not literal). And that means finding community and comfort, even in difficult times.
I came late to the Usher community but what an embrace - from Mark Dunning's efforts on our behalf, to the gems and pearls and rubies and diamonds amongst my fellow Ushers and Usherettes. Life is easier if you are not the only one experiencing disorientation; life is easier if you get hot tips on which technological assistive devices work best in which situations; life is easier if you can give helpful tips on coping - see, we are useful after all! Usher is all about losing competencies and skills, so retaining friendship and collegiality is a Very. Good. Thing.
The closet is a fine and private space for a time, but none I think do as well as those who live out in the world with understanding and support. In return, being out and about means helping to educate each person we meet and tell our story to, and this means in a ripple effect kind of way, that the next generation gets a kinder world where closets are redundant.
And yes, my friend Sophie was completely right about coming out of the closet. There I have said it. SHE WAS RIGHT ALL ALONG.