Appologies for the lack of posts so far this year. I’ve been busy just getting through life and dealing with people’s assorted forms of bigotry and nonsense.
Today is the start of Deafblind Awareness Week, so it seems like a good time to share some of my experiences of dual sensory impairment.
I’ve had very low vision for as long as I can remember. I don’t have any clear memories of all of the running around to doctors and specialists in the early days. From what I was told, it took a while to get a diagnosis, and when I did, it turned out to be incorrect. The ophthalmologist I saw throughout most of my childhood got carried away about a couple of observed symptoms and decided my case was exactly the same as a patient he’d seen just before my first appointment with him, and so diagnosed my condition as Rod Monochromatism. As far as I’m aware, he didn’t actually do any tests at all.
As time went on, I realised that people’s expectations of what I could see were very different to my own experiences. Around the time I started school, I was given these thick red glasses that I was told would make me see better. I wore them for a while, partly because they helped with my photophobia, and partly because I liked the colour. (Red has always been the colour I’m most able to see.) When I was six years old, I had an experience at school that made it clear to me that the glasses weren’t helping. I was eating my lunch at an outside table and looking around me, wondering where the duty teacher was. Frustrated, I took off my glasses and looked around me again. Suddenly, I could see the vague shapes that must be other tables with other kids at them, and a sort of person shape that was too tall to be another kid, so must be the duty teacher.
For years after that, I would ask more and more questions about my diagnosis, and try to explain what my experiences of my own vision actually were. It seems like most people don’t want to hear what a kid might have to say about their own life (something I also faced in other areas of my life). Twice that I am aware of, my vision has slightly deteriorated. The first drop in vision was around the time I started primary school. Before school, with much struggling and staring at the page, I could identify the letters in one of those large print alphabet books with the big pictures in it. Some of the pictures were a fuzzy mess to me, but some I could recognise the shape. I started learning Braille as soon as I started school. The second small drop in vision was when I was about 16 years old and had just started going to TAFE. The ophthalmologist had suggested my vision would stay the same, but this was likely because he had decided by then that I didn’t have any functional vision.
I asked around and found another ophthalmologist who seemed to have a good reputation, (not that reputation meant much to me at this point since everyone seemed to think my previous ophthalmologist was brilliant). Anyway, the new guy sent me off for all kinds of tests and eventually decided on a diagnosis of Retinitis Pigmentosa (RP). The symptoms of RP fit better with what I can see. I’m not sure it explains everything about my vision, but it’s the closest diagnosis I’ve had, so I’m fine with that at least for now.
Somewhere around the age of 18 or 19, (it’s hard to remember exactly when), I started losing my hearing. It was getting harder and harder for me to communicate with people, especially if there was background noise. Despite the suggestions of a lot of people around me, it took me a long time to get my hearing tested. Because of my vision impairment, I had always relied a lot on my hearing, and I was in denial that there was anything wrong. Then something happened that dragged me out of denial and convinced me to get my hearing tested. I was hit by a car that was driving the wrong way down a one-way street. Fortunately the car was moving slowly, but no, the driver didn’t stop to check if I was ok. I was a bit sore for a while but didn’t seem to have any significant injuries and didn’t go to get myself checked out.
Not long after that, I went and got my hearing tested. The results weren’t good, and every subsequent test had worse and worse results. I was given two rather large hearing aids with those big chunky moulds that fill the whole ear. It took me a while to adjust to wearing them. I didn’t realise how much I’d got used to things being so quiet. After getting hearing aids, sensory overload was a regular problem for me. One day I was sitting outside with a friend from work. I’d moved house not long after starting to lose my hearing. I put my hearing aids in and said to my mate, “Wow! There are birds in this suburb after all!” I’d lived in the suburb for months without ever hearing birds.
Because my vision impairment had been diagnosed as RP, everyone involved in my healthcare seemed sure that I had Usher Syndrome. They seemed to become more convinced of this as my hearing got worse. Somewhere along the way I was warned that I could end up losing the rest of both my vision and hearing. This scared the absolute shit out of me. Having my ears filled up with some kind of putty so they could get the shape of my ears for the hearing aid moulds gave me a glimpse of what it would be like to be even more deaf than I already was, and it was terrifying. Someone suggested that I do some training under blindfold to prepare myself for the possibility of losing the rest of my vision, and I refused. That too was terrifying.
Eventually the subject was raised of my having the option to get a cochlear implant. I really didn’t understand much about how the implant worked or any risks involved, but I was losing my hearing fast and seemed to be out of options. There should have been more effort put into getting informed consent from a patient with dual sensory impairment. I only heard part of what was said to me in appointments, and rarely (if ever) had a support person present.
I’ll try to leave out any waffling and unnecessary details. Anyway, I ended up getting a cochlear implant. Fortunately, for some reason which was probably told to me without me hearing it, they only did an implant on the left side because my hearing was slightly worse on that side. I don’t know if they planned to see if that was successful and then do the right. The implant didn’t work. I was unable to learn to recognise any of the sounds that came from it. All of the specialists seemed baffled. Going through all of the stress of surgery for nothing was effecting my mental health. Communication after the implant was more of a struggle than before it. There was a bit of residual hearing in my left ear, but it was even worse as a result of the surgery.
Much to everyone’s confusion, and especially mine, the hearing in my right ear gradually started to improve. This is when all of the specialists realised they might have been headed down completely the wrong track. One of the specialists sent me off to see a psychiatrist who he had discussed my case with. It turned out my hearing loss was caused by Conversion Disorder, also known as Functional Neurological Disorder. This is a condition where trauma or psychological distress is converted into physical symptoms that have no other medical explanation.
It took maybe a couple of years for my right ear to have test results in the normal range, and another couple of years for my left ear to improve to just a mild hearing loss. For a while I stopped wearing hearing aids, but I still struggled in some settings. I now wear a hearing aid in my left ear. Hearing less in one ear than the other can really interfere with my sense of direction and distance. Think of it like how if you can see a bit less in one eye than the other it messes with your depth perception. Having a hearing aid really improves this for me. For some reason I am still often prone to sensory overload. My vision seems to have stayed the same for quite a long time now, but there’s no way of knowing if it will deteriorate further until it happens. As far as I know, it’s possible for my conversion disorder to relapse and for me to lose hearing again, but it’s been stable for a few years now and I’m hoping it stays that way.
I was surprised and a little bit confused when I was recently invited to get involved in the local deafblind community. It had been quite a few years since I had thought of myself as deaf, and so I worried that I would be an outsider. However, the community seems to be made up of people with varying degrees of deafblindness. We still have shared experiences of the issues that are specific to having a dual sensory impairment. In the future, I am hoping to take on some voluntary work in the deafblind community.
I’m not sharing this as inspiration porn or pity porn. I’m just sharing it as one person’s experience, to help raise awareness of the many different experiences people may have of deafblindness.