About this Stoker

Some readers will know me already from posts on Media Access Australia, ABC Ramp Up and Twitter. Others of you who read this because you’ll see the post via Facebook or otherwise because we’ve been friends. Some readers won’t know me at all. I thought it was time to present a little about my vision impairment. For those who don’t know me, hopefully it will be informative. For those I’ve not had face-to-face time with recently, it’ll be a bit of an update

Photo of an eyeWhen I was twenty I noticed the sudden appearance of two blind spots, one in each eye. They didn’t match up in my visual field, so they were only noticeable with one eye closed. There’s a history of issues with the retina in my family along with glaucoma, so naturally these were the things the doctors checked, and they found nothing. After second opinions and referrals to a retinal specialist, I sent to yet another doctor for a series of tests called electroretinography and evoked potentials tests.

This is where we found the answer. In a nut shell, my Optic Nerve was not transmitting the signals to the Visual Cortex properly. This lead to a diagnosis of bilateral Optic Atrophy (or Optic Neuropathy which is the more common name these days).

This had all taken some time, over twelve months as I recall. One of the key reasons for the long time to diagnosis is that the condition normally presents with a whitening of the optic disc, the part of the retina around the head of the optic nerve. In my case, this appears normal. Apparently my eyes are deceptive.

Just as the diagnosis was a bit vague, so was the prognosis. No one could say how much vision I would loose, or how long it might take.

I could, at this point, go on about how I felt. As a 20 year old guy being told this, I was hardly happy. Over time I’ve been through the emotional spectrum as you might expect.

It wasn’t long after this that most of my peripheral vision was gone. The loss was uneven, but was most noticeable at the sides and bottom of my vision. Continual issues tripping and bumping into things lead to me being referred to Guide Dogs NSW/ACT and learning to use a long cane. Given the uncertain prognosis I’m retrospectively quite grateful for the sessions done under blindfold. I came out of the training knowing I could get around whatever the future held.

Over the past seventeen years or so my vision has changed in fits and spurts. Sometimes the changes have been gradual enough not to notice, on others they seem to have happened over night. Changes have been increasing blind spots, both in size and number, as well as a reduction in quality, making everything look fuzzy and smeared.

In November last year, while playing with my son in the sandpit one Sunday evening, a large chunk of the left side of my vision disappeared. This took seconds, and was the first time that had happened. We ended up in emergency checking it wasn’t a stroke, and a visit to the Ophthalmic Surgeon confirmed nothing else was obviously wrong. The conclusion was that it was the Neuropathy.

Through to Christmas, I experienced two more of these changes, though neither was quite as large a change as the first one. Finally on Christmas Day I experienced another large change, which has basically left mw with nothing more than light perception through the lower part of my left eye.

So what can I see: when I’m sitting at my desk in the office I can see a white rectangle of my monitor and uneven darkness. If I put my hand in front of the monitor, I can see a shadow, but its not terribly distinct. If I turn my head to the left, I can see a light square of the window, but nothing else.

What can I see when riding a bike? That’s mostly dependent on the position of the sun relative to the bike. Sometimes I can see the shadow of Dave in front of me. Sometimes the shadow of cars and trucks passing. It’s not a whole lot, really.

Of course this impacts my life all over. I use screen readers on my computer, tablet and phone, along with a Braille display. I use a cane, I’m on the waiting list for a Guide Dog. On the other hand, things aren’t so different. I have a job and a family, and I’ve done all sorts of things with my life. I’ve worked in radio and IT, I’ve done all sorts of things for fun. Yes, there are some things I can’t do, and there are other things I do differently, but I get to live my life just like everyone else.

3 thoughts on “About this Stoker

  1. I first encountered Andrew Devenish-Meares when he was supporting others in getting involved in radio. My small part was helping him, under the orders of one Andrea Ho – was to “get it working”. The budget – zero. The aim? Get one of the most erudite Australian music afficonadoes on air. Result? Despite barriers, personality clashes and technical incompetence on my part – Andrew became the driving force of a nationally broadcast, award winning Australian radio music show, whilst simultenously maintaining the entire stations IT systems, AND paving the way for other vision impaired individuals to get on-air. Between power drills, blue-tac (not kidding – it is vital) and a lot caffeine, I learnt that one thing you don’t do is tell the host of the show Andrew Devenish-Meares (ADM to those in the know) that it can’t be done. Andrew, you taught me that my excuses are invalid, that it CAN be done, and for that, I salute you. You have been an inspiration to me throughout – and you continue to be.

    • Actually, you first met me on a train to Armidale. 🙂

      I feel I have to quote:
      “Sorry, what did you say? Did you mention the rules? Now, listen. A bit of advice: tell me the truth if you think you know it, lay down the law if you’re feeling brave, but, Daleks, never ever tell me the rules!”
      (The Doctor – The Time of the Doctor)

  2. Pingback: About This Stoker (Part 2) | Tandem Armidale

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