After my first blog post exploded around the planet (I’m still reeling from the attention) I realised that I needed to balance that out with the positive, especially for those with children or partners that have Ushers and are desperate to give them what they need without suffocating them or getting rejected.
The following is a revised copy of an email I sent to a couple of parents of newly diagnosed Usher kids about four years ago. I hope it gives you all hope.
…While the world has yet to come up with a complete cure, my mother always said that she was glad I was born in this time of technological advances because she always had hope that they would come up with something to help me before I lost all my vision.
So. While they cannot tell you how fast or when you will lose your vision, don’t worry. I had one of the worst introductions to the syndrome I know of.
Firstly, some background – I got a cochlear implant when I was seven. My mother insists that she explained it was because of my Ushers but all I remember is the doctor saying “You’ll be able to hear”. Without being arrogant, I was a prodigy and so on and forth so the doctor probably thought it would be interesting to see if it worked on me – I still believe that you need to have SOME hearing or have lost it or get it before you are three (language part of the brain growth stops after three and all that jazz) which I did not have so, unfortunately, I threw out the external part when I was eleven because all I got was white noise and I was sick unto death of the whole thing.
When I was thirteen (yeah, wonderful time in my life that was) I realised I could not play at night when the family friends came over for dinner – we used to play spotlight all the time etc. I nearly poked my eye out on a tree support in the garden when I tripped over because I couldn’t see. That night I asked mum in frustration why I could not play with them. She stopped, looked at me and said “Don’t you remember?”… I cried for hours that night and just wanted to die. ALL she (and now I) knew at that point was this ONE SIMPLE FACT:
I was going to go blind.
No whens. No maybes. No NOTHING. Just “You’re going to go blind.”
I had no one to talk to. No support. I grew up in Byron Bay and Wellington (Mum lived in Byron and Dad in NZ) and I didn’t meet anyone with Ushers until I was in my twenties. By then I had resigned myself, gone completely crazy, pulled myself back together and started trying my best to live for the sake of living. I was suicidal from 13-16. Never actually did anything – I couldn’t bear to do it to my family but oh, I was so tempted. Life seemed pointless. I love art. Gave it up except for my perennial sketch pad and pencil I would have in my bag when I hitched all over the shire in my late teens. I did stupid things.
Over the years though, I realised something important. I can still see. I had wasted over ten years avoiding art and stuff because I thought it was pointless and all that crap. But in the end… All I did was rip myself off. At 24, I got a scholarship to The Learning Connexion in Wellington, and decided to go for it. I did the foundation course (completed it) then got sidetracked by life and moved back to Byron. One day I realised I was still taking photos with my old Sony 3.1 megapixel camera that my uncle had given me when I was 21 and that I truly loved taking photos. Got pissed off at myself, enrolled into tafe when I was 27 and did Cert II in Tools for New Media and then moved to Melbourne to DO SOMETHING WITH MYSELF. I also went and bought a Canon 5D Mark II DSLR. Expensive as hell but worth it.
I would later go on to upgrade to my current little baby, the 5D Mark III. I’ve jokingly given it the name of ‘Car’, seeing as how I’ll never be able to fulfill my dream of having a car (and the freedom it entails) plus the little bastard costs almost as much as a decent second hand car!
Over the next few years, my life was incredible. I won the inaugural 2011 Able Australia Deafblind Photography Awards – I came first in the Favorite Person category and second in all the other three categories. I went on to win the next year’s contest (same category) as well but unfortunately due to not enough funding, that was the last time it was held.
I got a job at the Victorian College for the Deaf. I helped the students with their English and was generally a role model. I also helped out with the primary kids. I made videos for the school and for my youtube account (haven’t done that for a few years, planning on getting back into that this year.) Eventually, after two years, I had to quit due to worsening vision and feeling that I could not put 110% into the job anymore. I also did not want to become a liability or, worse, a danger to the students.
I have been using a cane daily for the last five years. It’s my best friend. I call it my ‘Moses stick’ because it gets people to get the hell out of the way without me looking like an idiot. I have a free transport card that allows me to travel anywhere in Victoria and NSW for free with government transport. That includes bus, tram and train. (Not plane, unfortunately.)
In December 2011, I bid for and won the position of the Official Photographer of the 2012 Australian Deaf Games in Geelong. That was held in January. It was one of the hardest jobs I have ever had to do but I kicked ass. Yeah, you heard me right. A nearly blind Deaf guy got given the job and did a fantastic job at that.
In 2013, Archer magazine asked me for my perspective on sex. When I asked what I could possibly have to contribute to that, my friend and editor of that magazine simply said “You’re Deaf and nearly blind! That’s interesting! I want to know what it’s like for you.” Sometimes I do forget that people really are interested in the various aspects of what everyone is going through and that sparked my own interest in exploring that and this is what I came up with:
Deafness and Sexuality – Out of the Darkness
A year ago, in 2015, someone found me through peers and asked me if I would mind writing an article for MiVision about my experiences with Ushers. I agreed and when she gave me a good list of questions I got a bit stumped. I started just writing and all of a sudden it became a rant. After I sent it I broke out in a cold sweat and hoped I hadn’t overstepped my bounds. She loved it and couldn’t bring herself to edit it so she requested that she be allowed to pretty much copy and paste the entire thing. This may sound strange but I did not realise how cathartic it would be to really write about what it was like.
I’ve also travelled a lot. Through my childhood I went with my father overseas several times as he had married a German woman and I’ll be honest, I was very hesitant to travel solo until 2012 when my childhood best friend (of whom I was best man at his wedding in France) told me I was to be godfather of his first child. I saved like crazy and went to France alone. That was… It changed me. I found a new self-assurance I didn’t really realise I had before. I went to Paris and finally visited Versailles (I’m a huge history and heroic fantasy buff so this was a wet dream for me) then went on to Italy and Austria to see old friends and even had a road trip with my best friend to Guerande, where the famed salt mines are. Yes, the original salted caramels are THAT good.
Two years later, when I broke up with my partner, I realised I needed to live the life I dreamt of so I booked a flight to Cambodia. This was one of the most important decisions I have ever made in my life. I cannot emphasise how vital it is for people to live a life without regrets. Savings are great but one thing I’ve really realised over the years is that I value time immensely. Many people don’t really seem to get this almost overwhelming mental demand to experience life before it’s too late. I feel like I have a ticking time bomb in my eyes and while it can get to the point where it paralyses me, it is also an incredibly powerful positive thing if you can wrestle it into an energy, a drive that launches you into amazing situations. Scary? Yes. YES. Worth it? 99% of the time, yes. Listen to your inner voice and just go. This does not mean I’m saying all of you out there with Ushers should travel. Everyone has different desires. The salient point here is to do it. Even if you’re one of those (as I am) that has no freaking clue as to what you want to be. That’s okay. If you develop an interest, do it. If it turns out to not be what you wanted or needed, that’s still okay. You’ll be able to shrug and smile later in your life and say “Dude, I tried.”
So, I went to Cambodia alone and met up with a group (one person was my friend and an interpreter – essentially it was her that convinced me to go) to do The Great Tuk Tuk Rally. We were split into three groups of 4 and one tuk tuk driver and trekked almost a thousand kilometers from Siem Reap to Phnom Penh and onwards to the coast to ‘Secret Beach’. That blew my mind. Two of the three tuk tuk drivers had never been out of Siam Reap in their lives! I became very close with them through this trip – I was truly humbled by the care and consideration they gave me once they understood my limitations and they never looked down on me. Ever.
The organiser, Koky, had escaped Cambodia as a very young kid during the Pol Pot regime and had spent a few years prior to this inaugural event building schools for children in Cambodia. We had the privilege to listen to Ponheary Ly recount her story of what happened during the Pol Pot years and her mission and we also got to go to a village and stay the night there during the Rally. This was an extraordinary privilege as white people were not allowed there without endorsement from a local. I pretty much voted myself the photographer of this journey and took thousands of photos which I then donated to Beekeeper for promotional purposes.
If you are interested in helping a good cause, please do have a look at Koky’s endeavours:
I, for one, can vouch completely for the integrity and vision of this man and his passion for change. POSITIVE change. It’s easy to get disillusioned with all these organisations popping up and wonder if they really do make a difference. This one does.
Also, if you ever go to Siem Reap, hit this guy up. Esa Man is a truly lovely gentleman and speaks good English. He also runs his own tuk tuk tour business. Cannot recommend him enough.
Esa Man Siem Reap / Angkor Wat Tours
It was a huge experience. I won’t say it was easy but to be able to see such kindness from people that had nothing really jolted me from my old mindset and I started realising how cynical and not-caring I had become thanks to the institutionalised nature of consumerism and greed that is now becoming shockingly rampant in “first world” countries. I then went on to travel solo for two more weeks.
I’ll never be the same again. I’m planning on going back near the end of this year. I miss Cambodia. I miss the community they exhibit. I miss the smiles. I just miss it all.
Last year I went to Koh Tao, Thailand, to see my good friend, Simon Wright of whom I have known since high school. I went with a bunch of mates and had a pretty crazy month-long adventure. I could bang on about that here but I have already written a guest blog for his blog so it would probably be best to simply point you that way. (Do have a read up on Simon’s blog, it’s fantastic! He even uploads free clips of his music if you want to have a listen.)
A Quiet Observation of Island Life
My important point is this:
I’m glad I didn’t kill myself. Life is amazing. DON’T WORRY. Technology is going crazy at the moment. Don’t let this crappy deal in life stop you from achieving your dreams. YOU CAN. Never give up.
And you can just google my name. There are a couple of interviews and stuff online.
I really really hope this helps. I never want anyone to go through what I did – feeling helpless, crushed and worst of all, ALONE. You aren’t.
If you use Facebook, there are quite a few Ushers groups out there. Parent ones, youth ones, general ones, organisations and so on and forth. I have yet to see a bad one but hey, if you accidentally find yourself in a lemon of a group, just leave it and find another. We are a very diverse demographic so please don’t judge us all if you get bitten. I most certainly won’t bite you.
These groups are generally a really lovely bunch and very passionate about this – always lots of great info there. Every now and then there’s a new person who comes into these groups begging for help and they are always warmly welcomed and helped.
I’ve gone to the annual Able Australia DeafBlind camp in Victoria a few times. (Perth has set up their own as well, I went to the first one.) I was pretty nervous but it was a great experience. Well worth it. I met a guy from Perth who has Ushers himself and he told me to start taking these supplements everyday. They ARE expensive, but the guy is into his 40s and can still see pretty well and swears by them. Whatever helps, right?
They are as following:
Mens/Womens Ultivite Multivitamin
Well, that’s about it I guess. For now.
The pictures below are some of the photos from the 2011 and 2012 Able Australia DeafBlind Photography Contest.
Finally, I’d like to say that yes, sometimes life sucks. Just remember that it doesn’t always suck. You, and you alone, have the power to create change within yourself. If you need to grieve, then grieve. Same goes for anger, despair and everything else. But as with everything, it will pass and there will be times when you forget and can take pleasure in life.
It’ll be okay.
The featured image is courtesy of the legendary Sid Rock Photography taken in Melbourne when I was 27. Thanks, old friend!
ALL photos are for personal use and not to be edited or cropped whatsoever. All copyright owned by Edan Chapman.