I was recently connected with the inspiring Edan Chapman a 30 years young Usher’s Type 1 male, through a mutual friend (thanks Amelia!). Edan grew up in and around Byron Bay and Lismore, his Usher’s Syndrome has caused deafness and blindness but has not come close to affecting his passion for art – especially photography and film making.
Edan sent me his story in his words: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) 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 fell over because I couldn’t see. So 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 Lismore 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 but 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.
What a tragic story, huh?
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, moved back to Byron, wasted a bit of time then one day I simply 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 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.
Over the next year and half, my life was incredible. I won the 2011 Able Australia Deafblind Photography Awards – I came first in the Favorite Person category and second in all the other three (they couldn’t give me first for any other category because the prize was the same for all categories – the organiser actually told me that himself!!! Haha!)
I got a job at the Victorian College for the Deaf. I helped the students with their English and generally was a role model. I also did the photography and made films for them.
I have a cane now. It’s my best friend. I call it my ‘Moses stick’ – I’m not religious but I have a keen interest in history and religion is a huge influence on all aspects so I have a fairly good knowledge of the stories of the bible – 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 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.
I have a beautiful girlfriend who recently moved down to Melbourne to live with me. . She, like me, loves the written word and is as smart as me which is something I’ve searched for… for, well, forever. Melbourne was the choice because this city (and Victoria in general) has the best services and support for DeafBlind people, period.
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. I can’t promise anything but hey, hope is good.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.Oh, that reminds me, if you use Facebook, there’s a group called “US Families (for Usher Syndrome)”
https://www.facebook.com/groups/371009117557/
They are 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 the group begging for help and they are always warmly welcomed and helped.
I went to my first Able Australia DeafBlind camp in Victoria last year. (Perth hosted one later on that year) 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 which I have started doing so, I even contacted the doctors in WA who are running the nationwide database thing, can’t remember what they’re called… I’ll track it down if anyone is interested. Anyway. They told me that I should be fine with the supplements. 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:
I asked for a really good food processor for my birthday from the family and that thing is such a weapon. I LOVE IT! I cook all the time. Soup, lasagnes, roasts, pasta, you name it. Oh, and my breadmaker is a beautiful addition to the family of cooking utensils as well. (I highly recommend buying one – a typical loaf of bread costs around $4.50-$5 in the supermarkets – I refuse to eat that cheap white garbage. A sack of premix bread flour – I like Laucke’s – costs under $20 and makes something like 30 loaves. I’ll let you do the math. And what can possibly beat waking up to the smell of freshly cooked bread and slathering butter on it?
Anyway….)I refuse to deprive my other senses in my frantic need to enjoy my sight. Cooking, cuddles, conversations, reading (a slight oxymoron that, but remember your brain is a tool and a sense and haven’t you ever been moved by a book? That’s the heart part.)
Life IS good. My partner and I live in Fitzroy and whilst we are paying a bit more than we are used to, it’s worth it. Perfect kitchen, two bedrooms so we can have a study, walking distance to vege bar and bimbo’s (love their $4 pizzas) and supermarket.I also finally set up my proper website, which still needs a lot of updating:Â http://edanchapman.com.au
Last month I finally held my first solo exhibition. It was an one night, one off event to thank my friends, family and sponsors/organisations that have supported me. It was great! The official exhibition launches next week at the Gasworks in Middle Park, Melbourne. You can look up the event here:Â http://www.gasworks.org.au/events/edan-chapman-a-small-perspective
I’m not quite sure what to do next. I’ve finally finished my “professional” bucket list with my photography and while I do want to continue working as one I do understand that my working lifespan is limited. That doesn’t mean I’ll ever stop shooting photos – you’ll have to pry the Canon 5D Mark XVIII out of my stiff fingers in my coffin to stop me from continuing with that passion but I feel a need to find another creative medium that I can continue to do so for the rest of my life. I’ve just started a wheel pottery course with my little sister and I’m quickly falling in love with it.
The future is beckoning. I wonder what tomorrow will bring. All I know is that it’s half full and I’m the only one who can make the decision whether it is or not.
