To whom it may concern, especially myself,
I have needed to write this for a long, long time. Now, I have realised that if I don’t, I never will. I’ve fought it for too long and I’m exhausted. Many people over the years have told me I’m an inspiration and I’m amazing. Thank you to everyone who did so. Here’s the rub though:
I don’t feel it. I don’t believe it.
Sure, I’ve lived a very full, rich life. I’ve traveled more than many of you have or ever will. I’ve seen more than most. One would think that would mean I’m happy. I’m not.
I am going blind.
Perhaps that’s why I enjoy horror movies so much. Nothing they show ever comes close to my own, personal hell. No matter what I do, these words are constantly, slowly crawling somewhere in my head. I hate it. So much.
When I’m around friends, I miss out a lot. I keep having to ask them to repeat. The older I get, the less I can see and the more I feel I am a burden. For someone as independent as I am, this is the most paralysing feeling. My left eye is degenerating faster than the right at the moment and for someone that loves art and photography as much as I do… Can you even begin to comprehend what that’s like? I feel robbed. I feel so angry and so helpless. There’s nothing I can do to even help my eyes. And they’re the most precious thing in the world for me.
I’m profoundly Deaf. So everything I am is based on vision. I’ll say it one more time – Deafness is something I celebrate. I love being Deaf. I have a beautiful second family in the Deaf community, no matter where I go, I know I have that kindred bond to fall back on. Or at least I used to.
The Deaf community does exclude DeafBlind people, despite virtually all DB identifying as Deaf first. We communicate with sign language, albeit tactile once our vision is that far gone, and to have this exclusion is what exacerbates our grief, isolation and degeneration of mental health. No matter how much they may deny it, the organisations do not provide us with much access or support. We are always referred to blind organisations or Able Australia. While Able is barely adequate, they are overwhelmed by demand and as such, in my experience, they have been forced to pick the clients and tend to gravitate towards the far end of the spectrum. This is completely fair enough but for people like me who are scared, worried and feel that we have no hope because we can still “see”… To me it feels like they are saying “Cool, come back when you’re truly fucked. We’ll try our best then.”
This is not a great way to handle this – it creates a vicious cycle of accepting already broken people and then having to dedicate far more resources to these people rather than focusing on preparing younger people like me for the future.
I am going blind.
I get tired easily. The amount of energy it takes to simply concentrate on what’s happening around me is exhausting. Every single day is different. Good weather, bad weather, tiredness levels, how much I slept the night prior, my happiness/depression levels, my motivation…
Sleep is a huge thing for me. Some days I simply cannot get to sleep so I end up having to try and keep awake until the next night falls otherwise I end up staying awake all night and sleeping all day.
People tell me to go and exercise, to eat nutritious food and a thousand other things. That’s all fine and dandy until you really think about it. When my sleep cycle is so fucked up, it’s difficult to go shopping. Let alone exercise. Let alone function!
For someone as self-aware as me, it is horrible to watch myself become sadder and sadder. I push people I love away. I feel worthless. Useless. I want to work, to be a valid person. but there’s nothing out there for people like me.
I am going blind.
I’ve written a few articles for magazines trying to be positive and encouraging. I’ve received some beautiful messages from people, not just those afflicted but family members and peers stating that they have been given new hope. That’s wonderful! That makes me so happy, to be able to give others just that tiny bit of relief.
But I need others to realise that I need help too. Just because I try to be strong doesn’t mean I am. If I don’t come to your party, your dinner, your barbecue… It’s not because I didn’t want to. It’s because I didn’t sleep at all the night before and can barely see. I would be a terrible guest. It’s because I saw a video of something so beautiful I ended up crying for half an hour at the pain that I will never see it again. It’s because I read an article that made me feel small and petty and all my motivation and energy simply left me right there and then. It’s because to get to your house would take everything I had inside me and over an hour on public transport, being hyper-alert and vigilant and then when I’m there I simply sit in a corner and try to keep up and then I have to repeat all of that just to get home. To go to your beautiful party means I have to sacrifice the next two or three days lying in bed completely exhausted.
I’m drowning in paperwork. This is just one example but I quit my job at a school because I felt I could not keep up and I was becoming a liability, a danger even, for the kids running around. So I decided to contact my superannuation and request that my funds be paid out seeing as how I’m now officially unemployable. The fees would take every last dollar (I only had about $4,000 in there anyway) within a decade and I’m only 32. Well, I was 28 then. I’ve spent the last four years waiting for them to approve my payout, I’ve had to do medical checks, go to doctors and get them to fill out forms, I’ve had to do insane amounts of rubbish that I’ve done over and over and over for Centrelink and all these things. Just a couple of months ago, I discovered that I had been rejected for the first phase. Basically, I have to do all of this AGAIN to actually apply for the payout of MY OWN GODDAMNED MONEY. All the last four years were for the “compensation” payout which I knew I would never get anyway because my condition was preexisting anyway! I clearly remember asking if that was all the paperwork for EVERYTHING. Apparently not. And that’s just for super. Let’s not even get to my eczema, which definitely isn’t helped by stress. Let’s not get into my mental health, slowly being chipped away by absurd forms and having to travel all over the place just to fill out forms for something that IS FUCKING INCURABLE! Every single form has at least one box that asks “How long/what medication/whatever”. I understand doing a form once, but when you have to do it over and over and over and over… It gets to the point where you sometimes sit in your dark, lonely room and wonder if it wouldn’t be easier to just stab your fucking eyes out. Maybe then they would understand that just because you are an intelligent human being that refuses to dribble and shit your pants in front of them and tries very hard to be as normal as possible doesn’t mean you aren’t disabled!
I am going blind.
Ushers, quite honestly, is almost invisible to people who don’t know what it is. I don’t wear hearing-aids. They don’t work on me. I got a cochlear implant at 7. Doesn’t work. I wear glasses, that’s about it. The only indication that I have anything wrong with me is I use a blind cane daily. And even then, I’ve had people sneer openly at me on public transport when they see me reading on my phone or looking quietly at people. I’ve had people saunter up to me and practically spit in my face saying “You aren’t fucking blind!”
I’ve fallen over on knee-level things, walked into a pole and smashed my head so hard it was all I could do not to just sit down and cry, nearly hit people because I simply did not see them just 15cm to the left of my face when I turn and point at something.
My motivation has slowly drained away. These days I’m generally pretty paralysed with fear. Nothing seems to have any point. I love my art and photography, hell, it’s my profession, but at the end of each day I just feel more and more meh about it. What’s the point if I’ll never see my work again?
I recently made the conscious decision to “retire” as a photographer because I cannot give 110% anymore and I do not feel comfortable accepting paid work if I can only give 99%. That isn’t how I work. I also make so little out of my work that it’s no longer really feasible for the amount of time and effort I put into it. That’s okay, I don’t blame anyone. I am simply stating the facts.
I am nearly blind.
This is not a letter to make you cry or feel shame or sympathy. I just want you all to understand that there are hundreds if not thousands of people in Australia and New Zealand who are going through the same as I am. Grief, anger, depression and if my journey is any indication, suicidal tendencies and self-hate.
It has been very difficult to open up about this. The very last thing I want to do is make the people I care about worry about me, to waste time being upset and to cotton-wool me.
What I want to see happen is CHANGE.
My beautiful Deaf community, change your attitude please. I completely understand that it must be scary as hell for you to see your worst nightmare in a living, breathing, walking embodiment. Don’t you think I’m not terrified? I am! But I also desperately need you. All of you.
This is not to say that all of the Deaf community is this way. One on one, many of you are amazing. Yet… As a collective… Well, you all just seem to stand there and shrug helplessly. Allow me to tell you straight up:
YOU ARE NOT HELPLESS. By taking the conscious moment to raise your hands closer to your face so my tunnel vision can encompass everything you say… By repeating with a smile when I ask for it… By understanding that it IS much easier for you to come to my house and just give me an hour of your lifetime and how much that means to me, by kicking my door down and understanding that I may be a bit grumpy or depressing and not caring, seriously, I do notice. You may not know it but I do, every single time.
Just remember that there are times when I beat myself up for being depressing. For pushing you away. For wasting time lying sleeplessly night after night dreading the sleep I crave so desperately because I wonder (foolishly, yes but when is anything logical when it comes to fear?) whether I’ll wake up and never see again, leading to my vision being blurry and hazy due to being so tired and so out of whack.
All of this does not mean I’m going to suddenly jump in front of the next tram. I’m a fucking fighter and I’m going to battle this with everything I have, as I have for the last twenty years. But I AM tired and I cannot do this alone anymore. Having my fierce independence slowly stripped away from me does make me feel smaller and smaller and more useless. This also impacts how I feel about ‘burdening’ other people with my presence. Hindsight is wonderful isn’t it? *ironic laugh* I’ve destroyed my relationships thanks to being so out of it and so shut in. I’ve had more love than I know what to do with poured my way and I’ve rejected most of it. I wish I didn’t but when you get stuck in your personal battle with demons that nobody but you can see or understand…
I am nearly blind.
Sorry. Sorry to everyone I’ve snapped at. Sorry to the friends I’ve cut off. Sorry to the beautiful women who have tried to love me and left with their heart broken. Sorry to the people I’ve stared at and just had to turn away and walk off on because my heart could not bear the praise or the idle questions when time is so completely utterly precious. Sorry for wasting so many years completely smashed off my face. (I’ve quit everything, I did slip for a couple of months before Christmas but I’m back on the sober track and trying my hardest to enjoy it.) Sorry I can’t do the pub scene anymore, it’s too dark and I can’t stand the smells and trying to talk to drunk people. Sorry to my amazing family who have tried so very hard to understand and tolerate my high-strung nature and fears and had to put up with the times when I’ve pushed them away yet have always been there with open arms. Sorry to those that don’t understand my bluntness and have been hurt or offended. Sorry. I’m so very sorry. Above all, sorry I’ve lost my way so hard when I really am so blessed to have you all around me and in my life.
I love you all. You may or may not believe this but I do. I see so much good, so much love and so much kindness but in today’s climes of greed and everyone for themselves, we have all fallen victim to the corporate mentality. If you can, try and stop for a moment, put that phone back into your pocket, get up from the computer and go outside and look. Just look. Look for anything green. For a flower. For a child running and laughing. I keep looking at them and while my photography is a double-edged sword, I bless myself for inadvertently forcing myself to look at the world. Please be kind. To yourselves and to everyone else – we all have battles that no one else knows about.
Most importantly of all, please remember that I notice. I always have.
All my love,