An end to my silence.

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.

the_last_deaf_hero___scorn_by_virama

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!

the_last_deaf_hero___wrath_by_virama

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.

the_last_deaf_hero___sadness_by_virama

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.

Be you.

All my love,

Edan Chapman

the_last_deaf_hero___knowledge_by_virama

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29 thoughts on “An end to my silence.

  1. I don’t have the right words to say anything to you brother that will fix it , however your words that I just read are so powerful, so real and so honest . They have in the short time I took to read this , put a lot of things into perspective for me. Your words have given me strength when I need just that. Thank you .Please keep blogging .

  2. Can I just say, ‘My love and support for you Edan is unconditional, and always will be. I am happy, and always was, to visit when you need. Plus, I owe you a dinner my friend!

    This isn’t because of what I just read, it’s because it’s just me. Always here, always a friend, always around (unless I’m in NZ).

    Arohanui

    Marc

  3. Dear Edan, this is very moving and my heart is breaking just feeling you in there, my beautiful son 2. Thank you for sharing your world, as painful and as amazing as it is. I am grateful to have had you in my life for 24 years now, sometimes close and sometimes far….recently way too rarely! As I have said before, my life is so much richer because of you. I love you!

    I know that nothing I say really makes a difference and there is nothing I can do. Apart from spending time with you, which I would love to do. I am thinking of coming to Melbourne around April 23….will you be there? Would love to fly you up here to hang out, show you my new home…..would you like to?

    Big hug from mum 2, Ana

  4. To me, you are never a burden and I appreciate your bluntness. I am always here when you need me.
    I love you Edan … that is always a given XXX

  5. Spoken from your heart and sorry but I had a little tear in my eyes as I read this. You are more than just an inspirational young man. you are my Bro and I love you. Stay strong.x

  6. Kudos for the blog. I am a profoundly Deaf/legally blind author and, while I cannot say “I know what you are going through,” I can earnestly empathise with you. Whether you feel it or not, you are a warrior and a survivor. Regardless of how afraid you might feel of what is to come, you will find a way to be okay.

    I grew up hearing and sighted. Head trauma and illness took my hearing from me and an unknown illness continues to take my sight away, little by little. I watch my interpreter sign from the doctor “It’s all in your head,” and my first reaction is always the same… “Where else would it be – my butt?” People can be ignorant and cruel until one day, the shoe is on the other foot and they find themselves going through the same.

    On any day that you feel a little less strong than on other days, please draw strength from me and from people around you who love you. You are worth every bit of it xx

  7. So much love for you my darling son…such a huge journey can only be undertaken by a man with such a heart as yours. Looking forward to being with you in February xxx

  8. Thank you – Those are important words to share with us all. We all need to reach out and ask for support and to be more understanding, and you’ve done the first step. Do not stop! Keep going, sharing your views, experiences and frustrations with us – this is how we learn to be more empathy and understanding with each other.

    I’ve never really knew you but always enjoyed your work. It saddens me to know you’ve stopped that – so wanted to say thanks for all your awesome work you’ve shared. You’re one talented artist who has the strength to share the work with the world – celebrate that.

    I’ve know lot of people with Ushers and they all varies in their needs, support and development, but still they’re human first… Still, there is one thing I’ve always wondered – what can we, the deaf community, do to make sure the transition and on-going support is always there, regardless the severity of losing the sight over time?

    Let me put this – if you were asked to develop and deliver a DBAT (DeafBlind Awareness Training) to the deaf community – what contents would you put together? I know Able Australia could, but from a person who is actually DeafBlind – it will be much more powerful and meaningful. And this will needed to be delivered continually over generations…

    Once again, thank you. And I do look forward to read more from you!

    1. Darlene,

      That’s a massive question. I will need some time to ponder this. But just know that I will definitely put up a blog post answering this – it is a very important and valid query which needs to be answered with my full attention.

      I’d just like to state for the record that I won’t stop taking photos. I just don’t feel right accepting paid work anymore. There are a couple of personal projects I’ve been wanting to develop and I have a huge backlog of photos to go through and whittle down so fear not, I’ll keep posting a few here and there. 🙂 I’ve just been pretty quiet in 2015, trying to wrap my head around this next stage of my visual deterioration so I’ve been pretty slack with showing my stuff.

      Thank you for the pertinent question and stay tuned.

      Edan

  9. I was once married to the most awesome, amazing and “champ” DB man. He eventually insisted on a divorce when his vision was interfering with his daily activities. I miss him more than anything – he truly was the love of my life. Please know that there are lots of people who do not feel DB folks as a burden. I never did.

    1. You will never know how much your words moved me. It’s all too easy to get stuck inside your head and lose focus, making everything about yourself.

      I have taken your words to heart and will try my very best to remember them. Thank you. Truly.

      Edan

  10. Am inspired by your message Edan,u are amazing person who has endured the life challenges of living as a DeafBlind person, more so am Deaf and i have worked with many DeafBlind persons here in Uganda, with acceptance of our disability we will peaceful live our new life. may you blog touch many hearts and we collectively work towards making the society inclusive of DeafBlind people who are the most marginalized in Developing countries where services hinder their full attainment of their human rights.f

    1. Dear Vicki,

      Thank you for your query. This is far too important for me to respond with a few sentences so I will dedicate the next blog post to answer this specifically. Expect the post to be up within the week.

      However, I would like to firmly emphasize that this first post was something I had to do to clear my head of the build up of all the little things that had built up over the last couple of years as my vision worsened. I want to reassure you that it’s not all bad! I needed to wipe the slate clean mentally so I could move on and to do that I had to project my mind onto something tangible. Yes, it’s a crappy hand to be dealt but don’t despair. Just the fact that you are asking and care is a tremendous plus for your two daughters and I quite honestly can state that this is the most important foundation you could possibly give them.

      For now, just tell them they’re not alone. And for heaven’s sake, please don’t waste time focusing on the future like I did. It’s the most cruel thing you can do to yourself. Just enjoy what you have right now.

      Much love and respect,

      Edan

  11. Edan, your writing is so articulate. I’m sad that you have felt so isolated. We do all have our battles as you say, and some are much harder than others.

    You, Sir, have faced yours with tenacity and insight and a knack for speaking to the darkness in all of us from your experience of life with ushers.

    You know what’s worse than you “being” a burden is having to know that you truly believe that in your heart when in fact, it’s a privilege to the rest of us, that you share your trials and the depths of your fears with those of us who cannot truly know them and have enough hope for us that we might be able to relate.

    Thank you for allowing in those of us who know and treasure the essential Edanness that is contained in your blogs. If you go completely blind, you will still be the one and only Edan. More than a Deaf guy and more than a Deafblind guy and I will still miss you from New Zealand. Probably more.

    I was told a proverb last year that goes something like “the greatest gift you can give to someone is to allow them to give to you”. I like how it captures what a challenge it is to humans to allow ourselves to receive – the decent ones anyway! While recognising it, it speaks to a higher morality of allowing others to indulge themselves and that is your gift to them – if you can handle it. I certainly struggle but maybe that’s a weakness.

    Miss your hugs mate xo

    Shan

  12. Hi Edan

    I read your post a few hours ago and haven’t been able to stop thinking about it. Very moving. I know you’re not suppose to feel sorry for someone but I do. I’m sorry you’re going through something so difficult. I’m sorry you’re going blind. This sucks. This is unfair. I don’t blame you for feeling all the emotions you’re feeling. I imagine I would feel exactly the same. You’re right to not focus on the future. That feeds depression and anxiety because as humans (actually even animals display this too) we all fear the unknown. You must be trying to find the balance of not focusing on the future but somehow preparing for the future? To make life as easier as it can be for the future you?
    I think the best way to do this is to get other people, (people you know and love plus some professionals) to do most the planning and preparing for you. So you can concentrate on the moment. On what you do have. On the blessings right in front of you. The little things day to day that bring joy and peace when you pay attention to them.
    Most people won’t understand your frustration, depression, despair etc but I think all you can ask of people is to love and support you. What you’re going through is different to what most people go through in their lives but I think you should think about the similarities. Your purpose in life is still the same purpose I have and what most people have??
    That’s to train the mind to control fears in order to feel contentment. It’s to give to others, with the expectation to receive nothing in return but happiness from the act of giving. And of course health. Overall, general health. You’re breathing. Your heart, lungs and brain are strong? You’re breathing. You’re OK.
    Does this cover the purpose of life? To obtain contentment, happiness and maintain health? If we keep striving for these then we realise it’s the journey that’s rewarded us. It’s the choices we’ve made and our open minds and hearts that have given back to us. All I can say is give. Making things all about yourself does yourself no favour (to your mental health). It exhausting for you to be in people’s company for long? To travel to see people? It adds to the exhaustion when you think you’re a burden when you’re not (waste of energy assuming the worst and 9 times out of ten it’s totally inaccurate assuming the worst). Start to think of it as giving. I’m giving my energy and time to this person because they care about me. Because they’re worth it. Because I’m worth it. Of course you and others have to compromise and consider how difficult it can be for you at times. Due to travel, What time you’re most fatigued etc. But compromise doesn’t mean don’t see others at all or don’t do something at all. Find a way. Little steps at a time. Find a way to give to others, even if that involves allowing them to come to you and do things for you. People love to feel valued, appreciated, let in. Let into your life and heart. That is a gift you can give. Gratitude. Sounds like you’ve already given with your photographs, blogging and sharing your pain, joy and stories. Keep it up. Also find other ways to give. I promise it will bring you happiness. Get innovated. You’re intelligent. You’re clever. You’re got all our attention now.

  13. One word – Wow! I really hate that we all have to be labelled, ‘deaf’ ‘blind’ ‘visually impaired’ and all that. And I hate that people take for granted how much we rely on some of these senses. or they don’t realise how precious they are until they are deterioriating. My eyes are nowhere near as bad as yours but I am at a high risk of detached retinas, had two already so there is a risk that one day my vision could just go. I loved reading this piece as it stripped bare the emotion of it all. The really crappy moments where you cannot see any way out and when you really don’t want to be upbeat and positive, I have days like that, i usually snap back when I realise there are people worse off than me but in that moment in time it just feels really crappy. I will enjoy reading the rest of your blog XX

  14. THIS. ARTICLE. IS. PHENOMENAL. I am keeping this article forever (and passing it on to everyone who cares to read it). It precisely describes everything Usher Syndrome is, and then some. Edan Chapman is what the DeafBlind community needs…he is our voice. Thank you!

  15. I have wrapped myself in silence for a lifetime.

    I printed your words and wrapped all the papers around me and I began to weep, weep hard.

    The ink on the papers ran down onto my body and I looked at my hand and could still see the word “fear.”

    It scared me but I touched myself where my heart is — that’s where the steel is. It can’t be opened because it is locked and made so well, heavy-duty steel.

    But when I looked down the papers with your words on them were melting into my body. The steel started to open. It felt like fire, like I was burning for a moment. No! I shouted No! You can’t open that. It’s mine. Who are you and how did you get my key?

    The paper just kept melting the steel away until I was exposed. The fear began to run out and the pressure was lessening. But who said you could do that to me? This is a private matter and this is MY body and MY brain. I can do with it what I want!

    I pulled my sticky hands away from my chest and the fire was spelling your words. I saw “mental” and I saw “fear” again and I saw “help.” That one really got me. Help. Yes, I need that word. I need Help. But from whom? There are things I have to figure out now. Now that the fear is coming out of my open heart, yes, I have things to figure out.

    Ohhhh, I didn’t want this. I didn’t ask for this. Damn you. Why did you come? How did you find my key? My God, more pressure is leaving me. My muscles almost relaxed and my teeth aren’t clenching. Who are you, who said you could do this to me? It hurts so good.

    Your words. They melted my steel secret and opened my soft heart, to be exposed to those people who stare and look away, then whisper and stare again, and finally, look away for good.

    Now they can see inside me! Oh, God, how. How, how, how do I deal with this? I put it all away so I could be a fake. It’s easier to be fake. I don’t want this. I need this. Help.

    (Edan, thank you for such real, wrenching and much-needed words. I love your brain. I write about the pain of autoimmune and degenerative bone disease and advocate for the fair treatment of pain. Someone in my life sent me this today in an email. It was meant to be. I have a friend with Usher’s and I suffer from several chronic pain diseases. I may be a writer too, but that’s not why I wrote this response to you. This is just plain honesty from me to you. Please send this article to The New Yorker!)

    1. Dear ME/CFS,

      I have to say I’ve been trying to work out how to respond to your amazing reply for a few weeks now and I’m still at a loss. Please don’t take this in any way that could be negative, I simply cannot work out how to respond in kind. I’m humbled.

      I do have one idea but it will require a bit of time so if you can be patient with me… You will get a response. 🙂

      Thank you.

      Much love

      Edan

  16. Catching up but never more inspired than when I read your words ! Miss your smile and would love to catch up
    One day to share some time
    Eve

  17. Hi Edan, words fail me but I just wanted you to know that I loved how you have written this. I work with a gentleman in Liverpool England who is Deaf Blind. Born profoundly deaf and developed Retinitis Pigmentosa as a young adult. He now has no vision and has no speech. For the past 3 years I have been trying to get others to listen and to try to learn to engage with him in the community which we live. I am currently teaching the emergency services and anyone else who will engage, basic block communication so they know how to converse with him and other Deaf blind in the community. As this week is Deaf Blind Awareness week in the U.K I am trying to raise as much awareness as I possibly can!

    Having read your words, I wanted you to know that I’m totally moved by what you’ve written and have spurred me on to carry on shouting from the rooftops to anyone who will listen! Thank you

  18. Hi Edan
    Just want to send you lots of hugs and kisses. I’m your mum Sue’s cousin Annie Stuart (nee Snedden.) I will keep you in my prayers.XXXOOO

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