Losing sight, gaining perspective (a few reflections on going blind)

(cheesiest blog title ever.. don’t worry  i groaned at it myself when i wrote it)

Here’s the thing. As most of you would know I am 28 years old, a writer, performer, community activist, youth advocate, feminist, sexual assault survivor and many other things too. There are so many markers for self definition they are most likely too numerous to list here.

But what a lot of you wouldn’t know is that I am losing my sight.  I have selectively told people and then decided to go public on the internet. I decided to do this because I don’t consider disability to be a great source of stigma or shame and honestly, i owe it to the people around me to be upfront.
 I have a benign optic nerve glioma. I have had it for the better part of almost two months and it is completely inoperable because of significant vision loss and associated risks.  I have elected to go on a drug trial to shrink the tumour but there isn’t anything that can really save my sight. In the next 18-24 months I will be completely blind. Optic field tests put my right eye at 14/20 and my left at 16/20 and despite the efficacy of the trialled drug that is expected to fall by the end of the year.
 The past few weeks have been a blur of neurosurgeons, oncologists, radiotherapists and people deciding what to do with my once again problematic body. I am significantly impaired by Atvistan, the trialled drug i’m on, with nausea vomiting and hair loss.
(about to shave the mop off as soon as this is written)

am i scared?

fuck yeah… 

I keep an outward sense of optimism, a sense of being able to weather the storm, cope with anything that comes my way. But honestly, if someone were to say to me i’d wake up tomorrow and be completely sighted and without tumor growth, it’d make me more happy than any drug or surgery or therapy.   I am wracked with feelings of uncertainty and having to sit back and recieve news, and treatment. Not being in control of my body frightens the hell out of me. It brings up old wounds that even though they have nothing to do with the physical process of blindness are related to the incredible sense of helplessness i feel most of the time and the sense of helplessness that i grew up with.  I hate being told there is nothing we can do, because there always has to be something. Possibility is how I’ve chosen to live life,  and to be told that possibility doesn’t apply here, that we are in territory that doesn’t deal with possible, is completely destroying.

However, I think what this has done has made me more mindful. I’ve begun to actually look at things, physically and emotionally. To take in my surroundings, because i know i will not be able to soon.  We all have things that we see, both with eyes and with our hearts. I hope my eyes, when they fail, will be replaced by the vision of my heart. (sorry, turning on the cheese again, but i’m in that kinda mood) I am now starting to realize what a beautiful city I live in. I am lucky to have had 2 wonderful years of seeing it all.  I hope as i start to be unable to see it it will still remain beautiful and I uncover that beauty in different ways.

in closing, i guess for you all now, the most important thing to remember is that I will change. But i still remain a person of integrity, dignity and value. That will never change.

 

 

 

“Forever means for the rest of your life” (a post for Dad)

To say i miss you would be an understatement.

To say i’ve yet to fill the gaping void you left with anything meaningful would be a complete lie.

All i  have left are the memories you imprinted onto my heart.

A year to the day I got the phone call saying Dad was clinging to life in hospital in Adelaide. I was so excited to be making my first trip up to Brisbane in 2 years to see Emma Dean in Cabaret, and was looking forward to doing my first poetry feature up there.  When I heard my aunt’s trembling voice i knew straight away. The flight over was agonizing, time seemed to slow down to almost nothing. Every routine wait, for my luggage, for a taxi, was precious seconds I could have been spending with him.

as it turned out I was four hours too late.

 

There was nothing I could do.  Nothing anyone could.  It turns out my aunt had been trying to reach me the entire flight over.. 

The funeral was beautiful, in as much as funerals are beautiful. So many of Dad’s loved ones. So many people who had been touched by his kindness and grace, compassion and good humour.  Afterwards we returned home, to the house i grew up in, the house that a few weeks later i would find out would be mine. The barrage of well wishers, the well intentioned friends, the people who didn’t know what else to say other than “i’m sorry”. 

One of my favourite tv shows ever is ER, especially the episode where Mark Greene dies. his wife Elizabeth Corday says one of the colleagues of Mark at the funeral “it doesn’t feel like he’s gone to me”… and a year later, it doesnt. I still feel that closeness, the bond that we’ve had and still share, only it’s distant now. he is somewhere i can’t reach and it still flattens me.

The most enduring memory I have of Dad is when we used to go to victor harbor, a 2 hour drive from adelaide on the south coast.  I would have been about 5 years old. we were feeding chips to seagulls and I said “what does forever mean, dad”  and he said ” forever means something doesn’t end. it’s for the rest of your life. so when i say, i love you forever, it means i love you for the rest of your life”. 

so here, in a very small room, or a loud cafe, on a stage, in front of a microphone, over a coffee or a cocktail, before I go to sleep and when I wake up. This is forever. For the rest of my life.

Shrouded in Silence – my battle with self harm.

here goes absolutely nothing.  read with caution if this has been an issue for you. If you need to speak to someone or are at immediate risk stop reading and contact lifeline at 131114

 

On last night’s 730 report a young woman, Nellie Worringham, discussed openly and candidly her battle with self harm. I watched, and found myself misunderstood no longer. In fact I was actually nodding in agreement with practically everything she said. This is my attempt to put into words what i’ve felt for so long to be completely shrouded in silence, shame and stigma.  So readers, please take this as the opening of a dialogue. I want people to listen, sure, but to discuss this issue in their workplace home and sc hool – to make sure that sufferers are heard, understood and accepted as part of their communities

I honestly don’t remember the first time. It was somewhere around early adolescence, which I am told is typical.  What I remember was needing an escape route for a myriad of feelings that began to well up inside me. I had just experienced what was to be the beginning of a long period of sexual abuse. It is absolutely no coincidernce in my opinion that trauma survivors make up an incredibly high number of those that self harm. Unfortunately I am part of the statistic. In fact, research has shown that the younger the survivor of trauma, the more likely they are to go on to exhibit self harming behaviour.  For some of us it’s burning, for some of us it’s overdosing, for me it was and still is, cutting. Although not so much at its mercy anymore, self harm began as a way of dealing with post traumatic stress disorder. The rituals associated with self harm gave a soothing balm to my thoughts, order and control amongst disorder and chaos. The deeper it was, the more likely it was to actually be of assistance.

However, despite popular myths. I was never suicidal. Self harm fulfilled the purpose of staying alive. Unfortunately, Self harm is often conflated with suicide. Indeed, in some of the literature it is even referred to as “para suicide” yet nothing could be further from the truth. It is a way, a completely maladaptive and harmful way, but a way of processing and dealing with almost unbearable feelings. When I cut, I am really not thinking about the assaults that robbed me of my identity, of all the associated guilt, and mixed up fear, rage, and just horrible gut wrenching shame. I was focussing on the immediate pain, the blood and the sharp object in my hand. It distracted me from all of that. Temporarily of course Survivors of trauma often also experience intense episodes of depersonalization, of not feeling anything at all, at being trapped in a sense of non reality. Seeing physical evidence of my humanity allowed me to experience being human for the ten seconds it took me to commit the act. .  My parents discovered the behaviour as a young teen and attempted to send me to every psychiatrist, pychologist and doctor they could think of in attempts to diagnose me, explain away my behaviour, and of course medicate it. No co incidence once again that i was first put on anti depressant medications when i was 15 and have been on them since then. The damage that’s done to my brain chemistry and psyche are a subject for another blog post altogether, but it warrants a mention. The overwhelming irony is not once was I asked to explain why i self harmed, which to me signified the fact that it really didn’t matter. it fuelled the cycle and reinforced in my mind that self harm was THE ONLY way of coping.

Years went by, and the lack of an ability to constructively deal with my feelings was compounded. I would go through periods of not self harming, to self harm crowding my thoughts.  I’d submerge everything to the point where it came out in overwhelming bouts that were too hard to deal with so i’d self harm. Then i’d feel guilty and the cycle would continue. I never thought this was a normal reaction to abnormal events. I’d go to every length possible to hide what I was going through.  Nellie Worringham talked about not wanting to seek medical help for wounds. I identified very strongly with this feeling. It is not untill now that I have found a doctor who will non judgmentally treat me, look at my wounds without contempt. In fact, we developed code words for if i didn’t feel comfortable telling her straight out but needed some assistance. She understands completely my lack of desire to attend the emergency room. When a sufferer seeks ER treatment the response is never sensitive. They are often met with a huge amount of disdain by professionals, unneccesarily institutionalized, or just plain ignored. The first time i injured myself bad enough to seek medical assistance, I was left with the wound for four hours, which was the standard window for suturing, given first aid,  the number for crisis lines, and ten days worth of valium.  The first psychiatrist I spoke to in my adult life diagnosed me with borderline personality disorder after 20 minutes worth of consultation, and refused to acknowledge the role trauma played in my attempts to cope via self harm.

It is a complete mystery to me why self harm is so misunderstood. It doesn’t take a great deal of time to sit with someone and ask them why they behave a certain way. Yet we continue to presuppose our ideas of why certain people do things, failing to acknowledge this only worsens the problem. It is surely more preventative than arbitrary stigmatizing labels.

“attention seeking”

:”borderline”

“trouble maker”

These labels have not served me and they do not serve people like me.  They speak to a system that disregards the distress, the horrible levels of violence and pain people endure to come to a point in their lives whereby self harm is the only option to preserve life.  I often go to great lengths to disguise my scars. I am terrified of the nosey but generally well intentioned remarks. The looks over, the strange whispers, and just the out and out rudeness.  What also bothers me is my more well intentioned friends saying ” just stop” or ” find another way”.  What people must understand is that it isn’t that simple.  I am engaged in the long slow process of unravelling what’s been done to me over years.  There are times when there will be bumps in the road and i’m more likely to fall into old behaviour patterns, but that doesn’t mean I am “attention seeking”  it means I am in need of help far beyond my capacity to verbalize.

The most important way to support a self harmer is to remain open and non judgemental. If you’re a psychiatrist, put away the DSM and listen to what accompanies the behaviour.  Be prepared, whether you’re friend, lover, parent, spouse to  sit with some awful stories, some extremely deep personal tragedies, some stuff you may even be implicated in yourself. No matter how confused you are by what you are seeing, it is just as important that you don’t let that confusion get in the way of providing support. I hate to say it, but my behaviour isn’t about you. I heard countless times growing up the idea that my behaviour was making people look bad, or was “hurting them” more than me.not helpful.  Give the person before you your complete support, let them know that they can come to you.  When i learned I was no longer going to be judged for my behaviour, my life was made a lot easier. I found out I could discuss without shame the things I had been going through. 

Slowly

slow baby stutter steps

But i’m emerging  from an overwhelming shadow. with your help.

Masculinity from one angle: The Testosterone files by Max Wolf Valerio

“Transsexuals  have an opportunity to probe deeply into the intrinsic nature of identity – its slipperiness,  its preconditions and expressions – as well as the ways in which we determine or know who we are and who we want to become”   (245)

quotes like this kept me reading Max Wolf Valerio’sThe Testosterone Files: my Hormonal and Social transformation from Female to Male.   a Native American of Latin American decent, Valerio, documents his life both before and after testosterone. He details his early life as a radical feminist, who through various relationships with women as a young woman (Anita) and then as a young man, he discusses the effect hormones had on his physical and emotional life.  From everything, from physicality to the very foundation of his politics Valerio details how his life changed as he began to take hormones, and went on both top and bottom surgery journies after a period of some years

I picked up this book because I had heard of Valerio’s writing in transmale circles as well as hearing him mentioned in the work of Patrick Califa and leslie Feinberg. I read a book so close to the understanding of myself I found it almost alarming. There were many times when I found myself outwardly nodding in agreement with what was being said. For instance, the reaction of some of Valerio’s lesbian friends, who no longer wished to associate with a straight man, and the idea of no longer fitting into a “queer” community due to being straight and male.  Valerio with poetics, power and fond reverence at times details his life as a young girl who never saw herself as such, and who grew from that little girl to someone who never fit the lesbian scene, but as many men do, took it on in order to be socially acceptable. Valerio also details the emotional affects of testosterone, the removal of emotions, distance and anger developed as a result.

However, for every nodding in agreement moment I found some cringeworthy, and was often left wondering how young men just coming out who don’t neccesarily fit valerio’s in your face extremely sexual and dominant way of being might react.  Whilst disavowing his former radical lesbian feminist roots,  as is understandable, Valerio also develops an attitude to women that is highly questionable, and often blamed solely on “vitamin T”  He said at one point the last thing he wants to be is a “sensitive man” and often resorts to relegating the differences between men and women to hormones, the experience of one or the lack of another.  Having experienced both “skins” does give you a certain sense of authority, and whilst there is an interrogation of gender running through the book,  some of the quotes from the author himself left me wondering…well, what if you are a “sensitive” man? what if you are someone who doesn’t experience masculinity in the same overtly sexual way?  Whilst reading this book, I encourage readers to keep in mind always  that this is one man’s experience of hormone, culture and politics.

I encourage young men, particularly those who don’t subscribe to mainstream cultural attitudes towards women or who’ve had alternative experiences to speak up and pen their own stories.  In the mean time, give this one a read, but critically.

 

My letter for Ranjini

From http://www.lettersforranjini.com:
Ranjini is a mother of two who has been declared a security threat by ASIO. As a result, she has been separated from her husband and locked up in the Villawood detention centre with her children. Current law says that she has no right to be told why she is considered a threat, making it nearly impossible for her lawyers to mount a defence. Ranjini faces indefinite detention at the hands of the Australian government.

The extended form of my letter to Ranjini is below, on the site i had to deal with the limitations of an internet form. This practice is simply unacceptable and must end. To send your letter of support to Ranjini, go to http://www.lettersforranjini.com and click “send a letter” then watch twitter @Ranjiniletters as for when it goes live.

Dear Ranjini
I heard of your plight after a candlelight vigil and would like to write to you to let you know that you have a great deal of support in the Australian Community. Many of us believe that it is a disgrace to deny refugees, having already suffered so much oppression in their homeland, the right to a peaceful and safe existence.

I am not a refugee, I’ve never seen war or known what it’s like to loose family or friends but I do know that we have a duty to take care of each other particularly those who cannot speak up for themselves. My grandparents were refugees and benefited enormously from living in Australia.. it is unfair that for whatever reason, those same rights have not been extended to you or your family. You have my complete support, and I hope that the next time i hear of you you are free and these horrible practices have come to an end.

Please continue to, wherever possible, share your beautiful artwork with us. You have a gift and I hope you are given the ability to foster that gift.

with love, Friendship and support

Matthew James.