On Living with Chronic Illness

Academia has swallowed me whole and blogging with my regular level of prolificness (words, never mind, i’ll create them) hasn’t been a thing. However, there have been a few things that have come up for me that have made me want to reach out to people I know and also have this in writing as a reminder to be gentle on myself and you can all hold me to it. I am having a particularly tough time with my health at present. I’ve just gotten through a few epic weeks and am having to restock the emotional pantry in order to move forward. I am also frustrated with the current level of ableism shown towards myself and my fellow chronic illness sufferers and people with invisible disabilities. So I thought i’d put together a few things i’ve been told, remembered, or understood. This is highly individual to me, it may seem 101 to some of you, and patronizing or cheesy, but it really helped me so i’m sharing.

1. Never comply with requests to justify or prove how ill you are. Not are they only incredibly rude, they often serve no purpose other than to demean you. You know the truth you live with and unless someone is playing a supportive role in your life, the level of your impairment is none of their damn business.

2. People will hurt, doubt, and accuse you. Chronic illness, particularly the kind of illnesses that aren’t seen or otherwise immediately identified, frightens people. It is hard for people with the priviledge of good health to understand how someone can be unwell constantly, or can have conditions that make participation in things impossible at times. Never take the accusing tones of others as proof of your own deficiency, it is not something that is within you, it is something that happens to you. Chronic illness is not a character flaw.

3. Persist. If you cannot get the right treatment, or are having trouble finding someone who will take you seriously, keep going. research your condition, find accessible doctors, therapies, modes of treatment that will benefit you, even if the decision you come to is not to treat your condition at all. The best resources are people themselves, talk, and make links. Medical professionals are often hostile to people who’ve researched and know their conditions, but ultimately you are the expert in your own life and health.

4. Boundaries are yours to assert, create, and maintain. One of the most challenging things in living with an illness is that people assume your body is property, and not yours. Intersected with gender and race, these can provide very many challenging problems. You have the absolutely unalienable right to bodily autonomy, and to accept or reject certain ways of thinking or treatments. For instance, I am constantly told by one friend that medications are harmful and I should embrace natural therapies. It took me a long time to realize that this would be an altogether bad idea for me, and telling this person that her advice is welcome but not neccesarily followed, was one of the best things I ever did. It cleared up where we both stood. This also goes for knowing your physical boundaries, knowing what you can and can’t do, and not being responsible for anyone else’s feelings if you simply aren’t up to doing whatever it is that needs to be done.

5. Never feel like you have to be an advocate for whatever condition you have simply because you have that condition. Advocacy is incredibly important, as is speaking back to people who have harmful views, and promoting awareness of the condition itself, are all vital parts of promoting greater health and wellbeing, however, it is incredibly important to know that it is not something that should be expected of someone. It should always be freely chosen. You are perfectly within your rights to live however you damn well choose, and not have anyone tell you you aren’t “doing enough”

6. You are enough. No matter who, what, how, why, where you are in your journey. You have infinite strengths and capabilities. I don’t want to say that your impairment is not your identity, because for some of us it is, but you are an infinitely capable, strong, powerful, effective person. On the days when you feel none of those things, it is perfectly ok to say… I am enough, in my state of brokenness, i am just fine.

also… i love you..

The Importance of Being an Eight year Old (Full Version)

For those of you that wanted it, here’s the entire thing as of today.  It will most likely be edited again and made into a new thing later if anyone wants to publish it anywhere else.

I didn’t know my brother was going to become a Dad until he told me when we were on our roof drinking pre mixed vodka  as we did on regular occasions.  It was our favourite adult sibling activity, the roof being easy to access with a reliable ladder and pre mixed vodka being our favourite and by far the cheapest thing to drink that we both could stomach.   To me, this was the little kid who was barely out of Batman Pyjamas who’d  played with toy action figures and gotten pissed off when I couldn’t be beaten at Mario Kart.  Fatherhood seemed a thousand miles away.  I asked him what he wanted to do, wether his partner planned to keep the baby, and what they’d discussed.  He said .

“I’m not ready, but I can get ready. “  And he did.  He went to every parenting class, read every book and listened to his partner deeply.   When she said she wanted me present at the birth at first I wasn’t quite sure. My brother reassured me that  it’d be fine. I spent the last few days before my nephew was born talking to my his partner and making sure she was ok.  On the day she was induced into labour it was  the middle of the week, I was at work and every time my phone rung I  had an anxious flash through my stomach just in case.  I was useless, and my boss wonderful enough to  let me have the day off, having had four children of her own.  I got there just in time to see Alexander Nicholas Ritchie being born into the world.   25th of October 2005 became a date that is etched into the diary of my heart forever.  

Almost instantly, however, we knew something wasn’t right with him.  He didn’t grow particularly much and had issues feeding.  When he was put onto formula we thought the problems would be solved,  and for the first few years  of his life everything seemed alright and he met all his usual milestones  until he did not recover from jaundice and began to have  problems with the yellowing of his eyes and lips. He was taken back to the Women’s and Children’s hospital at the age of four and began to undergo a battery of tests including him being sent to Melbourne for a stint, one of many, in the Royal Children’s Hospital.  At the age of four years and 3 months  My nephew was diagnosed with chronic pediatric  portal vein stenosis  - a narrowing of  the vein that delivers blood to the liver, and other forms of chronic liver disease.  He has been in and out of hospital and between the repairing and removal of portal vein shunts, and removal of parts of his liver that no longer work he’s  had almost 20 operations in just over four years.   He had a partial transplant in 2010 and it was looking great until October  2012 when the first signs of rejection had set in.  He’s now been slated for a complete transplant and it is just a waiting game mostly between Melbourne and Adelaide with him spending most of the year in the Royal Children’s Hospital.   During that time his parents relationship broke up, when it became clear his mother was not up to the task of taking care of such a sick kid.  It is a constant battle to remind Alex that it is not his fault things didn’t work out,  that is not because he is sick, that sometimes  people just cannot love, despite their best intentions.   So we became his family.  For the time he is in Melbourne  we are his next of kin. We love him and we take care of him as if he was our own child. His family are not just us, but the teams of doctors, social workers, nurses,  people who take care of him every single day.  open.  people just cannot love, despite their best intentions.  Despite th

 Despite the adversity, this kid plays with his imagination wide open.  He  asks me questions about everything, from veganism to particle physics,  poetry and the meaning of life and looked  at me when I answer them  with an expression of “ don’t fuck this up grown up, I’ll know if you’re lying to me”.     One day he asked me:

“where do you think we go when we die”?   It was something I’d been told he may ask, but  wasn’t prepared for.  So I said to him  :  “well, maybe we don’t go anywhere, maybe our body goes to sleep but the bits of us that makes us who we are stick around and live on in other ways”.

“So you mean, like a ghost or something,”?  He replied.    When I nodded he said, after thinking a minute. 

“Well, I want to live on as Batman, that guy was pretty cool.” 

What he doesn’t understand is that to me, he is more superhero than any comic book character you’re ever likely to find.  The closest we’ve ever come to losing him is just before Christmas when he contracted a severe bout of pneumonia and ended up needing to be intubated for a while.  I told him that he didn’t need to  fight if it was getting too much for him, because even the bravest superhero knows when it’s time to give up.   He made it through that time and is now steadily getting better but it’s still just a waiting game.  He is a  sponge for stories, for information about people, and the more outrageous the better.  When he was unable to go outside his favourite thing for us to do was sit and look out the window that looked directly out onto the street.  For almost a month that window was his only form of being able to see the sky , the sun, or the trees, although winter in Royal Park doesn’t offer much in foliage.   He’d point people out going past in the street and listen to me make up stories about them.  He’d offer small details, but was generally  content to let me tell the story. 

“What about that one”?  He pointed out a family of three people hurriedly getting on a tram.

“Shh.. “  I replied,  “you can’t tell anyone, but they came to Australia as part of the Witness Protection Program  to escape Mexican Drug Lords”  

“Annndd,, how about that one”?    He pointed out an old man with a walking stick walking in the direction of the Hospital. 

“ That one is visiting his new baby grandson down the street,  he’s never had a Grandkid before, and can’t wait to meet him”
“Does he have a wife”?  

“Nope, it’s just him, that’s why his little baby grandson is so important. “ 

“Annnd how about that one,  she’s kinda pretty”.   He pointed out a dark haired brown eyed girl on the street below carrying a bunch of flowers. 

“She’s on her way to a secret meeting with her boyfriend, she’s not meant to love him but she does, very much”

Alex looked confused, but pushing his tiny glasses back up his nose he said :

“I don’t understand… Isn’t everyone meant to love each other”?  Before I could give him an answer he  was asleep in my arms and I’d gently put him back to bed and go back to writing my book of stories about a time travelling boy named Tim, who meets a magical eight year old girl named Sarah and they go back and forward to different places amassing rag tag army of kids that no one loves but ultimately change the world.  Because that’s the thing,  Alex has irrevocably changed my world.  He’s opened me up to love,  play and affection.  Sometimes it just downright terrifies me that he seems to have this unshakeable faith in me that I am not entirely sure I deserve.   When we’re older we fret about rent, our jobs, school fees, or how we’re going to pay the next bill, but with Alex it’s just one big dose of right now. So that’s my commitment,  to be the person he already sees me as and never stop asking questions.

 

I can write things quickly, but this post has taken me over two hours to write. Given Mia Freedman, Susie O’Brien and a host of other victim blaming statements made recently, this is for all of us, the ones those comments affect, the ones who have our soul grated at the more and more we hear them. Trigger Warning obviously for descriptions of rape and victim blaming sentiments.

I told my mother when I was fifteen about the things my stepfather was doing to me. The fact that he sadistically sexually assaulted me on my 14th birthday and had been doing so since. and she blamed me. She still to this very day makes the painful choice to live with my rapist. She says she I ruined her family and her marriage… I believed it was my fault. (But it isn’t)

I told a doctor who instead of abiding by mandatory reporting guidelines, asked my stepfather and mother to come in and meet with her and asked my stepfather if the allegations were true. When he inevitably denied them I was told quite categorically that making allegations of such a serious nature was not a game, nor a way of seeking attention. that it could ruin someone’s life. That was the year of my first suicide attempt.(I was 16)

I confronted one of my stepfather’s friends, who also participated in an assault.. He told me I enjoyed it… I began to think that on some level I must have. (I didn’t)

I went to the police in 2006 after being terrified of them for most of my teenage years (he was an officer) they told me they’d investigate and they did, but after almost five years in the system the case proceeded to be dismissed. He remains a police officer to this day and it is unsafe for me to ever live in Adelaide on a full time basis again, separating me from what little family I have left, including those that supported me. Once again I believed it was my fault. (But it isn’t)

3 years ago next week I was travelling to a Halloween party. It was one of the first times i’d been out in public as a trans person, preferring to keep my gender non conformity secret. I was physically and sexually assaulted by a man who has since left the country. The police did not investigate properly and I was left feeling like it was my fault because of the temerity I had to be myself in public. (But it isn’t.) 5 weeks after the assault I attempted suicide again, and almost succeeded.2 days in intensive care and 4 weeks in a psych ward.

Last year I was sexually assaulted at work. I did not go to the police because I knew they’d blame me as my occupation is a sex worker. I told only other workers. They believed it was not my fault. (Because it isn’t).

This is what victim blame looks like. This is what happens each time we suggest that in some way a victim of sexual assault is responsible for the violence that another individual chose to enact upon them. I am one of the lucky ones, I have had time, care, and effort put into helping me realize that my experience is the result of a profoundly sick society, that sexual assault is not my own personal affliction, nor is responsibility for sexual assault a burden I have to carry. There are many people who don’t have these things, that read and listen and take into themselves the bullshit about responsibility being theirs. It isn’t. It wasn’t then and it never fucking will be. It has been over 15 years since I was first a victim of sexual assault, but at the time I told my family until now, myself and many survivors are faced with the same attitudes. These are attitudes that if we are to progress as a society we must profoundly, vehemently, unequivocally reject.

Because it still isn’t my fault… never.

rain, umbrellas, metaphors and feelings about depression. .

I don’t want this to be one of those “this is what depression is like for me feel sorry for me because my life is truly awful” posts but I felt deeply inspired by Caity Fowler’s “White Light Black Dog” EP. I  figured if the woman could bare her soul enough to write such incredibly poignant beautiful songs about depression, surely I could type some words into a computer screen.   Also,I am convinced that people don’t get the grind, the fucking terribly painful, every joint is aching self loathing that comes with a disorder like major depression.  that  For what it’s worth, I have officially been diagnosed with cyclothimia. It’s not major depression but a form of bipolar disorder. I don’t experience the grand highs of bipolar, my highs are less euphoric and more the hyperactivity type of elevation whereby my house can be cleaner than Buckingham palace, but rent on said house has been unpaid for months. I never really knew what it was until someone explained it to me, but a long with Post Traumatic Stress Disorder, it seems to be the only thing that explains my crazy whirlwind mind. Mental illness is terrifying, for you, for everyone around you who’s witnessed your highs and lows and in betweens, but I think a great deal of that terror comes from simply not knowing what to do, or say, how to act or not act. Quite frankly, I don’t have that figured out myself yet, when depression hits, and it often does, like a tun of bricks, I am not in a position to know even how I feel, because, equally frankly, I am too busy trying to summon the energy to put on pants rather than figure out how I should feel about putting on pants, or even if pants are the right course of action for that day. In short, if you want to know how to feel about my mental health, you’ll have to figure it out. There are many things I can’t do for you. This is one of them.

Yet, the overwhelming irony, is that there’s almost an expectation isn’t there? of people with mental illnesses, that, illness aside, we will be able to just get along with our lives and function as if nothing is going on inside us. We internalize this point of view, so as to appear to the people who don’t know, that we ARE fine. We come to deny the fact, to paraphrase Stephen Fry, that it’s raining, rather than say, it’s raining, and eventually the sun will come up.  We become masters at putting up walls, convincing everyone we’re fine, shrugging our shoulders nonchalantly when people ask us how we are, when really, some of us are just holding back feelings of complete despair. When I get depressed, I often hide it by becoming even more bubbly, effusive and sociable, even though that sociability comes at a great cost to me.  I liken being social when depressed to running with a sore ankle. if you take painkillers you may not notice it, until they wear off, then you’re hobbled for weeks.  I digress. There’s an expectation that unlike someone with a visible illness, we’re told ” get on with it, stop moping, what have you got to be sad about”, in a way that just would not be tolerated with other illnesses. This is called stigma. Stigma operates in so many ways to keep sufferers of mental illness mystified, to keep us from being able to not only get the treatment we deserve, but talk about our illnesses openly and as if they were like any other part of our lives. I have had every stigmatizing epithet thrown at me, from battling self harm to being in psych units to having to deal with less than sympathetic treatment providers,  it is all part of the cycle that stops the mentally ill from participating in society.  We are othered, told we don’t matter, abused in institutions and blatantly misunderstood. 

When I first experienced depression I honestly didn’t believe it’d last this long. I thought it’d be something I’d go to the doctor and get fixed with medication. It wasn’t until I entered psychotherapy that I realized all this crap that was just getting pulled out of me like one of those clowns with a never ending handkerchief.  The one thing this psychotherapist taught me was, depression is real, a hugely normal response to a body and mind being placed under enormous stress and trauma.  What she said was that no matter how I experienced depression, whether it was as a feature of cyclothimia or as major depression, it was a real and  valid expression, condition, and feature of my life – but not all of my life.

People ask me how I survive, what I do to get through, honestly… Honestly, I don’t know. Sometimes I wonder the exact same thing.  I think everyone has an inbuilt survival mechanism that sometimes takes over when It comes to things like this. Suicide happens those mechanisms are just too overwhelmed or depleted to cope. This is why it’s incredibly vital to ask people you know have had depression, not in a patronizing way, but in the most genuine way you can muster, how they are. Be truly prepared to hear the answer.  When we shrug our shoulders non chalantly try and see through that to someone who’s probably hiding a great deal from you. Us depressives, we worry, we worry about how everyone else will cope with our illnesses, but what we don’t do is often worry enough about ourselves.

This is what I ask… worry about yourself, be as kind as humanly possible to yourself, and often that includes the very painful task of having to ask for help. To be faced with  faces that say ” I don’t know how to help”.  But the most important thing to do is ask.

In closing, a woman on twitter (who knows who she is but I won’t name) asked people with mental health problems what they need… what I need the most Is for people to feel supported enough to be able to talk about their illness as if it was a part of them, not something to be stigmatized and feared, not to be ignored or shut out because of.  I hope this blog is a fraction, a tiny inch closer to doing some of that.

also. if you’d like to purchase white light black dog  “like” the wonderful caity fowler on facebook at (caity fowler projects) it is such a goregeous set of songs.

 

A Letter to my teen self.

If your teen self was sitting in front of you, what would you say to her/him/them?

 This is something I’ve been encouraged to answer for a very long time. I think despite the traumatic context of my teen years the content would have been the same regardless. My sincere apologies for being so lacking in content recently, I am simply required to put my creative energy on a shelf in order to be a good academic soldier. Anyhow, here it is. A really lacking, rough, non exhaustive things I wish i’d told my kid self.

To You

There is a lot I have put off telling you.  In fact, I know I have down right ignored your existence – doing so has been a vital part of my survival. However, despite our infrequent death wishes and best intentions we have both arrived at the end of our twenties, and it’s time for older me to tell you some stuff I wish I had known back then that’d  definitely have  made the road easier for you.

1. You are all you need :   There were so many people you wanted to please. The church, your parents, schools. you wanted desperately to fit in, and be part of the world you saw going on around you. Like any kid, you wanted to know that there was at least one place you belonged.  The most important person to belong to is you. . If you want to express yourself a certain way, fight every inch of the conformity that will no doubt be thrust upon you at different times of your life. The freaks you find in your later life are the ones that will sustain you, give you hope in times of sadness. Embrace your individuality knowing it will be the thing that makes you special.  When it comes to sex,  and relationships, well that’s an all life long learning curve but here, the same rules apply. You do have innumerable rights to just be exactly who you are, with whoever you want, at any time. You will get a lot of bullshit information, from a lot of bullshit places but don’t be afraid to seek out the information for yourself.

2 No matter how bad  life may seem – there is always something better.   This is one that older you struggles with still. You have already endured more than anyone should ever go through. Ever. It is unacceptable and reprehensible the way in which you have been totally failed by people who are meant to care about you.  You will suffer countless bouts of depression, anxiety and terror, but you will survive them. You will be incredibly sad, devastated and betrayed but you will also enjoy some of the most exhilarating experiences life has to offer. There will be places and people that if you let them, will leave permanent indentations on your heart. You don’t need to wait for the day to arrive when you will be brilliant, that day is now.

3. It was not your fault. – child of Greek migrant stock, and also product of rigid catholic school system, you will have guilt down to a fine art. Let me tell you, it serves no one except the people who harmed you. It will take an incredibly long time, but you will learn that the things that were done to you, and the things you do to yourself, are simply not your fault. Nothing was.  There was a lot that you were made to do, that had you known better you’d have not done, but there was an equal amount that you could not control, nor should you have had to. None of this was any reflection on the person you were becoming, or the ways in which you were developing. It was simply a reflection of the people involved in your life. Remember that you are blameless.   In fact, just know that guilt is possibly the most useless emotion ever, and the sooner you are done with it the better it is. Use whatever anger, fear, guilt you have to make the world better for others.

4. Don’t be afraid to speak .  There is so very much acting to silence you. Everything around you says keep quiet, tow the line, don’t rock the boat, be good. Fuck that. Your voice is one of the very few things that is authentically yours. You never have an obligation to silence the hurricane in your chest. In years to come, people will admire your courage and your bravery. You will use your voice to help others. It will be an enormous benefit to those who cannot speak.

my deepest apologies for my sincere neglect of you. I know now that it was a mistake, but these are  a few of the many life lessons I have learned. I cannot ever write about them all, because they are still happening,  but I am committed to acknowledging and taking better care of you.  We’ve still got so many awesome adventures to have in whatever form our life takes from here on in… I love and embrace you

From

Slightly older you

Seven Day Photo Portrait Project

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aim of the task: to take a photo of ourselves every day for one week and detect any changes or any changes in thought, feeling, mood or any other concept. 

My method:  The Artist in their “natural” environment. I took photos with my phone in poses that depict the “doing” parts of me (hands and face predominantly) engaged in various activities such as studying, drinking coffee, going home on a bus, cooking, being with my dogs, etc.   I tried to get them as close to the real “action” as possible but because they are portraits obviously the pictures are contrived.  Above are the photos – sorry about the sleeping one, it’s as good as I could get it, considering my eyes were closed.   One of the weird things I noticed is that throughout the course of the week my hair got longer. quite strange.

 

 

the things that happened to us – a thankyou letter to my community.

trigger warning for sexual assault but a generally happy post. 

for the last year and a bit i’ve been working with someone who remains ones of the most uplifting people in my life, kate ravenscroft  on what we’ve affectionately termed “our baby”.  our baby is we will not go quietly a creative resource for sexual assault survivors and it is ridiculously close to being born.  we hit our 3000 minimum target on pozible a little over 2 weeks ago which guarantees us 500 copies to print. This makes me absolutely thrilled, and inspired by the generous outpourings of people, some of whom i’ve never met. some who approached me with tears in their eyes when i handed out a fundraising leaflet, without saying a word, but with a silent acknowledgment that this had happened to them and their story had not been told.  

I guess that leads me to what i want this blog post to be about.  My favourite poet, Tara Hardy has written a poem in which she implores a friend of hers to “take the thing that happened to you” and call it hers.  When we began this project, Kate and I realized that the voices of survivors did not belong to us, they belonged to others, they belonged to people who, even though well meaning, were taking the words of experiences, the words that had been inscribed on our souls, and making them theirs.  I have blogged about this project before, but never with such conviction, never with such belief in its vitality. We live in a culture in which rape and sexual assault happen every day. every 2 minutes someone in the world is subject to sexual violence and yet everywhere we turn, the stories that are being told are not the stories of survival. they are the stories of the people who caused that grief in the first place or through whatever means and perpetuate it.  

Way back when we began to receive submissions i had a realization that this zine is a product of rape culture in a skewed way.  in a way, we’ve silenced the voices of survivors so much that they believe a zine is the only way they can make their stories heard.  So this project, in whatever form it takes from here on in. (people have already asked me about a second printed edition… don’t.. it fucks with my head, but thankyou for your enthusiasm)  let it be a testament, to courage, to bravery  and to the constant will it takes to not only live through violence, but live in a culture where your story is invalidated.. let this project be the means by which you, in all your shaky voiced, trembling handedness, speak. And once you start, never ever stop.  Let this project be the spark, the flint that lights the fire that gets us all talking about what survival means, and what violence means.  And most of all. how we can work to a world without it. 

To our donors…. a sincere from the bottom of my heart finger snapping fist pumping THANKYOU.  Please continue to share the link in whatever way you can as the campaign is not over for another week and a bit. you have paved the way for so many people and made it possible (pozible?) to speak. This means so much more to me, and i speak for Kate also than words on a blog, or a crowdfunding website, but it is absolutely and utterly not taken for granted that you gifted us with making this a reality. 

stay tuned for the launch date and please keep an eye on our blog for the online edition launched over the 16 days of activism against gendered violence (november 25 -december 10th)    

 

finally: i leave you with the inimitable tara hardy. this project is definitely helping us take the things that happened to us and calling them MINE. blessings.