Wednesday, 29 October 2014


I like to watch the leaves falling off the trees, floating for what must seem an eternity for them.
When I was a child, perhaps 8 or 9 I had mumps, that was the only reason why I was allowed to stay home from school, I got out of bed and went outside, there was a beautiful raven calling, his plumes were blue-black, the most beautiful colour I had ever seen, until something else caught my eye. 
A huge butterfly was just resting on the ground, it was dark purple with black edges and a few electric-blue dots, I have never seen anything like it ever again, I got told I was probably hallucinating because I had a high fever, I don't know, can't remember, but I know it gave me so much joy to see such beauty.

A long time has passed since that day, and along the way I have lost some people I loved with all my heart, but every time I've lost someone, there has been a butterfly crossing my path.

Now it's my time to go, I'm told to put my affairs in order. I just wish it was faster. Every day a tiny piece of me gets lost, or perhaps goes back to where I belong - I don't know.

There's the siren's song calling from my bed side table, 'do it now' it says, 'it'll only be a minute'. The temptation is strong and I must resist because I'm not done, because my affairs aren't in order yet, because there are things out of my control. So I must remain with this life chipping away at my soul. 

But I yearn to become the butterfly with the dark purple wings and float in the air like the falling leaves of a tree, together with S for the rest of eternity. 

Thursday, 18 September 2014

Simon, amado mío, heart of my heart,

I saw a turtle swimming, SouthWest Rocks was visible on the distance, I thought about you all the time, remember we promised you'd teach me how to fish.  We also spoke about riding the bikes along the wall, we said we'd paint some art on the concrete boulders to make it less boring.
I miss you so much, it actually hurts. My heart is broke in pieces and my head's a mess.
When I die nobody will remember me, and I'll be gone.
But before I die, I will make sure your son will keep your memory.
I take comfort knowing that my time is also coming to an end, and soon I will be with you again.

Monday, 15 September 2014


I have cried so much today my eyes are red, raw, puffy and sore, I have a headache, and the empty space in my chest feels bigger.
I am lost.
Everyone feels at liberty of telling me what I should do of late, my friends telling me not to do ...., your sister telling me to do xxxxxx, I wish you could tell me what you'd do in my place my love.
I wish you could hug me and tell me it will all be OK.
Only some are not telling me what to do but only because they've discarded me, except for M, who told me what to do before telling me they can't be my friend, I know those who have left me can't deal with the fact that I may not have long to live but it truly hurts they just have given up on me, nobody knows how fast the MND is gonna take me, it may be the cancer in the kidney, who the fuck knows, what if I survive both? Being forsaken when you really need friends is so very sad. But nothing will ever compare to the pain of having to live in a world without your smile.
No matter what I decide to do, I will piss someone off, everything is so confusing and so hard, it is so unfair!
Doing what's best for me is not an option, I can't do what I truly want because I must first ensure I do what's best for your son, so I must wait and fight for the rights of a kid who will never know me.

Until the kid's future is secured I must remain, but I just want to be with you.
Somehow I must endure.

Saturday, 13 September 2014


The first anniversary has come to pass, that intense week at the end of August when Simon died, the weeks after until 12September the funeral and then I am expected to be ready to "move on" and "let it go", well, I can't, I don't want to, I don't even know how to do that.
Every night my heart aches for his love, my body longs for his hands, for his lips, for his kisses. I miss his voice and his laughter, hi shyness, I miss my best friend talking to me. We were never people of words but we always showed our love with deeds, I would cook a nice meal, he would clean, 
I miss you so much Simon my darling, I'm aching for your love.
Please come to me in my dreams and let me show you the love I've kept for you. Please come

Monday, 21 July 2014


During my last hospital stay I met Jay, as soon as I saw him there was a sense of instant recognition, as if I knew him, I let the feeling pass, dismissing it as just a coincidence in the way Jay looked much like S, similar physique, same height, smoker, surfer type.

One afternoon whilst doing art therapy it dawned on me: Jay & S were friends, they were surfing buddies, they met at the beach and formed a bond over surf boards, waves, dolphins, and the wrong belief that the other had "all his shit together", each wanted to be like the other, in the false perception that the other's life was how theirs ought to be. Jay was the only friend S made after meeting me.
Jay and I were his only friends. I felt angry at knowing I had to share S with Jay, I was envious of their friendship right then and there, a totally irrational feeling. 
I nearly fainted when I realised who Jay was, he was so fragile I couldn't tell him about S, not yet. The pain he was going through and the issues he was sorting out didn't have room for me to tell him: his friend, my darling, had killed himself eleven months ago.

Seeing a grown man cry in pain and despair, is heart breaking, with the uncanny similarity between S&J I was immediately thrown back to those times when I tried holding S tight and telling him things would be OK (even if only for a short time). I decided to hide in my room to avoid the pain of seeing him, I needed to give my heart a break and my brain some respite, I desperately wanted to hug Jay, to comfort him and cover him with kisses because my brain thought it would be like hugging S, it would atone some of the guilt I feel because I didn't die, naturally that was insane and I didn't. 

Jay has a family, I was not about to jeopardise his life and chance at future happiness for a fleeting moment of utter selfishness by doing something so unconscionable and probably unwelcome. 
I discussed my distress with Dr P and he agreed I was doing good by puting strong boundaries and keeping to myself.
Two days before is was discharged Jay realised that my S was his friend, he told me how they met and how he was having terrible troubles with paralysing anxiety and depression at the time and was drinking to excess to numb the pain but was ashamed to talk to S about it as "he seemed so together and healthy", I had to tell Jay that S was going through the same, doing exactly the same and was ashamed to talk to him about his own anxiety and mental health issues for the same stupid reason. 

Once again, I had to tell someone who cared about S how he died, I had to relive the moment I was told S had been found after a week missing, alone, exposed to the elements, I had to relive the fact that I was not allowed to see his body to say good bye, and then, I had to tell the nurses to keep an eye on Jay because he was terribly distressed to think that, if only either of them had dropped the fucking 'manly man' façade maybe, only maybe, they could have helped each other, and according to Jay, maybe S would still be alive. I had to hold my womb, for I was having contractions-like pain when I told him S had made his choice and we must honour and respect him. I could hear myself howling in my head and felt my heart breaking afresh. This is all too sad.

I know Jay and I will never cross paths again, he has my number, but he is too much like S, he will not reach out, and that breaks my heart because I don't want his family going through their own version of my little hell. 
The fucking unrealistic expectations we place upon ourselves took the love of my life, the bullshit 'indicators of success' agreed upon by society are killing young men and women like never before, but the saddest part is that there's so much shame attached to mental illness nobody wants to talk about it.

I have been admitted to a psych ward 25 times, have tried to suicide 8. I'm hanging by the skin of my teeth, don't know for how long or if I will ever get out of this dark and horrible place.

Saturday, 19 July 2014


I went back to work today. 
At a new location but for the same charity organisation. I cannot say I liked my new colleagues all that much, all of them are much older and were very patronising towards me and condescending towards our customers, I trully hope it was "just a bad day" and not a true representation of what work is going to be like in the future...
1st question: what's wrong with you? Do you hava a sore leg? (Pointing to my walking stick)
Answer: no sore leg, I - (got interrupted)
Question 2: so you had a stroke and that's why your speech is slurred?
Answer: no, I've haven't had a stroke
Statement 1: it must have been a terrible accident, you poor thing, and so young
Answer: I will go check on the stock out the back

None of those assumptions were correct, I do not like to be "empoverished", I fucking hate to be pitied, if that interaction had been with a six year-old child I could have tried to teach them some manners and would have answered their questions candidly, but for an older than 60, it is shameful. 
I also got asked for a "Fit to Work Certificate" which I think it's not at all right. They've assumed that because I'm young I have to "work for the dole" with them, they couldn't be more wrong! I'm doing it because I believe it is my civil duty and I want to help, however, I will go elsewhere if they keep making me feel unwelcome. 

Tuesday, 24 June 2014


Today is my birthday, the first one after S' death in late August last year.
Two weeks ago it was the day S was born, first time truly sunk in the fact I will never see his beautiful face again.
Yes, I've had a first Christmas without him but I was in hospital & in denial too.
Today is my birthday and I am in hospital, not in denial anymore, I am here because during the last round of tests in Sydney a couple of weeks ago, a little "complex cyst" in my R kidney was found, there's a big chance it is malignant. There's a benign tumour in my L kidney - just to balance things out I guess.
Brain & Spine MRI results ruled out any growths, tumours or mechanical problems, and MS has pretty much been discounted, albeit some changes in the white matter, which may or may not, be attributed to age. One would be forgiven for thinking that it's all good news, right? - well, "Not really" said Professor H (my neurologist), now we are staring at the scary stuff right in the face, more tests were done, no results yet, just a lingering sentence in the air: MND is a diagnosis of exclusion...

The grief of losing Simon plus the new discoveries are taking their toll on me, I can't eat, I have terrible nausea, zero appetite and swallowing has become a task in and of itself. My balance is crap, I've had a couple of falls, the tremor is intense and my brain is forgetting words, I either can't say what I want to say or I jumble up words or I can't understand when people talk to me.

You may think I'm crazy (after all, I am in a psychiatric facility), but Cancer doesn't scare me at all, if I have renal cancer it will be OK, it has a survival rate 80-90%. So no biggie. It most likely will be uncomfortable but meh.
Death doesn't scare me, in fact, I've been wishing to die for the longest time, the only thing that's keeping me here at the moment is securing as much money as I can to set up a trust fund for S' son.
What truly scares me is losing control of my body, being sound of mind but unable to move, I could not bear a life where I cannot feed or dress myself, being trapped in my own body and dying of respiratory failure, not because my lungs are diseased but because the muscles of my rib cage will stop working.
I cannot find a more cruel way to die.

If I'm positive for MND my decision is to die in my own terms & much before I cannot do it unassisted, I don't want anyone to be in trouble because of my determination. My life is my own and I shall decide when and how it ends. I am not one of those most excellent people who fight and continue despite the worse, I am not going to run a marathon, nor start a foundation, I am not going to write a book and be the inspirational-porn poster girl. I am just plain going to die in a dignified way and whomever disagrees with me can go eat shit.

My life, my way, right until the end.

Tuesday, 20 May 2014

Comings & Goings

It has been such a long interlude between posts. Things have changed and in a way kind of stayed the same. 

I spent two weeks in hospital at the end of Feb, the idea was for me to change meds, my antidepressant was swapped for a different drug, washing out the previous one was horrible, withdrawals are so bad, I was feeling sick beyond the pale, and on top of that, my lovely nervous system decided to start shitting itself, I started having trouble walking, my left leg refuses to move sometimes so, I now have a walking stick. 
I also started Grief Counselling Therapy to help me deal with the enormity of my loss, it is strange to be a widow at my age. I miss my love so very much, I wish I could just wake up and it would be 2 weeks before I left to go to Syd, I wish I'd had made the decision not to go & I would have been there when my darling got his dreams shattered by a fucking bureaucrat. But that is never going to happen and my heart breaks afresh all over again. 
I've been back and forth since March, and about to go again to get more tests, see more doctors, find less alternatives, get more frustrated at myself, why can my condition not be just easy to diagnose? 
The pain is getting steadily worse, the neurologist thinks I am so very interesting, the ophthalmologist says I'm fascinating, the rheumatologist is confused, and the latest discovery is that I have a renal tumour. 

I'm tired, I want to give up, I need to rest. I miss Simon every living minute, I wish I could die and be with him. 

Last week I went to see the place where he died, the Constable who attended the scene drove me there, it was so surreal, I had already been to the exact spot, without knowing, I had found Simon, I found his tree but I didn't know it at the time. It made me feel connected to the place, it's hard to explain the connection we had but I could feel him, that's why I knew he was gone, I could not feel his presence anymore. I offered the tree salt and water, and I thanked the tree for keeping Sim's spirit, He chose a magnificently beautiful spot. The swamp is where his spirit lives and the tree is the guardian of his soul. I felt envy because now nature keeps him. I'm at peace but I'm heartbroken. 

Tuesday, 18 March 2014


I've moved homes, yes again! I was hardly for 1month in the last house but I hated it and it made me feel worse than ever about my situation. 
The place was a shit-hole, in such a state of disrepair and neglect it's amazing the real estate can get away with leasing it at such a high price (for the area), it's unbelievable it can be leased at all. 
Everything was broken down and when I asked for urgent repairs I got told by the agent "I know it's not working/broken/falling down (etc) but the owner chooses not to fix it'. When I asked why would the owner let his investment get so poorly managed they answered "it's a old house y'know" I was seriously perplexed by their non chalant disregard for their job. 
Anyhow, on 16/2 there was a downpour of rain so heavy the blocked gutters overflowed (naturally) and the water found a way through the roof into the kitchen and some of my possessions got drenched, amongst them a few electrical appliances (which don't work any more after getting wet). I went to report the damage to their office the next morning and they said they knew there have been substantial damage because another neighbour had come earlier to complain, good old Trev was summarily dismissed just the way I was by being told they were sending "someone to have a look". Nobody ever came. 
I went to see the GP and Dr R saw straight through me, he didn't let me go home, I got taken to Macksville hospital and from there transferred by ambulance to the Base Hospital at CH where I got scheduled under the MH Act (2007) for being assessed as a danger to myself and/or my reputation (all the fucks). I was stripped of all possessions including my mobile phone and 2 security guards were sitting out the door of the room I was allocated to wait in until a bed was available for me. At about 2am was finally taken to the psychiatric ward where I got informed of my involuntary admission, I told them I had gone there voluntarily and had no plans of absconding but they said the Emergency Dr decided I had to be kept against my will, that didn't help make me feel any better obviously. 
That particular unit is quite large, it holds 38 patients and the majority are psychotic, it's a very noisy ward and not particularly suited for a depressed person. I wasn't allowed out, had no "permission" to use my mobile phone, could make 2 calls a day from their phone but they monitor the conversation and eventhough it is a hospital they had trouble sourcing some of my meds so I missed a large number of doses of my pain relief, to say that was a traumatic admission is to put it very lightly. 
After a couple of talks and some negotiating I managed to get my status changed from involuntary to voluntary, that tiny suffix carries huge implications regarding your treatment i.e. you may be forced to take certain treatment because the dr has decided it's in your best interest and you are not consulted about it, they can keep you for weeks before you are taken to a hearing and then a Magistrate decides if you should stay longer, be forced into more treatment, etc, so it was imperative for me to be in control of the situation, once you're voluntary you may request to be discharged, which I did after a week of being in that hell hole. 
Because of my chronic pain I take a lot of pills bot in quantities and kinds but I only take 2 S8s (opiates) one regularly and one as needed for break through pain, the bulk of what I take is made of paracetamol, gabapentin (an amino acid), and 2 antidepressants but a nurse told me one night when the pain was particularly severe, she thought "it is disgusting the amount of drugs you take, you're just a drug addict and I'm not about to give you any more, it's disgusting, no wonder you're in here, you've done the damage to your brain with all those drugs..." I told her it wasn't her job to judge me and shuffled away to my room, that made me decide to ask to be discharged the next day, I didn't even have clothes other than what I was wearing, the social worker found me some clothes in the left property box so I could at least wash my own, I bought a pair of undies from the "Pink Ladies" a volunteer group in the hospital. I managed to get in contact with D my support case manager and he had the undignified task of going to my house and packing a bag w the necessities for my stay, I was mortified he had to go throug my underwear drawers and get a few changes of clothing for me. There are only 1hr visit after lunch and 2hr after dinner so the place is so restrictive its environment is not conducive to healing, I  told the dr that place was making me worse. I felt like a prisoner,for the first time I felt like I was being punished for being depressed as if it was a capital
offence, what bullshit!
We were waiting for a bed to be available at the private clinic and the dr and I were mislead into thinking I would be transferred but then the dr was told my treating psychiatrist in there didn't want to accept my case, and I was told they were full and my name had never been on the waiting list. So I went home. 
On the next Tuesday I went to the pain clinic as I was doing regularly but after signing in I got called aside by the manger who told me my pain Dr said I could not do the program anymore until my mood disorder was treated so could I please leave. 
I felt so sad, disappointed and let down I just said ok, I'll get my bag and go, I was extremely upset. I didn't understand, I couldn't get a bed in the psychiatric unit because whatever and now I was denied access to physical rehab for the pain, to say I was confused it's an understatement. 
I marched in straight into my psychiatrist's rooms and spoke to G the receptionist who was absolutely lovely, I explained the situation and right away she said dr P wasn't in that day but she would ring him, to my surprise he took the call and I was told he would contact dr Ch to at least get me back on the phys rehab program, then after some more talking the receptionist hung up and told me dr P wanted me to see the clinic's unit manager so I was escorted by G into the clinic to an icy reception, the acting unit manager refused to see me but she sent a nurse with an appalling manner to speak to me and do a triage, after speaking to sister A (who kept telling me they were full) I got asked to sit and wait in the dining room, I decided to leave after 45min of being ignored, I had other things to do that day. I went away, caught a bus and went to put a claim for refund of rental bond to the fair trading office, because the bond was in both S' and my names I had to produce his death certificate and naturally the lovely lady helping me was asking me how he died, but when she read the line which states the cause of death she got teary and I just lost it and became a sobbing heap of tears. They were helpful but revisiting the details of my grief was too much for me to bear. 
I decided that this would be the last time I asked for help, I've had had enough, then I got a call from the sour acting unit manager saying dr P wanted me admitted the next day by 11am, miraculously there was a bed available for me...
The day before I had a call from Housing offering me to have a look at a place in down town C.H. I went to get the keys and checked it out, at once I knew I had to get this place, great location, very well maintained and most importantly, affordable, so I said yes to the offer and thanks to the wonderful kindness of D, his colleague S, my friends M & H from Vinnies who packed all my stuff in one day, I moved not only houses but towns, all whilst being in hospital. 
The hardest thing for me was to surrender and let go, I needed to be in hospital and I needed to pack so I graciously and gratefully accepted my friends help and it all got done in 2 days for packing and 2 weeks for the moving of boxes by loads, the furniture was moved by Mick the same chap who helped me the last time, he is a fair, honest & good working man, and now I am writing this from my new house which makes me feel hopeful for the first time in a long, long time. 
I shall write about the actual admission on my next post but for now I'm just going to enjoy my new home. 

Saturday, 15 February 2014


I've moved house. 
It was done in a record time of 1 week. I managed to do most of the packing by myself but did get a bit of help from T, M & P. 

P was with me that final day when I handed the keys back. It was a sad ordeal for both of us. For me as the widow, for P as the grieving mother. I asked her to take me to the beach and there we stood sobbing for a while. 
I'm trying to adapt to the new place, different sounds, especially at night. I haven't finished unpacking yet, there is a part of me that thinks it's pointless, if I'm gonna die why unpack? 

Yes, I keep thinking about suicide all the time. Dr said I should go back to hospital but what for? Last time I was admitted I was given the impression I was an annoyance even if I was paying exorbitant amounts of money to be there (the insurance was really).
If I go to hospital I have to adjust to the new place again after discharge so why not just stay home and try to manage by myself?

Money is a huge stress, I have only just enough to pay rent and bills, for the first time in my adult life I have to choose between medication or food, health expenses or recreation. Everything revolves around me being unwell, now I have to check I have my meds with me before I go out, need to make sure I don't miss a dose, I need to rest all the time after I do even the simplest of things, I have no energy and feel exhausted to the point where breathing is an effort. I hate what I have become. 
I've applied to get extra help w my rent but so far it is not going anywhere. This sucks! After paying rent & bills I get $100 left to pay for food, transport, and medications for the next fortnight, any extras are not an option. I cannot afford any emergencies. I had always been so proud of being able to manage ok even with the little money I get but now the situation has got to a point where I prefer to sleep rather than having to confront reality, big problem: I am a severe insomniac. 
Getting a job would be great but I'm so fucking unwell I am not allowed to work, and in all fairness, I'm a very unreliable worker at the moment because of my illness. 

I'm doing all I can to get better but I'm getting nowhere closer to even knowing what's wrong, let alone fixing it. I don't even think I'm making any sense. 

Every day is more painful than the previous one, my heart is so heavy with grief. I miss my darling so much, I just want to be with him, I want to hold him and hear his voice and kiss his hands but that is never going to happen. 
And that breaks my heart all over again.