Chips

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. 

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.

Empty

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.

Anniversary

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

Façades

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.

Start

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. 

Firsts

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.