I live in the last chapter

I live in the last chapter, in the aching hollow in my chest where a beating heart used to reside. I live in the winter, in tears of loss, in the heavy notes of a haunting lullaby, in muted greys and the most desolate days. Where I live is not next door to hope or joy. To travel there is not a simple step but an exhausting journey in a rickety boat. And when I return, as I always do, to the cold winter to curl up under the fragile pages of the last chapter, the rain of tears is like a tidal wave, the greys become inky black, the cold is freezing and the aching space in which I sleep is heavy with angst.

Where I live is populated by survivors and fighters. We live on a battle field. We live in the mud, freezing and soaked by rain. We live in pain, we live with illness, we live devoid of tomorrow, because time is transient and the only colour is in memories and slumber. We live in today, in the moment, in the weakness, in the fragility. We see each other. There is no need for words. We tell stupid in jokes. We watch life happen around us and marvel that no one notices the moments. We fight without armour, without weapons. We fight every day and the only allies we have are each other. And when we lose one of our army, we roar and scream uselessly at the world who cannot hear us.

For we live on an island. I know you wondered why you couldn't see us. Why we are invisible. Where we live you might journey to in your life, but either you will return triumphant to the mainland where sunlight is taken for granted and hope imbues your dreams, or you will drown in the murky waters that surround us.

Our island is not a destination for tourists, but not everyone who lives on the mainland is foreign. Some have dual citizenship and visit us to bring the sunlight we need to keep breathing and to find our way. For those of you who visit the last chapter in the winter and chase away the dark with tales of summer and laughter, I thank you for your lightness. I thank you for the bright. I cannot visit you where you are, the trip is too arduous and the contrast when I return steals my breath so completely I am tempted to just stop breathing. But that you visit me at all, with packages of sunlight and love shining in rebellion against the light eating forces of the island.... that you do that, makes me want to breathe more deeply than ever before. To bathe in the light and for a moment, just a moment, pretend I live on the mainland with you in the first chapter of a new story.

To my fellow residents who lie on the battle field beside me, in the last chapter, freezing and unarmed for the battle.... I wish you a journey to the mainland.  Maybe one day you will reside there instead.

To visitors from the mainland, who tote packages of sunshine and love, thank you for bringing me pieces of light.

Between you, the support for Aid 4 Amara keeps inspiring me to breathe more deeply. Your love and light makes me want to keep fighting.  Even though I am without weapons and armour.

Meet Marzi - guest blog post by kp

The following is a post by guest blogger kp.   She of infinite kindness and outrageous generosity has become one of my best friends and a invaluable support throughout the last few years.  In moments when I think I might drown, she is the first to offer a hand up.  You can read kp's smart insightful blog about her life with ME/CFS at Life in the shadows and her crafty and delicious mirror blog about creativity and the beauty of life at Turn your face to the sun

Meet Marzi by kp

Amara Campbell is a vintage-loving bowerbird.  She has a bit of thing for owls.  And trees.  And definite views on fashion. Intelligent, generous and hilarious, she is a born writer.   She's a bright shining bombshell of a woman.  She has a smile that wins you over instantly.  When you look at old photographs of her surrounded by friends you instantly see that she's one of those people who lights up a room.  

She is also very very sick.  She has had ME for more than a decade.  And this illness is doing all it can to dim that inner light of hers.  

I met Marzi a few years ago, not long after I joined facebook.  She was the first person with ME I found on there who I really clicked with.  We were born a couple of months apart, shared a lot of the same interests and got along like old friends right from the word go.  Quite quickly we got chatting about the possibility of starting up a local online support group and in the middle of a conversation about this she disappeared for a minute and came back to let me know she had just set one up!  I was more than a little gobsmacked at her 'just do it' attitude.  And I think that was my first real indication of the person she is. 

That local group has continued to go from strength to strength, and remains one of the most supportive and friendly environments I have come across on facebook.  I attribute that in no small measure to Marzi and the way that she leads.  She has such passion for changing things for people with ME/CFS.   In the midst of everything that she is currently dealing with she recently set up an awareness and advocacy group called 'Change for ME' (in partnership with Lee Lee).   Recently she told me that the reason she pushes her health beyond its limits on this front is because she feels she doesn't have a long time to do it if things continue the way they are. 

In the time that I have known her Marzi's health has gone markedly downhill.  I vividly remember one day getting a message from her asking if she could call me.   She was struggling to cope with one of the first episodes of dystonia (actually ending up at the hospital not long afterward).  It was hard to even understand her as she tried to explain through the tears what was happening.  Her fear and suffering were unmistakable, her distress palpable. 

Since then the dystonia has become more severe, unrelenting and increasingly resistant to treatment.  Before the neurological damage is irreversible she desperately needs to see the specialists who may hold the answers to the mystery in her body that is holding her hostage. 

The warrior woman who is always fighting for others now needs people to form a web of support around her.   
  

The video below was created recently to try and give people a little glimpse into the suffering that Marzi deals with daily.   Of course much of this is felt and not seen, however the dystonia - a movement disorder causing muscles to contract and spasm involuntarily - is blindingly obvious (and incredibly confronting).  

It is heartbreaking to watch a friend suffering like this and I will do everything I can to change things for her.  I believe that anyone who has knowledge of what she is dealing with will also want to do everything in their power to help.

You can find the Aid 4 Amara page with more information - look in the 'about' section at the top of the page - on facebook.  Or if you'd rather avoid that strange land some information can also be found on the Giveforward site (where a page has been set up to allow international donations).

Change for ME Australia

What I want to know is this. If you were suffering. If you were either in and out of hospital or simply so weak that you couldn't function, would you like to think that people would help you? You would wouldn't you?  

What if you didn't have the option of financial support from family. And if your illness for some bizarre reason, even though life threatening and more disabling than many known illnesses, didn't qualify you for government support. If you then were left in a severely disabled state, with no family support, no financial support, and no charity dedicated to helping you. And you couldn't access the medical care you needed and you were young. Young enough that the fifty years stretched in front of you looked like too hard a journey, when frankly the next fifty minutes was too hard.  What would you do?

We all like to think we are good people. We like to think we help. But do we really? How often do you see your sick or elderly family or friends? Is twice a year or even three times, enough?  What have you done to help them lately? Have you asked them if they are okay? Have you asked them what they need? Have you considered that everyone is thinking the same thing, that someone else is helping them?  That it is not really my job, not my responsibility. But if everyone is thinking that, who is left?

I am living with an illness that as many as 200,000 Australians have. And of that 200,000, there are up to 40,000 of us who are house or even bed bound. It makes me so furious I can barely breathe at the injustice of it. We are suffering. We are alone in our fight. And NOBODY is helping us. I couldn't stand by and watch this when I was healthy. And I sure as hell can stand by and watch it now as more and more of my community fall through the cracks, become suicidal and completely disempowered by government and the community's collective deafness to our plight.

We will not let that happen. And I want you to help us do the right thing. I want you to stand up for people who can barely stand up for themselves. This will be looked upon in coming decades as a shameful period in our health history. That people suffered as I do, as we do and nobody is doing anything. Yes there are great doctors doing research and yes there are brave doctors treating us. But they need support, they need help. It is too much, the weight of so many of us on the shoulders of so few. It is shameful. If I had a recognised illness, government would subsidise my treatment and a charity would provide me support.  I would have help with cleaning and cooking, with running errands, with doctors appointments.  There would be choices and options everywhere I looked.

Instead I have ME/CFS and my symptoms have become so acute that in moments I cannot remember who I am. My language has become so muddled that the name of simple things like chairs or tables elude me and in moments the best I can manage is nonsensical noises.  My pain can be so consuming that for days I am stuck in a dark room unable to move. And my weakness so great that my heart strains when I move.

Still when lucid, I cannot stop thinking about my community. My brave, beautiful, strong, courageous community. And I with another ME/CFS warrior started a page to make a positive change for people with ME/CFS. So that future generations do not suffer as we have. We are called Change for ME Australia.

Please watch this video:

And then follow us on Facebook  Change for ME Australia and Twitter Change4MEAu

One day soon.  We will see the positive change that you helped create.  Please join us today and be the change we need to make a more positive future for people with ME/CFS in Australia.

Voices from the Shadows

All around the world, even now as we speak children are taken from mothers and the gravely ill are sectioned in psychiatric wards. ME/CFS has a torrid history and the medical profession is left useless in its wake, relying then on the tried and true strategy of blaming this enigmatic illness on the patient.

We who suffer with this illness, become cynical and hardened by the constant fight. By the need every day to gather the willpower to choose to keep fighting this unwinnable battle, while on the sidelines the medical profession yells taunts and derision at us. Their inability to puzzle out our illness, makes them condescending and dismissive. They are stymied by  ME/CFS and rather than treating it as a common enemy, they turn on us.

Right now in Spain a very sick child has been taken from her very ill mother. Even though leading Spanish ME specialists have declared that the child has acute ME and should not attend school on days she is too weak. Even though a judge declared that challenges made by the government to remove guardianship from the mother (also sick with ME) was not in the child's best interests. Even then, the Spanish government has taken this child and put her in a psychiatric ward and refused the innocent mother access to her sick child.

In England a man visiting from Canada who was also very ill with ME has been sectioned in a UK hospital. And this is not just a foreign problem. It happens to Australians too. It has happened to two people I know. Likely more, because it is a shameful thing that people do not want to share.


There is an estimated two hundred thousand people in Australia with  ME/CFS.  Of those a likely forty thousand are house or bed bound, silently screaming for help

The film Voices from the Shadows is a documentary film created by family members of a severely ill ME patient. It speaks for those of us who are unheard. It is important viewing for everybody, but crucial viewing for anybody who loves someone with ME/CFS.

Voices from the Shadows Trailer from Josh on Vimeo.

A reviewer from the Chicago Sun Times has written a review almost as moving as the trailer. Scott Jordan Harris ironically is also a soldier in our war. He too has ME. It is worth a read A howl of desperation for those who cannot howl

My record player is emo

We live in a world where we are constantly prompted with subconscious social markers and clues in order to help us behave appropriately and to know what to expect. When you watch a TV show, whether you are aware or not, you will know by the way the camera moves, what type of scene is about to take place. If the camera is watching someone through the branches of a tree you will know that character is being spied on, but if the camera moves slowly from behind the tree and just watches the character from a distance, you will know the character is having a pensive moment and the imagery suggests they are given space.

When you watch a movie, the music or sound will communicate what type of emotion they are prompting from you. The melancholy music or dramatic sound effects getting you ready for the emotion of the upcoming scene. Those of us with severe CFS/ME have a sound-track of atmospheric melancholy music that changes in moments to vintage comedy capers music to coincide with our daily slapstick routine or shifts to threatening thrumming bass as we near death, only slowing down to turn back to melancholy.

There is not often hopeful music, or even a camera panning to the sky to say goodbye, instead the camera discreetly backs out of the room, us in centre screen skin looking translucent white, eyes blackened, lying heavily in bed surrounded by medication having completely given up the pretence of a pretty room for the practical needs of survival. And maybe there is a script in the end credits describing our continuing fight and running statistics on the truth about death and severity of CFS/ME.

The psychology of CFS/ME is not like other illnesses. We do not get given a package of information about statistics and treatment options, the likelihood of survival and how to better our chance to achieve that nor do we get to look forward to the sweet relief of death and the acceptance of having to say goodbye. We do not wish for death, but we wish for closure, for escape from the torture of uncertainty. Our ultimate wish would be to hear hopeful music, see a montage of us over the years in various states of decline and then some miraculous treatment turns us around and you get to see us building up our strength and working to get our lives back.

Unfortunately for most, that is not what our experience is. And what I've realised is I've grown tired of waiting to hear the triumphant music. That I hate my emo record player and it's evil addiction to dark whining notes. What I wish to do is change it, but the ceaselessly moving floor and my inability to walk properly makes it impossible for now.

So I live my life in intervals, small snatches of clarity, tiny moments of balance very rarely free from pain and never free from exhaustion. People around us struggle with the complexity of the psychology of CFS/ME. We struggle to balance on an undulating floor that moves to no discernible rhythm, unwillingly swaying to the atmospheric melancholy siren and wishing to hear a joyous symphony.