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.