My friend and fellow Dysautonomia blogger across the ditch ran a great series for Awareness Month this year. She asked other Dysautonomiacs to submit pieces that explore Dysautonomia through the arts. She collected a range of paintings, sketches, songs and poetry.
This is a little poem I submitted. It’s a bit darker than my usual writing, but I’m okay (I say that just in case you are the sort to worry about people writing dark poetry). It was great to express some of these feelings in the context of a poem and for a specific project. I have always loved the distillation of words that poetry writing requires, even if my own poetry skills are fledgling!
This poem is about my complicated relationship with sleep and hope and despair. It is about what it feels like to know that the thing you struggle with every day may never in fact get better. It’s a feeling of falling. I post it, all the while hoping that whatever your day is holding for you, you get to fly more than you fall today.
Life is so busy. I know. It’s nicer, warmer and safer to cocoon ourselves into the business of each day and shelve the big issues. Maybe you’ve been hurt, or you are over it all. Maybe there is nothing left after you’ve dealt with your day. But if you could pause and think about it, what are the things beyond your daily life that you care about? Deeply? What are the things that worry at the back of your mind, the things you wish you were taking some action about?
I care about kids abandoned to poverty, poor choices and the cycle of violence. Kids who don’t even get breakfast before they start the school day. I have seen the fallout from that first hand when I was teaching in low decile schools, it worries me for the future of our country.
I care about the 27 million human souls trafficked as slaves, their voices screaming into the void, unheard. I can’t even comprehend the enormity of what a number like that means in human terms. Twenty seven million individuals, as important as you and me.
I care about educating girls about how powerful and significant they are for our future. In some countries girls have no voice and no choice, but even here in our pocket of peace, where we have no wars, no corruption, no excuse; we are not doing nearly enough to empower young women who do have choice. Why do we continue to diminish and reduce them to a two dimensional image of value, until poor self esteem boxes them into small lives?
Why can’t we all be kinder? I care about the numbers of people ending their suffering through suicide. The immeasurable sadness left in their wake. I want to gather all the sad, suffering people up into an enormous embrace. Why can’t we look out for each other better? What stops us from helping people who are in pain? Why don’t we ask… are you okay?
And I care about all the people suffering from poor health. It’s everywhere you look, hideous epidemics like cancer. Such an insidious enemy, robbing people of their loved ones. I care about finding a cure. If we had a cure, I’d still have my beautiful mum.
And I care about the millions of people like me, suffering from ailments that are poorly understood by Medical Science. Chronic illnesses are long term, vitality sapping problems without adequate research funding to create studies that will improve our quality of life. For every patient who languishes in a health system that cannot help, bowled over by their diagnosis, there is a family, suffering alongside. There are kids, husbands, siblings, grandparents and dear friends, required to take on more than they can. There are sacrifices and prices to be paid that will be felt long after the patient has gone.
I feel passionately about these things. What are your deep concerns in our world?
Pia, one of the fellow students of my blogging course, is running something called a link-up. She sent out the call for us to write about something we care about, providing links for taking action. The power of social media is bigger than just making connections. So I resolved to write this post about that something I really care about, with some useful information and ways you can help, if you want to.
But I care about a lot of things. And my magic wand is broken.
So, here are the ways that I am doing what I can about the stuff I care about. Until that wand is fixed, doing something is better than doing nothing. If you want to join me, here is some information and links.
To donate to or provide sponsorship to the wonderful programme that is helping impoverished kiwi kids to get breakfast and basic clothing, have a look at KidsCan.
To learn more about the horrific realities of contemporary slavery, watch this TED talk, please watch all the way until you see the images of what a reunion after liberation from slavery really looks like, look at those beautiful mother faces, I dare you.
To find organisations working to help those caught in the human trafficking trade, see this directory.
For a website aimed at empowering young women in first world countries, check out this phenomenal resource: AMightyGirl
To help raise money for Ovarian Cancer Research, you could host a “morning teal”, you can go here to find out more. Or to join the community of people in New Zealand with Familial cancers related to the BRCA mutations, go here.
To donate to the only Australasian research that is currently happening in the field of Dysautonomia, go to my friend Michelle’s fundraising page. Help me to do my bit for Dysautonomia awareness and research. We are a small number of patients, but each one of us is a precious human being who is desperate for more answers. Maybe your bit will help?
And I care about YOU with all my heart. You have a battle on your hands, no matter who you are, no matter what your life’s story is. You are human. It is a pretty raw state, it hurts sometimes. Sometimes you feel so numb. Even if you can’t see the hands reaching for you, they are there. Take action. You can grab hold of a hand, or even just let one grab yours instead of pulling away. Connection is what keeps us all together. If you have been feeling like leaving, please don’t. Grab hold of a hand, or ring for help, set the wheels in motion. Look here, or call these good people, or talk to the people you love.
And if you are reading my blog because you too suffer from a chronic illness, here are some things you can do to practise some self-care I have them on good authority, my Health Psychologist gave me a chapter to read for homework last week. It’s called “A Caring Hand” from this book; The Reality Slap by Russ Harris. My Psych is a good ‘un, so I am passing on these nuggets to you. I wish it were my own, real caring hand that could rest on your shoulder today… do know that my heart is with your heart.