The Lost Language

I don't know what the word is for when you only speak one language. But that is me. Except I used to know another. I used to be tactile. To be affectionate. I would talk expressively and often touch the person with whom I was communicating.

My heart has always loved deeply and quickly and recklessly. Or perhaps not recklessly because I have an innate and unquestionable sense of people. My feel for others is so intuitive and natural it is like breathing. Just moments with someone and I can judge their essence and it's compatibility with mine.

For as long as I can remember I have been open, gregarious and extroverted. It is the strangest thing to take someone so open, so tactile, so loving - with networks of friends that overlap and stretch for miles - and shove them into a house and refuse them contact with the outside world. To isolate and alienate them until you almost break them.

I do have a keyboard I touch, but I do not touch you. I have lost my language of affection and I didn't even know I had it. Nor how fluent I was in it. It was probably my first language really. It was before I spoke that I touched. Now it is like a mysterious old ritual, long forgotten and unused. So it has become awkward and necessarily thought out to remember the customs of the language of affectionate interaction. Now I have seizures at the merest contact or even whiff of chemicals in my environment.

It is as though the perfect torture was crafted for someone like me. To give someone so tactile, so loving, so affectionate an affliction that disallows contact. 

That is why I fight. From here. Behind they keyboard. It's also why I give you glimpses of my suffering. Of my torture. So that you might fight with me. It's not enough that the sick have to fight their illness and fight for help. So I provoke you with my suffering. I hope to inspire in you a burning desire to fight for injustice. And to see the courage of my people. My community of warriors.

All the while I type on this keyboard, automatically clicking my fingers on keys, still able to touch type.... just unable to touch you. My heart is heavy with longing for the squishes and bear hugs I used to give out daily. The brushes on somebody's arm in reassurance, the squeeze of the hand, the kiss on the cheek or the light tight cuddle of a child's arms around you as you scoop them up.

Still I fight from here.  Separated from you by the walls. But every now and then there is no hiding it. The weight of the grief in my heart. Because without fail every time I see a group of people on my TV screen I cry. Sometimes it's silent tears streaming down my face, other times I sob. I miss the collective.

You are the collective. You can change everything. Help me fight. Stand up for my people. We can't do it without you.

To see what it looks like when I am exposed to the teeniest minimal contact with the outside world, follow this link:

http://youtu.be/gPbb8DZdY7M

To fight for us. To support our Thunderclap and make it roar, follow this link:

https://www.thunderclap.it/projects/10276-me-cfs-fibro-mcs-change-for-me

Thunderclap ME CFS Fibro MCS Change for Me

I haven't written in a while.  I have been so very ill.  And it makes for creative difficulties and loss of words makes for writing blocks. But I've managed to fall on my head twice in the last 24 hours and perhaps shaken just a few words loose - not necessarily in the appropriate order - but here we go.  

Yesterday after inexplicably getting up to stand on my day bed - a precarious feat of engineering made of stacked pillows and a layer of memory foam - on the fourth day of a gastro bug, when frankly getting out of bed has been a stretch, I then promptly fell straight from my feet to the floor some five feet or so below me, on my head and shoulder, with my ankle squished beneath me.  I managed to dislocate my shoulder, suffer a mild concussion and sprain my ankle.  Then again this morning when I lent over and mysteriously my centre of balance seems to be above shoulder level, so any time I lean further than that the magic of gravity takes over and plunges me forthwith into whatever obstacle lies before me.... in this case my walker, so same part of my head in the walker carry basket and same shoulder into the carpet.  Effing ouch doesn't even come close to it.

Despite seemingly insistent commitment to physical comedy, my body is just not up to such shenanigans.  And in spite of extreme exhaustion from all this funny business I am passionately committed to advocacy and awareness no matter what shape I'm in.

So please, as a reward for my surviving this week, help me by signing up to this Thunderclap (and no old folk it's not a storm as such).  If you have facebook, twitter or tumblr account (or multiple accounts) you can  use all of them to help Change for Me, my charity with co-founder Lee Lee to raise awareness and money to provide practical assistance to those with ME, CFS, Fibro and MCS.

Change for Me is a charitable organisation dedicated to providing information, support and advocacy for Australians affected by neuro-immune illnesses such as Myalgic Encephalomyelitis (ME), Chronic Fatigue Syndrome (CFS), Tick Borne Diseases, Multiple Chemical Sensitivity, Dysautonomia and Fibromyalgia. 

These complex, multi-systemic illnesses cause intense suffering, and approximately one quarter of sufferers are house-bound or bed-ridden, cut off from the outside world, and dependent on others for help with basic tasks such as preparing meals, bathing, and mobility. Yet these very ill Australians currently have very little access to basic support services.

Our vision is to help sufferers of these conditions feel supported, connected, informed and visible.  We need your help to make a change.  Please stand with us and fight.  Join this THUNDERCLAP to take over social media simultaneously so we can raise awareness and some money to support these brave warriors.