I drew this

…little picture.

It’s a sketch about how it feels to be six years in to living with Dysautonomia.  The blue is a nod to the colour for Dysautonomia Awareness.  And the name of the sketch is ‘cyan-ide’.  A wordplay on the colour cyan.  A nod to how this feels like a slow poisoning.

Bleugh.

Not much more to say about that today.  I’m going to let the picture do the talking.

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The Wide Blue

Oops.  I really AM having a break from the blog, but I just had to share this with you…

I’m listening to  ‘John Dunbar’s theme’  by John Barry, far above the Pacific Ocean.  The evocative, heart stringing melody pulls me into a contemplative space. The clouds out my window look like snow drifts on blue ice.  It is so beautiful.  My heart aches with the beauty of our world. I can barely understand how it is that I am flying through the blue atmosphere of this planet, eye on the curve of the horizon. Feeling so far from lost. Home in the clouds, in the air.  On my way.

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The first time I remember being in a plane was when I was around seven years old. I was clutching hold of a single rose, struggling to make sense of the painful lump in my throat.  If I close my eyes I can feel the shape of the cellophane stem in my hands, I can feel the sadness that overwhelmed me.  My best friend Dana had just said goodbye to me in the airport and given me a rose. The singularity of that flower made me realise; I was leaving the safety of being of ‘she and me’. It is the first time I understood the loss of friendship.

The strains of losses, goodbyes and farewells fill the spaces in airports and airplanes. Almost every soul on board this flight must have said goodbye to someone, somewhere.  There are heavy hearts and happy hearts, hopeful hearts and the heartbroken.  We are bound for a new destination and whatever might come.  I wonder about the stories they hold, all these people.  I wonder who they are.  What are they carrying on board today? Not their luggage; their heart burdens.  Are they as fortunate as I am? Do they have a compass for home? A warm nest of their own? Will someone be missing them tonight, reaching out their hand to find cool sheets where their warmth used to be?  Will someone be wishing they could hear them breathing, wishing they could rest their cheek against their back?

I sometimes feel so unfortunate.  I see how things are changing for me, how much less mobile I am, how much more I am struggling. And it makes me feel a strange combination of desperation, frustration and sadness.  And then, here I am, looking out the window; the arcing blue sea shifting into powdery sky and I feel calm. Blessed, even.  I get to do this. See this. Be here and have thoughts and words and experiences.  I get to make memories with people I love.

I can’t give you all the beauty outside my window; I see it, but so many people won’t.  All around me eyes are closed to the view.  People shift in their seats, or resolutely shut their eyes to the gift just there, outside the window. You have a window too, somewhere there, where you are. Have you looked out of it lately? Taken deep slow breaths and let the beauty fill you up?  I quench the parched terrain of my sad thoughts when I look outward. Don’t look down, look out. Look up. Just, look.

Listen to this music. Come, get lost and found with me, out in the blue.

(…and just in case you are wondering, that friend and I are still friends.  We found each other again at 19, saw a bit of England and a bit of the Netherlands together.  And twenty years later, we email still.  Hi Dana!  True friendship is never lost).

Blue

Feeling blue has been big in the online world lately. People are starting to talk about depression and anxiety, about mental health in general. People are having conversations that may in fact make a big difference to our society. For our terrible suicide rates.   ‘Feeling blue’ can be a twee kind of way to say that someone is sad, low, down or depressed. I’m not going to write about feeling blue today. If you want to read a really great post about that, head here, or here.

Sometimes, in my experience of life with a chronic (invisible)  illness, I think it might be useful if I was actually blue.  If I was a little blue creature like the ones in this Eiffel 65 clip (sorry, but I have had this song stuck in my head), no one would expect me to do the things that a big grown healthy human might be expected to do. They would see at first glance that I am different.  They’d ask me all about it, they’d wonder about my species and scientists might want to study how my body works.  I may be weird, but I am no little blue man.  There will have to be other ways.

October is Dysautonomia Awareness month.

Blue is the colour of our awareness campaign.  It’s a pretty blue.  Although, there is some political disagreement currently, about our ‘exact’ blue…  Apparently the prostate awareness colour is deep blue (all this awareness campaigning can be confusing). Dysautonomia International’s Awareness campaign this year is ‘making noise for turquoise’… but longer standing groups have been using a mid blue for quite a few years.  So I have decided to embrace every blue hue this year.  Brilliant blues. I don’t think we need to have a blue about it.  Let’s just be blue.

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So, how?  I’m not the sort of girl who could pull off a body painting situation, someone might mistake me for a giant jellyfish and roll me back into the ocean.  Nail polish is great, you know?  But a bit last year.  I’ll still be having blue nails for Dysautonomia Awareness month, but Michelle from Living with Bob had a brilliant idea. She told me she’s doing something kind of radical for October.
Inspiring.

I’m going to kind of, sort of …do what she is doing (it’s a surprise), but to a much lesser extent, ‘cause I am a wuss.

This month, to get people asking and give me an avenue for talking about it, I’m going blue too.  I’ll take some pictures tomorrow, as it happens!  I’m also going to wear as much blue as I can, all month.  I am going to pull out last years’ nail polish.  And I’m going to instagram a blue photo every day.  #dysautonomiachallenge   Want to join in?

Cos I’m blue, dab a dee dab a dah.  
I got dysauto-nomi-a…

I am trying not to feel like a big blue failure though.  October is our awareness month. I’ve been thinking about it for months, I even had a friend, the very talented Katie Clausen, do a little drawing for me so I could make t-shirts, but I haven’t even got that together. I bought bracelets to sell for a fundraiser, and I can’t find them anywhere.  Boo.

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For now, I’m going blue!

Awareness month will need to evolve in its own fashion here on the Chronic-ills of Rach. 
Will you be going blue, too?

 

TA DA!  Here’s a pic of my new, blue, do.

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