Julia: Exploring Dysautonomia Through the Arts for Dysautonomia Awareness Month 2014

(Wonder Woman)

The final piece for Exploring Dysautonomia Through the Arts comes from Julia. I loved this song from the first time I heard it and thought it was an appropriate way to end the month. Living with any chronic illness is filled with challenges and Dysautonomia is no different. But as hard as it is at times we all keep putting the next foot down on the path. We fight big and small battles each day, but we are all still standing. This month has really shown the creative spirit that exists in the community and I've found both inspiration and kindred spirits. Huge thank you to everyone who has submitted, read, commented or shared.



Julia contributed to last years Dysautonomia Awareness Month that focused on Australian and New Zealand stories. You can find her story here.

This is a song that I wrote (with the help of a friend whi is a music therapist). I was having a really rough time last year and couldn't sleep because of everything that was going on so I thought I'd put my words to music. It it the first song I have ever written.

I'm Up For the Fight 

I'm always behind

Always having to catch up,    

Catch Up

If I could just get through

With no hiccups,   

Catch up....  Catch up

If it’s not one thing

It’s another

But I'm always up for the fight

If it’s not one thing

It’s another

But I'm always up for the fight

If it’s not one thing

It’s another

But I'm always up for the fight

I'm done with one thing here comes another

But I'm always up for the fight

Every time I try to just, just be

Just be

It’s like my body is punishing me,    

Punishing me

Stop, punishing me

[CHORUS]

At night when my brain is spinning

Reality can hit hard

My days are filled with denial

Reality can be hard, 

Can be Hard

Reality can be hard

[CHORUS]

I'm up for the fight ----------- (x4)

[CHORUS] 

For more information on Dysautonomia be sure to check out:

DINET 

Dysautonomia International 

Dysautonomia SOS 

NDRF

Syncope Trust And Reflex Anoxic Seizures 

UK POTSies

Vanderbilt Autonomic Dysfunction Centre 

Remember to head on over here to donate to my Clicking My Heels For Dysautonomia, raising money for the Greg Page Fund for Orthostatic Intolerance and Dysautonomia research, at The Baker IDI. Thanks to the generosity of many we've already raised over $3,500, keep donating and hopefully we can reach $10,000.

Gracey: Exploring Dysautonomia Through the Arts for Dysautonomia Awareness Month 2014

Next up on Exploring Dysautonomia Through the Arts is, Gracey. Her work perfectly captures the experience of Dysautonomia. The people walking by while we are horizontal, two different worlds coexisting, yet often feeling so far apart.

I used to take being upright for granted. I could walk and run and play and sit and stand. I loved to shop, and I used to spend a lot of time shopping! I loved to play football and badminton. I liked riding my bike and going for walks through the countryside.

Now I find all those things very difficult. I have Postural Orthostatic Tachycardia Syndrome which is a type of dysautonomia. Everything upright is very difficult for me. Standing can make me dizzy and breathless, make me feel nauseous and in pain. Even sitting can make me feel awful. 

Sometimes I have good days when I manage to push through and do some of the things I have always enjoyed doing. And on the bad days all I can do is lie in a heap and watch the world rush past me. But I don't give up hope because every day gets us one day closer to the day when we find a cure!

For more information on Dysautonomia be sure to check out:

DINET 

Dysautonomia International 

Dysautonomia SOS 

NDRF

Syncope Trust And Reflex Anoxic Seizures 

UK POTSies

Vanderbilt Autonomic Dysfunction Centre 

Remember to head on over here to donate to my Clicking My Heels For Dysautonomia, raising money for the Greg Page Fund for Orthostatic Intolerance and Dysautonomia research, at The Baker IDI. Thanks to the generosity of many we've already raised over $3,400, keep donating and hopefully we can reach $10,000.

Soraya: Exploring Dysautonomia Through the Arts for Dysautonomia Awareness Month 2014

(Comfort, Edvard Munch 1907)

Next up on Exploring Dysautonomia through the Arts is Soraya. Soraya's poem, Comfort, explores the conflicts that many of us face when dealing with illness. Truth and comfort. Our need for both changes each day as we and our worlds change. Balancing both can be extremely difficult.

Soraya Ramhormoz is a writer, patient advocate, social justice and science literacy activist.
She writes about her experiences as a patient and as a human being moving through the world with a mysterious debilitating illness. She hopes her excruciatingly honest descriptions of her experiences will raise awareness, empathy, and compassion that will translate into advocacy for people with chronic and terminal illnesses.

In this poem, I tried to deal with the conflicting emotions brought out by the experience of having a chronic illness like Dysautonomia. We need both comfort and truth when dealing with a life-changing experience like Dysautonomia, but what happens when comfort and truth are in conflict? Which do we choose? For me, the answer can shift from moment to moment. I pride myself in my ability to deal with harsh truths, and I value honesty from medical practitioners and my family and friends alike. But having the comfort of denial stripped from me has been a painful, emptying experience.

I wanted to try to capture the emotional shifts we all have in dealing with chronic illness. And I want people to know that it's ok to be both angry when people we trust lie to us in the name of comforting us -and to wish they would lie to us to comfort us once again. We can be angry at the lie, and angry at the loss of the lie at the same time.

Comfort

"It'll be all right."
In the beginning, that's what they say.
You let the words settle into you, comfort you,
like you're supposed to.
Of course, it'll be all right.


You learn it's a lie in slow,


sudden
bursts


You're angry that they lie to you.


You wish they'd stop
They say that to everyone
It doesn't mean anything anymore —to you

Then they stop saying that —to you
They say that to everyone —else
It doesn't mean anything anymore —to them


You're glad —at first—
that they aren't lying
to you —anymore—


But what do you put
there,
where
the lie used to go?

What do you use
to fill the hole —besides the longing
for the lie?

For more information on Dysautonomia be sure to check out:

DINET 

Dysautonomia International 

Dysautonomia SOS 

NDRF

Syncope Trust And Reflex Anoxic Seizures 

UK POTSies

Vanderbilt Autonomic Dysfunction Centre 

Remember to head on over here to donate to my Clicking My Heels For Dysautonomia, raising money for the Greg Page Fund for Orthostatic Intolerance and Dysautonomia research, at The Baker IDI. Thanks to the generosity of many we've already raised over $3,300, keep donating and hopefully we can reach $10,000.

Kali: Exploring Dysautonomia Through the Arts for Dysautonomia Awareness Month 2014

Today's submission for Exploring Dysautonomia Through the Arts come from Kali. I love the thought Kali has put into her creation. Her explanation of all the aspects of the piece and her use of salt in the creation are quite fabulous.

My name is Kali and I'm 16 years old. I was diagnosed with POTS abotu 2 years ago but I've been struggling with it most of my life.

For the Dysautonomia awareness month contest I created a painting. The painting symbolizes a lot of patients with any form of Dysautonomia, and the butterfly is actually the color for Dysautonomia, which is turquoise. I worked really hard on this painting, and my hands are actually covered in dye and paint (which will wash off in actually couple days), but it's the thought that counts really, the thought that shows that I worked on something that I truly believe in.

In my painting it displays a butterfly on a flower. This butterfly is a great symbol for me because a butterfly has gone through many changes through its life, it's struggled to get where it's at, it had to adapt. All butterflies are unique, like this one, such as all people with POTS or anyone with Dysautonomia are unique because they have different symptoms. Like my GI doctor says "I'm a complicated and unique case". The butterfly is actually made out of salt and food coloring because people with POTS have to increase there salt intake to help with retaining fluids, so salt is very important to my everyday life. Overall, my painting symbolizes who I am.   

For more information on Dysautonomia be sure to check out:

DINET 

Dysautonomia International 

Dysautonomia SOS 

NDRF

Syncope Trust And Reflex Anoxic Seizures 

UK POTSies

Vanderbilt Autonomic Dysfunction Centre 

Remember to head on over here to donate to my Clicking My Heels For Dysautonomia, raising money for the Greg Page Fund for Orthostatic Intolerance and Dysautonomia research, at The Baker IDI. Thanks to the generosity of many we've already raised over $3,400, keep donating and hopefully we can reach $10,000.

Kristi: Exploring Dysautonomia Through the Arts for Dysautonomia Awareness Month 2014

Today's submission for Exploring Dysautonomia Through the Arts is from Kristi. I love that her work was a family effort. The use of colour and collage adding a unique twist to the composition and showing the many parts to life with Dysautonomia from frustration to hope and support.

Kristi was inspired by the work of Marc Chagall as she often sees her new reality of life with POTS/NCS as a bit unreal and hard to reconcile herself to. The collage words express some of her frustrations and difficulties. Although her path is a rocky, difficult one, underneath her are many people supporting her and cheering her on, whether friends and family or the wider Internet community of dysautonomia support groups and blogs.

Although not a studio artist, Kristi is a wife and mom from the U.S. who has POTS and NCS. An afternoon at the table with markers, crayons, magazines... as well as 3 budding artists (ages 11, 8, and 6)...led to her creation, which she hopes presents her experience with dysautonomia in an accessible way for kids and adults. She blogs about POTS and NCS at Even Rocks Cry Out. 

For more information on Dysautonomia be sure to check out:

DINET 

Dysautonomia International 

Dysautonomia SOS 

NDRF

Syncope Trust And Reflex Anoxic Seizures 

UK POTSies

Vanderbilt Autonomic Dysfunction Centre 

Remember to head on over here to donate to my Clicking My Heels For Dysautonomia, raising money for the Greg Page Fund for Orthostatic Intolerance and Dysautonomia research, at The Baker IDI. Thanks to the generosity of many we've already raised over $3,300, keep donating and hopefully we can reach $10,000.

Rachel: Exploring Dysautonomia Through the Arts for Dysautonomia Awareness Month 2014

(Cyan-ide - Rachel Faith Cox)

Today's contribution for Exploring Dysautonomia Through the Arts, is from Rachel. I love Rachel's picture and accompanying poem and once again it feels like slipping into familiar clothes the themes are so close to home. 

Hi, I'm Rachel, I have Pandysautonomia and live in New Zealand. I am a Mum of two and a wife too. My picture is called Cyan-ide. It’s a play on the colour cyan, blue being our awareness colour for Dysautonomia Awareness Month.  Cyanide because sometimes it feels like I have been poisoned slowly. My form of Dysautonomia is progressive, so that relentless decline and fall feeling is often with me. I drew this with pencil, ink pen, felt pen and coloured pencils. Anything I could find easily in the kids’ homework supplies drawer. I find so often that my creativity is drained by the efforts it takes to set up supplies and get it all ready to go. But this project had a deadline which was good motivation to get it done, somehow! I wanted to show how Dysautonomia feels. In those moments when your family have gone to work and school and you don’t have to have your brave face on anymore. I wanted to show how trapped and held we feel when we wake to face another day of it.

I also wanted to write a poem to accompany the picture, but the poem took longer to put together. Finally, today, after three straight days in bed, I got it done.  Thanks Michelle for waiting for me to send it to you. I've called the poem Free Fall and it is really an exploration of the desperate relationship I have with sleep. With hope. With the difficult thoughts. I am usually more upbeat in my writing, but it has been a true release to have this opportunity to express myself and my feelings so freely.

For more information on Dysautonomia be sure to check out:

DINET 

Dysautonomia International 

Dysautonomia SOS 

NDRF

Syncope Trust And Reflex Anoxic Seizures 

UK POTSies

Vanderbilt Autonomic Dysfunction Centre 

Remember to head on over here to donate to my Clicking My Heels For Dysautonomia, raising money for the Greg Page Fund for Orthostatic Intolerance and Dysautonomia research, at The Baker IDI. Thanks to the generosity of many we've already raised over $3,200, keep donating and hopefully we can reach $10,000.

Stefani: Exploring Dysautonomia Through the Arts for Dysautonomia Awareness Month 2014

(Cassandra, Evelyn De Morgan,1898)

Today's submission for Dysautonomia Through the Arts comes from Stefani, with her beautiful song Upright. Her inclusion of the Cassandra myth is perfect within the context of illness. 

I am a musician, a wife, a professor, a lover of cats, a recovering academic, and a chocolate fiend. I was diagnosed with POTS in 2011 and am still on the long road to diagnosis, garnering knowledge and hoping to share with others what I have learned. When I'm not lying prone on my couch, I teach English at a community college, I write music, I play video games with my husband, I blog and plan a book about my health adventures, and I plot and scheme for the next chocolate fix. 

This is a song I wrote about a year ago while I was working on other material for the album I hope to someday record. This one was written mostly as an improvisation and has changed little since. I have been battling with POTS and Dysautonomia for almost four years and some other undiagnosed neurological awfulness that is taking away my ability to walk and this song was a little a reminder to myself that I am strong despite these battles. It is a reminder that despite the limitations of my body, my mind is boundless. In my pre-sick life, I used to be a gymnast, an avid hiker, and was working on a PhD, but I remember what it’s like to soar in the air and climb to the top of mountains. This song is a reminder that I still have those memories and the fierceness that helped me achieve those things has never washed away. I am still powerful, creative, intelligent, and strong. This illness takes many things, but it cannot take any of those away from me.

I have identified with the Cassandra myth since chronic illness entered my life. She was able to foretell the future but was cursed to never be believed. Since being told it is “all in your head” is so universal for those with dysautonomia at some stage in their diagnosis, I like to think that there is some justice in the world, and I think Cassandra achieved this when everything she foretold became true. I like to think her struggle is parallel to the universal battles of dysautonomia, so I claimed her as a figure of strength in this song. Although this is a raw, unedited version, I hope that it is still palatable and you enjoy it!

Upright

So strong, so pure

So I’m not even sure I know where this goes

But there’s something here, in my hands

Let this breathe or let this be a body that can undo me

So still, so sure

If she foretells is she blamed

Or let her speak just once again.

Chorus: But you’ll see, I fly so easily

So fearless, so fierce

If you pierce this chest, does it beat?

A body that can undo me

So ready, for more

If she foretells is she blamed

Or let her speak just once again

Chorus: But you’ll see, I fly so easily

For more information on Dysautonomia be sure to check out:

DINET 

Dysautonomia International 

Dysautonomia SOS 

NDRF

Syncope Trust And Reflex Anoxic Seizures 

UK POTSies

Vanderbilt Autonomic Dysfunction Centre 

Remember to head on over here to donate to my Clicking My Heels For Dysautonomia, raising money for the Greg Page Fund for Orthostatic Intolerance and Dysautonomia research, at The Baker IDI. Thanks to the generosity of many we've already raised over $3,200, keep donating and hopefully we can reach $10,000.

Today I cried.

Ugly cried.

I lay on the tiles in the bathroom and I cried. I ate a bowl of silken, baked custard and let the tears roll down my cheeks. Then I cried some more.

Tears.

I let them fall.

One after the other.

Until they were done.

Until I was done.

There wasn't a single cause. Nothing that was particularly worse or different. It was everything and nothing. All rolled into one.

Because sometimes life is too much.

Because sometimes my body is too much.

Because there is no weakness in tears, or the admission of their existence.

Tears.

A pressure valve released.

And now.

I can collect myself and keep going. And I know,

I'll be okay.

Michelle

Naomi: Exploring Dysautonomia Through the Arts for Dysautonomia Awareness Month 2014

(source)

Today on Exploring Dysautonomia Through the Arts, we have another poem, this time from Naomi. I can relate to Naomi's story and her poem and I am sure many others can to. The ups and downs of the journey and the balance of hope and acceptance, and self-preservation. I must say I am loving all the poetry submissions I thought I was alone in my love of writing and reading poetry but there are a load of us out there embracing poetry as an expressive medium.

I don't typically write poetry, but felt inspired to write about my POTS journey for fun. This poem summarizes my experience with the illness and begins right before I got sick, ending with present day. I became ill during my last semester of college when all my plans were suddenly derailed and I was thrust into a ten year quest for answers. I found myself in an unfamiliar world of unexplainable symptoms, unhelpful Doctors, and rounds and rounds of medical tests with no conclusions. When I finally got my answer (POTS), it was a relief to put a name to my condition, but disappointing to learn that the syndrome is not well understood and unfortunately, the treatments I've tried have not helped. It’s been almost 18 years now and I'm trying to let go of the search and work on acceptance, but it’s hard… very hard. I try to keep a sense of humour and sometimes find myself laughing at the absurdity of it all, while other times feel deeply saddened by the situation. But the great thing about emotions is they are usually temporary! This poem is dedicated to all long term, treatment resistant Dysautonomia patients.

POTS Poem

1997, about to start my life

On the right path, all was on track

The future was so bright

Then something went wrong

Strange symptoms took hold

I sought out many Doctors

But none of them were sold

“But I’m so weak, so darn fatigued

My head is just so dizzy

My feet turn blue, they also burn

And my heart is in a tizzy!”

“My dear, you’re just plain anxious

You’re too young to be that sick

Trust me, I’m your Doctor”

I decide he is a _ _ _ _

What to do? Where to turn next?

I am just perplexed!

I turn to Dr. Google,

He helps me with my quest

Search results: “Autonomic Nervous System”

I have a lead, I’ve got a clue!

An expert will know what to do!

Must travel to the city, there is no expert here

I finally get my answer, but it’s still so very unclear

“Postural Orthostatic Tachycardia Syndrome”

Unknown cause, no known cure

Invisible illness, the future unsure

What is that? I ask

I don’t get it, please explain!

I NEED to understand this

--It is driving me insane!

Forget it, say the Doctors

Too confusing, too complex

We’d really love to explain it

--In short, you are a mess!

Your vessels, they’re too open

Your nerves, they’re just plain shot

Your blood goes down, your heart beats fast

And this is known as POTS

How can we fix it, what is there to do?

Salt, compression, medication

--And if those don’t work, you’re screwed!

I try the treatments, I give it my all

I search for causes while trying to stand tall

I become a human pin cushion

I’m scanned from head to toe

Despite a valiant effort, no escape from my old foe

Many years have passed

My heart still beats too fast

How long can this possibly last?

I think no more Doctors, no more tests

I’m tired now and need a rest

--I am done giving it my “best”

NO!

Accept, but don’t give up

Be brave and learn to cope

Just do your best today

But never let go of hope

Naomi S.

For more information on Dysautonomia be sure to check out:

DINET 

Dysautonomia International 

Dysautonomia SOS 

NDRF

Syncope Trust And Reflex Anoxic Seizures 

UK POTSies

Vanderbilt Autonomic Dysfunction Centre 

Remember to head on over here to donate to my Clicking My Heels For Dysautonomia, raising money for the Greg Page Fund for Orthostatic Intolerance and Dysautonomia research, at The Baker IDI. Thanks to the generosity of many we've already raised over $3,200, keep donating and hopefully we can reach $10,000.