Q and A

Last month, I had to deliver a ten minute talk …about me.  My story.  It was part of the block weekend for the Leadership Programme I am doing.  The programme is about leadership in social change and it is challenging my thinking in lots of ways. I really prefer writing to talking (I know some of you will find that hard to believe!) and speech making isn’t really my cuppa tea.    But I started doodling, as you do. I doodled lots of question marks.  And then I made a real cuppa.

www.rachelfaithcox.com(11)

When I returned to my doodles, I stared at those question marks for a long time.  And it occurred to me that the best way to tell my story, was to do it using the defining questions of my life. There have been so many things I have wondered, but I pared them down to the bare minimum.
So! Here is what I came up with.

My Life, in Fourteen Questions:

I am a kiwi girl, born just after my parents completed bible college in Australia. My parents felt moved to work on the mission field in a third world country. So I was raised in Papua New Guinea, then I went to boarding school in Australia and soon after that, they went to China. These were the locations of my upbringing. In total, I attended 13 schools, four tertiary institutions and eventually moved back to New Zealand when I was 23 years old.

There were lots of things about my childhood that made me think.  And one of the first big questions I remember thinking, was:

"What makes us think our religion is more right than theirs?"

I liked to think about things as a kid.  And I started to notice other odd things about our world.  I noticed that when I was at the international school in PNG, there were more than forty nationalities of kids and everyone played together. Where we were from wasn’t even a factor in the forging of friendships.  But when I went home to New Zealand on furlough, people teased me for coming from a place where the women wore grass skirts and showed their boobs.
I was an outsider in my own country.
I began to think,

"Why do people have to be the same to be accepted?"

In my teens I became deeply philosophical, the way some teens do! The questions came thick and fast:

“What is the origin of thought?” “Are we inherently good… or evil?” “Is all this real, or just a figment of my imagination?” “Is life governed by fate, or are we self determined?” “Why are we here?” (and you kids from the seventies and eighties will relate to this one) 
“Are they gonna drop the bomb, or not?”
But these deep questions were all overwhelmed by a far more pressing issue:

“How do you pash?”

(Note to teenage self:  Mum’s historial romance novels were not the place to search for this information.  “She explored his mouth with her tongue” was a stylistic interpretation, not an instruction).

By this time, I’d been given the nickname Falling Tree because I was fainting a lot.
No… not because of boys (but there was plenty of swooning, too… I’m looking at you Morten Harket)!  I made it through my final year of high school and got into a competitive Journalism degree at a Sydney University.  I was ecstatic!

My well meaning Dad thought journalism would corrupt me, so I wasn’t allowed to do that course.  But a year later, when I reframed my University ambitions to encompass a career path ‘better suited for a woman’ I was allowed to go.  I embarked on a degree in Education and Teacher Librarianship.  Instead of writing words, I planned to surround myself with them.
But I wondered,

"Why does being a girl have anything to do with it?"

It took me seven years to get that degree (it was a bit boring).  Across that decade, I moved countries, got married, and divorced, and valiantly embarked on Project: Find a compatible Handsome Prince. There were quite a lot of frogs to kiss, so I used my knowledge of pashing with great determination.  Surely one of those frogs would be him…?!  And all of a sudden three wonderful things happened in a short space of time.  I found my man, we bought our first house and had Bee and Little Zed. All my dreams were coming true.

Then one day I got the flu, and I never recovered. Can you imagine that?  I was constantly dizzy and fainting a lot. But the faints were actually my heart stopping. I was fitted with a pacemaker to keep me ticking.

I asked a lot of questions during those early days of sickness, but the biggest one was

"How Long will this Last?"

No one knew.   Other parts of me starting going wrong: digestion, bladder and bowel function, temperature regulation, cognitive function, I couldn’t sweat properly, my pupils were not reacting properly to light, I had constant nausea and dizziness every time I moved to stand.  My blood pressure and heart rate were all over the place. I began to experience burning, tingling and numbness in my hands and feet, I struggled through daily chores. I had to quit teaching and we had to take in home stay students to cover my loss of income. The fatigue swamped me. My gait and mobility started to change. Every day was an exercise in pushing through. Pacing. Planning ahead.

I ended up in front of a neurologist who explained that I have a progressive form of autonomic nervous system dysfunction called Pan-dys-autonomia.  That covers all the automatic things your body does.  I know some of you here might relate to that. What made my problem odd was that I had it without a primary diagnosis. Dysautonomia is common in late stage MS and Parkinsons, aspects of autonomic dysfunction affect people with spinal cord injury too.  But the cause of mine was elusive. Six years of watching the progression, endless tests, treating the symptoms and fearing the decline and fall of my future led me to this desperate question:

“Can’t something be done?”

That question was met with averted eyes and shaking heads. Do what you can with your family now, I was told. Before you can’t anymore. I didn’t like that scenario. We embarked on a proactive memory-making schedule. A family holiday, the prioritising of togetherness. And I researched. My research led me to other patients overseas.  I listened to their stories, finally finding people who understood. I began to think deeply about the issues that face people like me.  People with ‘invisible’ illnesses, disability and accessibility issues that aren’t immediately evident. People with rare diseases or poorly understood diagnoses. I wanted to know what could be done for them, too. The injustices of all those lives lived beneath the radar began to burn my brain.
It led to this question:

“What can I do?”

I was offered some work writing for an overseas blog. And I remembered that I like to write.  So I started to write for more people, and even for myself. Blogging led me to ask many more questions, but for the first time I was beginning to see that it was leading me to answers too.  About me, about my purpose, and the beautiful, simple idea, that I could do what I do best.
I could write about it!

One day, I found a Youtube video by a specialist overseas who was treating patients like me, and getting results.  My general physician didn’t want to know. So I pushed and I fought and I learned to use my voice with sometimes, quite intimidating doctors! I kept writing for The Invisible and they began to respond. I wrote for me and began to take action. Until finally, I found a specialist who had read the same papers as me, who had seen the same video. He started me on a new treatment regime in January and it is so far looking really promising.
Fingers crossed!

And here I am, feeling better than I have in six years, embarking on the Be.Leadership Programme, and wondering

“Where will this lead?"

I know first hand that while we are all, to some degree,
defined by what our bodies can do and not do;
more powerfully, we are defined by
what we think,
by how we feel,
and by what we can do about that.

I think we have a responsibility to
help people understand
that our common humanity
is bigger than religion,
it is deeper than culture or race,
it is more practical than philosophy,
it’s broader than gender
and more timeless than life spans,
it’s our world’s biggest learning challenge
and it even transcends our physical abilities.

Those questions of mine have taken forty years to percolate. And I am just beginning to understand that they all point to the same thing.
That we, at the heart of things, have more in common than we don’t.

I am so grateful to have found an authentic way to connect my heart for social change, to society.

“How did I get so lucky, to have my heart awakened
to others and their suffering?”

Pema Chodron

Q and A
Q and A
Questions and Answers

To Be.

tobeornottobe

Toward the end of last year, just as my sorry self was beginning to think I was running out of anything important enough to offer the world, I received an email that heralded a big change.  It was from Kylie at the Be.Accessible organisation.  I’ve written about them before, here.  They do excellent work in New Zealand: working onsite to improve accessibility across the country, increasing employment prospects for graduates with accessibility issues, championing the thinking about accessibility and community with the big thinkers of the private sector and developing leaders for social change.

I had written a piece about my birthday shopping expedition.  It was an accessibility nightmare.  You might have seen that piece, it was called Gone Girl.  Well, Kylie read it and emailed me, inviting me to a meeting to discuss ‘synergies’.  I thought that maybe she wanted to talk to me about my writing, so I went prepared.  I took a copy of my stats from the blog and had prepared to answer questions of the commercial kind.  But Kylie and her colleague Iris, wanted to know about my philosophy.  My core beliefs.  My illness journey and why I write; they asked if I knew what my audience was and for the first time I had an objective measure of what those stats meant.  It was a turning point for me. Kylie asked if I had thought much about the future of my blog and the directions my writing might take. And she outlined the Be.Leadership program.  They invited me to apply.

I came home fizzing. My whole body was shaking with the effort of the meeting, the nervousness I had felt and then the excitement as a whole new possibility opened up for me.  It’s one of the things I have learned to love about having a life that has swerved so far from my original plans. It keeps surprising me!  I applied, and then, on Christmas Eve I received the message I had been hoping for.  I had been accepted into the program.  Every year, 20 people from the disability community are selected to undertake a year of inquiry, reflection and growth in the field of social leadership. We’ll be engaging with leaders from a range of industries and sectors.  We’ll be workshopping, discussing, thinking and growing as leaders ourselves.

One of the things I thought had passed me by when I got ill, was the opportunity to do further study.  I just didn’t know how I would manage to physically do all the things required to even begin.  How I would be able to manage a fixed schedule with an unpredictable illness?   But life seems to be smiling my way.  I will be studying, after all.  I’ll be studying with an organisation who are committed to accessibility, they are perfectly positioned to understand diversity. So it will be possible for me to make the accommodations I need, to do what I need to do. And I will be studying something I am passionate about:  how to help make our society one “where everyone can just BE.” (Minnie Baragwanath).  I’ll be representing the unique perspective of people suffering with invisible illness and disabilities.  I’ll be writing.  And if I continue to feel as I do now on pulse steroid therapy, I’ll be able to do it with so much more energy.

After years of pushing against a tide of impossibility, my own sea of troubles, there’s a ship on my horizon. Once upon a time Shakespeare penned the timeless question; “To be or not to be?”.   I smile, as I write the following words: ‘to Be.’ is my answer.  To be all that I can be.  The programme starts in March, I am gathering together my reading list and filling my head with all manner of anticipations! But before I get all carried away with it, I want to say thank you; because in all truth, this pathway has opened up for me because of this blog… and that wouldn’t exist without my readers. That’s YOU!  I have found that writing about the things that matter gives me purpose, knowing you care about these things too gives me hope.  Thank you for giving my words the chance to enter your space. Thank you for reading and encouraging and helping me through all of the difficulties.  Thank you for sharing with me a passion for growing a compassionate, understanding community for people with invisible illness and disability. Now, it’s time for us to celebrate something great.  The start of an exciting new learning journey.  I can’t wait to share it with you!

I’m off to Be.Leadership!

teddyrooseveltP.S The above quote was mentioned by Bear Grylls in his show, The Island, on the telly last night.  He was talking about great leadership.  It stuck with me because I think it is a vital part of leadership. How important it is to show people you care before you can hope to lead them.  It is my desire to be that kind of leader. I’ll be thinking about that while I prepare for my first ‘Be.Leadership’ task.  Watch this space!

To be or not to be?

Life Lessons from Lulu

It’s been a week since Lulu came into our family.  She is a horse.  She is the horse I said we would never own, the horse that was way out of our budget, the horse that was a dream only and very unlikely to ever come true.  Until the phone call came saying that she existed, she was available.  Our daughter’s riding coach, Alex urged us to just do it.

But I’m not well enough to help!   I thought.
“She’s a beautiful pony with an excellent background”, said Alex. “She’d be great for Bee”.  I figure when an experienced horsewoman tells you that, it is good to listen.

Screen Shot 2014-12-13 at 2.33.42 pm

We agonised for half a day.  Thinking about our budget, our girl, how hard she has been working towards her goals as a rider.  How hard she has been working in general.  When finally, the budget was worked out and a decision was made, I called Alex.  “YES!” I squealed, barely understanding the magnitude of that one small word.   She called back with what I felt sure would be confirmation that Lulu was ours.  But the news was far more devastating.

“She was sold half an hour before we called them back”, Alex groaned.  The bottom dropped out of the cloud of happiness I was perched on. I decided it mustn’t be the right thing.  Decided the timing must be wrong.  Decided it was a sign we should have said, no.  Who are we, anyway, to even think we could be part of the horsey world?  Our daughter, maybe, but us?  We’re clueless!  My insecurities herded all my hopes back up into a tight little knot and locked them away again.

Two weeks later, Alex texted.
“Lulu might still be ours, I’ll keep you posted”.  And then, all of a sudden, she was.  Her new owner sold her to us.  Alex had called and made a case; the new owners must have had a soft spot, because they agreed to let us have her. She was ours. The money changed hands.  The pony was on her way. The plans for the big surprise were underway.  Somewhere deep inside of me, my own little girl heart swelled up with joy.  Lulu was already wound tightly with my heartstrings.  My buried hopes began to creep out of their hiding place.

When my daughter met her pony for the first time, she was rendered speechless.  Not a sound came out.  She walked over to her, took hold of the lead rope and gazed up into that beautiful pony’s big brown eyes.  She didn’t even ask her name, just stood in quiet awe, looking at that big grey girl.  Her own horse. When she had gathered herself.  She croaked out ‘thank you’s, to Alex and to us.  It would be half an hour before she could tear herself away and wrap her arms around us.  Snuggled into her Dad’s chest, all she could breathe was “I have my own PONY”.  We let our tears gather across her warm blonde head.  Her dreams, our dreams; so closely entwined.

Photographed by Beverley Couper

Lulu is cared for by Alex at her stables.  Bee heads out there three times a week to exercise, wash, groom and feed her.  I was so worried that my illness would make supporting Bee with her pony, impossible. But it isn’t. It’s just like anything else.  I have to pace, I have to prepare. And then, when we are there together, I have to push through. But the payback from that beautiful pony!  It’s worth every effort.  She is the relief of joy when it all seems too bleak.  She is a velvety muzzle and a kind eye. A warm reassuring flank.  A wise girl, teaching my girl, and I, lessons we will never forget.   She brings much more than she takes. We did the right thing. Here is what she taught me today, our first day out with her on our own.

Hold On
Lulu is a big pony. I am a big girl, and my girl Bee is all wiry muscle.  But the strength of one horse outflanks both of us easily.  In her paddock, Lulu was accompanied by four really big sporthorses. Tall, elegant horses with lots of muscle.  After Bee slipped the lead rope through the ring on Lulu’s collar, they came galloping up towards us in a show of frightening intimidation. They all converged on the gate, and Lulu, at once.  The horses began to circle and agitate, Lulu was feeling spooked as they pushed her into the corner.  My mother-vision saw trouble (you know, that fast forward reel of all the things that could go wrong? Those horrifying action shots all mothers watch in their mind’s eye?) ….  Bee let the lead rope out, but held it firm, taking quietly to Lulu.  The horses thought better of staying, turned and took off again.  Lulu remained. If Bee hadn’t held on, she’d have been running the length of that paddock playing chasey.  Hold on.  That’s what I learned from Lulu in that moment.  It might seem like the circumstances are stacked against you. It might seem like nothing is going to turn out right. Like the scary dangers, way bigger than your knowledge of things, might all come to fruition.  But hold on.  Hold on to your hopes for wellness, hold on to your hope for treatment, for answers, for more medical research.  Then, when the scary stuff abates, you’ll be hitched to your dream and ready to ride.

Photographed by Beverley Couper

Look where you want to go.
We were bringing Lulu up from a lush grassy paddock where she had been holidaying with her horse buddy Spiderwings.  She didn’t want to leave all that delicious grass behind, certainly not without any of the others.  I guess if I was a horse, I would have preferred to stay there with my buddy, too!  Leading a reluctant horse along a country path is impossible if her will is stronger than yours.  Bee and I, together, struggled to take her along the path. She turned five times, pushing us away so she could head back. Eventually, Bee took hold of her lead rope with steely determination. “This. Way.” she said firmly to Lulu.  Then she lifted her gaze to where  she wanted to take her, and began to lead. Lulu followed, just like that.  Whenever Bee’s gaze wandered, Lulu would try to go back. But when she kept her eyes on her destination, Lulu let her lead.  So it got me thinking.  I know my purpose, but I can’t fulfil my purpose if I don’t have my eye on my destination. Thanks Lulu, for showing me something about how to move forward.  I’ve been floundering a bit lately, wondering if I truly do have something useful to say here on my blog. I think I do.  But I’ve been looking down, sinking in my doubts.  The only way forward is that I must lead myself, eyes up, one step in front of another, heading to where I want to be.

Photographed by Beverley Couper

Work Hard
There is much that goes into a short horse ride. There’s retrieving the horse from the paddock. Easy peasy, (huh)! There’s actually getting her from there to the stables.  Then there is tacking up.  My nine year old heaved the saddle across to the arena fence with a grin on her face.  Saddle blanket, saddle, girth strap, stirrups, bridle, reins. Check, check again. Finally, satisfied that it was all on correctly, Bee climbed up onto the mounting block and swung her leg over Lulu.  They exercised in the dusty arena, in full sun, for an hour. I watched them with wonder from the cool comfort of the car. They are new to each other, but there is something good happening between them. There is trust.  Security.  They’re taking it slow, feeling each other out.  Getting it right. Bee holds herself with greater poise, she leans in more often to murmur lovely things to her girl, Lulu. Then, when it is all over and most kids would collapse into a chair and gulp down some water, asking for food; Bee takes Lulu to the wash bay.  Can you imagine what a big job it is for a kid to wash a pony?  She does it. I ask if she wants a hand, “No mum.  I’ll do it”.  After washing, there is spongeing, taking off the excess water, making up the feed, feeding, packing up, putting the summer blanket back on, and leading back to the paddock. She eventually climbs back into the car.  She’s tired.  But her face is glowing.  I ask her how she feels, “Satisfied,” she says, “I’ve seen my girl, I’ve had a ride, she’s all tucked up.  It’s feels good”.  And I see it.  Hard work feels good.  I think about how the type of work I do has changed.  I work at words now. I smile at the thought of how satisfying that is.  Lulu, you remind me.
If I want to feel better, I need to work hard, in whatever ways I can.

Connect
Over the years, I’ve met lots of horses.  Since Bee first dragged me into the world of pony obsession, we’ve watched her infatuation with many, and I have harboured a few pony-love-flames of my own. I’ve spent time snuggling with all manner of horse personalities.  Nick, Star, Jonte, Candy, Dougall, Scooter, Mellow, EightBall, Billie, Pretty, Brio, Ace, Beau and now, Lulu. Each one of them has given me gifts when I connect with them. Solace, empathy, compassion, peace, inspiration, kindness, warmth, love.  Horses are so generous with the clueless parents of their riders.  I have been greeted with such grace and always I come away with wonder. Today, as I quietly freaked out at wilful Lulu on the country path, it occurred to me that I hadn’t even said hello to her before we wrenched her from her buddies to follow us. I hadn’t taken the time to connect.  Bee had, though. And it was Bee she followed.  Half my size and twice as compelling. I took this lesson from that moment: Take the time to connect with the people (and animals!) in your world.  You will be surprised by the gifts their presence will bring, and the things you may learn from them in the connecting.

Photographed by Beverley Couper

What a day.  What beautiful lessons to be learned.
Thanks Lulu, thanks Bee for letting me learn from your pony.

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Have you been feeling overwhelmed and afraid about the circumstances you face?
Hold on.
Have you been feeling like you will never make it to where you want to be?
Look in the direction you are going.  And lead.
Have you been floundering about how to achieve your dreams?
Work hard.
Have you been missing the beauty life holds, right there, just out of reach?
Connect.

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All the photographs in this piece, except for the first, were taken by our friend Be Couper.  You can find her work, on a range of subjects, here.

Getting Grown-Up

Happy New Year

Every New Years my hubster and I sit out on our balcony after the kids have gone to sleep.  We eat fancy cheeses, oat crackers, pepitoes and plump olives… and my favourite; grilled artichoke hearts.  We toast another year. We talk about how it has been and stubbornly focus on the achievements, congratulating ourselves for what we have managed.  Then we plan the next year together. As the years pass and my body presents more challenges, we’ve been surprised by how much we can still do.  Together.  2014 has been a good year for us as a couple. It’s been good for us as a family.

It’s taken all year, but our minor renovation downstairs is complete. Happy sigh! A good year for finishing things, tying up loose ends.  Getting more organised.  We are starting to feel like grown ups. I turned forty this year; next year, he’ll turn fifty.  Takes a while, getting to this grown-up feeling!  Once upon a time, we used to go to New Year’s Eve parties.  That’s just not feasible anymore, and you know what?  We don’t even miss the sparkle and excitement, the social stress, the late night, the hangover.  Last year we rang in the New Year at 10pm and tucked ourselves up in bed.  It was perfect.

We have a decoration on our tree, it is a hanging, lidded gift box, crammed with tiny notes.  This year, when we were decorating the tree, my son asked me what all the folded pieces of paper inside were. He had never noticed them before.  They are all our plans for all the New Years. Written in tiny script, hopes and goals and aspirations, folded into the smallest possible wad and added to the years before.  I showed him and his interest skipped off elsewhere, the way it does when you are seven and Mum shows you something less magical than you expected. We, however, always look at previous years nostalgically when we add a new one! It’s amazing how many of them have come true.  Is that because we wrote them down? Planned for them?  Is it really that simple?

What are you planning for in 2015?

Next year holds so many unknowns for me.  I am supposed to start IVIG treatment.  That will run for six months. I’ve been accepted into a leadership programme, for people who show promise as a voice for social change.  For me, that means really working on using my voice to promote understanding of invisibile illness and invisible disability in New Zealand, building leadership skills, increasing my network.  It’s an incredibly cool opportunity, but I don’t know yet if the first will preclude me from the latter, I’m waiting for some dates to know for sure. I feel like I am suspending my excitement in case it doesn’t all fall into place.  But, OH!  What if it does?!

What is certain for me about next year is that I will be wife-ing, mothering, writing, and getting involved with life in as many ways as I can.

I’ll be spending a bit of time (as much as I can manage) out in the countryside, where my daughter rides; drinking in the goodness of green paddocks and the sweet smell of horse feed.  I’ll be stroking the warm neck of her wise and good pony and watching my girl follow her bliss, hair flying out behind, grin on her face.  It’s the best soul food on the planet, watching your children do the things they love.

I’ll be wrapping my arms around my little guy as often as I can. I feel that he is moving on up into a new stage and the little boy sweetness of his cuddles is making way for boundless, urgent energy. He’s a big kid now, a purple belt in karate, a story-writing, poison-ball-tramp-champ-justice-leaguer. He’s growing up and I am treasuring the last vestiges of my baby boy.

I’ll be working on some more pro-active health measures.  I want to improve my gut motility somehow, so I am going to work on what I feed it, I’ll be giving my intestines a rest in the very early New Year by starting a liquid diet.  I had a gastrograffin study which showed, when compared with my recent gastric emptying study, that liquid transits through my intestines with much more ease than solid food. So goodbye cake! I’ll be souping it up instead (know any great soup recipes?). I also want to do all that I can for my general mobility and my fitness, so I am going to the rehab centre to work on my exercise program. I’m excited and hopeful about what that might do.

I’ll be here, blogging about my life with dysautonomia, and all the other things besides.  I’ll be connecting with you over on my Chronic-ills of Rach facebook page. I’ll be emailing, advocating, writing and doing the work I have been given to do.  There is so much more of it.   Hang around with me, I’ve just got this feeling that 2015 is going to be a good one!

How do you celebrate New Years?  Can you?  Do you have little rituals too?

Calling out My Name

So many exciting things have been happening in my life lately.  Thanks to my friend Sheryn, I made a connection with an organisation called Be.Accessible who are passionate about creating social change in New Zealand. Their vision is for our country to be wholly accessible, so that anyone of us can just, be.  It’s a vision that has a great deal of synergy with my own. My own efforts towards building awareness and understanding in our community here in New Zealand (and with people online everywhere) are all about that.  About promoting understanding and acceptance.

Sharon Davies   Be.Leadership Alumni

I feel very strongly about helping people with ‘invisible’ illness and or disabilities, chronic illness and rare conditions that people find hard to comprehend. I write not just for me, not just for people with Dysautonomia, but for anyone who suffers the torment of not being understood, of finding judgement where they should find kindness.  I use my words so that others might find something they can share with their loved ones. A way to explain what they haven’t been able to explain.  Sometimes it is hard to find the words.

Doing that.  Using my words, has brought me to a surprising place in my life.  My health continues to deteriorate, but my heart and mind are filled with bigger and better thoughts than ever before. I saw my Granny today and she asked “Are you well?” and I could honestly reply to her “All is well with my soul!” I have a purpose and a direction that I never even knew was in my future.  I thought everything was so lost to me. I thought all of those things were out the window. Gone. But here I am, about to embark on something new.  The joy bubbles up from inside, how surprising and wonderful life can be!

Last night I attended an event here in Auckland, down on the waterfront.  It was the graduation for this years participants in the Be.Leadership programme.  The programme aims to mentor people into positions of greater social leadership by providing a year long programme of discussions and learning with some of New Zealand’s great leaders.  Among other great initiatives!  The program cost is $17,000 and this is fully funded for selected participants.  I have applied (squee!) and I am waiting to hear what happens next… so watch this space!

Sharon Davies   Be.Leadership Alumni(1)

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Last month I began writing for the parenting column of a popular Dysautonomia Newsletter in the States. And I met my editor, Ellen, online.  Sometimes when you meet someone, just as it is in person, you just click right away. It was like that with Ellen. She understands me and we have had lots of wonderful email conversations, back and forth from one part of the world to another. She is a wonderful encouragement to me. Recently she sent me this song. It stopped me in my tracks. What a voice. What lyrics!  Thanks Ellen, this song is my new anthem, it so perfectly expresses why I continue to find things that I CAN do.  Life is calling out my name.
Here is Beth Hart singing “Life is Calling”

 

…and, the lyrics…
Sunday morning, the world’s still sleeping
And the rain keeps falling like angels weeping
And I, I feel the tears on my skin
They’re trying to tell me something
I listen

Blues and yellows tap on my window
And I let the night go with all my shadows
And I, I feel the sun on my skin
It’s trying to tell me something
I listen

Life is calling, life is calling
Life is calling out my name
Make it matter, say it louder
Stay alive another day
Life is calling out my name

Perfect houses with good intentions
Where the happy families hide their broken dishes
And I, I hear the scars on my skin
They’re trying to tell me something so
I listen

Life is calling, life is calling
Life is calling out my name
Make it matter say it louder
Stay alive another day
Life is calling out my name

It’s the wind over the ocean
It’s the secrets in the sand
It’s all trying to tell me something
So I’m listening

Life is calling, life is calling
Life is calling out my name
Make it matter just say it louder
Stay alive another day
Life is calling, life is calling
Life is calling out my name