The Simple Act of Noticing

#1000speak

http://www.rileyillustration.com/artists?artist=pierre-le-tan
Illustration by Pierre Le Tan

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It was wintry.  Outside my windows, the streets of my quiet suburb were laid in dark grids across the map of night.  The children were sleeping, the fire was on. I was curled up on the sofa, reading a book.  And I heard a noise.  A high, panicked, voice. The sound of a body slamming against a wall, or a floor. A flurry of movement.

Must be someone’s TV.  Just some scary movie.

I returned to my book.  And there it was again.
The hairs stood up on the back of my neck, and I knew.  That screaming voice was real.  That voice belonged to someone who was terrified.  I rushed out onto our balcony. I craned my head around the corner of the house in the direction of the noise.  A deeper voice shouted out

“This time, I am going to kill you!  I’m getting a knife!”

And all in a single moment, a woman fled onto the dark street.  Her nightie billowed around her in the blast of cold wind.  The whites of her eyes flashed in the black night.  And those eyes met mine.  I put my finger to my lips and frantically motioned for her to come through our gate.  She suddenly understood and slipped into our property while the man raged onward, almost now at his front door.  I could hear his daughter trying to reason with him.
“No Daddy, don’t kill her!” I was worried for that girl, but I knew that first I needed to get her mother to safety.

When I reached her, the words tumbled out of her mouth between breathy gasps. Her hands were shaking, fluttering up to her face. No, she couldn’t come inside, “I’m afraid” she whispered, her eyes imploring me for help, even as she refused to accept it. We compromised with her hiding out in the shed. I whispered that she must stay, breathe slowly, wait for me to return. And something big, like an angry mother lioness, began to grow inside me. I stormed out onto the street.  The man, someone I knew to be a friendly, sociable neighbour; wore a rage so deep and fathomless he seemed to have a face that was not his own.  All bluster, I demanded to know what he was doing waking up the neighbourhood. He tried to smile, shrug, appear conciliatory.  But it came out as a grimace, his rage fighting his need to appear normal. “It’s nothing, just looking for my wife” he answered through clenched teeth.  “Get in the car!” he yelled at his daughter.

“No,” I said, with a forcefulness that came from the lioness, “your daughter is coming home with me.  Go find your wife.  Go sort out your problems without dragging her into it!”  My voice lifted with indignation, as I put my arms around his daughter’s shoulders and steered her towards my house.  I was afraid he would see through the bravado (please, please don’t guess where your wife is).  And over my shoulder I hurled, “I will bring your daughter home in the morning when you have sorted it out, and I will not discuss this with you further!”.

He began to protest, and then abruptly, sped off. Somehow he still believed that his wife had run off into the neighbourhood, I imagine he thought she couldn’t have got far, not in her nightie, in public.  I rushed the girl inside.  I smuggled in her mother; so glad to know her daughter was inside too, safe. I was afraid that he might figure out any moment what I had done.  They hid in the room farthest away from our locked door.  In barely audible voices they talked about what to do next. They were so brave.

They called the police who arrived and located the man. The police took him into the house to pack and then took him away. Thanks to the police, to her courage, her daughter’s stalling tactics and the simple act of someone noticing, a new future opened up for her.  For the first time since her marriage, my neighbour and her daughter were free from a terrifying, hidden tyranny. None of us had even known it was going on.  The only thing I had ever noticed about their house was that they never drew the blinds.

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Don’t get involved, they tell us.  Don’t intervene. If you notice something, look away, forget you heard it.  It’s safer that way.  And maybe it is… but only for us.

It’s not safer for them.  What makes our safety any more important than theirs?  Aren’t we all just as valuable as each other?  I could have picked up the phone that night and called emergency services, but by the time I had, the murderous intent of that man could have erased a beautiful person from the earth.   She could be gone.  People need people. Women need women. We are meant to live in community.

Nearly two years have passed since that cold night.  My neighbour is now single, but very much alive. After the police helped her husband off the property that night, the marriage ended; he never crossed her threshold again.  But I still listen out. If I hear something I still stop what I am doing, to investigate. I will always remember that night. The importance of the simple act of noticing.

According to Daniel Goleman, the author of ‘Emotional Intelligence,’ studies have shown that our brains are actually hard-wired to help. We are pre-disposed to acting out of compassion.  I didn’t do what I did that night because I am inherently good, or kind.  Or even because I am foolhardy.  I barely had time to process what was happening until it was done.  I did what I did simply because I noticed something and I reacted to it.  I did what I did because I am human.

So if we are all innately helpful, why is there so much terror happening in the world?  Why the vacuum of compassion?  How has all this misogyny and violence and hatred escalated into so many wars?
Why don’t we notice each other?

Apparently, a surefire way to ‘turn off’ our inherent tendency toward helping, is by focusing on ourselves.  People who perpetrate acts of cruelty have turned off their innate compassionate wiring.  They are deeply absorbed in the justifications of their own thinking.  Their own creed.  Their own agenda. Themselves.  Even the mute onlooker, the passer by of someone suffering on the street.  That person is just as likely to be absorbed in something, self-involved; a phone, the next task, lunch. Selfishness distracts us from our better selves.

Look around you next time you are on a bus, or in a cafe, or doing the school run. When you are at work, or busy with your daily tasks.  How many people are completely absorbed in themselves?  Have you recently taken the time, without your handheld device or distracting thoughts, to focus on someone else?  To really notice how they are?  To ask them, even? To observe people, be aware of their human value. To seek moments of connection.  When we pause from the demanding distractions of every day life, our natural human instincts have an opportunity to operate. Maybe we need only to do this in our own homes, our own neighbourhoods, our own communities.  Perhaps if we all did this, more humankindness would have a chance to flourish. We could grow something really beautiful. And it might even spread beyond the boundaries of our suburbs, it could even stretch out to cover the whole wide world.

Today, a thousand Bloggers are uniting on one front.  Today we are all writing about compassion. The aim is to provide an antidote to the violence and destruction in our world.  The hope is that by discussing compassion, we can help it grow. You can search under the hashtag #1000speak.  Will you join us in speaking up about compassion today?  Tweet about it, talk about it?

You can even practise a bit of compassion in this very moment.  Look up from your corner of the world. In the simple act of noticing; that is where compassion begins.

And if you want to, you can watch Daniel Goleman’s TED talk on compassion here, please do watch, it is so worth it:

To see more of the posts written as part of the #1000Speak campaign, see the link-up below:
http://new.inlinkz.com/luwpview.php?id=497564

The Religion of my Heart #1000speak

On the 20th February, #1000speak will have it’s day.

#1000speak is a blogging movement for compassion. Over a thousand bloggers will be writing about compassion on the same day, in an attempt to bring more balance to world.  In an attempt to focus on the beautiful things about humanity.  The way we are able to get alongside one another and help each other, empathise with one another and even take action toward making life better for others.

Compassion

The subject of compassion is one that is close to my heart. A huge part of my purpose in blogging, has always been to improve awareness and understanding about people with ‘invisible’ illness.  Why?  So that people will have more compassion towards the people in their community who are suffering. Invisible illness sufferers, people with chronic illness or invisible disabilities are not the only people suffering, but they are people whose suffering I understand first hand. I know how desperately frightening, lonely and difficult it can be, living with an illness people neither see or understand. And I want to write words to help people see it, to help people understand it. I hope that my blog, my efforts will make a difference for someone.  I hope that their families and close circle might read the words of someone like me, who knows what it is like to deal with the things their loved one is burdened with.  I hope that my words might give them access to a new comprehension of how it is for them. It’s why I wrote this post, Imagine.  It is still the post that draws the biggest numbers, because it explains chronic illness in a way that any person can understand it.  If you are struggling to find a way to explain your illness to your friends and family, share Imagine with them.

When you look at the latin root words for compassion, you will see why compassion is so central to my purpose.  Com means withPati means suffering.  Compassion means to suffer with.  It is closely aligned with empathy, but not the same thing.   Back in June, I wrote this when I was reflecting on my relationship with religion, it is deeply entwined with my thoughts on compassion, so I thought I’d include it here.

“My soul has been trying to get it right.  I try hard to show kindness where ever I can.  This is part of the religion of my heart.  I try to see all people for who they are without the damage that has been inflicted upon them.  I try to bring thoughtfulness and calm.  I try to connect and cherish.  I try to make the step toward a person rather than take a step back.  I try to add value to the world through the children I have brought into it, by helping them build character and strong values. I try to practise compassion and most of the time, I succeed. I believe in choices and consequences and the importance of making sound decisions.  I believe that we are all important, regardless of creed or religion.  And in my ‘religion’, I think having a good laugh at myself and at anything ridiculous is good for the soul”.

As I prepare for my February 20 post on compassion, I’ll be posting things here on the blog and on the blog facebook page.  What the world needs now is more compassion.  When we can suffer with each other, regardless of the differences between us, we will find a new road towards peace, love and understanding.

Watch this from Brene Brown:
https://vimeo.com/81492863

Treat Me

Last year on the 24th October, I wrote a post for the Living with Bob blog.  Michelle hosted guest posts on her site to mark awareness month for Dysautonomia. It was the first post I wrote about my frustrations with a doctor. I usually get along great with doctors, but occasionally their pre-conceptions get in the way.  Sometimes it is their egos or their ignorance in the way.  This afternoon I saw a very clever and very personable immunologist who specialises in neuro-immunology.  I didn’t even know we had such a rare-feathered-fella in New Zealand.  But we do!

He took such a long history from me that I had to ask if I could lie my head down on his desk!  A few years ago I would have been too embarrassed to ask if I could do that.  But I’m a bit more vocal these days.  He was a very good doctor.  And he even unlaced one of my converse high tops and pulled it off my foot when I needed to get up on the table to be examined(!)  Far out.  Didn’t know that was included in the service!  One bloke on each foot, taking off my shoesies!

The news is that he wants to try me on a six month course of immune modulation therapy.   He is just getting all the paperwork in order and discussing it with his colleague.  He’ll get back to me.  I had to double check with my hubster as we left that he really did say that.  Yep, he really did.  I was amazed too, at the beginning of the consult, when he asked me why I was there, I explained that I have a list of possible causes and I can’t rest until I know I have checked them all out.  He thought that was “fair enough”. It amazes me that some doctors understand why we continue to search for answers and others don’t at all.  Then he went through a paper with me from one of the world’s best Autonomic Neurologists.  Steve Vernino.  He knew who Dr Vernino was (that’s a first)!

I think when I wrote a few weeks ago: ‘catch me I’m falling’… I got sent a few doctors to do just that.  I am so grateful.  For me, but also for others with Dysautonomia in New Zealand. If this story has a positive ending, it will raise awareness amongst the medical community and make a difference for how patients are treated here.

This is my piece from last year:

Sweet Thing

source: worldsweetshop.blogspot.com
source: worldsweetshop.blogspot.com
 

In the past couple of years, my care has been transferred from my Cardiologist, to the General Medicine department of our local hospital.  My General Physician is a specialist doctor who coordinates the other specialists who care for me and they all consult with him as the primary doctor who oversees my case.  In addition to the General Physican, I have seen a Neurologist, a Neural-Opthalmologist, a Gastroenterologist, a Cardiologist and a Urologist. They all see me through their out-patient clinics unless I happen to be admitted for something. I really like this model.

Until recently, my Main Doc was a really lovely, really clever, experienced physician who was involved, interested and not afraid to admit that he needed to find out more. He wasn’t threatened by me, or my lists, my folders or my frequent email attachments.  He wasn’t even threatened by my six foot frame and it’s wobbly instability.  He understood that I wasn’t trying to be an annoying patient.  I was just trying not to be a patient at all. He suspected that I have AAG.  Autoimmune Autonomic Ganglionopathy.   The idea is that the immune system has turned against the Autonomic Nervous System in error.  It begins to pick off autonomic ganglia, preventing the usual messages from getting through, throwing out homeostasis. And this thinking meant that he was open to the idea of my problems being treatable.  That concept, for me, for anyone facing a progressive illness, is the equivalent of being a kid in a candy store. Treat me!  It’s the nirvana of chronic illness. The delectable hope! Shiny, sweet gorgeousness!

But oh! There I was in the candy store, staring up at the jars, salivating. And it occurred to me that I couldn’t just buy what could make my dreams come true.  I didn’t have any currency. The benevolent gentleperson with all the buying power was about to leave the store.  And he did.  The hospital moved him into another department and transferred my care to a new General Physician. One who hadn’t gone through the lengthy discussions with me about the candy and the possibility that maybe, I’m worthy of having a bag of bulls-eyes (immune modulation therapy). My new Main Man prefers the sit-and-wait approach. Main-Squeeze and I at first, politely inferred; then, referred directly to the last doctor’s findings, suggested and finally pleaded for some more action, some attempt or nod towards trying.  He just took off his glasses, said we need to face some realities. Sat back and said that he would like to simply ‘watch’ my progression. Candy shop shut.

The research in this area shows that if indeed I have AAG, the nerve damage that continues to occur over time is unlikely to be able to be reversed.  So I don’t want to wait while he observes more progression.  I want to arrest the progression.  I need to, in point of fact.  Because, like all of my fellow sufferers, I have a life that I need to get back to. A husband who wants a partner in every sense of the word.  Children who need their Mum in ways and at times that I can’t always be there for them.  And a host of other brilliant things that are out of my reach with things the way they are.  Things that would have been, if I hadn’t got sick.  I’ve got some potential to fulfill.  And although the new Main Man doesn’t know it, I am worthy of the attempt.  Aren’t we all?  There aren’t very many of us.  It’s not like there’s going to be a mob looting that candy shop.  And we are very polite, on the whole.  Except for inside our imaginations, where occasionally, we slap people who don’t want to try to help.

I don’t have the antibodies which prove AAG.  In fact, 50% of AAG sufferers don’t.  But there is still a good chance that I would respond to immune modulation therapy.  So, I am standing in the candy store, alone.  Looking up at that candy.  Just wishing that this new doctor would come striding in and say “A bag of bulls-eyes for the little lady. Quick, now, don’t delay!  She needs them!” And maybe, you know, it could happen; he could treat me.

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P.S The doctor who is helping me, knows about me because I kept pushing to see someone.  He’s the one who strode into that candy store on a wave of good connections.  Somebody knew somebody who might be able to help.  He rode in like a gunslinger from the wild west, a justice rider. And I can’t help but think, if I had left the store, or tired of asking for help, I would be back where I was, making no progress and suffering my slow decline. But I didn’t stop asking.  I didn’t stop pestering.

Is there someone you need to ask about something?  Don’t give up, don’t settle.  Maybe you were supposed to read this today.  It is exhausting keeping up the fight.  But life is too beautiful not to try.

By What You Give

 

What would you give for good health?  For good health care?

So many patients I have spoken to in Australia and the United States and in more regional parts of New Zealand, struggle in a system that requires them to give more than they have. Good care in some places, depends on your income. I’ve always been a huge supporter of the public health system in this country.  Our hospitals are free for citizens and often the doctors who work in the private sector are also in public. Expertise is shared.  Our local hospital has supported us through my many admissions, surgeries, my husband’s open heart surgery and a few paediatric visits with the kids, for a broken arm and a gastro bug.  We like to think our tax dollar has been well used.  I always send in my feedback, praising the nurses, thanking the hospital for all the many things they do well.  But our system isn’t always fair. See, I live near one of our best hospitals.  If you don’t, life is much much harder.  And given that the catchment area for Auckland Hospital encompasses some of Auckland’s wealthier suburbs, it isn’t exactly equal treatment for all.

In addition, if your health crisis isn’t always acute, your case will be managed by your local GP, or in my case, General Medicine.  I am one of the ‘lucky’ ones to be overseen by the hospital in this way.  Some other local Dysautonomia patients have had their GP’s referrals to General Medicine ignored.  In fact, my cardiologist’s first referral to General Medicine was ignored too.  I have friends from different catchment areas in New Zealand who have been abandoned by their hospital system, simply because the hospital specialists don’t have answers.  It’s been on my mind a lot lately.  There is a little group of patients here in NZ who need better advocacy, better help.  Our situations are acute sometimes and we will head into hospital for a short, or a long stay.  But mostly, our chronic illness is not well managed by our public system.  We are relatively young, we are aberrations, we are outside the norm.

What would I give to change that?  I’d give my time, my energy, my mind and my efforts. And I do.  That is so much, even though it doesn’t look like much, because all of those things are in short supply.   Surviving each day takes a lot of grit.  Making a stand for better care can be overwhelming.  Why is it that sick people must advocate for themselves?  There are so few of us able to speak out, our voice is tiny. It seems like diagnoses need to be intellectually sexy to get attention. Or at least afflict enough people to make them easy to study and treat.  But we are so few, especially in New Zealand.  We don’t have any of those advantages.  Yet somehow, even a small bit of human kindness can’t be offered up with the latest half-hearted-tick-the-box consultation.  If we can’t have doctors who know, or question, can we not have doctors who are kind?

I saw this pithy quote, framed in a poster once on a doctor’s surgery wall a few years ago. It struck hope into my heart.  Despite the fact that his version was text over a picture of a yacht, which made it slightly distasteful (most people don’t ‘get’ enough to buy yachts from their earnings, Doctor).  Despite the fact that I was about to give him hundreds of dollars in exchange for the hope that he might listen to me, the last part of the quote made me think that he understood things.  Important things about the vulnerability of patients and his responsibility to give his medical brain to the case at hand.  I hoped he might want to give of his listening ears, to apply his scientific brain to my situation.

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Apparently, Winston Churchill never said this.  It’s the kind of thing he might have said, but the closest verifiable quote from him that relates to this is the following:

“What is the use of living, if it be not to strive for noble causes and to make this muddled world a better place for those who will live in it after we are gone? How else can we put ourselves in harmonious relation with the great verities and consolations of the infinite and the eternal? And I avow my faith that we are marching towards better days. Humanity will not be cast down. We are going on swinging bravely forward along the grand high road and already behind the distant mountains is the promise of the sun.”  Winston Churchill

That particular doctor did not in fact, know how to give.  He was much like the bogus quote.  Fake.  He nodded and kept his ears shut.  He said ‘yes, yes…’ while he meant ‘no, no’.  He pressed his groin up against me while I was being examined and was offended when I reacted badly. I paid over all those dollars and left the surgery.  Nobody ever bothered to call me back.

I’ve had so many experiences with doctors who earn their living by what they get, yet have forgotten how to give.

And I have had some outstanding doctors.  Who have listened and talked with me, not to me.  I love doctors who don’t assume me to be stupid just because I can’t remember every detail from years of complex medical history.  Who are prepared for the possibility that a non-doctor might have a few brain cells, too. Doctors who write more in their notes while I rifle through my paperwork to find the exact answer they seek.  Doctors who ask good, open ended, probing questions and who are open to exploring suggestions.

But until recently, it had been a few years since I have been in the rooms of one of them.  After the initial flush and flurry of my dramatic Tilt Table, I was a bit of an exotic patient.  Doctors liked to see what my body could do.  I welcomed the interest, it was a chance to talk and raise awareness.  The pacemaker insertion underlined my cardiac issue and if I happened to be at the GP’s office to discuss, say, my cold, I would see the latest rotation-doctor’s eyebrow raise as he read my notes.  And then, another examination, standing obs, sitting obs, explaining.  Then cardiology successfully transferred me to the General Medicine service of our hospital, so that they could coordinate my care between various specialists.  This is because the Autonomic Nervous System overlaps into many medical disciplines and my problems were progressing into a range of areas.  My new General Physician was exceptional.  His name was Dr David Spriggs.

What makes a doctor exceptional? They have to be smart.  But actually, that is a ‘given’ with all doctors.  So what else?  They have to be the other kinds of smart. Intuitive.  Good listeners.  Engaging.  Thorough. Curious. Open minded. They have to be able to hold eye contact, so you know they ‘see’ you.  These things matter.  Dr Spriggs was all of those things.  He had an amplified stethoscope to assist his hearing.  And I often thought, he may have trouble hearing, but it never impedes his listening.  When we came to a hiatus with my treatment, he worked with a talented Registrar to prepare a presentation about me for the Grand Round.  He wanted to canvas his colleagues for ideas.
And some of his colleagues did have ideas.

But then, the hospital moved Dr Spriggs elsewhere and my care was in the hands of the ‘new doctor’.  He summarily dismissed the ideas offered in the Grand Round and said the approach he had decided on with me was, to simply “watch your progression”.  We’ve been with him for nearly two years.  And my illness has progressed.  It hasn’t been much fun for my family to deal with the progression.  It’s been very distressing for me to watch functions deteriorate and disappear, knowing that it is a result of nerve damage that probably won’t be reversible.

We tried to be good about it.  Who are we to judge the approach of the new doctor, any doctor?  We don’t have years of medical training.  I might have read widely on the subject of Dysautonomia, but that doesn’t mean my arts-brain can make good enough sense of everything I read.  We have been diligent and respectful.  Even in the midst of my last conversation with him, I was quiet and respectful.  Determined.  Angry, even.  But still respectful.  I even thanked him at the end of our conversation for the time he had spent talking to me.  Through gritted teeth, but still…!

Then we decided to bite the financial bullet and seek help privately.   And that is how I met my new, new doctor.  Last night.  He doesn’t work in my speciality, but he wants to help me coordinate my care.  He isn’t familiar with Dysautonomia, but he cares enough to read my notes and respond with compassion.  For our first meeting, he cared enough to actually do prior reading,then he made clinical notes about me and devised an action plan.  Almost everything on that plan was to be actioned by him. My hubster’s warm hand, squeezing mine, told me it wasn’t just me that was amazed.  I am not sure if my hubster breathed during that consultation, just in case it was a dream.  Dr Brandon Orr Walker is an endocrinologist.  And he is also a decent, kind person.  He embodies exactly what good doctors should be.

It did cost money to go and see him.  A lot of money.  But I don’t begrudge him one cent.

He might be making a living by what he gets.  But he is making my life matter, by what he gives.
Our system may not be working, but some doctors still do.