Gone Girl. A Tale of Road Rage.

On a scooter.

Yesterday was my birthday…
I turned 28.  In hexadecimal “nibbles”.
(google it, hexadecimals are kinda cute).

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But back to the story…
…my friend Flo came and picked me up and took me to the mall.  The scooter hire girl remembered me and I got the highly coveted Scooter Number One. It is zippier, better at stopping when you ask it to, and the side mirrors don’t flop down all over your handbag.  Score! I tootled around a few shops high on the joy of a birthday and time with Flo.  I tried not to be distressed that I couldn’t even get down the lingerie aisles in Farmers Department Store. I figured I didn’t really need a birthday bra. I smiled anyway at the shop girl near the fitting rooms in Esprit when she said it might be easier to shop online. It might.  But it isn’t as much fun as shopping with Flo. And why shouldn’t I enjoy a bit of retail therapy?  Then I dropped Flo off for her appointment at the makeup counter.  I should be, er… more into makeup… but the bookshop was just down one floor and it is an unfair competition! Hmmm… makeup, books, makeup, books. It’s really no competition between makeup and books.  A hole was burning in my pocket.  For my birthday I’d been given a cool hundy, and I was thinking about the delicious potential to drop it exclusively on BOOKS!  Squeee!

I scootered down there faster than you can say ‘tortoise’.   A few aeons later, I arrived.  Mobility scooters have a speed switch that ranges from slow (a tortoise icon) to fast (you guessed it, a hare)… but even at hare-speed, it takes a looong time to get anywhere.  In the front of the bookstore of choice, Whitcoulls, they have some displays of new releases.  My twitchy fingers were eager to pick up the first one I could see. I liked the title, ‘Gone Girl’.  But the angled display tables made it impossible for me to pull up alongside on my scooter. I did a sleek little (sixteen point!)  turn and tried to reverse in. I banged the corner of the table.  A Whitcoull’s employee looked across at me, arched her eyebrow and walked off in the opposite direction. I reached for the book. It was 5cm out of my grasp. There was no room to ease myself off the scooter and stand to give myself more reach. Had I had room, I’d have been able to do that. But it occurred to me in that moment, that many people in wheel chairs can’t stand to get to things out of reach; what would they do in this situation?  I looked around for the employee, hoping for some help.  She was gone, girl.

I was not going to be deterred.  A hundred to spend on books is one of the greatest gifts of all time. I wasn’t going to let a bookshop girl with her archy eyebrows get the better of me.  I gave my embarrassment a silent talking-to and manoeuvred out of the space.  At the back of the store, the wall is lined with authors from A-Z.  I wouldn’t have a spotlight on the newest, but I might find some gems. I set my course for the rear. Half way on the dial between tortoise speed and hare speed.  I was veritably hurtling, turtle-style. The aisles in Whitcoulls do fit a scooter if it is going straight down the middle. Sadly, turning is not optional.  People on mobility devices clearly shouldn’t want to browse in bookstores. There are artfully arranged stacks of merchandise on the floor at the corners of all of the aisles.  The Little Yellow Digger-gift-boxed-set display met Scooter Number One as I attempted to round the corner. Scooter, 1, Diggers, 0.  A mother in the same aisle helped me by picking them up (thank you anonymous mother).

I spent half an hour in Whitcoulls. I looked for help no less than fifteen times.  Help to reach down titles I couldn’t reach, help with the infernal aisle corner displays. Help finding the poetry section.  I saw three more staff members. All three saw me and changed direction. No one offered to help. The crickets chirped.  When your eyes are not at the height of standing people, it is quite hard to get eye contact.  When you are down that low, even a wave can be lost behind a bookshelf. My hundred dollars hid deeper into my pocket. No party for it, today.

I lost my desire to purchase books from that store. I threw the scooter into reverse.  It has a really high pitched reversing beep.  It’s an incredibly annoying sound. I left it in reverse long enough for archy eyebrows girl to give me one last look. I accelerated past one last corner display.  I may have *cough* inadvertently disturbed its symmetry. I left the store.  In my imagination I looked a bit like a speedy hare, leaving a cloud of dust in my wake.  In truth, it was a less dramatic exit.  Think, slo-mo.  But the expression on my face remained steely resolute.  I patted my pocket. That’s a hundred bucks you don’t get today, Whitcoulls.  And then, I was a gone girl, too.

So my post about my birthday books is postponed.  …maybe there is a bookstore out there who wants my custom, even if I am not walking on two feet.

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PS:
I sent the people at Whitcoulls a link to my post as soon as it went up.  Very quickly Diane got back to me.  I am very grateful for such a timely response and so glad that the store will look into ways to improve customer service for people on mobility devices.  Thank you, Whitcoulls.
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This is what she wrote:
Screen Shot 2014-09-26 at 4.54.42 pmThanks for touching base and sharing your in store experience with us. It is disappointing that we have not been able to deliver the customer experience you, and every customer, deserves. There is nothing better than browsing books especially in the excitement of birthday present shopping. I will be passing this information onto our Store Manager to ensure they can look into this situation and how they can use this to improve their customer service.

In the meantime, I would love to extend a birthday present to you from Whitcoulls. If you are still interested in the Gone Girl Book, I would love to send you a copy along with a $20 Whitcoulls Gift Card that may enhance your birthday spending money. If you can send us your courier address and we will arrange to get this out to you.

Kindest regards,

Diane

 

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.

The Impatient Patient

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There is a lot of frustration happening in the world of Dysautonomia, in fact, in the worlds of all chronically ill patients.
For some, diagnosis is fast and a cause is identified, treatment begins.  Sometimes treatment is successful.
For others, for so many… diagnosis takes years.  People are often mis-diagnosed first with anxiety, depression, hysteria and all manner of strange conditions.  Until someone starts to put the puzzle together, piece by agonising piece.  Someone recognising that the pattern of symptoms is autonomic is usually the start of that process.  Sometimes, that someone is the patient themselves, forced into a position of applying their non-medical brain to medical journals.  It is a scary and difficult job, sifting through medical literature, looking for words you recognise, learning as you go.  But you have to.  Who else will take the time?  To whom else does your life matter enough that the research is worthwhile?

I don’t know why some doctors are excellent and others are not.  But I know what the experience of a good doctor is from a patient’s point of view.  A good doctor is prepared to listen.  They will ask you good, probing questions.  They are thorough, respectful and give you time to respond.  That’s important when your brain is foggy and your words don’t always step out in the correct order.  It requires patience toward the patient. I guess that is hard when the schedule is busy and they’ve been listening all day.  But a good doctor, even after years of practise, can still say “What if?” and “I don’t know, let me see what I can find out…”.  A good doctor is prepared to engage in the conversation with an open mind.

I’m sad today.  Sad because since I’ve been working on this blog, I have a much more personal realisation about the affect of Dysautonomia on the lives of people who have reached out to me.  Even here in New Zealand.  I have had messages from people, more than ever before.  Can you help me?  My doctor won’t help me.  I need information.  I need recognition.  I need support.  They are asking:
How can I make my doctors care about me?  Take notice? I am declining. My life matters.  Why don’t they care?

Like them, I too, am locked in a frustrating dance with a doctor who doesn’t seem to care. He is my main specialist and has taken over my case from someone who cared a lot. The contrast is painful.  When I am in his consulting room I can see his attention drift off, his thoughts elsewhere.  He often begins by saying things like “I see you have had an admission, but you are quite well now?”  The question mark is an afterthought.  I am supposed to say, ‘yes’ and go through the motions of the rest of the consultation so he can tick his boxes.  But I am not ‘quite well’.  My daily life difficulties are increasing all the time.  We are accommodating the changes the best way we can.  Navigating the path of progressive illness without guidance, lit only by the flame of our own frustration.  He has decided the best approach with me, is to “observe the progression“.  And because he has decided this, I must oblige.  I am powerless to suggest, enquire, wonder, report, relay, present, offer… anything further.  Because the doctor has decided.

But, Doctor.  This life I have.  I love it, I need it. Even broken and interrupted by illness, I want to be here.
It is valuable to me, Doctor, in your armchair.

I choose to fight for my family, for the love that pulses out past my illness and into every corner of their lives.  I choose to fight for the autonomic nerves that have not yet been damaged by this disease.  The longer you leave it, merely observing my progression, treating the symptoms, waiting, watching; the more my ganglia are picked off, one by one. 

And there it goes. Another day.  No other dollar.  I am not working, I am not teaching.  My work to do was worthy, wonderful work.   I had much to contribute, I like to believe I still will. 

And there.  Another day. My children.  Growing older, stepping out beyond yesterday and into a tomorrow I need to be part of. 

Another day; my husband.  Carrying burdens too heavy even for his broad shoulders.  Pushing on.  I want to help him more, be there for him, too. 

This life is valuable, doctor.  Do you see me? I am your impatient patient.  The one who would rather not be a patient at all.

Should you come into my home and observe my life, not just my disease progression, you might try to take some action.  You might begin to listen.  You might think us worthy of that much. You’d be welcome. 
Doctor, get up from that chair. Get down from that high horse.

Another day came around.
Another day with no more answers,
no direction, no help.

And another day came around,
and another patient wrote to me.
Can you help me? 
Can you help me find a pathway through?

Can you make them see,
Me?

Another day and I am counting
More ganglionic death within my frame.
Less function, more frustration.
And you, Doctor, barely know my name.

Another day, but are you counting?
do you record the way I do?
do you read the publications
scour the boards to read the news?

In another country,
I might be getting something done.
I might be making a kind of progress,
I might be a …’lucky’ one.

In another percentage band,
my life might take different course.
In another doctors hands,
my life might matter

as much as
yours.