International Travel for the Chronically Ill

A couple of years ago, we were told that my illness is progressive.  Although we had suspected, that knowledge had an immediate effect on the choices we were making. We became mindful about making memories.

Children don’t remember the things we necessarily want them to remember, and we know that the small moments of connectedness, the simple pleasures are really profound.  But when we recalled our own childhood memories, so many of the best were holiday memories.  We had been hunkering down, like most of our cohort. Trying to get that mortgage paid off, striving to get ourselves into a really secure financial position. We are pretty conservative people and my husband has a risk-averse approach to finances.  You know the sort…If we want to do work on the house, we save for it first.  So pushing the boat out and taking an overseas family holiday was something we had always seen as a big luxury, something we’d do ‘one day’.  But when that neurologist leaned in and said “do the things you want to do with your family while you are still mobile,” we listened.  We talked about the kinds of things we’d been putting off.  And we booked the holiday-of-a-lifetime.

It was all kinds of joy.  The planning was a beautiful distraction. The anticipation provided a daily dose of optimism mixed with excitement.  A holiday!  It took an enormous amount of planning.  There are so many things to think about when you are travelling sick.  Our four week trip to the States was a wonderful thing.  We have been living off those memories and sharing them together ever since.  Our album is already broken from over use, the kids adore looking through and playing ‘remember when’.  We have no regrets.  Even though so many aspects of the trip were really hard for me, physically, I would go back to those four weeks of family memory-making in a heart beat.  Magic.  That’s what it was.

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And it’s all been on my mind because we’re at it again.
We’re about to head off for a shorter trip, this time to the tropics.  A week on a tiny coral atoll.  It promises to be at least as fantastic as one of Enid’s adventures for The Famous Five (yes, our large family is down to five!).  Epic.  It will be a new thing for the kids and a chance for me to share with them something of what it was like to grow up in Papua New Guinea, not that we’re going back there… but close enough!  My mouth is watering at the prospect of green coconuts, white fish and guava.  I can hear the island music playing…!

Also epic is all the preparation.  In this instance we will be very far from medical help, so I am taking everything that might be needed.  I’m anxious about it from a health perspective, but so very excited from a family perspective.  Bring it on.  We need a holiday.  Bet you do, too.

So anyway, I thought it might be useful if I share eight main things I consider when planning an overseas holiday.  There are so many things extra things to to consider when you are ill, accommodations of the disability sort in addition to accommodations of the bed variety. And all that planning and preparation are worth it.  Making memories is worth every effort.

 

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Here are my tips: International Travel for the Chronically Ill.

Before you begin, give yourself a hefty amount of time to do all the planning.  Don’t book for next week!  It’s not worth the payback your body will put you through!  Plan it all way in advance, even if you don’t know how you’re going to be. It takes a long time to get it all together when you’re sick.

1Consider the destination carefully.  How will the climate and altitude work with your condition?  I’m not saying eliminate destinations based on climate; just choose with the knowledge of how these aspects could impact you.  For example, if you are taking heart medications, you need to know if altitude will compromise their effectiveness.  If you are travelling to extremely hot regions and have thermo-dysregulation, you’ll need some ways to counteract the heat and manage.

1(1)When booking your airline tickets, make sure you have flexible fares that can be changed if necessary.  It is impossible to know when you book whether you will be able to fly when the time comes.  So choose the fares carefully, checking the terms and conditions.  If you can stretch to better seats, do.  Look closely at the airline travel insurance exclusions for pre-existing conditions.  Choose a policy that will cover you for any medical assistance you might need while you are away from home.  If the generic airline insurance won’t cut it, shop around and find one that will.

1(2)While you are booking your flights, you’ll need to indicate if you need ‘meet and assist’.  This will usually prompt the airline to have you fill in a medical form.  Have your doctor fill this in and send it back to the airline.  I also get my doctor to write a generic letter explaining my in-flight liquid quantities (I have to carry extra fluids for long haul), medications and my need to mobilise and/or lie flat whenever possible.  I keep that tucked in with my passport in case it is needed on check in, during processing or inflight.  It’s also good to keep a copy of that approved airline medical form on you.  Remember that if you have mobility issues or implanted devices, you don’t need to queue for immigration.  Flag one of the officers and explain your situation.  They’re usually very happy to help.  The Meet-and-assist service is truly wonderful for ill passengers.  Someone will meet your flight, pop you into a wheelchair and whizz you through all the difficult bits.  If you struggle to stand for long or walk the distances of your average arrivals hall, it’s a godsend.  I don’t generally use a chair but on these occasions I never fail to feel grateful for their invention. It’s a wonderful, compassionate service.  It means you can keep the energy for something more memorable.  And that’s a win.

1(3)If you can, try to plan the flight aspects of your travel to suit your best times of day.  Incorporate rest days and nights between legs of the journey.  In my opinion it is a mistake to push through more than one long haul flight at a time. The benefits of getting some good sleep in between are immeasurable. For our big North American trip, we also mixed up the type of travel.  I find flying very difficult, so we incorporated a road trip as well, with lots of time to get from A to B.

1(4)Consider the types of attractions you’ll be going to.  Will there be standing required?  Walking?  If you are not using a chair, will you be able to manage?  Most attractions can provide you with really sound advice via email. I highly recommend contacting them ahead of time and booking mobility aides if necessary.  In particular, giant attractions like Disneyland need advance booking.  I was surprised to discover when we got there that my walking stick was not allowed to be used because it has a built in seat.  They let me have it when they saw my doctor’s explanation letter (see above) thank goodness I had it with me!  But if I had contacted them ahead of time that wouldn’t have been an issue.  Plan your itinerary to include a range of attractions, it is miserable if everything you are doing involves moving around when that is a challenge for you.  A mix of museums, tours, events, attractions and rest days is a really good idea.  I also planned time when my hubster could take the kids to do things so I could recover and rest.

1(5)Take all of your medications with you and every therapeutic aide that might possibly be needed.  More is more.  But don’t forget to take the original pharmacy label from the box or bottle to show customs.  They don’t like medications dispensed into pill boxes. If they can’t identify what drugs you are carrying you may have to dispose of them.  I do dispense and just cut the labels off the boxes and wrap them in a rubberband. They slide into my inflight toiletry bag.  Yes, I take all my medications on the plane.  All of them for the whole trip, because if bags are lost, my meds are not.

1(6)Documents: Along with your passports, itinerary, booking confirmations and the medical forms discussed above, you may need other information close to hand while you are away. A copy of your prescriptions might come in handy. Research where you are going and what medical services will be available. Record phone numbers and keep these with your travel documents.  It’s a good idea to record all the contact details for your doctors back home and write next to them the time differences from your destinations. You or your travelling companions may need to call them and it saves a lot of stress and expense trying to find their numbers from overseas. Keep these with your documents too.  I also google-translate into the language of my destination a brief description of my health problems and print that out.

1(7)Pack some easy to prepare food or snacks for your own needs.  This might not be important for all destinations. Many of us sickies have particular diet requirements.  For our big trip away, I packed some easy breakfast sachets that I knew I could tolerate and that were a cinch to prepare (add boiling water).  Your preference might be a nutrition shake or other standard item that you know works for you.  When you’re on the road, getting food in time for your medications can be a huge challenge.  Being prepared will ease the stress and make the day unfold in a much better way.

So, there are my tips. Writing them down makes me nostalgic for our last trip and really anxious about this one!  I feel so fortunate to be making this memory with my beautiful family. I promise to bring you back lots of photos and to get some writing done while I am there.   I wonder what writing will be prompted in that beautiful place?  Wish me luck. Wish you were coming along too!

Post Script:
Best laid plans and all… 
1(8)erm.   If you have a pacemaker, remember to take your pacemaker ID card with you.  I have never been asked for it before, but this time I was!  And it was at home in my bedside drawer!  Bahaha!  I had to show them my scar and let them feel the bump before they were satisfied that I wasn’t seeking a pat down just for the fun of it.  I can’t go through the metal detector gates with this little device on board.  I guess the ID card is true of all implants?  If you have one, take it with you!

Source

Do you have any tips?  Suggestions?  I’d love to add to the list, add your ideas to the comments below…

Destinations

This song by Paul Simon has been playing on a loop in my head today.  Sums it up nicely, it’s been a day of one step forward, two steps back.  I managed to get the dishwasher on, but the washing from three days ago is still on the sofa.  I am bone weary, still tearful.  My wee lad is home sick and I’ve been fighting my own twin challenges of nausea and fatigue.

 

There’s been more happening in the media about Kellie, but it hasn’t been loaded on to the website yet for online viewers, so I have been returning to the same page, hitting refresh, waiting to hear more.  Somehow it helps that people are talking about her. I want the conversations to carry on forever.  I want her name to be spoken. Not forgotten. Kellie van Meurs. Kellie van Meurs.  I want the echoes of her big vibrant personality to reverberate forever. It seems to matter more to me than it rationally should. She was important, I want to shout from my rooftop.  Kellie was here, scrawled across the skies.

While I waited and hit the refresh button, I scanned the internet for more of her. I looked through Kellie’s pinterest boards.  I don’t know why I keep going to the places she left her digital fingerprints.  Is it because she is there, in suspended animation?  Or because, for brief, betraying seconds I can pretend she is?  A conversation here, a comment there, a picture, a laugh, a song. And then something hits you in the guts.  Like this, from her ‘inspiration’ board.  A line from Cold Play’s ‘Fix You’.

 

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Source: www.danieldevoy.com

And two new rivers flow down the deltas of my cheeks.

 

 

I See You

 

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I found the baby photo albums this morning.  Of course… any excuse to stop…

I settled in to the sofa to spend some time reminiscing.  I always look at pictures from this time with surprise.  Like a spectator trying to understand the family I am seeing.  At the time I was barely functioning; so sleep deprived and anxious that my memories are a hazy fuzz.  But in the photos; that mother.  She looks so happy, so …together.  She is holding her babies, smiling and laughing. There are baby bath shots, feeding shots, solids, walking, play time and coffee group shots.  Family time and baking and washing folding and all the hallmark Mummy Activities.

But Mummy was acting.  I remember how it really was, inside my head.  I just wanted to cry, with as much feeling as my babies did.  Sometimes, I was scarily detached even from my own distress. Sometimes I just felt empty and dead inside, at a time when I knew my babies needed me to feel connected and certain.

Looking back I can see how it all happened as it did.  There was big stuff going on.  My own mother was fighting her battle with Ovarian cancer in the two years after my first baby was born.  I fought with her, desperate for her to stay with me.  But she passed away. Then I was fighting my own battle with grief in the years after my second baby was born.

I feel a deep sadness for that Mummy.  The one pretending to have it all together.  I wish I could go back in time and reassure her, tell her to take a good look at me now, and see that it will get better.  Maybe I could do some loads of washing for her and cook some dinners for her freezer.  I remember one of my friends did just that one day, when things were very dark.  She knocked on the door and shyly handed over a quiche. “Just in case you could do with an easy dinner” she said.  I lost it.  Cried then.  Cried in that embarrassing, gasping fashion.   Sobbed my sore mummy heart out.  Somehow she had seen through my ‘keeping it all together’ facade.  She saw me as I really was; scared, struggling and in need of gentle kindness.

So I was looking at these photos this morning, and one in particular really struck me.  It’s the moment after my daughter first met her little brother.  We are in the maternity hospital and she has been without me for the first night of her life.  She is giddily happy to see me; nervous about seeing him.  Her face is the picture of apprehension. She knows he is her special little brother, but she is afraid.  What does it mean?  Will Mummy and Daddy have enough love to go around?  Will the baby love her back?  Why does everything have to change?

She is about to turn three.  Her whole world is shifting on it’s axis.  She smiles when she gingerly touches the little pulsating triangle on his downy head.  And erupts into the most heartbreakingly overwhelmed sobs.  There just aren’t words to explain how she is feeling.  The bittersweet love-fear that comes with big life stuff.  She is lost.  In that moment, I put my Mummy arms around her and shush quietly into her hair.

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I am sure that I am a broken and useless Mumma, but this stuff, I get.  She needs me to see her.  I put her tiny brother into the bassinet and settle him in.  She sighs and settles back into my arms, safe in the warmth of knowing that I know.  I sing to her and tell her the story of when she was born.  A tiny little bundle, even smaller than her baby brother.  I tell her how excited we were that she was coming, and all the things I noticed about her. I skip the bit about my own terrors.  I talk about how much she loved to hold my finger and sleep close to her Daddy.  She asks me if she was a good baby and I kiss her forehead.  “You were my baby, and that was better than good” I skip the facts.  I tell her how clever she is, how creative and how big.  I tell her that she is already everything she needs to be to be a big sister.  She’ll be great.  I tell her it is okay to wish she wasn’t a sister sometimes, because in the end, the love will be bigger than the upsets.  She nods and falls asleep.

We all need someone to see us when things are overwhelming. To talk to us that way. And sadly, sometimes, that someone has to be ourselves.  Somewhere between those early baby years and now, I have discovered how to mother myself.  When I am lost and need to be seen, I make a point of encouraging myself.  Giving myself the kindnesses my own mother would give if she were here.  I give myself the freedom to let go and give the kids eggs on toast for tea.  To treat myself to a pedicure.  To tell myself I am fantastic, right to my own face in the mirror.  When I am being irrational and emotional, I let myself cry and yell and be a big fat baby.  I talk to myself like a mother would.  I see myself through the eyes of love and then, all things can be handled.
Maybe you need to be seen too.

I see you.

War. What is it Good For?

Absolutely nothing.

I rarely get a chance to watch the news these days.  When I do, what I see there fills me with such sadness and shame.  Are human beings really so far removed from one another that killing, hurting, and destroying each other is acceptable? Where have we gone wrong?

It makes me think of all the children I have ever taught.  Even the most damaged souls, kids who knew nothing but violence from the moment they were born… kids who had every reason to want to kick back at life, at anyone, for letting bad things happen to them. Every single one of the small humans I ever taught had an irrepressible need for laughter, for peace.  Structure and calm. Creative expression, acknowledgement, support. Every one of them responded to a positive approach.  If someone believed in them and their ability, they were confident to believe in themselves.  That was my job, as a grown up in their lives. My job to give them a calm, positive place to be happy, productive and learn.  To show them that they meant something to me.

In my first year of teaching, Nine-Eleven happened.  As I got ready for school that morning, I listened to my alarm clock radio with horror.  Things like the twin towers attack had occurred before in history, in times of war.  But in my lifetime, Nine-Eleven was the first time I was cognisant of a risk that our whole world might once again fall into war.  How naive of me …have we ever not been at war, somewhere on our planet?  This event seemed to reach the doorstep of the middle class west.  How privileged I have been to escape war.  How afraid I was, on that morning, that our world was about to descend into a war to end all wars.

As my class gathered that morning, there was a different kind of chatter on the mat. They had questions.  Some were afraid, some found it exciting, like a scene from an action movie or computer game.  Some were confused.  My multicultural class of children were a mix of the very quiet, the excitable and the belligerently opinionated, we had muslims, buddhists, christians, pagans and the non-religious too. So we sat down to talk about it.  First, I pulled out a book I have loved for a long time by Nikolai Popov.  It has no words. Just pictures.  It is simply titled:  Why?

 

Source: www.goodreads.com
Source: www.goodreads.com

The book explores the origins of conflict.  And it was the very seed of conflict that I wanted to reach with these kids.  The nub, the start, the absolute beginning.  I wanted them to come to a realisation about something very, very important.  So important that our world depends on it.  They were such smart kids.  We began to brainstorm all the things that might begin conflict between two individuals.  We talked about siblings, playground scuffles, when parents fight, gang violence, baddies versus goodies, countries, war.  But it all came back to individuals, in the end. To each child, who will one day be an adult. And this is what it all came down to:

“Conflict happens when I believe
I am more right than someone else”

 

These kids were 10 and 11 years old.  Similar in age to the boys killed on the beach in Gaza. I make the comparison because there are children caught up in a war over in the Middle East.  Children.  And the grown ups in their world are not providing them a calm and positive place to live.  They are too busy being more right than each other.  Bombing each other.  Destroying each other.  I don’t get in to the debate about who is right and who is wrong.  But I am sickened by the way people on facebook so happily ‘take sides’ in a war that is a long way from their cultural and political worlds.  And even further from their own children’s backyards.  If we take sides, we are believing ourselves to be ‘more right’ than others.  When will a dialogue begin about compromise, understanding, valuing human life?

I was struck by contrast this morning.  Two videos on facebook.  One posted by a Christian I know and respect.  One posted by an Agnostic I know and respect.  One assumes the Israelis ‘more right’ than the Palestinians, it is a video of the Israeli troops celebrating about going into battle.  The other reports on the human cost of the war, the staggering reality of the average age of Gaza’s population.  It is so hard to not make a judgement, based on those two clips alone, about who is ‘more right’.  But instead, I will focus on the thing that matters most.

I think about those children, on both sides of the walls.

Their families think they are more right.  They take their ‘right’ to bear arms against one another, and remove the right of their children to live in a world where we don’t shoot to solve an argument.  Where we make room for difference of opinion.  If my class of kids from every corner of the planet could get along and make music together, why the hell can’t the grown ups of this world?  Get over yourselves, big people.  Move over.  Live and let live.  Grow up.  Do you want peace?  Be peaceful. Stand down.  Show your children how we resolve conflict, lest you teach them how to maintain war.

My class, back then, tore paper into tiny little pieces and made an enormous peace rainbow for our classroom wall.  Every time we felt ‘more right’ than someone else, we’d look at that rainbow and remember:  all the people of many colours, gone from our world because of conflict.  And we’d extend a hand and try,
to understand each other.

 

Edwin Starr.
Lyrics.
“WAR”

War,
What is it good for?
Absolutely nothing
War, yeah
What is it good for?
Absolutely nothing
Say it again, yeah

War, good God
What is it good for?
Absolutely nothing
Listen to me

Oh, war, I despise
Because it means destruction
Of innocent lives

War means tears
To thousands of mothers eyes
When their sons go to fight
And lose their lives

War, it ain’t nothing
But a heartbreaker
War, friend only to the undertaker
War
It’s an enemy to all mankind
The point of war blows my mind
War has caused unrest
Within the younger generation
Induction then destruction
Who wants to die?

War, it ain’t nothing but a heartbreaker
War, it’s got one friend
That’s the undertaker
Oh, war, has shattered
Many a young mans dreams
Made him disabled, bitter and mean
Life is much to short and precious
To spend fighting wars these days
War can’t give life
It can only take it away

War, it ain’t nothing but a heartbreaker
War, friend only to the undertaker
Peace, love and understanding
Tell me, is there no place for them today
They say we must fight to keep our freedom
But Lord knows there’s got to be a better way

War, huh
Good God y’all
What is it good for
Stand up and shout it:
Nothing.

 

 

Doing My Bit…

Fundraising for a rare illness is a tough gig.  We don’t have marketing teams or big business sponsorship. There isn’t a Dysautonomia Awareness holiday, although October is unofficially our awareness month.  Down here in Australia and New Zealand, our numbers are quite small.  There are around 400 of us across Australia and New Zealand, that we know of. We do our bit any way we can.  For some of us that means raising awareness by typing our stories out onto the web.  Maybe we host cupcakes-for-a-cure sales or write letters or lobby government with regards to medications access and other related issues. 

My friend Michelle over at the hilarious Living With Bob blog has started up an online donation page to help raise funds for the Baker IDI institute in Australia.  They are conducting research specifically into disorders related to syncope (fainting).  Every Dysautonomiac has had to deal with that scary side of things at some time in our illness. The things they may find in their research are the closest thing to dysautonomia research in this part of the world.  It’s important that we help in any way we can.  But we are a small group of people and most of us are too sick to do fundraising runs, awareness feats worthy of media attention, or much of anything that is going to inspire people to reach into their pockets to raise money for research.  It’s a frustration that perpetuates the invisibility of illnesses like ours in the wider community.  We aren’t well enough to push for attention, but we need it.  So today, I’m letting my fingers do the talking.

Because Michelle has so valiantly taken on the task to raise money for research, and perhaps because she has been feeling too crap lately to get vertical, I felt like it was time we all pull together and lend some support to her fundraising efforts.  Here is a link to her fundraising page.  I will be coming up with some other ways to help Michelle raise money for Dysautonomia Awareness as we draw closer to Dysautonomia Awareness Month.  But for now, I thought I’d introduce you to her efforts.  Maybe you can help.  Maybe you know someone who could help?

Here she is, clicking her Dorothy heels for Dysautonomia.
https://give.everydayhero.com/au/clicking-my-heels-for-dysautonomia

Fall Seven, Get up Eight(7)

Is that Okay?


It’s nearly over, hubster reassures me.  Three weeks of school holidays probably sounds like three weeks of chilled out heaven to some of you.  Togetherness, fun times, laughter.  The picture postcard of happy children, frolicking through wintry activities, a break from the hum-drum.  The more relaxed mornings are lovely, that is certainly true.  Most holiday mornings my nine year old will get breakfast for her and my six year old.  The bench will be strewn with crumbs, butter smears and vegemite; but they’ve eaten.  She’ll bring me a cup of tea.  On a bad school holiday morning, it might be just bananas before lunchtime. He’ll be building more of his lego or mastering a video game, she’ll be perfecting a new loom band design or reading a book.  But I’ll just be here, in bed, feeling like this.  Dreading the day and the energy debt I will accrue.

I have great kids, they are self directed a lot of the time. They communicate well, they listen. They try hard to make good choices.  I am really, really fortunate to have these two.  Given a few cardboard boxes, sellotape and craft supplies, they’ll while away an afternoon with an elaborate construction project.  They like each other for the most part, then sometimes, like all siblings, they really don’t.  The niggles, the bickering and then the fighting begins, a battle for supremacy, a tussle over territory.  It is usually when I am least able to manage it too; ah, the beautiful timing of parenting.  And then, for all the time the cardboard boxes have afforded me, the payback will be the mess.  I try not to let mess get to me, but this is not the way I like to live. I am embarrassed when people drop by and see the leftover detritus, the last of my priorities, the end of my rope.

But I am there, right at the end of it.  Hanging on by a thread.  I am so tired my bones feel weak. I have my sunglasses on, in bed, because the light hurts my eyes, radiates into my head and down my neck, needles down into my feet and hands.  I had to get up in a rush this morning to deal with one of the most difficult aspects of my illness. But standing suddenly, lurching to the toilet before my meds were even taken.  Ugh, let’s just say, it’s been a morning.  The thought of getting upright again today slips in and out of the possible scenarios in my head.  I can’t grasp quite how I am going to make that happen. But I will.  I will, because, if I don’t; who will?  Hubster is away today working, his project is “going live” today.  He might be at work tomorrow, too. Our resident teenager is having a well earned sleep in, and it isn’t her job.  This job is mine.

And the fact I can’t escape is, that I may be at the end of my rope, the holidays may be nearly over, but this, this is not.  This is just how it is.  This battle will be mine for as long as that proverbial  piece of string. On Monday the kids will go back to school and I will begin, task by slow task, to put it all back in order around here. I will still face this nemesis every morning.  I will still pay the price every afternoon. I need to begin to pack for the longed-for trip away we’ve got coming up.  I should be excited about that, but the mountain in front of it makes me want to turn my back towards the sun, and run.  There is so much bending when you pack.  And every bend, every reach, every teeth gritted task is more than I can manage right now. I have a task that is bigger than my ability.  Excuse me, but that makes me want to cry.

A friend asked me the other day, if my illness is ever present, or something that niggles away in the background and flares up sometimes.  
My illness is my constant companion, my suffering silence, my belligerent burden.  
I cannot ignore it, for it will make me pay.  
I cannot cure it, it’s here to stay. 
I cannot endure it, but I do, anyway.
I can tough it out, and do, and be, and achieve and succeed.  I can plan and prepare and pace and push through.  I can persevere and find joy and be grateful and search for hope. I can keep gritting my teeth and smile, even laugh.
But sometimes I need to complain about it.

Is that okay?  Because it is not nearly over, it is still here, every day.

 

HELLO(3)

 

If I Had Words

…I would be using them.

But I don’t have any words for you today.
I know they will come back, I am just tired and in need of a big rest.
In the meantime, here is a beautiful cover version of the theme song from BABE.  This version is a cover by the lovely Dan Noguchi.  I think he did a great job. I love this song so much.

The melody is based on the Symphony No. 3 from Saint-Saens and was made into a pop song back in the seventies, before Farmer Hoggins sang it to Babe.

Wishing you all  a day, golden and new.

 

The Grief that does not speak…


“Give sorrow words; the grief that does not speak
knits up the o-er wrought heart and bids it break.”

― William Shakespeare, Macbeth

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There is no doubt in my mind that using words is therapeutic.  My blog has given me so much more than I have ever put into it.  I have met people through my blog that real life would never have introduced me to and they are all people I definitely was meant to meet.  Life is better by far for knowing them.  For knowing YOU.  I sit here in my ‘corner office’, tucked up in my bed, typing my heart out onto the internet, and people raise their hands and say “over here, Rach, me too!”.  I am heartened by the connections and community.  I am grateful for a place to explain the things that I find hard to fit into regular conversations.  I have growing optimism about my role in this life, why I am here, what it is I am to do.  Who I am, even.

Thank you so much for reading my words.

Tell me who you are, too? Many of you have stories of your own, words that have been waiting to be expressed.  Many of you have been waiting for the right time to write them.  This is your time. I would like to invite you to share some of your writing, here.  Poetry, stories, reflections, collected thoughts.  All types of writing welcome.  If you would like to share, my place is your place.  Gather your words and publish them in a comment below.

I can’t wait to read yours.

Let’s get our words together, lest the grief that does not speak knits up our o-er wrought hearts and bids them break.

Arohanui X

A Crazy Little Thing Called Hope


When my mother was dying, she thought God was going to heal her.  It was a crazy little thing called hope. She thought it because He’d promised her that in the scriptures that she’d religiously memorised and spoke aloud every day.  She was a woman of faith, and that meant that even though it didn’t seem like she was being healed, she believed it with every fibre of her being.  Her faith was so strong that on the day she was admitted to hospice, she asked me to take a ‘before’ shot.

“What do you mean?”  I asked, already concerned.
“A picture of me with this tumour, before God heals me and it is gone.  It will be important evidence for when I am telling people all about it”, she asserted.  Then she stood for the photograph, beside her last bed, her tiny frame almost overwhelmed by a giant tumour in her abdomen.  She maintained this kind of denial (it was the only way I could understand it, to call it that) for as long as she could.  She held on to it valiantly.  I was so horrified by it, and by the visitors who came in and prayed healing prayers. I was afraid that she would miss the opportunity to say the things she might want to say, and to hear the things we wanted to tell her, about how much we loved her, about our need for her.  In growing desperation, I spoke to the hospice counsellor.

“We’re not built for mortality,” she explained.  “Everything about the human condition is built around the need to survive.  It is our strongest instinct, our greatest drive.  How can one face one’s own death?  There isn’t a right way.  There is only the way that works for each individual.”
I went back into my Mum’s room and sat quietly beside her.  Memorising her hands, her fingernails,  the colouration of her skin.  She seemed to be asleep. I listened to each breath, each one painfully bought.  Something broke inside me.  I think it was my heart. I thought about her beautiful self, struggling against a reality she didn’t want.  I thought about how tired she must be, fighting for air, clinging to hope.  I didn’t want to wake her, so I cried my silent screams into the sheets of her bed and drowned my despair in tears that ran all the way to the sea. My Mummy was leaving me.

And where was her God? When she needed comfort, of all the times that her faithfulness should have been repaid with peace, where was hers? My heart welled up with compassion for her, as she gripped on to her last vestiges of hope. So I stopped trying to have the conversations of dying.  I let Mum say what she needed to say, when she could; so she said what she felt to say, not what I thought she should.  I read her Psalms when she cried out.  I held her hand and I slept beside her. I did all the things a good girl should, and then: she was just gone from my world.  Her hand no longer soft in mine.  Her heart no longer loving mine.  Just gone.

And now, my friend Kellie; also, gone.  So recently that our hearts and heads can’t take it in.  She wrote to me about hope many times in the months before her treatment.  She considered calling her blog about stem cell therapy “A Crazy Little Thing called Hope”.   These are her words about hope:
“…the whole hope thing is pretty integral to me as I was seriously losing hope. Maybe I’d even lost hope – don’t tell anyone!! But just having an inkling of hope made such a difference and it was so surprising how quickly the hope gathered momentum and how it then sort of manifested its own good luck”.
Then I found this little meme and sent it to her, but now I look at it and I wonder again, where was her God?   Kellie has gone too.  And she had so much hope.  But it didn’t keep her alive.

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And then, in this dark place of loss, deep in my remembrances of these two extraordinary women, I wonder, where has my own hope gone?  Has it evaporated?  I don’t feel hopeful. Will it return? What tricks of my mind will I find to keep me pushing forward, seeking help, searching for answers?  Is there something I can do to find it, or do I have to look for it, like a tiny dandelion seed floating on the breeze, passing by right in front of me at the perfect time.  Is hope that ephemeral?  My tired brain is weary of the measured and sane approach.

Kellie was right, it is a crazy little thing, hope.
But maybe it is all we can do.
Maybe it is all we really have.

Do you have hope?

 

Kellie van Meurs

I met her online, in a support group for people with Dysautonomia.  She asked me for help with her new blog and it was the beginning of a beautiful friendship.  We chatted over the internet regularly.  We were ‘bloggy buddies’ and ‘cyber-besties’.  In the space of only four months, we covered the sort of ground in friendships that usually takes years. I knew her.  But I never got the chance to meet her.  One day, we’d laugh, after Russia, she’d come to New Zealand, or I’d go to Brisbane; one day we’d have a drink and laugh about the ‘bad old days’.

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And then it was Friday night, Kellie and I were facebook chatting, making jokes and catching up on what was happening with her kids back home.  About how much they love their babysitter and how her husband was off on a well deserved boys night out.  She was missing her family, but getting closer to when she’d fly back home to be with them.  She signed off so she could go and Skype her kids.  I had been worried about her.  Since her stem cells had gone in, her posts and messages had become a lot quieter.  She was in isolation because her immune system was non-existent.  And then her numbers started going wrong.  She’d been having platelet infusions because she was at such a high risk for a haemorrhage.  She was very, very tired.  Busy, bubbly Kellie was struggling, but never found it easy to admit it.  It concerned her that her family would worry more.  She was toughing it out, Aussie-chick-style.  And some time between our last chat, and today, Kellie had a massive heart attack and lost her life.  Her life.  That whole, wonderful, beautiful person, suddenly gone.  And the hole she has left behind is too big to wrap words around, too large to define.  It will continue to widen.  We will fall into it, those who loved her, in our darkest moments of grief.  We’ll claw our way out, the way grievers do, pulled onward by the relentless demands of the living. And all that Kellie was, will remain with us.  It is the bittersweet burden we carry of the lost. It’s that terrible fact that we shoulder across every day we’re here without her.  She’s gone.

I sent her a message when I heard. I think my ability to believe that it’s true has flickered in and out like a bad transmission.  In my head, I have one word.  no.  It plays on repeat.  I’m calling it out to her.  No no no no no.  I hear her echoing my word back to me. No.  Just no.

My disbelieving heart tries to grapple with what it all means.  For her husband Mark, for their kids, Ash and Luc…
I don’t know if you will ever read this, but if you do, I want to confirm what you already know.  She loved you with fierce passion.  You are why she tried so hard.  You are what she was fighting for.  Life with you.  She had enough love in that heart of hers to fuel a nuclear explosion on a galactic scale.   To light up the whole universe.  You’ll carry her love in your hearts with you.  It is still there, enough to illuminate many lifetimes. I am so so sorry for your unfathomable loss.

I know I am only one of Kellie’s lucky friends.  Our friendship is new. The first time we met online, she’d just discovered she had the antibody for Stiff Person Syndrome.  In my typical fashion, I thought having a definitive diagnosis was a lucky break, it meant treatment.  But she started on IVIG straight away and continued to decline.  Her spirit almost broke, she nearly gave up.  But then she remembered something and a tiny little spark of hope began to light her outlook. You can read her brave post about that here.  She was going to Russia for stem cell therapy, then no, she was staying in Australia, then no, back to Russia again.  Her confidence was high, her can-do attitude carrying her through all the challenges of her preparation. She wrote to me about how she was going to be okay. About how she hoped she would never take being healthy for granted when she was well again. And we all believed that she was coming home.  That she, if anyone, could beat the odds and make it.  That she’d be laughing in the face of adversity and raising a glass of champers to life itself.

No.  No no no no. No.  Oh Kellie. Your beautiful heart didn’t make it through.  And our hearts are aching with all the tears you’ll never shed, for all the hugs you were yet to have, for your homecoming that isn’t what it should have been.  We ache for your family, for your much loved kids and husband, Mark.  We long for a world where things like this don’t happen.  We want to be back at Friday, when you were still here with us.

Before you went to Russia, I sent you a cyber-bestie t-shirt to match my own.  “Fall seven, get up eight” it read across the front.  I thought it was the perfect slogan for your positive, ‘She’ll-be-right’ chutzpah.  Oh Kellie, I wish you had made it to the eighth.

I will miss you my friend.   X

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Kellie van Meurs posted this on her facebook page while she was in Russia.  I so wish the choice was still hers.
Rest now beautiful brave girl.

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If you are able to donate to the fund to bring Kellie’s body home from Russia, here is the link to the fund.  Please help if you can. X