Her Hands

I’m preparing for a visit from my sister. She lives across the other side of the country and she and I are both finding that as we get older, we are softer to one another. More compassionate about the challenges we face, more cognisant of the similarities than all the differences. I find myself seeing my sister through our mother’s eyes. With a special kind of maternal love and tenderness; a kindness that evaded me in my younger years.  I think we recognise that without our mother, we are the only ones who can bring Mum’s loveliness back. By being her hands, her heart… for each other.

At the local grocer’s, I was looking at the fresh cut flowers, mentally relishing the names of all the flowers Mum loved. I saw the Alstromarias, the Roses (blush pink for the wedding dress she sewed my sister) and the Leukodendrons.  I could almost hear my mother’s voice, patiently showing me how to trim the stems, why we do; chatting as she arranged stems lovingly in a vase. She loved flowers.  I bought the pink roses, the pink and plum-toned Alstromarias she favoured in her garden (they last such a long time, she would say… a brilliant cut flower) and the green and deep burgundy Leukodendrons.  I bought them on behalf of my Mumma, a tribute of her love for my sister.

Earlier, at the hospital pharmacy, my eye was drawn to all the things that Trissy would love. I chose some sugar free jubes, smiling at the memory of how Mum used to squash jubes and marshmallows between thumb and forefinger before popping them into her mouth with a flourish. I chose some jelly beans, because Mum liked them too, she kept them in her handbag and would sneak a few in at an opportune moment. I chose some soap that smelled of Guava, a strong childhood memory portal, that scent.

I feel my Mumma close to me today, as I get ready to see her other girl. My sister and I will chat all weekend about her, about life and love and motherhood and all-the-things.  I look at my hands, looking more and more like I remember hers. The same lines. The same textures and contours. I like that. Her hands, my hands.

Just for a while this weekend; the strength of longing of two girls for their Mum will be satiated by some time spent with someone who understands. Like no other person could.

In the presence of what remains. Each other; sisters, daughters.

Mum’s hands, Mum’s heart.

What would you do?

I’ve been doing that thing patients do.


I’ve been doing it impatiently, because I’m like that. I goes like this. I’ll be going through my day and the thought occurs, as it regularly does:

How can I keep going like this?

Which always leads to the next thought…

Am I doing enough about it?

What would you do_(1)Well, I’ve been fighting for years to find someone who will investigate the cause of my Dysautonomia and consider treatment.  Last year, I found two great immunologists. Which brings me to the waiting part.  It’s like a circle of impotent wishing.  Drives me a bit bonkers, but that is the price you pay for not paying a price when it comes to medical care. We have this free medical system here and I am so grateful for it (because by the time I got around to organising Private Health Insurance, I was already deemed ‘uninsurable’).  If I’d been living somewhere else (like the US), my situation would be dire.

So I’ve been waiting (albeit impatiently!) for the immunologists to get back to me about the possibility of IVIG.  At the end of last year I had the tests they were hoping would offer a compelling base line. But the tests didn’t provide the strong results we hoped for.  It is one of the most incredibly frustrating features of Dysautonomia, that our tests don’t always catch our bodies behaving the way they do.

My tilt table test was ‘unremarkable’. Instead of my trademark drop in blood pressure and a heart rate that drops through the floor, my blood pressure was high.  The entire duration of the test was a painful torture for me, due to the pain in my pelvis and hip when I am weight bearing. I suspect the pain brought my blood pressure up, buoying my system into a false negative TTT.  But you don’t get a ‘do-over’, and even if I could, the pain issues I am having are still being explored, we know it isn’t structural; it is possibly neuropathic.  Another needle in the haystack.  Either way, it’s not going away overnight. By contrast, the gastric emptying study showed “an abnormal pattern of gastric emptying and small bowel transit compatible with (her) known Dysautonomia”.

And I am only guessing… but I think it is clear that more significant results would have made for a different outcome.  Fortunately, and sometimes unfortunately, the medical system functions on objective data. That’s just the nature of the science.

I had a phone call last night from one of the Immunology outpatient doctors at Auckland Hospital. He was a lovely person who was very thorough with all the details.  He outlined the plan for me. I will start a six month course of methylprednisolone pulse infusions in February.  If I respond well to the steroids, this will give us a better indication of whether or not I have an autoimmune aetiology.  That just means that we will try a ‘suck it and see’ approach.  If this treatment works for me, it points towards my problems having an autoimmune cause.  It has been tricky to establish this point because the tests I have had done have not shown auto-antibodies for the usual culprits.  The main one, the Acetylcholine Receptor antibody, is negative.  According to Dr Vernino, 50% of his patients with presentations similar to mine, are sero-negative.  That’s like one in two. The flip of a coin. That’s why I haven’t been able to just sit with a doctor response of ‘it’s not auto-immune’.  I guess I need proof that it is not, just as much as proof that it is, before I can put that theory to bed.

I am also desperately attached to the idea that my problems might be immune mediated.  I prefer this possibility to many, despite the fact that treatment is not without risks.  I prefer it because it actually has a treatment pathway.  That’s a hope-inducing fact. Apart from my pacemaker, I’ve been languishing in the progressive no-mans-land of Dysautonomia, without treatment, for five years.  My symptoms are ‘managed’ (ha!) with a range of medications.  But none of that is addressing the elusive cause.

If something was wrong with you, if it changed your life and had an impact on your family… would you be able to sit back and accept the line; ‘We don’t know the cause/it is too hard to find the cause/ just accept that you have this thing we don’t understand’?  Well, I can’t. I’d rather go through the frustrations and exhaustion of searching for answers than just accept the ‘We don’t know’ line.

And maybe that is a defect in my personality. Or maybe it is a strength.  Either way, it doesn’t feel like a choice to me. I welcome the opportunity to try methylprednisolone.  It is the first proactive thing that has happened for my condition in five years. And if it doesn’t work?  I really don’t know what is next. If anything.

Maybe that is when I have to look at accepting some things. And that makes me want to drop to the floor in a full tanty. So I’m not going to think about that unless I have to.  Is it wrong to search and search for a cause in the hope of arresting the nerve damage?  I’ve already seen the ways this has affected my body.  I don’t need an imagination, or the facts, to see where it is headed.  If I can find something that will halt the slide, I feel like I should throw everything into that search.  Isn’t it what most women would do?  It’s not just about fixing this for me, it is about finding the best way through the maze for me and for all the people in my world.  It’s not self-indulgent to think they need me.  They do.

What would you do?

Sliding Scale

I’m a kid again, clinging on to one of those tall steel slides at the local playground. I’ve been working my way up the slide from the bottom; hand over hand, feet slipping.  My grip is slick with the strain. I am so close to the platform that can see the wood grained ends of the planks, right at my eye level.  I shift my gaze to the macro view of peeling paint on the iron frame. Fix my sight, right there. So close! My shaking arms are holding my weight but I need to let go to reach the edge! 

I lunge for it and lose my grip, clutching wildly for the sides as I slip backwards, defeated. I  land unceremoniously on my backside in the puddle at the bottom of the slide.  It was all for nothing. I hear laughter as I move to stand.
“Never mind, you’ll make it when you’re bigger” my sister says. I am embarrassed and inadequate. I glare at that slide and the nasty kids over on the swings and stomp off to the bench.  Who needs to make it to the top anyway?   Stupid slide.



I have a to-do list for today.  Nothing odd about that, I’ve got a normal first world obsession with lists and accomplishments.  Like many women, looking at their lists this morning, I look at mine and think ‘I can’t do it, I haven’t a hope of getting through that list’.  A wisp of a dream image ghosts across my mind. Sheer slippery metal glinting across my subconcious.  I know that I do want to make it to the end of that list.  Very badly.  I want to feel what it is like again to achieve something.  To stand on the platform, King of my Castle.

There are three things on it.

Two are online banking tasks.
One requires getting up, getting dressed, going to the hospital and seeing my General Physician for our regular check up.

And I recognise, that the girl I used to be would have chewed through that list in no time. Bam. 
Not anymore.  It seems like my lists are getting shorter and my efforts to achieve them are bigger than before.  It’s a sliding scale.  I have reduced my expectations about how far I can walk, about how much I can be involved in school, about work, about social gatherings, about mothering, being a wife, a homemaker, an do-er.  I even modify my view of what ‘feeling good’ should feel like.  I make my ‘normal’ from the abnormal. I shrink my expectations of what I should achieve in a day, yet I never make it to the top of my expectations.  How small must they be?  And why do they seem bigger than before, even though I keep paring them back?



Source:  Andersen Layman


I’m at the bottom of that slide, looking up.  The ground I am standing on is eroding.  If I don’t jump soon, the slide will be too far away for me to even lunge on to it. I call out for my sister.  “Help me!” 
I can’t see her.  The playground is empty.  The slide looms above me, and I am a tiny thing, an ant. I haven’t a hope of getting up that slide.  I sit down and let the earth take me away in a rivulet torrent of rain and silt. I am tossed in the miniature rapids, growing smaller with each tumble.  Until at last, I am a speck of dust.  The sun beats warm down on my back.  And I, just am.
Sometimes, it is all I can be.

I Get By



I’m in the fast lane on State Highway 1, but I’m riding a vespa.  Trucks scream past me, massive utes and vans blare their horns.  People yell out their windows and spew their exhaust fumes into my face, a passing hand flicks a cigarette butt into the jetstream.  I’m cowering in my seat, exposed and afraid.  It’s too fast, I need to pull over. I turn to see what is coming up the inside lane, trying to judge the gap and make my move.  But the traffic barrels past, travelling at twice my speed, shaking me to the last rusty rivet. My motor sputters.

Like any one charged with the care of a family, my hands and heart are full. The ordinary demands of everyone’s schedules, housework, managing the meals (and the biggest task: preventing the wholesale character destruction of my brood). Well, it can be overwhelming.  Add to that; a relative in hospital, a sister come to stay for for a few weeks, an aunty in town for a flying visit, a brother-in-law popping in to drop off some long distance baking from my lovely sis and a birthday for one of our kids.  I know it is just chance that so much has happened all in one week, but that’s how it has been.  And I’m not too proud to admit despite the loveliness of all that family time, it’s been a wee bit much for me. Read.  Too much.

This morning I woke to find the Hubster in the throes of man-flu.  It’s actually tricky to be a half decent nurse when you are feeling like crap yourself.  I tried to shake it off but I was afflicted with acute sympathy deficit. I felt like saying “drink a cup of concrete and harden up!”.  Which is awful to admit in black and white glyphs.  Makes me feel like a horrible person. But if you too have a chronic illness, this will be a familiar feeling for you.  In a perfect world, he’d never get sick unless I am on form.  Welcome to status imperfectus.

Within five minutes of wrestling some sweetness into my morning monosyllables, it occurred to me that the birthday cake must be baked.  Because.  If not now, then when?  The days tasks scanned in front of my mind’s eye.  A rolodex of prioritised procedures and diarised doings. I lurched into the day. About twenty minutes into cake bake time, my friend Flo rang.  She’s a good sort that girl.  I don’t ever have to pretend with her, so there was no breezy “MornING!” after I hit the green button.  More of a strangulated gargle. 
“I’m on my way”
she said.

Vacuum.  Dishes.  Table.  Mess.  Flo’s magic wand.  She keeps up a steady stream of chat while she bustles about my kitchen, deftly putting things away into the illogical homes she knows so well. She is canvassing me for my list of to-do’s.  Checking to see if there is any outstanding purge-material that needs expunging while she’s at it.  My sister arrives and makes us all cuppas; we form a plan.  It is lofty.  Do the shop.  Post a parcel.  Fix the phone.  I’m already daunted, because more than one task will usually best me.  She decides she’d better drive.  I’m grateful.  My vespa’s not quite up to it.  This engine’s seen better days.

We are half way up that mountain of tasks when I have a spill.  An autonomic crisis.  My heart is racing but my body can’t regulate the internal hike in temperature.  My vision shrinks to a small space, caught somewhere between each heartbeat and under each laboured breath.  I can’t.  I am stopped. Panic rises and I realise my legs are not going to be doing a proper propulsion for the dash back to the car.

Flo takes charge.  She grabs my list and does my shop.  Thank goodness for Flo, we need that stuff for the birthday dinner.  She makes it happen. She props me up on a trolley and bustles us all up the travelator and back to the comfort of the car. Cold air on.  Vomit bags located. Home. Bed.  I hear Flo and my sister in the kitchen.  I smell dinner, she’s advance prepping and getting my sister up to speed.  They ice the cake.  I close my eyes.  Relieved, conflicted, awed.

The roadside assist vehicle pulls up alongside.  My vespa is winched on to the tray and I am invited into the cab.  I make it to my destination.  But only because.

I get by with a little help from my friends.