Marcia Russell

Some 20 years ago, I picked up the phone extension in the woolshed office and the person on the other end introduced herself as Marcia Russell.  I knew I knew that name from somewhere; surely this was the editor of “Thursday” magazine.  But why was she ringing me?  “I have a daughter”, she said, “who was recently diagnosed as having Prader-Willi syndrome by the mother of another girl with PWS, standing at the counter of a shop in town.  I just need to talk.”  A good hour later, I felt as though I’d found a kindred spirit.  Although Kate was a few years older than my daughter, Francie, what Marcia and Tom had gone through rang so many bells that it could have been orchestrated.   

This was the beginning of a long friendship, founded on PWS, but built by each of us into a strong relationship.  I have always felt lucky to know Marcia – for a start, she was a strong role model for all of us growing up in the 60s; her vibrancy, great sense of humour, her verbal skill, her ability to quickly grasp a situation, to sort the wheat from the chaff, is a rare find.  It wasn’t long before I asked her if she would be part of the PWS Association that I was struggling to form.  So many parents whose children had PWS were simply unable to commit to anything else but trying to grapple with their own situation.  But Marcia had enough energy and drive to do both and for many years she was a strong member of the Association’s Board.  She knew and understood the limitations of the syndrome, the difficulties faced by parents and families, the issues in confronting disbelieving professionals, and was able to educate and inform and support others.   She, and Tom, attended conferences, met with, and also hosted specialists of the syndrome

When Kate went to  Salisbury School for Girls in Richmond, Nelson, Marcia took a seat on the board and became Chair.  Her ability to lead the board was exemplary and she guided Salisbury through some difficult times.  I know this from firsthand experience as I also joined the board as our daughters progressed their way through the school. 

Marcia’s loyalty as a friend could never be doubted.  Her loyalty to our New Zealand PW Association was always strong and she brought wisdom, wit, and compassion to her job.   In those days when I was often struggling to run the Association, I could always rely on her to hear me out, offer wise counsel and give support.   I know others have found the same. 

We shared some good times over a few glasses of wine. Laughter and tears of mirth and despair.  

Marcia died on 1 December, 2012.   I shall miss her greatly.

On becoming a grandparent

I have a grandson!  Our first grandchild!  There is great joy in that statement; hard to describe really, as it is quite different from the joy of having one's first child.  There is a sense of great satisfaction in knowing that you have helped carry on the line, as it were, you are continuing the will of the world, to procreate.

Some years ago, I recognised in myself a sense of emptiness.  Not the 'empty nest' syndrome, as that had occurred many years before when all three children had grown up and left home.  No, it was another sense of emptiness and I could not identify it until, at last, I realised it was a real deep need to know that there would be children from my children.  Weird.  Never thought about it before, never really worried or wondered, but here it was, presenting itself in a very physical way - a hollow that needed to be filled.

So, on 1st October, a baby son was born to my firstborn daughter.  The emptiness had gone - filled by new life.  The sweetest baby imaginable.  Everyone says that of their own - so it must be true.  We travelled to Australia to visit the new little family.  To wonder at the new life.  To watch him breathe, hear him cry, marvel at his perfection!

Now, he is smiling.  I can't wait to watch this child grow!

Kneed it?

I think I am my own worst enemy.  After having my hip done in July this year, I went back for further punishment in the form of a knee replacement.  On the opposite side to the hip.  My God.  I have never known so much agony and pain as in the first two weeks after the operation.  There was no escaping it - nowhere to hide, to curl up, to ignore the pain.  Sleep was non-existent, and tiredness affected the healing process as well. Tears were never far away.

I gathered around me whispers and threads of advice.  Someone here, with a suggestion of arnica creme to massage into the bruised leg; someone there with the thought of arnica drops to be taken orally for bone healing.  Another clue in the type of drugs I was taking (opiates) that it was ok to change them.  (Oh, they were wicked - deadening the mind, not the pain.)  Another whisper of sleeping pills - ok to take a whole one each night until you can sleep without them. Someone else with the valued knowledge of what a tubular bandage could do to help support the leg and dissipate the pain a little.  Finally, an 'ice sleeve' that wraps around the knee and fills by vacuum method with ice water.  The chill of the ice kind of overwhelmed the pain of the knee and, by concentrating on the coldness, I could overcome the pain and even sleep. Once the stitches came out and the leg stopped looking like a rolled and tied lump of meat, stretching and extending became a little easier.

Then, on day 16, a kind of breakthrough - the bruising diminished and along with that, almost overnight, went at least 60% of the pain.  I didn't dare say anything for two days, just in case I was wrong and pain was simply waiting around the corner.  But I think it is true - the bruising and having to work through the damaged muscles was causing more pain than anything else.  Did the arnica work its miracle?  yes, I think so!  To be through that pain barrier and on the other side is incredibly rewarding.  So is sunshine, and so is laughter.  I have my sister staying with me and together we can work up quite a level of childish hysteria at past things forgotten, but still hilarious.  Laughter at that level where you can barely draw breath, is so cleansing and makes you feel really happy.

There are more joints to go.  I know.  I've inherited bad joints - I have only to think of my little old grandmother, who died at the ripe old age of 93, and her bandy little legs which looked as though they were set at 45 degree angles, to even guess at the grinding pain she must have had when walking.  Same as my father.  But operations and replacement joints were not an option then as they are now.  So, I am lucky.  In pain, but very lucky!

After Sales Care

The best thing to do, according to everyone Who Knows, is to get back swimming.  This is the best after sales care for the hip, or knee or any sort of operation it would seem.  There are two things I hate about this kind of exercise:  one, the need to dry off and get into clothes in a very small cubicle without getting feet wet, clothes wet, or dropping the towel - and the mere fact of getting oneself dry properly is impossible.  The second thing I hate is the chlorine.  I hate the smell of it, and I hate the prickly feeling it gives the skin after bathing in it.

However, I love the freedom of water, the fact that exercise is not weight-bearing, and the wonderful thought that if I fell over, I would be entirely supported.  So I paid my ticket and took my chances with the aqua fitness classes.  I'd already done these before the hip replacement, so knew what I was in for.  I can cope with these, particularly if I can take a sneaky rest during the class.  So back I went.  First up was a class by Tarnz.  Tarnz is super fit.  As is Tania - not to be confused with Tarnz.  Two different women, but both look very similar.  Fit as.  Slight, brown-skinned, black hair, and with a wonderful ability to cheer you on.

We're mostly baby-boomers, especially the class for Aqua Senior which has different music - all the sort of 70's and 80's stuff that we can apparently rock on to.  And we do, many of us singing along before gulping a mouthful of the chlorinated aqua stuff or going under.  Many of us know others in the class and many of us wish we didn't have to meet others under these often undignified circumstances.  But there we are; in the same boat, as it were.

"Awesome!" is the word most frequently used by these lithe, super-fit instructors.  Not many people tell me I'm awesome, or give me so much praise for doing so little, or indeed clap me after I've finished.  "Awesome!" I hear, as I push my weary way through the water, legs hoisted up one after another, or rocketed from side to side.  I lift my chin a little - hey!  I'm awesome!  I'm awesome as I sit astride the 'noodle' and vainly try to scoot down the length of the pool with knees in sitting position.  I'm awesome as the noodle is swung two and fro under the water making my arms weak with endeavour.  I'm awesome as I scoot backwards down the length of the pool, tripping over myself in my haste not to be last.  It's quite nice to be told I'm awesome after all these years - quite a compliment, really.

I'll take it!

To sleep, perchance to dream

Right now, I would love a brandy and ginger.  I can smell it and taste it - that wonderful gingery taste with the depth of brandy - smoky, deep, pleasurable - and the effervescent bubbles of the gingerale.  To go with that, I would like some thin ginger biscuits.  Wafer thin, crisp, almost peppery.

It's 2.30am and I can't sleep.  It's impossible having to lie on one's back for 6 weeks while the hip heals.  Pillows stacked high, sloping gently down like a ski slope so that my back rests in an almost upright position. Sleeping like this can only be done in two-hour snatches, if you're lucky.  Then the desire to turn over becomes unbearable.  The pillow, wedged between the knees is there to stop all that.  I've managed four weeks out of the six, but each night is like an endurance test.  I keep my laptop by my bed, along with my e-reader, and my cellphone.  The phone was there originally so that if I needed something when I was too weak to get out of bed without help, I could phone.  Theoretically.  The one time I tried that system, everyone slept through.  However, I don't feel I could use it now for a brandy and ginger, and get away with it somehow.

My back loathes the pressure put on it - whether that's something that has built up during the day as I lunge about on crutches, madly practising my walking skills up and down the steep drive-way and round and round the house, or whether it's just a pressure point from lying awkwardly, I don't know, but it is protesting.  My whole body protests, particularly the bladder.  It's like some sort of payback time.  During the day, bladder is well-behaved and acts normal.  Come the night and it demands attention every hour.  So the struggle to get out of bed, find slippers, don't bend down, don't twist, don't turn on healing leg, find crutch, get to bathroom, etc etc is a 'mare.  Three, four times a night.

By the time I get to sleep - waiting out the non-sleeping hours til the requisite time allowed to take next lot of painkillers - it's dawn and the magpies are starting their chorus out on the lawn.  It's my cue to fall asleep before the rest of the household gets up and the dog comes tearing along to jump on the bed.

I looked up quotes for sleep, only knowing one myself:  "Sleep that knits up the ravelled sleeve of care" which I have always liked (Shakespeare), he goes on:
"The death of each day's life, sore labour's bath
Balm of hurt minds, great nature's second course
Chief nourisher in life's feast"

Which is a wonderful way to look at sleep - as the second course in life's great feast.  Day/Night.  Awake/Asleep.

But right now, I see sleep in a crystal goblet of brandy and ginger.  How can I magic that up?

Songs my mother sang to me

I remember the songs my mother used to sing to me when I was small.  There was one called, "If I had a golden umbrella",

"If I had a golden umbrella
With the sunshine on the inside
And a rainbow on the outside,
If I had a golden umbrella
What a wonderful world it would be"

I desperately wanted a golden umbrella.  I would pretend I had one, exactly the same as in the song.  I would walk up and down The Terrace practising being a grown-up with my beautiful golden umbrella.

There was another song which I loved to join in.  It was called Lord Randall.  It was a mother asking her son, Lord Randall, where had he been to?  His answer was that he'd been to dine with his sweetheart who'd served him eels in broth and after every question his mother continued to ask him, he would say to her, "make my bed soon, for I'm sick in the head, and fain would lay doon".  Well, the mother kept on asking her "handsome young son" what he was going to leave his mother, should he die.  He promised her all his gold and silver and begged her to make his bed soon as he was sick in the head and fain would lay doon.  But, no, the mother droned on, question after question, till she finally asked him what he would leave his true love (should he die), and he answered rather coarsely and roughly, "a rope from hell to hang her".  Which was my favourite line.  I would join in loudly with that last chorus, and would often chant it to myself in the full realisation that it was a real and proper swear word and I was allowed to say it, if I sang it.  I would practise it often.

My grandfather would also sing to us.  We would stay with them at least twice if not three times a year and my favourite thing was to go into Nan and Wattie's room in the morning, fetch Wattie his teeth in a glass of water on the dressing table, scramble into bed with him and listen to his singing.  His two favourite songs were "Two little girls in blue" and Gunga Din.

Two little girls in blue was a rather sad song with a chorus that went like this:

Two little girls in blue, lad,
Two little girls in blue.
They were two sisters, we were two brothers,
And learned to love the two;
And one little girl in blue, lad,
Who won your father's heart,
Became your mother, I married the other,
But now we have drifted apart.

I was too young to understand the complications of love at that stage, but I did like the line that went "one was your mother, I married the other, and now we've drifted apart".

Gunga Din was an all together different character.  This was a lengthy poem, rather than a song.  All about a soldier in the war who had a manservant named Gunga Din who was much berated by the troops - the poem is rather horrifying to read today - and was often beaten and flayed by the white man.  But when the soldier was shot and dying and asked with his last breath for some water, Gunga Din gave him what he had - a cup of green, nasty dirty water, and carried him to safety.  He was shot doing this heroic thing for the white man who at last admitted "You're a better man than I, Gunga Din".

My grandfather had another favourite which was also a racist song, but this time about a little black boy whose mother told him: "Now honey, you go outside and play, don't you mind what the white chile do, go outside and play just as much as you please, but stay in your own backyard. "


"Now honey, you stay in your own back yard,
Don't mind what the white child do;
What do you think they're gonna give
A black little child like you?
So stay on this side of the high board fence
And honey don't cry so hard.
Go out and a play, just as much as you please,
But stay in your own back yard."

It felt safe when you were sung to.

Hip hop op

Two weeks ago I had a hip replacement operation.  When I came to, I thought I was lying on the beach which, come to think of it, is lucky I wasn't.  I remember a fair amount of pain, and being told I was able to self-medicate with morphine whenever I needed it.  Since I still thought I might be on this beach, I didn't really take any notice of that instruction.  Why would you?

As soon as I realised those around me weren't in swimming togs, but rather, were nurses, I took more interest in the morphine.  This was drip-fed directly to the vein and controlled by a small pressure pump which, when triggered, released a restricted amount of the drug.  'Well', I thought, 'may as well try it if it's going and legitimate.'  One quick pump and my limbs immediately felt as though they were paralysed.  Well, if not paralysed, struck by intense pins and needles.  That's when I took off.  Nothing made sense any more, just a rather disjointed feeling of not being with it at all.  Sort of like the moment when you try to drag yourself awake but keep slipping back to sleep and into a continuous stream of consciousness.  I kept trying to tell the nurses they were angels and no one else could have the personality to do their job.  Yep.  I was ridiculous.  Would not stop contributing to the 'I love Nurses, who do you love?' club.  I was surprised when they left me to it.

After a bit, and when I'd stopped making a fool of myself about the nursing staff, and stopped crying, I figured the morphine business was a little too overpowering for a sensible, if ageing, baby boomer like myself.  After that, I just relied on the heavier pain-killers that came around whenever I seemed to need them, in a tiny little plastic cup.  Do you know what?  Even these tiny little plastic cups were added up and calculated into the final medical bill that arrived in the post shortly after I'd been discharged.  Every single item down to the last swab, was meticulously accounted for which now makes me understand the comment from one of the nurses after I'd apologised for leaving half my lunch, "it doesn't matter as you're paying for it anyway" or words to that effect.

What I'd done was get ahead of myself when I realised the daily menu covered far more than just jelly and ice-cream, and I'd ticked several of the boxes with great glee and anticipation.  What arrived that particular afternoon for lunch was a feast that would have kept a village in Biafra happy for a fortnight.  Of course I couldn't eat it.  In fact, even now, the thought of egg and ham club sandwiches with white bread and lettuce, sends a shudder of nausea through my body.  What I did like best though, was that first night's meal after the op, which had the most delicious sticky date pudding. All the food on that plate was wonderful and for the first time in my life, I actually ate slowly, savouring each mouthful.  I asked the nurse whether I could have the remainder of the sticky date pudding for breakfast, but I think she thought I was joking.  She later was kind enough to respond to my request for something for nausea, with an immediate feed-in to my vein.  Thankfully, it worked, as I had no intention of releasing that sumptuous first meal.

My stay in hospital cost more than a stay in a four star hotel.  Mind you, I doubt very much you'd get quite so much support in a four star hotel during the night when you were desperate for a pee.  A ring on the bell might have brought room service, but I imagine a further request to help one to the lavvy might have been turned down out of hand.  You see, once the nurse had removed that wonderful catheter which gave one complete freedom from having to pee - and guaranteed a dry bed into the bargain - I had to go through a huge procedure to get to the loo.  First came the ringing of the bell which brought the nurse.  Then a slow manoeuvring to sit position, swing both legs together (gripping a pillow between the knees) floorwards, followed by the adjustment of crutches and a shuffling to bathroom, thankfully ensuite.  Then a careful manipulation of tiny turning manoeuvres until nearly seated.  Finally a quick whip-up of nighty, a lowering of bum, and then, relief.  But the infuriating thing was that this happened nearly every half-hour.  Probably due to the enormous amount of liquid pumped into me via the entry point on the back of my hand.

It's a shame, in a way, that the last couple of days of my expensive stay in this four-star hospital was taken up with the desperate urge to pee, which needed to be calculated according to the amount of time it took to get through the entire procedure, but that's what happens, I guess.

After four days, I'd covered the menu options, learned how to manipulate the crutches, including how to climb stairs, and the bed was starting to feel rather hard and resilient.  It was also difficult to sleep in one position - on the back - without wanting to turn.  Time to go home.  With last instructions on how to get into a car (still gripping aforementioned pillow between knees) and admonitions not to bend, twist, lean down, cross knees or ankles in case the new titanium and ceramic joint should pop out, I waved farewell and was driven home to a comfortable bed and lots of post-op TLC.

It takes a while to recover, and recovery cannot be rushed, so I spend quite a bit of time reading or watching daytime TV.  The latter is mostly some excruciating cookery show designed to show up a person's failures, particularly if there's a spot of emotion, rather than instruct the viewer on how to cook better.  I still have to try to sleep lying on my back with pillow between the knees, which means the night-time is very broken, but the rush to the bathroom is not quite so urgent, fortunately.  Luckily I have my trusty laptop right beside me to help while away those long hours between pill-popping.

Recovery, though, is a good state of affairs and highly recommended.