Neil Diamond & The Lounge Lady

 

I woke up yesterday morning with tears running across my cheeks. I guess I shouldn’t have been surprised by that, times are hard around here right now. But I was. I didn’t wake up crying even when my own Mumma was dying. I didn’t wake up crying when I thought my type of Dysautonomia would progress until I could barely function. I didn’t wake up crying any of the times in my life when it might have been warranted. But yesterday, I did. I stumbled out to the kitchen that is so full of memories of times with my in-laws. I popped the kettle on and thought about how integral having a cuppa was to my relationship with my mother in law, Mary.

We didn’t always agree on things, she and I. But we did agree on the necessity of a good cuppa.

Mary has Parkinson’s Disease. She was diagnosed not long after I joined the family and I remember well how it rocked everyone. Mary and John are stoic and proud Englishfolk. It was clear over the years that they would deal with it their way. Our wider family, the social workers and district nurses, the network of support around them, watched on with a kind of admiration for their determination.  John doggedly problem solving his way through her caregiving, devising natty little devices for pill dispensing, modifying her walker, endlessly adjusting, adapting, and rearranging the chairs on the Titanic. And Mary herself, a consummate non complainer, tried hard to mitigate the ravages of Parkinson’s on her brain and in her body. Eventually, as seems to be the pattern for elderly couples where one is terribly sick, the caregiver gets increasingly rundown and their own health struggles set off a cascade of events. It has happened even to John and Mary, the indomitable two.

This week, I’ve been with Mary while John is in hospital down country.  She’s in a nursing home in their little regional town. He’s having rehab after spine surgery. Mary’s nursing home is so beautiful. The views across Buffalo Beach take my breath away. But I’ve noticed that the high needs residents don’t appreciate the view. That the ravages of age steal distance vision.

14484908_10154698794245815_2855424997354555910_n

These unfortunate few stare mostly into space, occasionally focusing on the person in front of them who is typically asking loudly and brightly a series of questions.  A nurse enters Mary’s room:

“HELLO MARY!  HOW ARE YOU TODAY?”
Mary jumps at the sound of the voice so close. Her rheumy eyes try to focus, her hand reaches towards the stimulus. The tremors are bad today and her body is almost bent double, contracting up and in on itself. Muscles tight and unwieldy.
She mumbles something but her words are indistinct.

“LET’S GO TO THE DINING ROOM SHALL WE? TIME FOR LUNCH!” the nurse shout-speaks chirpily.  Lunch will be in half an hour, but it takes that long to wheel and cajole everyone into position.  Mary’s eyes brighten momentarily, and very slowly, she licks her lips. She likes her food. I smile at my memory of this whippet thin woman, carefully  portioning out her own meals to half the size of everyone else’s at family dinners. She has thrown caution to the wind. Food is good. I think of the bucket of liquorice allsorts I sent up last weekend, now half gone. I’m glad she can still find enjoyment in something.

“HOW’S THAT CAST? SORE?  MARY, ARE YOU SORE?”
“I’m-alright-thankyou” she whispers, barely audible, but they are the first words I’ve heard today. I know it is habit, her responses to questions like this. Every time she moves, she winces. The cast is heavy and cumbersome against her constantly moving frame. Her frequent falls have resulted in a complication in her already broken shoulder. The bones beneath her socket joint hang loose and jut into her ribs under her arm.

“OK THEN! UP WE COME… ARE YOU READY TO STAND? I’LL JUST REACH AROUND AND HELP YOU UP …GOOD GIRL!  HERE WE GO…”  the nurse braces to lift our waif-like Mary. You’d be surprised how heavy a waif can be when you are lifting all their weight without assistance.

“OH DEAR, DOWN WE GO.  MARY?  ARE YOU WITH US? MARY!  HELLO MARY? BIG DEEP BREATHS, MARY!”
Mary had momentarily fainted. It happens most times she has to stand. Her eyes roll back in her head and she is a ragdoll. Quite different from her usual rigid bodied self. Now ensconced in the wheelchair the nurse takes her down the hall to the dining room. It is next to the Lounge, the communal area lined with other octogenarians, glumly sitting and waiting to be taken in for their hot lunch.

14543793_10154698816645815_8600405286305427566_o
Neil Diamond is on the telly. A gentleman fixes his tearful eyes in my direction. I have come to expect emotion in this place, I wonder if maybe Neil’s crooning is making him sad.
“Have you seen my wife?” he asks me, his voice trembles slightly as though he knows the answer will be bad. I remember being here when his wife passed away. I pat his hand. “No, I haven’t, I’m sorry. I am sure you will see her soon” I feel guilty as I say it. But to tell him the truth again and watch the grief anew. I just can’t do that (I’ve seen the nurses tell him many times and he is always so distraught. “Was I there for her?” “Why didn’t anyone tell me?” “Where did they take her?”  “Oh no… no…”  he’d keen, his hangs wringing in his lap and the confusion and distress furrowing his age spotted brow).
No. It’s too unfair.
Within minutes he has forgotten again. His face is blank.  I’m glad I didn’t tell him.

14570465_10154698783390815_5831050359882488542_n

Mary has nodded off. I let Neil’s music transport me back to happier situations. I am toe tapping and humming. I see the slippered foot of the man in the chair beside keeping the beat. He grips my hand.  Meanwhile, Neil drawls and gyrates in his sequin jacket “I’M ALIIIIVE”! The irony is not lost on me.
“I would have been a jockey you know!” say the earnest man. His eyes are twinkling, one of his pupils is blown. I wonder if he did that falling off a horse. “I could do things with horses other people couldn’t do.  But no. No… encouragement…” he sighs, suddenly dejected.
“Oh do shut up!” shouts the lady just past him. “I’ll kick you in the butt one of these days!”
“You shut up, you fat slob” says the woman beyond her. “Take no notice, Love” she says pointedly to the man beside me, rolling her eyes openly at the upstart.  Many of the elderly could care less about politeness. They’ve run out of time for niceties. They just say it like they see it. This Lounge can be a brutal place.

A nurse aide moves Mary into position at her dining table, deftly swinging a giant bib across the front of her. As she does it up, she tells me that Mary helped her children learn to read at the school, some thirty odd years ago.  She was a teacher aide at Mercury Bay Area School. Suddenly Mary is animated. She says the name of the nurse aide’s kids. “That’s right, Mary!” she smiles and then, turns to me, “-sharp as a tack! There’s a lot of people who love this lady”. She pats her gently on the shoulder.  I nod. Kiss Mary on the forehead and say my goodbyes.  I’m sad. We love this lady too. It stings a bit that she can remember those kids, but she has forgotten who her own grandchildren are. The synapses that connect that information to her conscious mind have been stolen by Parkinson’s Dementia. She’s had only one thing to say to our girl Bee this week. That she never did like the colour of Bee’s hair. She hasn’t been able to notice that Zed is even here. These kids who come with me every day to see their Nanna. These kids who have never complained about the grim realities of spending time here with her.  They love her too. Regardless. Gosh I am proud of them. They hug her and kiss her goodbye and she clings to them. I think she knows at some level, some basic biological level, that they belong to her. I comfort them with the facts that her brain misfires sometimes. Tell them, for her, that she loves them.

14606426_10154702659650815_1537913198537514591_n

I’ll be back tomorrow. She won’t know me then either. I’ll be just another friendly face among the many attending to her. My voice will be loud and bright like theirs; do we do it to dispel the despair of it all? She’ll look at me with confusion. She might shout at me like yesterday, or stretch her face into a semblance of her beautiful smile. She might hold my hand, or demand I help her go to the toilet. She might just be drifting, somewhere between Life and the After, talking indecipherably with her long passed sister, long red braids twisting around her youthful hands, skipping along a street somewhere back in England. I hope that she feels loved, wherever her mind has gone. That the warmth of my hand transmits all the humanity of my heart for this frail, vulnerable lady.

I guess the tears are okay. I guess they are just a part of the lifelong process of accepting mortality. Someday, someone might have tears about me. Mary once told me that she thinks of this mortal coil like a fixed sized plane. As babies get born, all our souls get kind of crowded here. Sometimes, other people have to get off, making way for new life. She said it made her feel better thinking of it that way.

Everybody has their time and then one day, they move over. That’s just the way of it.   Take it away Neil:

…everyday

There’s a brand new baby born
And every way
There’s enough to keep you warm
And it’s okay
And I’m glad to say
That I’m alive

 

Your Age

 

 

large photo by Beverly Couper
#letyouragebecomeyou

I’ve been doing some writing for another publication. I can’t publish it here because it’s exclusive to them, but if they choose not to use it, I’ll be popping it up for you to see. I enjoyed writing it so much!

It’s all about curves and confidence, and the circuitous path it took my soul to find a way for both to exist simultaneously in my world. When I was younger, I had no idea that curves would eventually be such a useful part of my self-esteem. I had no idea that the things I hated about my body would become things that I celebrate. How did that happen? How did I get from self-loathing to self-loving?

I had a massive reality check in the experience of living with Pandysautonomia.  A gift of sorts, in the way that all the most memorable life learning can be simultaneously painful, difficult and uplifting.

It made me realise that there are body issues which transcend the petty concerns of comparison. It made me feel the sting of all the time I had wasted on self-criticism, there in front of the mirror, thinking about all the ways people would disapprove of my dimensions. So ridiculous. Mum used to tell me when I was a teenager, that most of the time, other people wouldn’t even be thinking of what my body looked like. That it was a kind of vanity to assume they were. I was convinced there must be others like me. That they were studying every other like-aged-girl to see what was ‘normal’, hoping that they could become it by studying it in all its minutae.  Hoping to find the magic code for ‘cool’ so we could programme ourselves to be so.

I couldn’t be. I was far too tall and generous of beam to ever fit the narrow-hipped, slim legged archetype of the eighties fashion teen; those oversized tops and legwarmers only looked good on petite little things. I didn’t yet understand that being a six foot tall woman required a certain level of bravado. That you need to own your height, your wiggle.  That the most uncool thing of all isn’t wearing a home-made dress, but being a mouseling in a giantess’ body. I had no idea that confidence and ease are the symptom of a simple choice you make. To accept your unique self, no matter how different you are to the established norm. Being free within your own expression of DNA to be your own kind of beautiful.  I wish I’d known that back then.

I could have done a lot with my gorgeous young self that was left undone, all because I didn’t understand. No amount of wishing, dieting, exercising, hoping, slouching, yearning or moping was ever going to change the facts.

I am a giantess.

Fast forward to my middle age… I’m so proud of being built this way. My size has become a bankable commodity since I started plus-size modelling last year. My confidence comes from finally getting it. I’m this person. Who you see is me. All of me. I wear my love of cake in my curves. I wear my love for people in my smile and the wrinkles around my eyes. And I wear my heart on my sleeve, because that is just who I am. No filter. No problem.

Some people love these things about me, and others don’t… and that’s no problem too. I can’t change a thing about it.  I’m happy, at last, in my own skin. Happy to be who I am, in a body that functions. Happy to be surrounded by people I love and to know that above all things, that’s the most beautiful thing of all. He tangata. Happy to be the age I am. To know the things I know. To leave behind me the pointless self-flaggelation of living to the standards of others. It’s a kinder, freer way to live. It makes space within my noisy head for more useful thoughts… the sort that create and feed and nurture me. Building me up to do the same for others.

I’m starting a hashtag across my social media, because I think we don’t celebrate nearly enough, all the ways that age can be ‘becoming’ to women. I’m all about the notion that beauty is relative to your soul, and sometimes, that takes a long time to understand. How are you letting age become you? What are you noticing about yourself that you finally GET, that you didn’t appreciate about yourself when you were younger?

#letyouragebecomeyou

I See You

 

——————————–

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.

226973_6706170814_6531_n

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.

How Long ’til my Soul Gets it Right?

So many philosophies abound on the subject of life, past lives, karma, goodwill, fate, futures, memory, purpose.  The meaning, of all of this.  We go through our days searching for reasons, looking for clues that will help us understand the Great Mystery.  Well, I do.  Hubster is less curious about why we are here and what it all means.  I sometimes envy his solid and scientific approach to all things metaphysical.  He is able to just not think about them.  What a relief that must be!

I grew up in the midst of church, quite literally.  Some of my earliest memories are falling asleep in my sleeping bag under the seats in the church, listening to the preacher’s voice at the Sunday night service.  There is a kind of a musical rhythm to preaching when you don’t understand the words.  That old tradition; generations of oratory, was my first lullaby.   My parents went to pentecostal churches (those are the ones you might identify as the ‘Happy Clappy’ churches).  And so, we four went too.  We had devotional every morning, home-church mid week and then church twice on Sundays. The singing was robust and energetic.  People raised their arms and waved them in the air.  I used to wonder why God didn’t wave back. Why some people could hear his voice but not others.  I used to pray with great earnestness.  I wanted to know the God they said was loving and kind.

When I was born I was dedicated to God.  I was four I was guided in the sinner’s prayer and ‘gave my heart to the Lord’. I didn’t want to go to hell when there was another option! The Bible said all manner of horrific things. Vengeance and punishment and judgement and eternal suffering. The Bible said that if I so much as thought of a sin, I had sinned. I was terrified.  I quite often thought of sins. I especially thought sinful thoughts about church and God and Christians. They just happened in my head. People sang songs of love to Him and danced in the aisles for their joy.  But I trembled at the thought of that angry God. I played my part and talked the talk, until one day, I couldn’t sustain the double life that I had grown into.  The church me and the real me.  The two ‘me’s were now so far apart that I couldn’t behave like a ‘christian’ and feel like myself.  It was a difficult conversation to have with my parents.

My parents’ people were faith-in-action people.  They believed in doing.  They were generous and truly understood the power of giving, of themselves, their skills and their own possessions.  Their communities were strong and compassionate.  In every church they attended there were people walking the talk, being God’s grace in the world.  And just as in any group of people, there were strange folk. People I found it hard to like. And I sang the songs and I clapped along.  People swooned at the pulpit, cried with joy at their healing, spoke in strange languages at their baptisms, screamed as they were delivered of their demon possessions… and some spoke with the voice of God Himself during prophecy time. God Himself spoke in King Jame’s English, just like my bible. Not Hebrew.  Or the language of heaven, whatever that be.  How curious, I thought.  And I would chide myself for another sinful thought.  My heart longed for the kind of connection with God that so many people seemed to have.  But it was always so elusive, just beyond my grasp.  I think I knew that the God of my parents did not love me in the way He loved some of those people, and I couldn’t find real love for Him amongst the noise of all my thoughts.

As I grew older and began to read more widely, experience life more, explore the ideas of modern religions and world history, my questions came thick and fast.  My doubts grew.  I saw the manipulations of communities by corrupt church leaders, by TV evangelists, by healers and preachers and worship entertainers. I stopped feeling guilty about all the ways I had failed in the church. I began to let myself wonder and think even more.  I wondered about other religions and began to research.  Why? I don’t know exactly why I search for answers, why I want to believe in something.  Because it is nicer to believe.  Because life is easier if you believe in something. But every religion I looked at was not my religion.  Did not answer the call of my heart for connection and meaning.   There are aspects of religion that I truly love.  I love the quiet reflection that can only be found inside some chapels.  The hush and rest of a seat in a candlelit space.  I love the music of faith, the melodies of my childhood, the songs of scriptures in a chorus of voices.  I love a good Psalm when I feel adrift.  A verse from my early years can bring me the comfort of my mother.   The memory of her voice saying my goodnight prayer, the same every night until I left home.

In a simple way, I feel certain there is something.  I have felt a rush of feeling when wonderful things happen in my life.  It is gratitude, deep thankfulness from my very soul.  It wells up and sometimes I have to shout it out.  Thank you!  But who am I thanking?  I am not sure.  I feel gratitude to the greatness of life.  I once watched a film that was about life in a meadow in France; Microcosmos I think it was called. It was filmed on microscopic cameras and showed extraordinary, exquisite details of insect life.  The detail, harmony, the ecosystem played out in all its’ artistry.  It completely blew my mind.  So profound. Somewhere in there is the meaning of life.  The secrets and the mystery of it all.  Somewhere out there, or in here, surely, is a life force worth worshipping.  So I feel gratitude to something I can’t define. I wonder at the sheer intricacy of our planet.  Our Universe.  Our bodies and our minds.  Our capacity to love and to hurt and to create and to destroy.  But I have not found a religious God.

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

How long til my soul gets it right?  Can any human being ever reach that kind of light?

This line is one in a song that always makes me smile.  It is a tongue in cheek song about reincarnation by the Indigo Girls.  I found this song when I was 19 and working in Germany as an au pair. Their music was great to dwell on at that age, such good lyrics. I still love so many of their tracks.  They take me back.   Have a listen to Galileo.  It’s worth paying attention to the lyrics, they make me laugh out loud.  And in the absence of something more transcendent, laughter is a good good thing.

 

er… and just like many of the Indigo Girls videos, this one is a bit distracting.  Better to listen than watch.  Or listen.  Then watch!