Calling out My Name

So many exciting things have been happening in my life lately.  Thanks to my friend Sheryn, I made a connection with an organisation called Be.Accessible who are passionate about creating social change in New Zealand. Their vision is for our country to be wholly accessible, so that anyone of us can just, be.  It’s a vision that has a great deal of synergy with my own. My own efforts towards building awareness and understanding in our community here in New Zealand (and with people online everywhere) are all about that.  About promoting understanding and acceptance.

Sharon Davies   Be.Leadership Alumni

I feel very strongly about helping people with ‘invisible’ illness and or disabilities, chronic illness and rare conditions that people find hard to comprehend. I write not just for me, not just for people with Dysautonomia, but for anyone who suffers the torment of not being understood, of finding judgement where they should find kindness.  I use my words so that others might find something they can share with their loved ones. A way to explain what they haven’t been able to explain.  Sometimes it is hard to find the words.

Doing that.  Using my words, has brought me to a surprising place in my life.  My health continues to deteriorate, but my heart and mind are filled with bigger and better thoughts than ever before. I saw my Granny today and she asked “Are you well?” and I could honestly reply to her “All is well with my soul!” I have a purpose and a direction that I never even knew was in my future.  I thought everything was so lost to me. I thought all of those things were out the window. Gone. But here I am, about to embark on something new.  The joy bubbles up from inside, how surprising and wonderful life can be!

Last night I attended an event here in Auckland, down on the waterfront.  It was the graduation for this years participants in the Be.Leadership programme.  The programme aims to mentor people into positions of greater social leadership by providing a year long programme of discussions and learning with some of New Zealand’s great leaders.  Among other great initiatives!  The program cost is $17,000 and this is fully funded for selected participants.  I have applied (squee!) and I am waiting to hear what happens next… so watch this space!

Sharon Davies   Be.Leadership Alumni(1)

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Last month I began writing for the parenting column of a popular Dysautonomia Newsletter in the States. And I met my editor, Ellen, online.  Sometimes when you meet someone, just as it is in person, you just click right away. It was like that with Ellen. She understands me and we have had lots of wonderful email conversations, back and forth from one part of the world to another. She is a wonderful encouragement to me. Recently she sent me this song. It stopped me in my tracks. What a voice. What lyrics!  Thanks Ellen, this song is my new anthem, it so perfectly expresses why I continue to find things that I CAN do.  Life is calling out my name.
Here is Beth Hart singing “Life is Calling”

 

…and, the lyrics…
Sunday morning, the world’s still sleeping
And the rain keeps falling like angels weeping
And I, I feel the tears on my skin
They’re trying to tell me something
I listen

Blues and yellows tap on my window
And I let the night go with all my shadows
And I, I feel the sun on my skin
It’s trying to tell me something
I listen

Life is calling, life is calling
Life is calling out my name
Make it matter, say it louder
Stay alive another day
Life is calling out my name

Perfect houses with good intentions
Where the happy families hide their broken dishes
And I, I hear the scars on my skin
They’re trying to tell me something so
I listen

Life is calling, life is calling
Life is calling out my name
Make it matter say it louder
Stay alive another day
Life is calling out my name

It’s the wind over the ocean
It’s the secrets in the sand
It’s all trying to tell me something
So I’m listening

Life is calling, life is calling
Life is calling out my name
Make it matter just say it louder
Stay alive another day
Life is calling, life is calling
Life is calling out my name

5 Home-help Lessons

Across the last six years I have benefitted from the full range of home care services and helpers at various times.  I’ve used fully funded government care services, agencies and privately employed helpers. To start with, I really struggled with being able to ask for the help I needed.  I had a hard time building productive relationships and an even more difficult time saying when it was time for it to end.  I learned ‘on the job’ how to best approach the necessity of home help.

Are you considering having home help, too?  Maybe your own capacity to do the things that need doing has been gradually diminishing.  Or perhaps yours is more of a relapsing and remitting picture.  Maybe your partner has reached maximum coping capacity.  It’s time to bring someone in from the outside to help out before the wheels fall off completely.  It’s a challenge, an adjustment and can enrich your family’s life enormously.

Having someone in your home, helping you out, is like embarking on a new relationship, like a marriage …kinda!
At first you only want to be seen in your best light.  Then, the initial rush of infatuation may fade. If there isn’t a solid basis of honesty, it will be hard to maintain positive communication channels. After a while, you feel like they should just know what it is you need them to do, even if you haven’t directly asked.  There will be small frustrations that can fester into big situations if you don’t address them. And just like a new relationship, it will take time to get to know the person and them, you.  It’s an art that takes practise; clear communication is a skill.

 

I'd love to help!

Here are some of the things I have learned over the years.

1(10)Talk. And don’t talk.
It’s hard to transition from home-maker to home-care employer.  I have spent a lifetime making sure I don’t need to ask people to do anything for me.  So like anyone who reluctantly finds themselves being “boss” without prior experience, there are things to learn about taking the leadership role with your home care provider.  Asking directly is incredibly hard for me, it makes me feel so uncomfortable.  So we started up a communications notebook.  I write in it the night before, all the tasks that need doing and mark the priorities.  The notebook is great because our home carer can write in it too if we need to replenish supplies of anything or make notes about the progress through the list.  It also means we don’t get caught up in chatter without the work getting done.

1(11)Ever heard that saying, ‘if you fail to plan, you plan to fail’?
Before your carer ever begins, sit down and work out the job description.  Be specific and realistic about things like tasks, hours, pay rate, tax.  Try to anticipate the questions so you can provide the information on the first visit. Specify any no-go-zones.  Also, try to make time for a chat once a week, during working hours.  Ask your home carer how it is going, ask for suggestions about how things might be done differently/ better/ more effectively.  This meeting over a cuppa is a great way to raise any issues that may have arisen, it builds the foundations of a good working arrangement.

1(12)Sometimes, the relationship will work, other times it won’t.
If your home-carer is new to your home, allow a few weeks for them to settle in to the role. Don’t assume it is going to always be difficult just because it’s a struggle at first.  If however it isn’t working after a good amount of effort and flexibility; make the change you need to make.  Having someone in your personal space who doesn’t, even with communication, understand your needs will significantly add to your stress.  Home help is a very personal role and you need to be happy with the person who spends so much time in your private world.  If they come from an agency you can ask for a switch in carer.  It can take time to find the right fit, don’t give up until you find it.

1(13)Maintain a professional, friendly, working relationship.
Make sure everyone in the family understands that you are the employer and it’s not their job to ask your home helper to do anything.  Similarly, even if your home help is familiar to your children, they will need to know that they still must come to you for permissions.  In our home the rule is that if Mum’s at home, Mum’s in charge.  🙂  Maintenance of any relationship takes kindness, flexibility and a willingness to find alternative solutions.  Most issues can be solved with one or all of these three attributes.

1(14)Help may be closer than you think!
Be creative in your search for the right person.  After finding help from a range of sources in the past, I was very surprised one day when I was asked if I would consider employing a friend for the job.  Cami already spends a lot of time with our family and knows our routines like her own. She is also a talented house keeper with great organisational skills and a mother herself.  My children like to call her their ‘other mother’.  Her intuition and close connection to our family make for the most positive home help experience we have ever had.  When it comes to home help in a family with young children, it may be worth asking around the people in your close circle.  For Cami, who needed a flexible part time role and for us, it’s been a win-win. Thanks Cami, we’re glad you are part of our team!

Discovery

I love the internet.

That’s no newsflash, I’ve loved it since I first discovered it. Although, back in those early days, without Boolean search terms it was a time consuming place to be!  I can be a bit obsessive by nature, so I liked to explore all the the page results.  Thankfully, search engines got better.  And these days there are so many places on the net to discover new things.

When I am having a particularly bad day, music helps me a lot.  Sometimes, I find things on the sidebar of You Tube that have been suggested to me by their search algorithm.  That’s how I found this Australian gem, Katie Noonan.  I was looking for things by Clare Bowditch.  And You Tube understood what I needed today.

This song. But it’s not just for me. It’s for anyone who needs to get through this second, this minute.  And breathe in, now.

Enjoy.

Here are the lyrics:

I see love and beauty all around,
I also see the sadness that’s embedded in your frown
I wonder why you choose not to talk to those who surround,
I sense a fear of lifting heavy feet
higher than you want to,
I just want to believe your truth…

you stand there but you do not cast a shadow,
you walk away with every word you choose not to say
I suppose that moving on paints a new colour for each day,
I don’t like to see
dreams put on the shelf, to deal with on that one day,
I just want to be happy for you

’cause I only have one second, this minute today
I can’t press rewind and turn it back and call it now
and so this moment, I just have to sing out loud
and say I love I like and breathe in now
and say I love I live and breathe in now

I move on holding on to what I learn,
it’s time to let go of the notion
that the whole world’s against me
break free of shackles that formed young, time free in now
and now I know, it’s not all up to me, I can count on another
so move on lighter and be free ….

’cause I only have one second, this minute today
I can’t press rewind and turn it back and call it now
and so this moment, I just have to sing out loud
and say I love I like and breathe in now
and say I love I live and breathe in now

I believe in for today I just want to know that you’re okay
cause I believe in breathing just for today
I just want to know that you’re okay….

’cause I only have one second, this minute today
I can’t press rewind and turn it back and call it now
and so this moment, I just have to sing out loud
and say I love I like and breathe in now
and say I love I live and breathe in now
and say I love I live and breathe in now

Songwriters
HOLLY LAMAR, STEPHANIA BENTLEY

Rehab

I have been having a battle this year.  Increased time in my bed coupled with a strange kind of pelvic/hip/leg pain have meant my mobility is significantly reduced.  Intestinal Dysmotility complicates things further.  You can read about the battle here.  Like most things, I have been tackling it at snail’s pace.  There’s the problem of having a cast-iron appetite (seriously.  I don’t know why that is.  I spend most of every day nauseated but my love for food even surpasses that!) And then there is the issue of dizzyness when I am upright.  I spend my upright time on the essentials related to my kids and family.  It’s exhausting.  Riding my bike, which was possible even last summer, is out of reach for me now.

I saw my local doctor last week.  She was concerned about the way things are. More time in bed means less time weight bearing.  That means lower bone density and muscle wastage, further reducing mobility.  Less time moving means even my significantly reduced food intake, is still providing me with too many calories for my metabolism to burn off.  It’s a travesty that these tapping fingers can’t be my exercise, they work hard enough for all of me!  Except, apparently, that’s not an effective method.  So I need exercise that I can DO, for my whole body.  Recumbent preferably. Designed for me and for my specific needs.  My doctor suggested our local Rehabilitation Trust.

So yesterday I had a brilliant chat with Lynette.  She’s a clinical physiotherapist there.  Next week she is going to meet me in their gymnasium to do an assessment. We are going to come up with a plan.  I am already impressed with her.  I told her I had problems with my autonomic nervous system and she said “hydrotherapy might not be an option for you then.  Is temperature an issue?”  Oh my!  I love a professional who knows about the autonomic nervous system!

I’m cautiously optimistic!  Watch this space.  🙂

I thought it would be cute to put Amy Winehouse’s ‘Tryin’ to make me go to Rehab” song on this post. So I searched You Tube.  And this band Rehab popped up.  I clicked on a few of their songs and I was struck by the amazing variations of their lead singer’s voice, he can go from gravelly jazz tones right into sweet angel.  What a beautiful voice. The lyrics are all about drug and alcohol addiction.  Mercifully, drugs and alcohol aren’t my problem.  But listening to this song reminded me of times in my life when I have been dealing with addiction in people I love.  It’s a brilliant song.  So even though it’s got nothing to do with the type of rehab I’ve been talking about, I’m posting it.  I am a big believer that I should pay attention to what ‘pops up’ in my life.  So maybe, this song is for you or someone you love.
A little bit of random musical kismet.

Rehab:  I Can’t Catch Up To You.

 

The Inverse of Adverse

…mothering from a place of pain…

Sometimes, for my writing gigs about parenting, I feel like there are two categories of mother in this world. It’s probably because I write for both groups. I’d like to write for Dads too, but I don’t relate as naturally to the Dad things. When I see a mothering issue, my writerly mind starts to turn it over from the points of view of two types of mum. The healthy mums and the sick mums.

Of course, it’s much more complex than that, because all mothers face diverse challenges every single day.  Many mums we see in the ‘healthy’ camp, are in fact carrying interior burdens they would cringe to let out into the daylight of public opinion, I get that.  There’s a huge crossover between those camps. Life is an imperfect art and really crap things happen all the time. You might be in the midst of creating the most intricately perfect artwork on the canvas of life when it chucks a whole can of turd brown paint over your work. It happens regardless of who you think you are, the category you fit and whether or not the universe recognises that you should have exemption. Your beautiful work of art might not get up on the gallery wall, at least, not until it’s finished. We all carry scars, suffer fresh wounds.  We all have reparation work to do.  The Bad Stuff happens everywhere, even when it doesn’t look like it.

The other day, I picked up one of my kids.  I recognised the car in front of me as one of my friend’s.  I didn’t get out of my car to say hi (although I wanted to.  I am learning to look after my limitations better so I can cope for longer in my upright world).  She knows me, she knows my stuff.  So I sent her a message on my phone, from one driver’s seat to another  “Hello Beautiful!” I tapped.  Because she really is bona-fide beautiful.  This Mum is the sort of Mum that other Mums look at and their insides sink.  She looks perfect.  A tiny little frame, perfectly groomed hair and face, clothes you wish you had hanging in your own wardrobe… if only they made them ten sizes bigger!  She’s got a few degrees, a chic home. Bright, beautifully mannered children.  Oh, and that car rear I am staring at?  Very nice thank you very much.  The lady’s got class …and the means to show it.
And in truth, I really like her in spite of all that, you know?  😉 She’s personable, approachable, interesting and funny.  She’s a genuinely lovely person.  She slid elegantly out of her driver’s seat and came to chat with me at my window. I was struck by her beauty.  Sigh. Suck in your tummy, Rach.  Put on your smile.  I wonder how she really is?

How she is, really, arrived about two minutes into the conversation, when she revealed that she is facing not one, but two, major health crises.  I stared at her flawless complexion and thought about the torment that must be happening behind that beautiful face. Her vulnerable eyes are shielded by reflective sunglasses. I feel so lost for how to comfort her.  Even though I know it.  I know that torment. The ache of the sick mother.  The loneliness of facing your own mortality in the mirror.  The frustrations when the sick stuff leeches into the mothering stuff.  It’s horrible.  Unfair.  It’s life.

My heart is tuned toward the mums who are mothering while sick.  It’s like I can hear them, sobbing in their wardrobes, hiding from their children. I see the images that haunt their night time dreaming, their fears unleashed in a scape not limited by reality.  I feel their thumping hearts as they consider the most awful possibilities. A final severing of the metaphorical umbilical. The thought of life without them in it.  Carrying on.  Of some other person, filling their dent in the bed, their place in the world. The sick mothers, thinking about their babies, as much part of them as their own pulse and breath.  How can you even begin to prepare your babies for a world you may not be in?  And how can you do that without suffocating them in your arms and trapping them in your presence?  How can you step away from the feelings, to balance your mothering, when you live in fear?

There is so much to be afraid of.  But nothing we can do will change our truth.  Big life stuff is an irrefutable fact. It’s just part of the shape and texture of the life we happen to be living.  It’s real. It’s here. There is freedom in speaking it out. In owning it. And there is relief in surrendering expectation to a new paradigm. And because being sick gives it’s own gift of perspective and gravity;  there is something quite extraordinary that we get to tap into.  We get to mentally jump off the expectations of perfection.  We get to let the pressure drop. We get to focus on the things that matter most of all.  If we are prepared to leap into a new way of viewing our crappy situation.

My mother heart projects forward into the future. I look at my babies, so precious.  I think of the time I have with them.  The length of which, no person knows. As unpalatable as it is, the amount of time any of us have is limited.  I think of the quality of that time and I know my purpose.  I want to help my children to become excellent adults.  Beautiful world citizens who are kind, open-minded, thoughtful and flexible.  I want them to make the best out of the crap life hands them. I want them to make our world better for them being in it.  And there is no more artful way to do that then to teach them how to respond to adversity with grace.  How to take even small opportunities and run with them. I’m a sick Mum.  And it is precisely because I am sick that I have a meaningful context and opportunity to help my children be exceptional people.

I resolve to answer my fears with determination.  My situation is a chance that not every mumma gets. I know the value of my time and the importance of my role. I will teach. I will nurture. I will do these things imperfectly and sometimes flat on my back. I will do them with love and an eye on the people my children are becoming. In every adversity there is a teachable moment.  We can do something beautiful in every ugly, uncomfortable moment. We can guide our babies into fulfilling lives.  Show them how to shore-up, talk about it, get through.  How to keep their eye on the value of every given moment.

Don’t waste it, sick Mummas.  My sisters-in-arms.  Embrace it.

One moment, one day, at a time.

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Hold Tight

This song means a lot to me.

I’m posting it here tonight dedicated to all the people out there who are struggling with difficult diagnoses.

Don’t let anybody tell you
which way the story goes
‘cos I’ve been asking round,
don’t think anybody knows…

Sometimes, you feel like giving up.  Don’t give up, just hold tight.  You never know what is around the corner, what research, what treatment possibilities, what moments that will make it all worthwhile.  Just hold tight.

It’s a Damn Shame

 

source
source

 

This morning I was chatting online with another Dysautonomia patient.  She has Neurocardiogenic Syncope, one of the types of Dysautonomia, where I have Pandysautonomia, another type. We are both in the same city; we are from similar socio-economic backgrounds and both fall into the same District Health Board zone. We have seen the same doctors.  But the treatment we have both received has been different.

On seeing the same specialist, about the same issue (recurrent fainting), she was told she was ‘faking it’. I was given a room of my own in the public cardiac ward and fitted with a pacemaker to stop the faints from occurring. I don’t know the ins and outs of her medical history, so this is not an entirely objective comparison.  But I know that her new cardiologist takes her condition very seriously indeed.  So seriously he admitted her to the cardiac ward before and after recent surgery so that he could monitor and treat the various issues anaesthetic drugs and surgery would create with her autonomic nervous system.  She is no ‘faker’.  Another friend with Dysautonomia, in another part of Auckland, has been abandoned by her District Health Board altogether.  She struggles, largely bedridden, without medical care of any kind.

Many patients with our diagnosis endure consultations with Specialists who cast aspersions on our authenticity.  I can only conclude, that ‘fakers’ must occur frequently in doctors offices.  Otherwise, I can’t understand why it would be such a ready conclusion to be leapt upon?  Perhaps, when the answers aren’t easy to find, some doctors find the alternative of ‘the faker’ patient more palatable than saying “I don’t know”?  It must be difficult as a doctor, as someone who relies not just on their years of experience but also on their mental accuity, to consider that they don’t know what is wrong.  Is dealing with not knowing, ever part of a doctors basic training?  Do they cover what to do when they are faced with a patient who doesn’t fit within their current paradigm? Perhaps medical school is where a doctor learns to make the judgement of “faker” in the first place?  Doctors, Specialists, I would love your perspective on this if you are reading.

I remember sitting in a doctors office once.  I was very ill.  I’d been fainting for most of my post-adolescent life. He explained that were I a young woman, he might think to ask me about my relationship with my mother.  “Some young women who don’t get on with their mothers have a tendency to hysteria and unexplained ‘fainting’…” he mused.  I waited for him to smile and tell me that thinking like that used to occur in medical circles oh, around the time of Austen.  But he wan’t joking. He continued “you seem a reasonable person…” and proceeded to discuss the treatment he had planned for my actual symptoms and the signs visible in my tests.

I think I was a lucky one.  My profession lent me some respect.  My manner seemed ‘reasonable’. My age at diagnosis was clearly an advantage (lucky me, I’d been sick for longer than some of those poor ‘young women’).  My test results were dramatic. The fact my husband works in the Health Sector and was a familiar face possibly also lent some significance to my case.  But should it need to?  Should younger patients have the onus placed on them to prove that they are in fact emotionally stable?  Shouldn’t objective tests be recognised and patients treated impartially?  Should doctors not err on the side of “I don’t know” rather that “you are a faker”?!  Is it so painful to not know?

We rely on doctors to be scientific; objective.  But doctors are human. The sum of their personal and professional experiences contributes to their professional values.  They come to their praxis from their own unique place on the values continuum. They have ideas already entrenched, in relation to some conditions. Sometimes these ideas are there because of experiences with previous patients.  I did once see a doctor who referred to people with my diagnosis (then, it was POTS), as “you people”. Sadly, fainting has for centuries been considered a ‘female failing’ a sign of a ‘weak constitution’.

Michelle Roger, an Australian Dysautonomia Advocate and Health Activist, recently wrote an excellent article about when being a woman is an impediment to medical care.  I urge you to read it. It’s an issue that needs to be discussed more in community forums. I and other patients with rarely diagnosed diseases or chronic invisible illness welcome any opportunity to discuss these issues with medical practitioners.  It all starts with the sharing of articles like Michelle’s.  With engaging in discourse about why some doctor’s offices provide this shaming and difficult experience for many genuine, female patients.  It’s not on.

It’s a damn shame. Being laid on the wrong shoulders… and it’s got to change.

Something Always Sings

 

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This: words we thought were lost.

 

Of late, there’s been a good deal of Spring Cleaning going on around here.  We’re finishing off a little reno, so tidying all that up has spurned some sorting.   Yesterday I sat in a chair in the sun (quiet duties for me, so soon after getting out of hospital) while my hubster photographed things for an auction site. We’re culling. It feels good.
It’s our first real clear out since we moved here six years ago.  It’s good to let go.  Even better to find treasures you didn’t know were even there.

In the garage, he found a box.
“Honey, can you check out this box?  It needs to be sorted; is it a keeper?”.
The box is lurid seventies green.  I remember Mum kept her sewing patterns in boxes like that.  Surely they’re not still in there?  When I open the box, I see that it is only about a quarter full.  No patterns.  I see the kodak imprint on the back of some snapshots, a packet of lace coasters, a journal, a folio clad with swirls of purple, orange and green vinyl. It seems familiar, yet not my own.  Where have I seen that stuff before?

I reach for the photos first.  Pictures of me that my Mum used to have. I see myself at various ages.  It’s confronting, seeing that vital girl.  The sophisticated graduate. And comparing those selves to the sick me I now am.  I put the photos down.

My school reports.  A smattering of them from across the years.  “Rachel is an excellent student with a mature attitude to learning” (aged 8) alongside “Rachel is easily distracted and would do well to focus on the matter at hand. Aim higher” (aged 15).

This must be a box of things Dad gave me after Mum passed away.  Things my Mum left.  I remember vaguely, putting the box he gave me out of sight.  It was too hard, back then.

The kids and I laugh at my school report that shows a string of As and one D. 
“What does Grade: D Effort: 3, mean, Mum?”

“Experiencing Difficulties and Attitude needs Improvement”
“Mu-uum!  What was that for?”
“Physical Education”
My daughter looks at me with a grin on her face.  Her own frustrations on the sports field suddenly making sense, “Oh!”

The box contained some of the cards I had made Mum over time.  Even a letter I sent her from Germany when I was working there as an Au Pair. I didn’t know she had kept these things.

The journal was her own. A journey through her life during the times she lived in Hong Kong, Guangzhou and Beijing.  Then some sad entries about the time back in New Zealand before it all picked up for them again.  I looked at the loops of her handwriting, so similar to my own. I tried to hear her voice talking the words. I could only see her eyes, crinkling up into a smile. I was holding another fragment of her life, like her cup, both so absurdly present even though she can’t be. And yet, there she is, a breath away.  Her perfume in the air and her remembrances in my hands.

I reach for that folio.

Long after my Grandma passed away, Mum would speak of a folio, a special folder that carried the things my Grandma held dear.  Snippets from newspapers, poems and scriptures.  Little things she found or noticed that spoke to her.  My Grandma was a soulful person who carried a deep faith.  My Mum shared the same faith and often spoke sadly about the missing binder that held so many of the writings that inspired her own Mother.  After Grandma passed, my Mum thought her sister had the folder.  She urged me to find it. After her sister passed too, I did ask after it. But her daughter hadn’t seen it anywhere.  It was a mystery.  It seemed to be lost, like that whole generation of girls.

Until yesterday, when it was found, in our own garage, tucked away in a green box.

I wish I could give it to Mum.  She must have had it all along and not realised she did.  I wish I could travel back through time and show her.  I think of my sister and my cousins, I must tell them it is here.

I turned the pages carefully. Looking at the things that helped my Grandma through her most difficult days.  I could see a familiar interest in finding the words to carry you.  I do the same in my search for quotes and excerpts that say important things; in striving to find my own words.  This deep connection with words must be part of my Grandma’s legacy.

I thought again, about handwriting.  About the words we make, the words we keep.  The way my Grandma, my Mum and I stored words for inspiration.  Used words to make sense of life.  Wrote words to excise the pain.  I thought about how Grandma’s collected words could still speak to me, long after she is gone.  Even though I never really knew her.  It made me feel better about my own.  My own legacy.  Maybe my Grand-daughter will read these words one day and understand that I love her, even though I haven’t met her yet. That she is me, carried forward, just as I am the women before me, carrying on.

 

...on the first page of Grandma's folio.   In her own handwriting, these words that reached across two generations.  Thanks Grandma. X
…on the first page of Grandma’s folio. In her own handwriting; these words that reached across three generations. Thanks Grandma. X

Sweet Home

The lights of home are a warm yellow.  There’s no strip light cold hard fluorescence blinking into life; here.  They are a soft light; home light.  Benevolent. Outside the wind is howling, it is a perfect day for turning on the lights before dark has even come. I pull all the curtains and blinds closed against the weather and tuck myself into bed.  We have a thing for flannelette sheets.  Warm snuggly cosiness. I wiggle my toes down through the sheets, they are still warm from before I got up to light the rooms and close the windows. I’m hunkering down and pulling the heavy covers over me.  Safe and secure, in my own bed.

I got myself out of hospital last night by telling a bit of a lie.
I exaggerated my progress and the house officer signed me out.  I couldn’t bear one more moment there. A lonely weekend, the frustrations of not being in control of my own treatment.  Home here, where the light is warm and the bed is mine.  This is where I can help myself. Better. But I see that I have been a little ambitious.

Healthy people are speedy people.  Have you noticed that?  They move at what seems the speed of light, whizzing around the place, flitting from one thing to another.  Barely stopping at all.  It’s exhausting to watch.  It makes you feel like you need to be rushing about, too.  So I did, for a bit. I hung out some washing.  I put some more in the machine. I climbed the stairs and made a bed.  Then my body flicked over in to ‘NO’ mode.  I felt internally shaky, weak and so tired.  The contrast between me and the speedy ones so stark. I felt like one of those figures in the midst of a time lapse scene, the world blurring past me as I sat motionless.  
I lay down.  I watched the wind out the window whip the trees and push debris up the road.  The rain slanted down on my washing; turning the reflections of the traffic lights at the top of the street into watercoloured puddles.

So I slept. The speedsters kept speeding through the day and eventually I got up again. I called my little guy over to work on some homework.  We got out the watercolours.  And got absorbed by them.  Long after he’d finished his poster, I was still playing with them.  What a beautiful distraction from the feelings in my body. I focused on the colour, bleeding out from the brush onto the paper. Filling the spaces with colour and light.  I thought about the strokes, the shapes, the way colours moved together.  I thought about my Mumma, her artsy legacy spreading out across her children and her grandchildren.  She’d like to see me there, playing with paints.  Filling my mind with colours to push out the pain, the ache, the things at stake.  I thought about her cup, the one she cradled in her hands every time she had a ‘miley’. Her cup.  Her hands.

I remembered my Dad, last week, standing there in the kitchen, holding it out to me.  That small moment when my breath caught in my throat and I realised the treasure he was giving me.  Her cup. His tears, my tears.  We could fill that cup with our bereft sadnesses. But she is not here to drink from it.  I placed it on my shelf of treasures.  I thought about that cup with the paint brush in my hand.  I painted a picture with the paints.  And packed them all away.

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I slowly make my way back to bed.  To stretch down into the benevolent yellow light.  The comfort of home. I will sleep some more and join the fast ones later.  Together in a circle of light cast onto the table from the pendant above. Food, family… home.
Sweet Home.

Property

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The sheets I lie on have HOSPITAL PROPERTY stamped all over them.  I wonder who else has slept on them, cried on them, died on them. The room itself is a perfect duplicate of every other ward I’ve spent time in at this hospital.  I could make my way to the bathroom with my eyes shut. The differences between wards always end up being the people. The patients, the staff, the tea lady.

Today I can hear great guffaws from the nurses’ station.  Brisk footsteps along the corridor.  A child trying out the acoustic echoes in the atrium outside my window.  The child is five floors down… the acoustics are impressive. Once there was a violinist who played down there.  He used to come and practise there, attracted by the same sound qualities that fascinate the yelling toddler.  The sound circles around the atrium and returns, fuller than before, echoes onto itself, folding, as though the sound itself could travel backward in time.

The nurse came in with towels this morning.  And a fresh gown. My room mate commented that it was the first time this week anyone had suggested a shower.  I showed her where the linen cupboard is, for next time she wants a rebellious, self-determined shower.  There are things you get to know when you are a frequent flyer.

I had my shower, sinking gratefully into the shower chair.  Wishing I had one at home.  I let the warm water cascade over my head for longer than usual.  Closing my eyes I thought about my home, my bed.  The peaceful quiet.  A song slid through my mind and remained there, playing on refrain for the rest of the morning.

“…in the easy silence that you make for me,
it’s okay when there’s nothing more to say to me
it’s the peaceful quiet you create for me
and the way you keep the world,
at bay
for me”

Dixie Chicks

There’s no place like home.  I feel like a big old baby, lying here in this bed, wishing I could go home. I want the nurse to come in and murmur something motherly.  Something definitive.  A time frame, a decisive sentence.  Instead we all lie here, suspended from the rafters by invisible lines.  We are the puppets on long strings, the marionettes who lie jumbled in a heap, waiting to clatter to attention when the consultant arrives. He stands there at the end of the bed. Discussing you for a few moments with his humbled registrars, before sweeping off to the next jumbled pile of limb, heart and head.  As he leaves, my pieces clatter back onto the bed, out of order, out of sequence.  I want to put them all together with superglue and snip the strings.  I want to walk out of this marionette maison, better than when I came in.   The longer I stay the less my body wants to work as a whole.  My pieces and parts falling further away from each other, disconnected, fractured, dismembered, disarrayed.  How will I keep pulling myself together?

I know I am the glue.  My own determination is what holds me together.  But it dilutes with every hour I am here.  Starved of the peaceful quiet I so need; the words of comfort or reprieve.  I look down at my hospital gown. Hospital Property is printed all over the blue fabric. I am branded like the sheets.  I am morphing into the patient puppet.  Voiceless, quiet, does-as-told.  It’s too hard to fight against the system.  It’s too big, too entrenched.  I close my eyes tight against the day and the thoughts and the words.  Against the visitors to the bed beside me; loudly eating fried food.  The teenager’s parents, hovering over her, worried about her poor head. Cradling it in their arms and cooing soft sounds into her ears. I wish they would all go away.
I wish I could go away.

Instead I stay.
Property of the Hospital.