Respite without Joy

I have spent weeks, maybe even months getting ready for today. 

A day to get everything ready, to check everything, to pack everything and make sure Merv has everything because today he goes into respite for two weeks which allows me to have a little 'me time.'

This has been happening twice a year for four years.  I used to take it for granted.  I travelled or just sat somewhere.  Just being what I said to my counsellor:  normal.  Normal people don't wash their spouses, clean their teeth and never have the choice to ask for their help.  Or maybe I am wrong.

I read magazines with amazing stories of people overcoming their disabilities and the joy they bring.  I find it difficult to find joy. 

Merv has Huntington's Disease, a challenging degenerative disease.  His health has declined steeply in the last six months.  His mobility is declining.  I wonder what the person in the street thinks as Merv stumbles by.  Only the other day he got up from his recliner and lost his balance bringing the side table crushing to the floor.  Fortunately he was better off than the table, which has been demoted to the bin after a crack the width of the table disabled it completely. 

Merv looked at my sheepishly as I helped him off the floor.  I suggested he used the lift chair for what it is!  The lifting part will help him stabilise his balance. I smile to myself. It is a good sign he can think and fight and not give in.

We were twenty minutes late in arriving for his respite.  I had packed his suitcase, wrapped a seatbelt around his shower chair (yes, we are asked to bring our own), dissected his wheelchair into little bits only to put it all together once we arrive.  I collected a pile of books and magazines for him to look at, none of them library books which would never be found again.  Our local library sells non fiction books a couple of times a year.  Merv has varied interests of not only sports and footy but Australia and places around the world we have visited together.  Books on these places are eagerly sought.

I almost forgot the tray of iced chocolate cupcakes I had cooked and frozen on Saturday.  A last moment memory.  I had no room in the car so I rested the tray on the upside down shower chair in the back seat.

When we arrived at respite I spoke with the staff and went through Merv's updated care plan and how to use the new Safe Straws to prevent the scary choking incidents of the last few months.

I emptied his suitcase, hanging his clothes in the wardrobe and finding a home for everything else.  I took him by the hand and showed him where to find his clothes and his beloved treasures.

I kiss him goodbye and hope for the best.  I pass the baton and move away.

I drive to Mel's house.  We are off on the bus to Pemberton tomorrow for a few days.  We have planned a wildflower tour and a boat cruise on the Donnelly River. 

It's going to take me a few days to relax and enjoy, but I know this time around it's a bit more difficult.

It Happened to Me

I was like a noisy mouse scuttling from one room to another.  Shuffling through papers, looking behind the dressing table, checking the same places over and over again.  Where did I put it?

It's not the first time I've been in such turmoil.  I have a four drawer filing cabinet but I still spectacularly lose things of great importance.

The house deeds are in the safe, I am sure of that, along with our passports and even my Singapore pearls (which I forgot to wear to my nephew's wedding).  I have made a mental note to wear them to Dustin's wedding next year, at least I hope!

Last night I was looking for Merv's blood test form.  There are two forms, one in my sweaty agitated hand while the other successfully evaded my hunting instincts.  With every fibre of my being I was going to find that elusive form, there would be no sleep until it lay together on the kitchen table with its other page!

The strange thing is when you are looking for something specific you find other items that you didn't even realise were missing!

During my hunt I found the wedding cupcake and buttercream recipes.  I put them on yet another pile ready for filing, possibly never to be seen again!

I stood, I thought, I retraced my steps, well the thousand steps I have taken since the GP scribbled out the blood test form and like Hercule Poirot I narrowed my search down.  I picked up my jewellery box and spied a plastic A4 envelope hiding underneath.  It looked promising.  Not only was the wayward blood test form folded within, it shared the space with maps of England and other non-related bits and bobs.  I have no idea why. What possessed me?  I will probably never know.

I rejoiced in my victory and sighed as I checked the time.  It was long after my bedtime and a busy day beckoned me tomorrow.

I make a mental note to file (in my four drawer filing cabinet) important papers from now on.  I then pick up a pile of papers and shove them in the bottom of my stationery cupboard.  I sigh and get ready for bed.

I could do with my own filing clerk, possibly a secretary?  Ridiculous, I know, but my mind wanders and thinks about an app to help people like me!  I already have a name for it and a marketing strategy; I just don't know how to create my, 'De-Clutter app.'

 

Fundraising

Life is full of twists and turns, mostly when you're not prepared; definitely when you're not looking!  I thought long and hard about my fundraising efforts in my not so short life.  I have flashbacks of myself as a young woman standing on a street corner rattling a tin for the Asthma Foundation.  Both kids suffered ongoing asthma from a very young age.  Melanie was in Princess Margaret Children's Hospital over forty times until she was twelve, twice in ICU.  I know I rattled that tin at least once, I am not so sure about the following year.

I have cooked umpteen cup-cakes for school fetes and manned the stalls with passionate vigour! I have been involved in car washes for church fundraising, more cake stalls, quiz nights, movie nights and the list goes on.

In 2007 I joined an inspired group of walkers at my work.  We completed the 12kms City to Surf fundraiser at the end of August to raise funds for ACTIV.  Was this the beginning of my passion for walking?

I joined a local Lions Club in 2009 and became involved in fundraising once again.  Fortunately a lot of their fundraising came from a weekly flea market (mainly second hand goods) but there was always something to get excited about.

The not for profit organisation I worked for in the last few years held a few fundraisers.  The Easter Fair at the local river park was the biggest.  I encouraged volunteers to fill shifts, writing their names on my roster sheet.  They willingly filled countless balloons with helium, sold handmade crafts and advertised our role in the local community.  It was fun on the day but a lot of hard work beforehand.  The end result made all the preparation worth-while.

Next year I am on a fundraiser of a lifetime.  I am not doing it alone.  Big sister and possibly little sister and I are walking across England (yes, not a typing mistake) from west to east.  Next July we are booked to complete the Wainwright Walk, a staggering 304km walk through the beautiful Lake District, over rugged mountainous hills to the Yorkshire Moors and finally to Robin Hood Bay on the east coast. 

Big sister says she has longed to complete the walk for a few years and decided to make it so much more by fundraising for Huntington's WA.  After hearing her plan, I quipped, "Can I come too?" 

The stage was set, the preparation wheel is turning.  The training has begun!
Today with a slight patter of rain we began our first training walk in Whiteman's Park, a large park reserve in Perth's northern suburbs. 

Big sister had her map ready; we had our hiking gear and poles at the correct height.  Off we went but no matter how many times we consulted our printed map we ended up going the wrong way!  We laughed hysterically as we realised we were just going around in circles!  After walking for two hours we headed back to the car park.

Big sister and I are both very grateful we have booked a guided walk next year.  Otherwise we shudder at the thought of where we could end up!

Our first hike together

 

The Promise

A marriage proposal is a promise between two. 

A few weeks ago Dustin proposed to his girlfriend Grace and she was happy to accept.  Last week they held a lunch at a local restaurant to celebrate their commitment.  It had me thinking about what love means today.  No one bats an eyelid when a couple announce they are going to move in together.  Many stay together for years, sometimes forever without taking it further.
 
On the other hand when a marriage proposal is offered and accepted the world becomes a crazy place.  Whether the planned wedding is large and expensive or small and homely there are ongoing plans and decisions to be made.
A down to earth couple suddenly becomes engrossed in everything white, romantic and grossly overpriced! 

My memory takes a sideways slant as I relive our time in Beijing in 2009.   A young Chinese couple were photographed in the Hutong area in full western bridal attire.  I asked our guide where they would have married.  In a temple, a church or a garden setting?   He replied they would be getting married in a few days, it is their tradition to have their photos taken beforehand!  An interesting twist to a western tradition. 

Merv and I will be celebrating our 38th anniversary later this year.  Our wedding was small and personable.  I hired my wedding dress to reduce costs.  There is nothing I regret. Even our not so glamorous honeymoon.  We travelled to the south west staying in cheap hotels and finished in a two man tent for a night.  Merv began wheezing due to the cold night air and we spent most of the night sitting in the car.  Fortunately his asthma disappeared a few years later!

My nephew is soon to marry his bride in a 'pop -up' wedding.  A glammed up registry office wedding at a fraction of the cost of many weddings.  I like the idea.  It provides a beautifully memorable ceremony which allow the couple to put their hard earned money to life's necessities. My two sisters and I are flying interstate to attend.  Pop up weddings are new to Australia and we are excited to witness our nephew's wedding.  Will the pop up just be a fad?  Time will tell.  Marriage itself will never be a fad.  It is here to stay, to enjoy and to remember.

To Tell or Not

Everyone laughed when Paul Hogan in the movie Crocodile Dundee responded to the question of counselling.  He flippantly remarked in his home town in outback Australia if you have a problem you tell Wally and he tells everyone in town. This brings it out in the open, and results in no more problem!  I had always agreed with this remark.  That was until four years ago.

I first saw a counsellor in 2010 after Merv became ill.  I could not stop crying.  I cried throughout the day, I cried at work, I cried at night.  I cried for four months and then I stopped.  I haven't cried since.  Not because the counsellor, 'fixed me' but with her help I was able to deal with my suddenly changed life in a less emotional way.

We all knew one day Merv would become ill.  He was tested almost twenty years ago when we found out he was HD positive.  As early as 2008 I could see the writing on the wall, there were signs.  I pretended he would just keep on going, but he didn't.  He became unwell and I fell apart.

A counsellor was suggested and I accepted because I suddenly found myself unable to cope.  Kate was lovely.  I thought at first she was too young, she was about thirty.  She seemed so young, what did she know?  Kate turned out to be an angel.  She listened to me as I cried; she gave me strategies to make life bearable again.  She helped me through my trauma.

Kate applied for another job elsewhere and soon she was gone.  I had stopped crying and putting her strategies to work I carried on with life, but I was sad to see her go.

Four years later during one of Merv's many service reviews the question was again raised.  Do I want counselling?  I took some time to think about it.  Much has changed in Merv's life in the last four years.  It's time to talk about it.

Yesterday I met with another counsellor.  Just like Kate, she was calming, listened well and gave me feedback.  I didn't cry.  I will see her again.

It is good to talk with family and friends about my life and receive their love and support.  I can't do without it. 

My counsellor can see things which I can't and maybe others close to me find difficult to share.

                                                              

Sassy Subi

This morning I took the train to Subiaco to catch up with a friend.  We met in a cosy coffee shop, taking possession of a corner table as the warming winter sun danced upon our table. We chatted about our lives, our dreams, our kids, even our coffee while the streams of people outside walked, sauntered or beat the footpath to their next stop. Our conversation entertained us. We enjoyed our coffee and shared half a raspberry and white chocolate muffin of mammoth proportions.  Our hour together passed quickly and we parted promising to do it all over again sometime in the future.


Sassy Subiaco

I had promised myself a walk along Rokeby Road in the warm winter sun.  The main shopping precinct in Subiaco.  In my youth (oh so long ago) Subiaco was a poor cousin of the affluent surrounding suburbs.  Years later an influx of younger people, the well known yuppie population bought numerous brick or weatherboard Victorian houses, renovated them into lustre gems and Subiaco was reborn with a much improved price tag.  One real estate
 agent advertises Subiaco as;
'Stylish Subiaco - Subi to her friends - is a sassy inner-city neighbourhood just west of downtown Perth.' 

Along with the new price tag came multitudes of villas, townhouses and apartments.  Once boring Subiaco was reborn.  While Rokeby Road is no Rodeo Drive it boasts a eclectic range of boutiques, cafes, book shops and quirky shop fronts.  



My bargain buy

I was drawn into one of the quirky shops which appeared to have been invaded by anyone and everyone passing by.  It was like a Myer Christmas Sale!  The biggest surprise of all was this overflowing shop is a well-known second hand store, Good Sammy's.
Thinking it was overrun by grey haired grannies I did a double take.  A young girl on school holidays was rummaging through a cardboard box as she was calling to her friend.  She pulled out a tiny green bikini with great delight.  A young man held up a beige overcoat for his girlfriend's approval.  There were young men everywhere carefully selecting their second chance clothes. Mothers and their children (its school holidays) rummaged through the boxed games, bangles and jewellery.  I was caught up in the excitement and found myself rummaging through the handbags.  Mel goes through a handbag every six months.  I have bought her handbags worth over $100 and they last no longer.  I find an amazing brand new specimen.  I check the price tag and rejoice.  It is $5.50!  A great bargain.  I check out a few racks of clothing but find nothing which inspires me.  I pay for my treasured find and congratulate myself.  Others line up with their spoils.

I am surprised, this most ordinary shop is not only smack bang in the middle of Rokeby Road but it is teaming with bargain hunters! 

I continue on my walk reaching the end of this iconic road.  I cross over to the other side and head back the way I came.  I pause at the old screen door of Ogilvie's Café and enter with expectation.  I have been here before and delight at the French Provincial charm, the wooden tables, jars of jams and chutney and the displays of aged and charming treasures.  I order yet another coffee and a chicken and salad baguette. I sit at a small wooden table and read today's paper as I await my freshly made coffee.  All thoughts of my otherwise stressful life depart while I relax and enjoy my lunch.

My day is almost complete and I make my way back home.   It has been a day to remember. 




Quirky Ogilvie Café

 

Rejoicing the Voice

Last Monday evening the ABC Australian Story ran an interview on Australian singing artist Megan Washington.  It wasn't about her singing, it was about her stutter.  It hit a chord.  I know the horror and the anguish of stuttering.

The program interviewed relatives, friends and people with whom she had worked.  A few of them, like Adam Hills from Spicks and Specks remarked they were unaware she stuttered. 

In 2006 I told my son I was going to a speech therapist for my stutter he looked at me in complete surprise and said, "you don't stutter mum."  Stuttering rarely happened to me in the comfort of my own home but I was still surprised at his comment.

From my late teens I had winged clear speech at times and other times I would contort myself in spitting out the sounds which so often evaded me.  Many times I said nothing because it was just too hard.  Megan in her interview talked about the time she was conversing with another stutterer, I also had that experience.  I couldn't become too close to her, it was just too difficult to have a conversation.

My life had suddenly turned in 2006 and I was working toward employment as a community service coordinator.  It meant I had to talk to staff and clients.  I wanted to talk without blurting, stammering or tying myself in knots.  I have attended social gatherings where I came across people who did not know how to deal with my stutter and made fun of me and others who carefully avoided me.  In my work experience as I stuttered over the phone or face to face the employer or client allowed me my speech performance as if it didn’t occur.  Sometimes they just added the words I was trying so hard to say.  I am never sure if that made me feel better but at times I was relieved.

My community services course was due to finish soon and I was looking for employment in my chosen field.  It was time.

I gathered my confidence and made an appointment with a middle aged, matronly speech therapist.  She was surprised I was almost fifty and had never had speech therapy before.  She asked me what it was like at school.  I could not remember stuttering as a child only in late high school.  She asked me questions I couldn't answer.  I returned home, thought about what she had said and asked my mother.  

I already knew all the answers but I was blind to them.  When I was sixteen I became very ill, so ill I could not stand, I had no energy to open my presents at Christmas (just after I got sick).  My big sister thought I was going to die.  When I finally looked in the bathroom mirror my eyes were hollow and I looked like ‘death warmed up’.  Three months later most of my hair fell out and I needed iron and thyroid tablets to regain my health.  I don't remember visiting the doctor but my mother said she was told my brain was going too fast and it affected my speech!  Goodness me, I didn't know whether to laugh or cry.  Upon returning to the speech therapist, she simply said, 'trauma.'  She gave me smooth speech exercises to do.  It didn't seem to make any difference so Google and I did some research.

Desperate situations call for desperate measures and desperate I was!  I filled in the form, gave away my credit card number and pressed the 'buy' button.  It was done.  I waited in anticipation never believing it would actually help. 

A week or so later it arrived in a brown paper parcel.  It arrived from oversees and cost me, from memory about $30.  I was hesitant to use it, but what is life without a risk or two?  Being a Christian was hypnotherapy safe to use?  I didn't know but I was going to try it.

I opened my CD player, placed the CD in and pressed the play button.  I listened to the whole recording while I sat on my kitchen chair.  It talked about what caused the stuttering to happen.  I had my answer.  I revisited my illness and my embarrassment of losing my hair and the fear of losing control of my health and independence during my illness.  The illness only lasted a couple of weeks but it had devastating results.

The CD was to be played at night before sleeping.  Every night I put it on, rarely was I awake when it finished. 

Then the most amazing and unexpected thing happened.  I didn't grow two heads or showed disturbing behaviour  but I could connect words together without stuttering for sentences at a time.  I was hooked.  Some days I would play the CD at home, I would recount my trauma, I would give it away and not take it back.  After three months I didn't use the CD anymore, I was almost stutter free.  Sometime later I had what I thought was a relapse and out came the CD once again.  I listened to it again for a week.  Since then it lives in my top drawer, I haven't played it for seven years but I know where it is.

Megan Washington's story brought me back to my days of stuttering.  This week I listened to myself, how do I speak?  I was surprised there is still a slight stutter in my voice but it is infrequent.  If you asked me I would say I am fluent in my speech.  I am never afraid to speak up because I know I will no longer embarrass myself, or others.  It took me over thirty years to do something about my stutter, in hindsight, it was too long.