Thursday, June 30, 2016

The Room of Multiple System Atrophy

The Room

I am a room. I am a space where people dwell. Rooms don’t speak.  I have not been given the privilege to speak with an audible voice, express thoughts or emotions.  Yet, I have a story to tell. So, if I DID have a voice – there’s quite a few things that I would like to say. 


The Room


I guess by physical appearances I'm quite an ordinary room really: with one oversized couch in earthy tones; two handsome greenish arm chairs; a recliner chair; a coffee table on a greyish coloured carpet;  a cupboard that houses the TV; a lamp; a few occasional tables and a few pictures on the wall. My family is quite ordinary too and occupies me on a daily basis for everyday activities. In the evenings Strictly Come Dancing, Britain’s got Talent, cooking, Rugby and Discovery are still some of the favourite channels watched on the box. My décor was personally done by the lady of the house – rather tastefully classic and clutter free.  Her name is Sonja.

In winter I get quite cosy when the fire is lit, especially when we have an indoor barbecue.  In South Africa, where I dwell, they call it a braai.  It’s rather a sociable affair with much laughter and generous amounts of wine. Through the years I’ve seen people gather on birthdays, anniversaries and family dinners. Happy occasions. The view to the garden is quite charming through the double doors - especially in Spring.  It is evident that the garden happened as the result of a passionate gardener (i.e. the lady of the house, Sonja).

An ordinary room I was – observing everyday life of an ordinary family.  Quite content with my little life as The Room – here in the Strand, South Africa. Then one day things changed.

In 2010 Multiple System Atrophy (MSA) moved into this room and chose the lady of the house (Sonja) as its host.  (Multiple System Atrophy (MSA)* is a progressive brain disorder caused by loss of nerve cells in specific areas of the brain).

Along with it came some very bad emotions who moved in as well, making themselves very comfortable on the big couch, the chairs, the floor – even draped themselves over the coffee table and pictures as well.  The view to the garden looked drab and bleary.  MSA is rather cruel – it spreads itself, affecting the entire family. My family became miserable, anxious, angry and frustrated.  My favourite emotions, Faith and Hope had been asked to leave.  For quite a while sadness, unacceptance and denial clung to my walls. They refused to budge.  Discontent and gloom squeezed themselves into the already crowded room, while laughter and happiness took a long sabbatical. As a room I felt so helpless.  There was nothing I could do. Except wait and hope.

Over time – and I’ll be honest - it did take quite a while, things gradually improved.  It felt like forever before the cloud of sadness lifted.  Understanding and Acceptance kept knocking on that door overlooking the garden until they were eventually let in.  Hope, who had no intention of being left out in the cold, also snuck in one day and now cling to my walls.  Misery, along with Anxiety, Self-pity, Frustration, Sadness and Anger were given the boot – one by one they all left. I’m quite a contented room again and everyone is happy - most of the time.   Things settled into a new kind of normalish rhythm for my family – with MSA as the new permanent resident.  The family had already come a long way, but still had to figure how to embrace the changes that was inevitable. 

Religion per se has not been given the privilege of a specific chair within The Room, however, Faith and Hope occupy rather good seats and the couch has been reserved for Love. There have been some distorted opinions on miracles voiced in this space. Some thought there must be an absence of strong faith and fervently offered prayer for miraculous healing. Much discussion had taken place among church elders, theologians, priests, believers as well as sceptics – all in this room – on several occasions.   The consensus is that there are different kind of miracles – and physical healing is just one kind of healing.  To be healed spiritually and emotionally – that is a miracle too.  A big one.  And this latter miracle have come to dwell here and have changed things forever. 

Many visitors have been to visit since Multiple System Atrophy moved in.  Old friends, family and acquaintances bring cheer and gifts.  New wonderful friendships have been made here – with people who would otherwise not have visited – had it not been for MSA taking up occupancy here.  Visitors linger and chat about all kinds of things and most of the time forget about their silly little worries that wait for them at home.  They are fascinated to find someone with MSA living at peace.  The lady of the house, (Sonja), – she hasn’t been able to walk for a very long time and lies there in that recliner chair like a doll most of the time - being cared for hand and foot.  Her speech has become a whisper and you have to sit real close and concentrate to hear and understand.  Even the ability to hold a cup or blow the whistle to call a carer to tend to her needs is gone. Yet she manages smiles and whispers kind words.

Visitors leave with a gift every time.  Sometimes it is a gift of Hope.  Sometimes a gift of Faith.  Sometimes a gift of Love.  Sometimes they hit the jackpot and leave with gifts of all three. 

 “Three things will last forever—faith, hope, and love—and the greatest of these is love. - 1 Corinthians 13 v 13”.

There had been so many wonderful visits– really special ones and too many to mention right now.  Perhaps just this one.

The most recent visit was by a newly ordained Catholic Priest.  An Italian Catholic Priest. A good-looking young Italian Priest … with a guitar. Not only did he bring a loving message and prayers – the dear man sang!  The two ladies – the lady of the house with MSA (Sonja) and her crazy-ish curly haired friend felt  blessed with words of wisdom and grace.

After the visit the two friends reflected and giggled at the thought of perhaps considering to convert to Catholicism so that they can go to confession with Father Francesco of course.  They even discussed redesigning the Confession Room to fit all three of them in.  They hope that the dear man will visit again soon.

All these things have contributed to the fact that I am no longer just an ordinary room. My decor is still very much the same but believe me, I've lost the title ordinary and become rather extraordinary, unusual, blessed and sometimes quite fabulous.

So, had I been given a voice - I'd tell you all these things.  











(Written by Karin Holtzhausen)





20 comments:

  1. Moving article and also uplifting at the same time Sending love

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    1. Thank you for your kind comment.

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  2. Beautiful, so so very moving...

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  3. So special...thanks for letting us into this room...

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  4. Beautifully written. Beautiful souls

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  5. What a touching & fluid article. I feel as though I've physically sat, chatted & enjoyed time in this room w Sonja.

    I met Sonja through FB & know because I just know, Sonja was never just ordinary. She is a gift from heaven.
    It's a blessings & honor to be Sonja's friend.

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    1. Thank you for these kind words Cheryl.

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  6. 'n Baie besondere vertelling van Sonja se reis met MSA. Mag geloof,hoop en liefde altyd die hart wees van hierdie nie so gewone kamer wat gevul is met spesiale mense wees. Baie liefde. Magriet.

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  7. Thank you for the views and the comments that have streamed in from Facebook, this blog, email and phone and have read most of them to Sonja and have promised her that I would post them all here -a part from ones above. Thank you.

    Pat Stametelos: Ek het nie woorde nie, net trane. Hoe min weet ons van mekaar. Wat julle op 'n daaglikse basis moet deurgaan kan ek net raai. Ek prys God vir die opstanding en sien uit daarna met my hele hart. Gee Sonja 'n kus van my, dis seker die naaste wat ek aan haar sal kom. Maar ek sal haar in my gebede opdra aan haar Maker wat na alle gebede luister - en bid dat Hy haar rustigheid in die plek van angs gee, vertroosting in die plek van trane - en ek bid vir jou Karin. Mense soos jy is dun gesaai, ek wens ek kon jou bottel en op my rak sit vir die dag wat ek so iemand nodig het. Slaap lekker my maat, jy is geseen onder die vroue en wees net dáár vir Sonja.♥♥ Dankie dat jy jou stukkie hart met my gedeel het – Pat.

    Holly Wortman: Oh my word so beautiful and written by you. Thank u for that!

    Dawn Pieterse: So moving - totally beautifully narrated! Thank you!

    Wendy Craig: Read your article, excellent,

    Lucy Kilfoil: I loved your blog. You are extremely talented and a wonderful friend to Sonya. Please give her my best wishes and keep up your wonderful work. Xxx

    Lynette Knott: Read Sonja's story...so well written Karin, but it breaks my heart.

    Carol Zoutendyk: This is very special. Sonja is so brave. You two have a wonderful friendship.

    Richard Hallward: Re your MSA work, very impressive, awful disease. Admire people who can devote themselves to such work and find fulfilment, and not let it bring them down.

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  8. Liebet Jooste: The Room: wow ek het vreeslik gesit en huil terwyl daai video gewys het. En so mooi geskryf.

    Eugene Els: Wow. Pragtige vertolking / insig m.b.t. MSA. Dit blyk Sonja se Vriendekring is nou haar Oorlewingskring. Mooi om te sien hoe mense saamstaan en haar ondersteun.

    Marguerite Bester: So mooi geskryf Karin! Xx

    Henry Geldenhuys: Sterkte vir Sonja

    Mark Beeton: very well written and touching. Makes you think that's for sure and count your blessings. Thanks for sharing

    Elize van der Westhuizen: So pragtig geskryf Karin. Melkbosliefde.

    Linette McDonald: Jy is so n wonderlike vriendin vir Sonja.

    Allison Stevens: I'm nearly better. Thank the Lord! Thank you for the MSA link. Well written piece.

    Jen Durose: Karen that is beautiful , your friend must feel clothed in Gods love delivered by His faithful servants X

    Ingrid van Niekerk: Uitstekend geskryf Karin.

    Willy Strang: you are special to care for Sonja the way you do. Give her a hug for me and she is always in my thoughts.

    Brenda Anderson: I did indeed read Sonja's blog. Aletta also e mailed it to me. Very good.

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  9. Nola Dippenaar: what an extraordinary beautiful piece you have written - so touching, so sad and so amazingly expressed in such an unique way! Have such admiration for your insight, talent and deep empathy! Thank you, thank you! Lots of love.

    Brian Wilkinson: Lovely! Yes healing does take many forms. Peace.

    Aletta Steyl: Thank you for sharing that with me, so humbling! Have forwarded onto some contacts, everybody needs to read this message from Sonja.

    Ermanno Aiello: What a beautiful, beautiful tale. If only walls could talk !! Much love.

    Wouter le Roux: Telkens as jy iets plaas oor Sonja dan besef ek hoe besonders die twee van julle is, sy vir haar grasie en jy vir die liefde wat jy vir haar het. Sy ken my nie,maar dra my groete aan haar oor. Ek is nie juis ʼn mens vir woorde nie,so soms kom ek maar stomp oor,maar die twee van julle help my om ook my lot te verwerk.

    Rudyard Harrison: Thank you for the sharing Karin! Warm regards.

    Gesina Spangenberg: Het nou lekker gelees. En sing daai Pater lekker! Sonja – wat ‘n groot genade dat sy geestelik so gegroei het.

    Marianne Gonzales: Pragtig gedoen my maat.

    Linda Erlank: So baie mooi geskryf. Jy het ‘n ongelooflike talent. Sê asb vir Sonja ons stuur baie liefde.

    Emilene Ferreira: Wonderlike blogpost! Sommer lekker bewoeë geraak. Gee vir haar ‘n groot drukkie van ons af (o, en sommer vir jou ook). X

    Annette du Toit: So mooi geskryf.

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  10. Kathryn Dowling: Karin, you really are a fabulous writer! I loved this 'story' and I now feel as if I've actually visited Sonja and the family there! Converting looks like quite an idea.

    Edelweiss Hankey: So very special Karin and so beautifully written.
    Sometimes people forget we are multi-dimensional beings and that healing can happen in any of those levels. You are so lucky to have one another.

    Liliano De Vivo: Thank you for the lovely and moving story of your "room" I hope it continues to bring you peace and joy.

    Lida Visagie: Karin hoe mooi verwoord jy nie die emosies rondom MSA nie. Jy maak dit "verstaanbaar" vir ons wat nog net die teorie ken. Jy s n seen vir ander. Mag jy en Sonja nog baie saggies saam giggel. Mag Sonja vasklou aan hoop, geloof en liefde.

    Linette McDonald Ras: Beter kon jy dit nie gestel het nie. Ons as gesin en my ma het deur dieselfde emosies gegaan. Aag seker nog steeds. Vandat my ma se stem stil geword het dra elkeen maar sy seer op sy eie manier. Jy is so n goeie vriendin vir Sonja. Liefde en groete.

    Douwleen Bredenhann: Karin hierdie is 'n ongelooflike skrywe deur jou. Afgesien van die feit dat dit 'n hartroerende vertelling is, wys dit ook wat 'n uitstaande skrywer jy is. Dankie hiervoor. Baie liefde vir jou en Sonja x

    Laurette van der Merwe: Beautifully written and so incredibly true.

    Ritjie Schouppe-Moons: Sonja Human van Rhyn, is the most inspiring MSA patient I know : MSA is a lonely journey - and a journey a patient has difficulty to explain to others so that they can really understand. We can't cure each other, but I believe we can support each other, reach out to one another, and one day, there will be a cure! Great Story about Sonja’s room.

    R Jeffrey Allenton: What an awesome writing and an inspiration to all of us with MSA. If only these walls could talk, oh what stories they could tell. Prayers, blessings, and love to you Sonja. God bless.

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  11. Bob Summers: This post "The Room" is on my friend, Sonja's page. Sonja lives in South Africa and has multi Systems Atrophy. The article caused me to reflect back to "The Room" in my house which is full of non forgotten memories related to the msa journey as a caregiver for my wife. I hope you take time to read this post. Many of you will relate no matter the disease or adversity. "If Walls Could Talk", what life stories they would tell! Make your weekend a GREAT ONE! G
    od Bless!
    Bob

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  12. Wow, what a beautifully written story. I am caregiver to a mum with MSA who is probably at a similar stage. Gives some beautiful insight. Thanks for sharing.
    Best wishes from Sydney Australia (ex South Arica - JHB)

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