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)