THROUGH THE FIRE- MULTIPLE SYSTEM ATROPHY IN SOUTH AFRICA

I dedicate this blog to my friends, Ermanno Aiello, Paul Barnard, and Hugh Holtzhausen, whom have given me spiritual guidance since my diagnosis. Thank you for keeping me in your prayers.

I am using the photos of my talented friend, Laurette van der Merwe, to tell my story. Thank you Laurette for giving me the freedom to choose from your vast library of beautiful photos.

Some words are mine, most are directly from His Word.

On the 16th of April 2011 a controlled fire got out of hand in the wind and very quickly was blown out of control.

After being diagnosed with MSA on 6 September 2010 I became overwhelmed by fear. There was no getting away from this consuming fire of MSA. No treatment, no cure.

Psalm 116:3

The cords of death entangled me, the anguish of the grave came over me; I was overcome by distress and sorrow.

Our beautiful valley was filled with dark clouds of suffocating smoke. Windows and doors had to be closed  for the soot that rained down for days. It looked like an end of the world scene; Armageddon had arrived.

My life was full of darkness, I was without hope. In that first year my prayer was mostly a desperate plea; “Please help me God.” 

Jonah 2:2

In my distress I called to the Lord, and He answered me. From deep in the realm of the dead I called for help, and You listened to my cry.

1 John 1:5

God is Light; in Him there is no darkness at all.

Some animals tried to flee from the fire to safety.

Where would I find a safe place to hide?

Psalm 32:7

You are my hiding place; You will protect me from trouble and surround me with songs of deliverance.

Firefighting units from all over were called in to help control the fire, which was threatening properties and farms. The sound of water-carrying helicopters was heard for days.

Who would come to rescue me?

2 Timothy 4:18

The Lord will rescue me from every evil attack and will bring me safely to His Heavenly Kingdom.

Many areas were gutted by the fire. Especially our beautiful indigenous fynbos on the slopes of our mountain in the Helderberg Nature Reserve. The reserve had been a favourite place since my teenage years. A group of us used to cycle there to sit and chat in the shade of the trees. When our boys were small, we often walked with them, and when they tired, they would hitch a ride on their Dad's shoulders. As adults they walked ahead of their ever lagging Mom up there. Seeing our beloved mountain reserve engulfed by fire was heart breaking.

Where would I find the courage to rise out of the ashes of my life?

Where would life lead from here?

Deutronomony 31:6  

Be strong and courageous. Do not be afraid or terrified because of them (MSA), for the LORD your God goes with you; He will never leave you nor forsake you.

God had taken my hand long before I became aware of Him, to walk with me through the fire. He does so every day.

Isaiah 43:2b

When you walk through the fire, you will not be burned, the flames will not set you ablaze.

Out of the burnt landscape of my life l was reborn. As on the mountain, signs of new growth began to appear.

2 Corinthians 5:17

Therefore, if anyone is in Christ, the new Creation has come: The old has gone, the new is here!

I had found hope again.

1 Peter 1:3

Praise be to the God and Father of our Lord Jesus Christ! In His great mercy He has given us new birth into a living hope through the resurrection of Jesus Christ from the dead.

Through His promises I found peace in the knowledge that I am in His care.

Matthew 6:26-30 abbreviated

26: Look at the birds of the air; they do not sow or reap or store away in barns, and yet your heavenly Father feeds them. Are you not much more valuable than they?

 See how the flowers of the field grow. They do not labour or spin.

30: If that is how God clothes the grass of the field, which is here today and tomorrow is thrown into the fire, will He not much more clothe you—you of little faith?

 

Spring came, and on the 28th of October of that year Laurette and I had the privilege to travel up the mountain with two conservationists of the reserve in their Landy. I was amazed that they had welcomed the fire. It not only rid the veld of dead and bushy growth, some seeds, in fact, need the heat of a fire to germinate. The veld had recovered and flowers, especially my favourite Watsonias, were in full bloom. A most glorious sight.

My trust is in Him, who knows what He has planned for my life.

Jeremiah 29:11

For I know the plans I have for you, declares the Lord, plans to prosper you and not to harm you, plans to give you hope and a future.

2 Corinthians 5:1

For we know that if the earthly tent we live in is destroyed, we have a building from God, an eternal house in Heaven, not built by human hands.

Living fearlessly is a joy.

MY PILGRIMAGE - MSA IN SOUTH AFRICA

Dedicated to my friends and loved ones, and my MSA buddies.

Phooto by Sissi Karin Holtzhausen

The road is difficult, full of hills and valleys, a desolate desert where many sorrows lurk. I have been privileged to meet many fellow travellers on this road of adversity.

Some have gone ahead. They have dug wells where I can quench my thirst (for knowledge). They have planted oases (of wisdom) where I find peace and momentary rest. They are precious jewels who pave my way with wisdom-arrows to point me in the right direction.

Photo taken by my dear friend Susan on the Camino in 2012

They inspire me with the courage with which they travel along the precipitous ledges. With the endurance of rock climbers, they hang on the rocks despite the depth of the valley lurking below.

Some have travelled the road of adversity with a family member, a friend. They console me with kindness that comes from a deeper understanding. Loyal friends are supportive angels (surely sent by God) on my pilgrimage.

I get hope from those who cope despite being severely challenged. They give me hope that we too will make it through the darkness. 

Some provide me with breathtaking opportunities of joy.

The currant cover of Art for MSA by Liebet Marie Jooste.The art on this page inspires me and is a continual source of joy.

Sitting amongst the flowers on a joy-filled outing with Sissi.

Through this pilgrimage I have been purified of judgement. I have walked the way of forgiveness. In the dark valleys I grow upward towards The Light. I  have found a place the hide from the storms; a safe Rock.

From a momentary height I glimpse the Life-giving river that wend its way ahead. I turn around to see the many turns, hills, and valleys of the road that brought me here. Those hills seem small and distant. This is a pilgrimage. The valley of darkness is a temporary place.  Not my final destination. I press on towards The Eternal Life-giving river ahead.

2 Cor 4: 16-18Therefore we do not lose heart. Though outwardly we are wasting away, yet inwardly we are being renewed day by day. For our light and momentary troubles are achieving for us an eternal glory that far outweighs them all. So we fix our eyes not on what is seen, but on what is unseen, since what is seen is temporary, but what is unseen is eternal.

TOGETHER WE CAN - MSA Awareness - Walk or Cycle & light a Candle for MSA - 3 October 2014

The recent Walk or Cycle & Light a candle for MSA, 3 October 2014, took place for the fourth time at Strand beach, in South Africa. Below is Sonja's speech which she asked Hugh to read on her behalf, adding a few thoughts of his own.  But let's start with a picture - things always start well with a great picture I reckon.  Here we all are, ready to set off with Sonja on our 4th Walk for MSA - here in South Africa.

2014 - 3 October.  4th MSA Walk for MSA Awareness

Sonja's speech:

TOGETHER WE CAN

Because my left leg tends to out-perform me when I speak in public, I let my friend, Hugh Holtzhausen, introduce himself and thank him for reading my speech on my behalf.

Hugh says:  

Hi everybody and welcome.

I would just like to open with a short prayer.

Dear Lord,

We thank you for this wonderful day and we thank you that you have brought us all safely together here today.

We thank you for the blessing of Sonja as she ministers her faith and positive attitude to all of us.

We ask that Sonja can lean on you as you guide her to fulfil the plans you have for her till Your will is done.

We pray this in the name of our saviour Jesus Christ.

Amen.

Every year it is my pleasure to present Sonja’ words to all of you.

Everytime I read Sonjas’ blog or her speech I choke up so be prepared for some pauses while I collect myself again.  But please do not mistake my emotion for sorrow for Sonja.  It is sorrow for you and me that take life and movement so much for granted and who complain about such petty things when compared to what Sonja and all sufferers of M.S.A. and other debilitating diseases have to go through. 

Sonja's speech continues:

A warm welcome and thank you to all who came out to support us today. How we have grown in numbers from our first humble effort in 2011! Numbers are however of no consequence when measured against those who have become our friends over the years. Thank you to the McDonalds, the other MSA family here in the Strand, who honour us with their support every year.  

This year we extended the invitation to others with rare disorders. It thus gives me great pleasure to welcome the following special guests; Nanette Fourie and her husband Neil Malan. Nanette has Charcot Marie Tooth Syndrome, and this brave lady is one of the artists who contributed to our project, Art for MSA. I know how difficult it must have been for you to get here, and therefore appreciate it that you found a way to roll along with us today. Thank you.

This is the fourth year we are blessed to reach out and hold hands with others across the globe through this action on international MSA Day, called; Walk or Cycle & light a Candle for MSA . This affords us an incredible sense of oneness with patients and their families around the world. The aim today is to, together with others worldwide, cover the distance around the globe. The Belgium lady, Ritje Schouppe-Moons, who started this awareness project, has the following quote on her website;

“A journey of a thousand miles begins with a single step”. Lau Tzu.

I believe all steps taken today will eventually lead, not only to better understanding of such disorders, but eventually to the ultimate goal; a cure for MSA and similar disorders.

As if being diagnosed with a rare disease is not enough, those fortunate to have medical insurance soon find themselves coming up against a wall created by law and misused as a loop hole medical aids; our rare conditions are not on the list of chronic conditions, and therefore we cannot get any of our very necessary medication registered as chronic. This leads to frustration when you most need their support. I believe in this country I only hope is for all of those with rare disorders to form a united front to get the law changed. This is the reason I extended today’s invitation to others with rare conditions.

I have little chance to achieve anything by myself, but with the united help of my friends, and your friends, and their friends, who knows what we can achieve! 
   

A recent big birthday, as well the fact the it is now four years since my diagnosis, caused me to reflect on the last couple of years to see not only the struggle, but also the many blessings it brought. I praise and thank the Lord, whose plan is always best.

I thank my Sissi, Karin Holtzhausen, for organising this event, and my friend Susan Albertyn for all her help. Laurette, I thank you for recording my life through your beautiful photography. Thank you to my husband Johnny, my loyal wingman. This disorder is not mine alone, but has become his and my family’s too. 

Thank you to the staff of Casa del Sol for once again hosting our event. Thank you to Johan Cillie of Easy Drive Western Cape  for the great job done on my wheelchair accessible vehicle. Without the SissiBissi I wouldn't be here today.

There are many friends of friends here today. People whom I’ve never met. Please come and introduce yourself if you’d like to and tell me what inspired you to support us today. Don’t hesitate to ask any questions about MSA;  I am, through God, more than my physical failing body.

You are invited to come and light a candle for all patients worldwide as well as those who have lost their  battle in the past. To make admin easier for the staff here, we’ll send our tin around for coffee money , and Johnny will settle the account. Karin also organised some cake, so please help yourself.  It  us our thank you treat to you.

Thank you, once again, for your support.  

During the walk.  More photo's lower down

Karin continues with blog article, reflecting on the day:

It was, yet again, another good day.  Every year we stand amazed at the people that arrive to support Sonja and this year was no exception.  

Four years ago, on 20 September 2011 I composed a little email which Sonja and I sent to friends.  It began like this:

"Monday, October 3, 2011. 10.00 am – 12.00 pm.  On this day it is World MSA Day - Light a Candle / Walk a Mile. 

Most of you know that my friend Sonja van Rhyn has a rare and incurable condition called MSA and we have created a page and a blog as part of an awareness campaign.

I'm talking Sonja for a walk along Strand Beach on World MSA day.  Would you care to join us?"

We nervously joked with each other - what if nobody came?  In the rest of the world MSA Awareness campaigns were huge, well supported and recognized far and wide. In South Africa if you typed in Multiple System Atrophy even google shrugged its shoulders. Perhaps Sonja can remember better than me why we pursued - because at times we felt a little silly waving this unknown flag of awareness.  Why should we carry on?  Questions and doubt threatened to cloud our enthusiasm. What if we look crazy?  What if it's just the two of us?  What if it rains?  What if it flops? What if, what if, what if?  With all these doubts dominating our thoughts, I have no idea why we carried on but I'm certainly glad we did.  Anyway - we walked our first walk, about 30 altogether.

We have come a long way since then.  Although we were about between 60 and 70 (here in the Strand) this year - we had another group walking in Gauteng as well as another in Kwa-zulu Natal - bringing our numbers to over a 100.
  
Numbers are important - but in my opinion this is by no means a true reflection number-wise of who have been reached over the past four years and I would not be able to give you a proper figure at all. What I CAN tell you with certainty though, is that we probably have no idea how many hundreds of people have been reached and touched in some way or other, since these humble beginnings of awareness. Sonja's blog post after last year's walk, perhaps has the perfect caption to explain the reason for this growth: "a candle loses nothing by lighting another".

This growth in awareness has not been due to money, publicity or bold advertising.  To come back to the likeness of the candle;  like one single candle lighting another, which in turn lights another, which then lights another and so on, and eventually shifting from a glimmering glow to continued illumination - slowly but surely - MSA awareness has grown and will continue to grow in South Africa and world wide.  So also will our hopes and dreams continue to grow with that illumination to find a cure for Multiple System Atrophy.

Four years later, it's 3rd October once again.  We were still riding the wave of the TV program with Kwêla which was aired the week before. In our opinion this has been an absolute highlight for MSA awareness in this country.  

Sonja, Karin with Johnny (TV Presenter for Kwêla) and the crew of Homebrew Films during the filming of the program.
(Note Lillian peeping into the corner left of photo) :)

Less than a week later, another highlight - our annual walk at Strand beach. Familiar faces, friends, old and new, gathered for this event that had now become a tradition.

 A strong south-easterly wind set the scene for the the first group who set off punctually at 9.15 on the first leg of the walk.

Group 1 all smiles - gathering with Karin (2nd from right kneeling) before setting off

Braving the strong south-easter - Group 1 set of on the first leg of the walk

Hurry along!  Jogging to catch up with the first group

Meanwhile, behind the scenes.  The staff of Casa del Sol reported for duty earlier than usual to get things ready for us.  Ashley, the new manager, proved her worth by attending to all the umpteenth requests that were hurled at her.  

"Tables for candles;  A table for the cake;  4 Jugs of juices - no make it 6; Coffee - only one coffee machine?;  Make tea;  Arrange emergency access in case wheelchairs / scooters don't fit through the turnstile glass entrance; Clear emergency access passages;  Reserve parking for the SissiBissi; Arrange seating for 80 or 90 people - cozily; and get that darn wind to die down ...."

All this they did for us, in record time, with a smile - for the fourth time. Thank you Casa del Sol - you went more than the extra mile!

The second group, including Sonja, arrived.  More hugs and smiles as we got together with the first group that now returned to join us on the second leg of the walk.  The wind abated a little before we all set off along the Strand beach front - a lot of us sporting red T-shirts which had somehow became our signature colour for this day.

Let's continue with photo's for the rest of the story.  Thank you for reading this.  By doing so, you too have become part of our dream to keep the candles of hope burning - burning for a cure for MSA.

Please share our blog and our dream with someone today.

Sonja arrived and waited for supporters to arrive - young to not so young

Sonja meeting new friends

Gathering of second group before setting off

Meeting with friends - old and new

The converted SissiBissi spreads the word whenever we go out

Group 1 and Group 2 before the second leg of our walk (Johnny kneeling next to Sonja and Susan kneeling next to Karin)

Friends took turns to wheel Sonja along

Sonja, Geraldene and Jacqui behind the palm leaf

All the people in the photo walking for MSA Awareness

If you see the name Laurette on a photo - that's the illusive photographer on the wall bravely trying to herd the walkers together for a group photo.  Thank you once again Laurette - you do so much more than is expected.  

The walk completed 

The walk completed, we gathered at Casa del Sol.

Attentively listening while Hugh's talking

Listening 

Loyal supporters

Listening

Friend Ermanno sharing a moment with Sonja

A carer, a companion, a confidante, a husband, a provider - Sonja with  her Johnny

Lighting the candles

Candles lit for the many MSA friends - past and present. Johnny, Sonja & Karin

Thank  you Wendy for the beautiful cake

Much later, in the evening, many candles were lit at Sonja's home with a few close friends at her side. The perfect end to a perfect day.

Candles - we lit many candles

This year two other groups also hosted walks.  In Kwazulu Natal MSA patient Kevin Dowling and his family gathered for a walk.  In Gauteng Liebet Jooste also walked with family and friends in memory of her late mum, Marie who passed away last  year.  Well done

Kevin Dowling of KZN with family and friends

Liebet Jooste (centre black shorts, red top with cheeky tummy peeking out) with family and friends,
walking in memory of her mum Marie who passed away last year

Thank you to friends and family far and wide who shared their photo's of candles they had lit for Sonja and friends with MSA.  It means so much.  Here are a few.

Candles for MSA

'Its better to light one candle than to curse the darkness' - Chinese proverb

'If you have knowledge, let others light their candles in it' - Margaret Fuller

'This little light of mine, I'm gonna let it shine ...'

All the darkness you  may be experiencing cannot dim the light of a single candle 

'A candle loses nothing by lighting another candle' - James Heller

“Look at how a single candle can both defy and define the darkness.” Anne Frank

It's better to light a candle than to curse the darkness - Eleanor Rooseveldt

Liebet's artwork on the MSA Art Page

by Karin

PS  Most of the photographs used are by Laurette and myself.  However, I have pinched a few from a friend or two to add here.  Forgive me for not informing you about this in advance - I have strong a feeling you won't object, but if you do - invite me for coffee so I can convince you anyway.