Friday, October 9, 2015

"WHERE DO I BEGIN..." - TOGETHER FOR MULTIPLE SYSTEM ATROPHY - IN SOUTH AFRICA




TOGETHER  FOR  MULTIPLE  SYSTEM  ATROPHY  -  WALK  &  LIGHT  A  CANDLE  - 3 OCTOBER  2015



By Karin - Sonja's friend.
 (Sonja's dexterity has become such that it is limiting her from writing long blogs.  So, I will piece this day together, for her, in the best way I know : from my heart.)

"Where do I begin
To tell the story 
Of how great a love can be 
The sweet love story 
That is older than the sea 
The simple truth about the love she brings to me 
Where do I start

These words from that familiar old song has been drifting in my head in a haunting way since Saturday, 3 October 2015.  As friends shared their photos and thoughts after the morning's event, my heart has been filling up and my thoughts have become cluttered.   My dreams the past few nights have been filled with the scenes of this wonderful day.  I've come to realize that no words of mine will do this day justice. There were just too many special moments - tender and bitter sweet moments.


"With her first hello
She gave new meaning
to this empty world of mine"

The evening before the walk I lay in the bed next to Sonja holding her hand.  She with a whiskey in a sippy cup and me with a glass of wine, a few little salty crackers and her Johnny checking on us regularly.  'Als OK bokkie' - his endearing words to her are spoken so often.  It means "is everything OK my dear.  Bokkie is an endearing term in Afrikaans meaning little deer".  



Sonja and Karin - the evening before the Walk

"What an unbelievable journey this had been so far Sissi".  Sonja reminisced about the past 5 years, previous MSA walks; the people in the MSA community, (patients, carers that we have met); the TV debut last year on Kw√™la and other memories that drifted into our minds that hour we spent in her bed.   We spoke about the anticipated walk the next day, the arrangements that are in place and the people coming from far. We were both at peace with everything; at peace but a little nervously excited too.


"She fills my heart
with very special things

with angel songs
with wild imaginings"


Arranging this walk had been such a pleasure, but also a bittersweet experience.  This time the main character in this event and my greatest cheerleader from the side line is no longer able to wave her flag as enthusiastically as previous years.  It was inevitable that Sonja's condition would deteriorate as time marches on.  We both chose to ignore this fact for the moment and I filled her in about the event, the arrangements, the anticipated hiccups and the solutions.  E.g. if it rained, she would not accompany us on the walk but would wait at the venue for our return.   If she felt ill we would take her home immediately but the event would continue. 


"she fills my soul
with so much love"


 I lingered a while, knowing that the next day would be a bit of a scurry for me to ensure that all things are in place and hopeful that Sonja would experience everything that this day had to offer in such a way that the memory thereof would continue to light up any dark days that may lay ahead. Scurry in a good way to ensure that it was good and special and as smooth as possible.

The Support Team
Standing Johnny, Anchen, Carer Lillian, Carer  Ursula
Front: Dominique, Karin, Marianne, Sonja, Susan, Hugh and Liebet


A few dear friends rallied round, offering their help and we are so grateful and so touched that they stepped in and helped to make all the things happen without a hitch.  Marianne Gonzales, Anchen van der Merwe, Susan Albertyn stepped in and did everything and more that I asked them to do.  Thank you so  much girls.   Casa del Sol have accommodated us for the fifth time, even though it was on a Saturday, normally a busy day for any beach side restaurant. We have been going there after our walk for coffee and someone normally speaks, telling everyone more about MSA, about Sonja and other patients and families.  They were fantastic, tending to our every need and request.  They cleared the back entrance for Sonja to access with her wheelchair.  Furniture was arranged to accommodate the group.  The staff came in early.  A table was set for the candles and another for snacks.  The waitrons were all stars.  A huge thank you to Casa del Sol for opening their restaurant and their hearts to us.

But I'm jumping the gun.  Many friends braved the iffy weather and came dressed warmly and determined to do the short walk.  We gathered opposite Casa del Sol where Laurette van der Merwe herded us together for a group photo.   Getting everyone to face the camera and saying cheese at the same time is quite a challenge.  Thank you for a marvelous selection of photographs once again and racing ahead and capturing some very special moments.  

The Group gathered before setting off on our walk


Let's fluff you up a bit!

Snug as a bug, with a huge grin and all set for the walk.

Sonja with Johnny and Carer Lillian

"That anywhere I go
I'm never lonely
with her along who could be lonely
I reach for her hand
It's always there"


Warm hallo from friend Susan

"Fancy seeing you here"

Happy walkers

Just keep walking


Hibernian Towers where Casa del Sol is situated on the ground floor





A good looking lot

Loyal friends


Newly weds

Dominique with Sonja

'Everything good so far Sissi?'
Lady with pink jacket was at school with Sonja and was the first time we saw her since 1973.  


Old friends, new friends, Family - all in support of this wonderful day





Smiling all the way


Stopping the traffic

Finally arriving at Casa del Sol, they were ready for almost 70 of us.  While coffee was being served to warm us up Hugh Holtzhausen made a welcoming speech.  On behalf of Sonja he thanked the many people involved in Sonja's life.  Special mention must be given to Johnny - he is such a loyal and dedicated husband.  A special welcome was extended to Dominique Nass who came from Kwazulu Natal.  Her brother died of MSA in March 2015.  Liebet and Adel drove all the way from Pretoria.  Liebet lost her mom to MSA.  Linda Erlank came from Cape Town.  She too lost her mom to MSA in March 2015. So there were four MSA families represented here in South Africa. 

Dominique made a very touching speech and spoke about how MSA affected her brother Kevin and their family.  When Kevin was still alive Dominique found this blog and came to Cape Town to meet Sonja.  Unlike Sonja, Kevin had speech difficulties from early diagnosis.   A selected group of friends received special training to help him with speech therapy and dedicated their time to spending time with him. These friends miss their buddy and these special times.  Kevin was apparently touched and encouraged by the many positive messages and posts that Sonja shared on Facebook and on this blog.  

Friends gathered around Sonja for brief chats and posing for photographs.  Everyone chatted and laughed the morning away.  Later everyone had the opportunity to light a candle.

All in all - the morning was a great success.  


Hugh welcoming and thanking everyone.

Liebet, Sonja and Adel

"How long does it last
Can love be measured by the hours in a day"



Friends and Supporters

A solemn moment - light candles and remembering other departed MSA friends.  What made this extra special was that loved ones of these MSA friends were with us this day.  Liebet who lost her mum.  Dominique who lost her brother Kevin.  Linda who lost her mum Magda.  


Wonderful friends

Dominique Nass sharing a special message with us

A loving touch
"I have no answers now
But this much I can say
I know I'll need her 'till the stars all burn away"


Linda Erlank (her mom Magda had MSA), Sonja, Liebet Jooste (her  mum had MSA) and Dominique Nass (her brother Kevin had MSA). We met all of these ladies on separate occasions and today they all met each other.  
"and she'll be there"  

Liebet with Sonja's Johnny

Sharing the light and remembering

Hugs don't always need words
"how long does it last
can love be measured by the hours in a day"



Standing: - Karin, Anchen, carer Lillian and a very shy carer Ursula
Sitting: Dominique, Marianne, Sonja and Susan
Special word of thanks to Anchen, Marianne and Susan who helped enormously behind the scenes.  Thanks girls
Lillian and Ursula are Sonja's dedicated carers



Four lovely girls that used to dance together, back in the day.
Laurette vd Merwe at the back (our fabulous and ever willing photographer)
with Marianne Groenewald, Sonja and Lorraine Weil
( photo by Donna Barnes)

The staff of Casa del Sol with Sonja
Ashley (next to Sonja) and her team - you guys rocked



Later that evening Hugh and I spent time with Johnny and Sonja and we lit the traditional candles.







As the day came to an end it became time to reflect on this day, World MSA Awareness Day 3 October 2015 and the purpose of it all.  I quote Sonja's own words 2 years ago which was read out then.

"
  1. Ultimately we hope that awareness will lead to funding for research to find a cure for the disease.

  1. I can testify to the lack of knowledge of this disease in the medical and care professions. Awareness and dissemination of information can lead to better service to patients and better understanding and treatment of their unique problems.

  1. As patients we feel less hopeless and helpless when we are actively involved and contributing towards a more positive outcome for the disease.

  1. We also hope that our awareness campaigns will draw the attention of South African patients to join us.  These bonds with other patients and their families strengthen us and enable us to form a more united front. I pray that we will one day be strong enough to form an organisation for the support so desperately needed by MSA patients and their families."

 Great success has been achieved with regards to no 4.  Because of Sonja's relentless and selfless efforts to reach out to other patients and carers, despite her own deteriorating limitations, special bonds have been formed.  I could see it in the eyes of Liebet, Dominique and Linda when they met Sonja and now also each other.  There was an immediate bond of true understanding and love.

Sonja's loving and dedicated care by Johnny and her carers, in my opinion, are factors that enable her to stay positive and motivated to continue to reach out.  Two years ago the heading of the blog she was able to still write herself said:  "A candle loses nothing by lighting another"

Little does she realize that she herself has become the candle whose light will never die but continue to spread.

I am blessed to call her my friend.

Tired but content.  The end to a perfect day.  

I have no answers now
But this much I can say
I know I'll need her 'till the stars all burn away
And she'll be there'

Thanks to my dear and loyal friend, Laurette, for most of the beautiful photos  on this blog, love Sonja

Two patients from Alberton, Sharon Boshoff and Linda du Toit van Heerden organised a walk there, this their team.







Sharon and her daughters with stunning candle display





Monday, July 20, 2015

MSA - THE LOST LAYERS OF CIPOLLINA

Al mio caro Cipollone

There once was a lady who frequently went to the gym. She was a fitness and health fanatic. A man of Italian descent chatted to her, he told her he was training to walk the Camino Santiago in Spain. Being a hiker herself, this sparked her interest. The man intended his Camino to be a religious pilgrimage, but If he touched on religious matters, the lady would warily eye him, she was there for a workout, not for a sermon. At that stage she and her family had stopped going to church, and her faith had started to wane.

The man, who was 69 years old, wrote a book about his 800 kilometre pilgrimage when he returned.



With time their friendship grew.  By the time the lady was diagnosed with an incurable degenerative disease, Multiple System Atrophy, she realized only God could walk her through this fire. Her friend, a sage, became one of her spiritual advisers. They soon discovered they share a love for the same music, and had similar life philosophies. When he told her about his interesting family history during World War 11, she said he had as many interesting layers as an onion. He said he would call her Cipollina (little onion), and said from then on she should address him as Cipollone (big onion). And that is what we  called each other to this day.

But Cipollina started losing her layers. First she lost the layers of dancer, gym instructor, and hiker.

On the Whale trail 2007


As time went by Cipollina became less proficient at housekeeping. The hostess who loved to cook and bake disappeared.





 The Cipollina who was interested in current affairs died when she lost the ability to page through the newspaper. When her boys come to visit, this Cipollina can no longer treat them with baked goods or special dishes, they have to cook for her now. Gone was Cipollina the gardener, 


the Cipollina who was the planner and traveller to faraway places, went with her.

Epupa Falls, Kunene river, on the northern border of Namibia


Where Cipollina took care of others in the past, carers now take care of her of every need. Her curriculum vitae is blank.

Stripped from all protective layers, with no more social titles, she asks;"Is my life worth anything?"

Her Heavenly Father answers" I paid for you with my Son, therefore your life has inestimable value my child."



1 Corinthians 6:20

"You were bought at a price."
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