‘I have seen a great many things. I have attended all the world's worst disasters, and worked for the greatest of villains. And I've seen the greatest wonders. But it's still like I said it was: no one lives forever’.
From THE BOOK THIEF Markus Zusak.
Since my diagnosis the sword of Damocles hover over my head. This however, does not mean death will take me first. Death, like birth is a natural cycle of life. We live, we die. But it seems socially unacceptable to discuss death.
Patients like me have a need to discuss death, and the arrangements thereafter. Family members and friends have a tendency to avoid such discussions.
Although I realise how hard this must be and is for them, patients like me will have peace of mind knowing everything is in place for the day when the Lord takes us to live with Him in our permanent heavenly home. Our life here is like a sand grain in comparison with Eternity.
Although not an easy topic, it is a discussion that needs to take place.
2 Corinthians 5 - New International Version (NIV)
Awaiting the New Body
"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. 2 Meanwhile we groan, longing to be clothed instead with our heavenly dwelling, 3 because when we are clothed, we will not be found naked. 4 For while we are in this tent, we groan and are burdened, because we do not wish to be unclothed but to be clothed instead with our heavenly dwelling, so that what is mortal may be swallowed up by life. 5 Now the one who has fashioned us for this very purpose is God, who has given us the Spirit as a deposit, guaranteeing what is to come."
Although I am going through dark fearsome tunnel now, I know He is always with. At end of tunnel I see HIS BRIGHT LIGHT awaiting me.
Psalm 23;4
"Even though I walk
through the darkest valley, [tunnel], I will fear no evil,
for you are with me;
your rod and your staff,
they comfort me."
I have long ago made peace with my journey and have no fear of my heavenly destiny.
My thanks to my friend Laurette for these beautiful photo's.
When my old technology cell phone recently broke, my eldest son helped me to upgrade to this nifty Samsung tablet. With a sim card in it, and a bluetooth ear piece, it doubles up as a phone. Now can write blogs in a reclined position, and it automatically syncs with my laptop via cloud technology, Dropbox. Typing with a stylus makes writing a lot easier now. Thank you for the photo Laurette
I stopped
telling 'My Story' at the point of my diagnosis, which was on 6 September 2010.
This was for several reasons. Firstly, reliving those stormy days was
emotionally painful
at that stage. Secondly, I was driven to get on with my life, and my new life
purpose; to create awareness for MSA. Thirdly, I wasn't ready to tell of my
all-consuming fear, and the difficulties we experienced adapting to a
drastically different lifestyle.
What was
to be a relaxing holiday week for us, unexpectedly, turned into the worst week
of our lives. Besides giving me his final diagnosis of an incurable
degenerative disorder we have never heard of, the neurologist also said we
would need all the help we could get; a psychologist, and if we were church
people, spiritual help. At that stage I was falling several times a day, and
could neither sleep nor eat. Every time I fell asleep I dreamt that I was
falling, and I would jerk awake. This pattern would repeat itself over and
over until I was left wide awake. The neurologist thus prescribed an
antidepressant and sleep medication to help me through the worst. We left his
rooms in a daze with an appointment with a psychologist on a slip of paper. We
also needed to see the occupational therapist about the acquisition of the
right equipment, wheelchair etcetera.
At home
we googled Multiple System Atrophy, but after a brief glance, fear of what lay
ahead made me switch off the computer abruptly. My mind was a turmoil of racing thoughts; how we were going to cope with this extreme challenge?
During
that first year I remained too fearful to read about the full extent of MSA, or
to make contact with other patients through support groups. I thought they
would only depress me further. I was wrong. My MSA buddies inspire me, showing me how to cope by example.
When I
now read of the many couples who split up under the extreme pressure of
adapting to a totally different lifestyle, I remember that all was most
certainly not plain sailing for us, especially in that first year. I quote what
the psychologists say; "abnormal behaviour under abnormal circumstances is
normal human behaviour."
At that stage it had been several years since we've been to church. I never stopped believing
in God, and we often yearned for a place where we would be fully accepted, where
we could worship Him. I knew instinctively
that on my own, without God, I would not make it through this situation.
A friend
who knew of our dilemma made me an appointment with a minister of another congregation of our church. We met in a coffee shop, and
after listening to my problems, Paul Barnard quietly told me about God's all-encompassing
immeasurable love for all of us. That was a turning point, the restart of my
journey towards the Light. I salvaged my Bible from where it was lying in a bag
with several other books behind my winter sweaters, and started reading it
again.
But my rebirth was a long process. It
took some time and continues prayer, and reading of His Word to dispel that frightful
fear. My prayer and that first year was
mostly; "please help me God."
2 Corinthians
1: 8b -9
"We were
under great pressure, far beyond our ability to endure, so that we despaired of
life itself. 9 Indeed, we felt we had received the sentence of death. But this
happened that we might not rely on ourselves but on God, who raises the dead."
He heard
my desperate prayer, and soon I started seeing Him, and the help He sent in the people who share my life. Some like my dear husband, my sons, and extraordinary
supportive friends had been placed in my life a long time ago to aide me, but
He sent me more and more wonderful people into my life. If you are one of them,
know this; you are part of my Heavenly Father's plan for my life. I stopped
believing in randomness some time ago.
On my
daily journey with my Saviour, I have learnt (it's an ongoing process) of His
great love for you and me. His never ending grace and mercy, His forgiveness of our sins
through Christ. Through His many promises in the Bible l have found peace in
the knowledge that He accompanies me every step of the way throughout this
daunting journey until the day I go to live with Him for eternity. I have been
healed spiritually and emotionally. The result is; A LIFE WITHOUT FEAR.
2 Corinthians
12: 9-10
"My
grace is sufficient for you, for my power is made perfect in weakness.”
Therefore I will boast all the more gladly about my weaknesses, so that
Christ’s power may rest on me. 10 That is why, for Christ’s sake, I delight in
weaknesses, in insults, in hardships, in persecutions, in difficulties. For
when I am weak, then I am strong."
Isaiah
26:3
"You will
keep in perfect peace those whose minds are steadfast, because they trust in
you."
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 Kwêla 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.
"
Ultimately we hope that awareness will lead to funding for research to find a cure for the disease.
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.
As patients we feel less hopeless and helpless when we are actively involved and contributing towards a more positive outcome for the disease.
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
