Wednesday, February 17, 2016


‘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. 

Wednesday, February 3, 2016


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."

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