Saturday, April 21, 2012


Me gazing over the beautiful Richtersveld

It’s been a strange week.  I know I always try to paint a pretty and positive picture of what’s going on in my life.  It is part of my life philosophy to accept the inevitable gracefully and concentrate on the positive side, or change what I can into a positive experience.  But the week swept over me like a stormy wind…

It started with the news of fellow blogger’s sudden death.  This gentleman and writer of the blog “Simon Roodhouse and his new companion – MSA”, died unexpectedly and peacefully in his sleep on Easter Friday.  I quote his wife; “My lovely husband and best friend’s spirit was free from a body that was slowly consuming him. He’d not had to resort to using a wheelchair or having people caring for him apart from me and he’d died in the home he loved in his own bed.”  RIP Simon Roodhouse.

Following this was the news of the struggles of another MSA family in our town.  The Mc Donalds were on their way to the hospital with Reinette, where major surgery was to be performed.  I am thankful to report that, despite being in extreme pain after surgery, she is feeling better now.  I wish her a speedy recovery and all in this family the strength to deal with the challenges that this new situation bring.  You will remain in my prayers.

I was saddened by the news that my dear MSA friend, Trevor Pengelly, has been forced by his personal circumstances to move to an institution by the end of this month, to get the care that he needs.  It broke my heart when he told me about his 16 year old doggy that follows him like a shadow.  I didn't have the courage to ask what was going to happen to his doggy, and only I wish I could do more for him.

One of my resolutions for this year is to find other patients in South Africa so we can support each other, share information, and form a united front for creating awareness.  I was excited when another MSA family made contact through the new Rare Diseases Communities website, and extend a warm welcome these two beautiful daughters, who are trying to get information and help for their mother.  Her first symptoms appeared three years ago and she is already bedridden.  We welcome them to our group and wish them strength to deal with this challenge.

Yesterday was a low blood pressure day.  It left me frustrated en bored because I was forced to lie down and unable to lift my head because of fainting and nausea.

With all of this going through my mind, I had no idea what to tell my eldest son, who lives and works in London, when he phoned.  Should he come home to visit this Christmas?  Or should he wait until a later stage and then come home to work here again?  Nobody knows how my journey will be; how much degeneration there will be by next month or in a year.  I know only this; I need to embrace life to the fullest and do everything I can, while I still can. 

The following analogy came to mind: 

When you get into your car at night, and you turn on your headlights, they do not shine all the way to your destination.  Yet, you confidently start the car and drive, using the light from those headlights to guide you.

They shine but for a short distance ahead, but you drive confidently onward, never faltering, questioning, or stopping. You allow them guide and light your way.

Faith is the exact same thing; believing without seeing.  I cannot see all the twists and turns of my journey, nor can I see the end.  But I can feel and see His presence in my life, especially through the love and support of my family and friends.

If headlights that only shine dimly a few yards gain our faith, then how cannot the Son of God, who is the Light of the world?

I am that car, and God is my headlamp. I have to believe.  I have to have faith.

PS: Kathy Whitlatch Garrett shared this analogy from her pastor with me last year.  At the very moment I finished writing this post, she sent me this picture of me to which she had added the words. Kathy has MSA, lives in West Virginia and expresses herself through her healing poems.  Thank you for adding your beautiful words and thought to my photo Kathy.


  1. dear Sonja,thanks for sharing the uphill battle in your latest blog, although you always concentrate on the positive.. How I learn from you: embrace every day and it's OK to have a "low blood pressure day" as long as one can share with family/friends..

    1. Dear Anchen, your willingness to share the uphill days warms my heart friend. Hope to see you soon. x

  2. Dearest Sonja. Today as we drove through the Knysna forest we enjoyed the wonderful cd you gave me to take along on the Camino. Your light shone amongst us as we listened to music that we appreciate so much and my parents commented on your amazing taste. The words of this post - written so honestly and sincerely, really touched me and your attitude humbles me! Know that you are admired, appreciated and loved by so many people! Your faith shines through and I pray that God will surround you with peace, love and grace in abundance.

    1. Dear Emilene, inspiring friends like you by my side makes such a big difference in my life. I am so blessed :) x

  3. May there always be a light illuminating your path ...

    My mom was misdiagnosed with Parkinson's initially ... we never knew how to get the proper information ... I wish I could hear her voice now ... I would like to know what she thinks and what she is feeling ...

    My heart aches for my mom, for you and all others living with this illness ... I wish I could do more ... I wish I knew more ...

    All my best as always ... J

    1. Thank you beautiful girl. Your mom was blessed to have a daughter like you. x


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