A LIGHT FOR MY JOURNEY

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.

A LONG WALK FOR MSA

Susan on the left and Emilene behind me

When, on our walk for MSA last year, my friend Laurette captured this photo with Susan and Emilene walking behind me, none of us had any idea of the significance of this. This was just the beginning of a long road of many kilometers that lay ahead; THE CAMINO DE SANTIAGO DE COMPOSTELA.  A long name for a very long journey.

It is with great joy that I can now announce that they and their hiking partners will be walking this pilgrimage for MSA in Spain in June this year. Last week I was privileged to meet with these ladies here at my home and their enthusiasm was infectious.  Read about this meeting on Emilene’s beautifully written blog, where there is also more information on this pilgrimage.

front; Emilene, me and Milo. Back; Karin Susan, Gerda and Lilian

Although I met Emilene for the first time on 3 October last year, she shares so many interests and passions with me that it feels like I’ve known her all my life.  She will start her pilgrimage with one partner, Eddie (some others might join her at a later stage), on the 6th of June in St Jean Pied de Port, at the foot of the Pyrenees in France.  They  will walk a whopping 780 kilometres to Santiago de Compostela in Spain and she aims to, God willing, end her pilgrimage in the cathedral there on the 12^th of July, her 50^th birthday. 

My dear friend Susan and I have, with our husbands, shared countless 4x4 safaris, weekend getaways, and holidays over the last decades.  Her sunny and easy-going personality makes her a joy as a travel companion and any trip with her will inevitably lead to lots of laughter.  She will be accompanied by her sister Gerda and  friend Esther. They plan to walk approximately 500 kilometres from Burgos in Spain from the 17^th of June and aim to end on the 12^th of July in Santiago.  The two groups are looking forward to meeting up over the last part of their journey.

We discussed what promotion materials they would be able to take with them.  The general rule is that a woman can carry 10% of her body weight, which leaves the average woman with 6 kilograms, including the weight of her backpack.  A huge restriction, especially if you are packing for a couple of weeks of hard hiking.  We decided on a laminated tag with the red poppy logo of the WALK A MILE, BURN A CANDLE campaign attached to their backpacks, a MSA bracelet, and a few very small flyers/business cards.  Rita Ydennek, the initiator of this project, also suggested that they take a memory stick with them in case they need to print more on the way.

Some questions were asked at our meeting: 


- What is the purpose of creating awareness for MSA?  
- Is there any research being done to find a cure for MSA, by whom, and where should funds be donated for this? 

Purpose of Awareness? The answer that came to my mind was as follows:  When, after a year on my own, I started looking for other patients with MSA for mutual support, I found many patients who were at a much more advanced stage than me.  This very grim picture made me realise that we need to pool our strengths world wide to draw attention to this disease, in the hope that it will lead to the funding of research, and eventually, a cure.

My involvement in these awareness campaigns has had a positive impact on my life and given me a purpose, a goal to pursue.  Instead of feeling helpless and hopeless I am now contributing to something that could lead to a positive outcome for me and all the other patients. 

After visiting another patient and her family in my home town recently and hearing their story, I realised that awareness could lead to better knowledge, also in the medical profession, and that in turn could lead to better understanding, service to and treatment of patients.

My friend Karin and I are also hoping to attract the attention of other patients in South Africa to our facebook page so that we can strengthen our local numbers and communicate with, and support each other.

Research? With the help of a friend, I found the following informative links regarding individuals involved with ongoing and outstanding research:

- Prof. David Robertson heads the clinical research department at Vanderbilt University, Nashville, Tenessee.  He is recognised world wide as an expert on MSA and has been involved with the disease for 43 years.


- Prof. Charles Ide of Western Michigan university and his team of researchers are also working on finding solutions for MSA.


What else?  It would be wonderful if somehow the press and radio could become involved before these hikers depart on this brave venture to create awareness for MSA.

“I am only one, but I am one.  I cannot do everything, but I can do something.  And I will not let what I cannot do interfere with what I can do.” Edward Everett Hale