Saturday, March 31, 2012

Day 634 - A walk with a purpose.

Back: Karin, Susan, Gerda, Lillian
Front: Me, Sonja
Sometimes you can know somebody for a lifetime, but yet somehow you always avoid being alone in a room with them. You just know that after you've talked about the weather, how the year has flown by since Christmas and how the kids have grown, there won't be much left to say. For whatever reason - conversation simply never flows and you never invite each other for a quick coffee to catch up.

And then you meet someone who makes you laugh until the tears run down your face. You feel as if you've known each other for a lifetime yet you're not even sure of last names yet. The women in the photograph here with me all fall in this second category.

I feel like I have been blessed with another group of soul sisters - each one of them.

Last week we all met for tea and cake at the home of Sonja, the amazing blonde seated next to me here. Sonja's home and garden is filled with colour - just like the person she is. A hostess who makes you feel like you can kick off your shoes and relax in her home. While you enjoy the company gathered around her table you notice that your favourite music is playing in the background. She has taken note of your love of a specific genre and she's made sure that she has created an atmosphere that is a treat to all your senses!

As we laughed and chatted away on this beautiful day it was hard to believe that Sonja's life is being impacted by an illness that most people haven't even heard of. Sonja suffers from Multiple System Atrophy, also known as MSA.

Just as I knew absolutely nothing about the Camino de Santiago pilgrimage two years ago, my knowledge of MSA, prior to me meeting Sonja in October last year, was just about zero.

In a nutshell, MSA is degenerative neurological disease. I quote from a MSA Internet site: '...symptoms reflect the loss of nerve cells in several different areas in the brain and spinal cord that control the autonomic nervous system and coordinate muscle movements. '

A nasty house guest then. And one that arrived without an invitation. We won't be playing background music to match his mood. Instead, I read quotations such as this one on the website that Sonja and her friend Karin have created to raise awareness of the disease:

"Adventure isn’t hanging on a rope off the side of a mountain. Adventure is an attitude that we must apply to the day to day obstacles of life – facing new challenges, seizing new opportunities, testing our resources against the unknown and in the process, discovering our own unique potential.” Johan Amatt

Needless to say, when Sonja asked me if I would dedicate my pilgrimage to Santiago to her cause, which is to raise awareness of MSA, I agreed immediately.

The purpose of our get-together last week was thus not only to visit, but also to decide exactly how we would use the journey in Spain to further the cause. Susan and Gerda, pictured above, are also undertaking their first camino and they will be walking from Burgos round about the 16th of June. We are hoping to meet up - what a special day that will be!

Karin and Sonja will be working on a laminated logo with a photograph of Sonja on for us to attach to our backpacks. We will each take a few cards with their website details on and of course we will be armed with knowledge in order to have educated conversations about MSA with people we engage with whilst walking in Spain.

Last but not least, the miles we walk will be logged with an awareness group - they are hoping to log enough miles to round the globe - all part of the awareness effort. My hiking buddie, Eddie, who will be walking with me, also immediately agreed to join in, so his miles will also be added to our total count.

Sonja may not be walking the Camino but I will be leaving my brand new DVD copy of 'The Way' with her when I leave so that she can 'follow' the route from the comfort of her home. Thank you Karin for that brilliant suggestion!

I cannot begin to tell you what it's like to be in Sonja's shoes right now but I would like to direct you to the blog that Karin has created and that the two of them keep going. Following Sonja's journey in this way has touched me so deeply - I cannot stay uninvolved. I urge you to spare a moment or two to read their blog - who knows, you or someone you know could make a difference in some way!

This is the link to their blog:

I have posted a link to a specific post as this honest, sincere piece really tells the story in a way that only a true, loyal friend can. It is current and for me even more touching, as the brave woman that I spent a morning with this week continues to smile the most sincere smile - Sonja, I salute you!

My journey in Spain has been given a new purpose. Join me if you wish and lets somehow, each one of us in our own little place in this world, attempt to make a difference. The more people know about this illness, the easier it can be diagnosed and hopefully the more intense the research efforts to find a cure will become.

So if you are planning to walk the Camino Frances in June or July and you see someone walking in front of you with a small laminated version of this photograph of Sonja attached to their backpack - stop and say hallo - we'd love to meet you!

12 comments:

  1. Dear Emilene, I share those feelings that we are dealing with a very special group of women here, because all of them, when given the choice, choose to make a difference. I am blessed that you choose to make that difference in my life, as well as in the lives of all who suffers from MSA. You are now officially "DIFFERANCE MAKERS FOR MSA"!

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    1. Yay!! I look forward to reporting back over the months to come - we're definitely going to do our best to clock up miles for you - the Camino is only the beginning my friend!

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  2. I'm Bob Summers and my wife Susan has multi systems atrophy. We live in Murfreesboro, Tennessee in the U.S.A. Over the last few months we have made friends with Sonja,and I have quickly seen the attitude of "I'm going to use this adversity in my life to make a difference attitude!" Susan and I "salute" her and you her friends that are helping achieve the goals. Vision comes from purpose, and much energy comes when there is vision. This a good thing that all of you are doing and will produce great results. All of you are "MSA Awreness Warriors" and "Difference Makers" God Bless all of you in this effort!

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    1. Dear Bob and Susan! Lovely 'meeting' you now as well! Thank you for your lovely words - I can only salute you both as well, you've all chosen to deal with your situation in the same way when you certainly could have chosen different options. '...much energy comes from when there is vision' - HOW TRUE THAT IS! God bless you both as well and we are privileged to have you along on our camino journey!

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  3. Ekskuus, ek dink jy het al gesê, maar wanneer vertrek jy?
    En dankie dat jy jou ervaring aan so iets wy

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    1. Hi daar! Ek vlieg 4 Junie en begin 6 Junie stap. Ons hoop om 12 Julie in Santiago aan te kom. Die Here werk mos maar so - Hy het lankal geweet waarheen hierdie paadjie nou eintlik lei... :)

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  4. Thank you Emilene - for becoming a voice for Sonja and for MSA and also for directing readers to our blog. It was indeed lovely to see you again and catch a glimpse of your and the other girls' energy building up to the Camino.

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    1. Hi Karin! Thank YOU for involving us in this way! The friendship that you and Sonja share is beyond special and I applaud you for your work with the blog and everything else you do for this incredibly special friend of yours. Your friendship is an example of how we are meant to impact on each other's lives - genuine, selfless, caring,loving!

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  5. we often forget ,that truly we are not alone whith this illness, that it afects evryone around the world, we need a cure in my life time , thinking positive

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    1. You are so right - it affects so many people and I will continue praying that the cure comes soon! I also pray for all the carers and children of those affected - as you say, SO many people... A big hug for you today!

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    2. Hi Emilene, I'm Pam Bower from Halifax, Nova Scotia, Canada. My mother-in-law had MSA and passed away in 1998, 14 years ago today. As long as I draw breath I will never forget her and will work to bring more awareness to this dreadful disease. I will be following your blog as you take this amazing journey. Please tell everyone you meet to look up Miracles for MSA on facebook.

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    3. Hi Pam! Thanks for making contact. I will definitely direct people to the facebook site! Stay in touch!

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Thank you so much for taking the time to leave a comment, I welcome your input!