Tell me a story

Hi all!

It has been a very busy and invigorating week, traveling between Melbourne and Sydney and being exposed to some exciting new ideas, people and stories.

While in Sydney on Tuesday I met with MS Angel Lyn Ralph, who invited me to a lunch with a diverse bunch of people, some from the MS community and other opinion leaders.  The discussion was lively and I met some very interesting people with such diversity of stories, ideas and views.

MSA CEO Debra Cerasa meeting with Dimitri Cachia

Meeting with Dimitri Cachia on Tuesday in Sydney

Later that day Andrew Long (MSA Company Secretary) and I met with Dimitri Chacia, who some of you will know is a very active member of the MS community.  The three of us chatted enthusiastically about how to motivate and engage people to get involved with MS Australia and help raise awareness of the impact of MS on the community.

I also enjoyed some very warm hospitality from staff at the MS Australia –ACT/NSW/VIC residential and treatment facility in Lidcombe. It was fascinating to see the ongoing work of the centre for people with MS, their carers and loved ones and to meet some of the extremely passionate staff who have devoted their life to the cause. I look forward to learning more in future visits to the facility.

As you all know, I am interested in the way social media (and blogging!) can be used within the health sector and to motivate and encourage the community. I headed to a dynamic Blogging in Health conference last week. It was such an enthralling experience which I got so much out of. This conference connected health and wellbeing with healthcare and health professionals, blogging and social media and lifestyle.

The most significant part of the day was hearing amazing, personal stories. I am a big fan of films which tell wonderful stories, stories that make me empathise, relate, laugh or learn something about the strengths and vulnerabilities of human nature. Have you heard a great story in the last week? What was it? How did it make you feel?

As I was thinking about the impact of stories, this was shared with me via the MS Australia Facebook page. Caroline shared her story about her MS diagnosis with us and thought some of you might also get a lot out of reading it. I know some of you will be able to relate. Thank you Caroline.

Travelling with friends – Caroline Everett – Written on Christmas Day, 2008

“What do you think it is?” my GP asked. “I don’t really want to say it out loud, but I think it’s MS.” I replied. “I think you’re right” she said.

And so began my journey with my latest travelling companion – Multiple Sclerosis.

Trying to be calm (an occasional acquaintance of mine), and not scream the place down with terror (fear’s big brother), I asked “So what happens now?” An appointment with a Neurologist who could request an MRI was advised.

After a short discussion, my friend calm and I left my GP’s office, got into my car and drove the 40km home. I walked into my house, patted the cat, sat down on my couch and I began to cry and cry and cry. I had just met Grief.

3 hours later I stopped crying and decided it was time to eat. My cat agreed. “Normal” was the only way to handle this at the moment. Normal stayed for about 24 hours until I went to pick up a pen the next day and found that my right hand would not grasp anything so I couldn’t write. Normal suddenly left and “Why me” dropped in.

During the last six years I had endured a serious car accident, which resulted in multiple surgeries, my house burnt down, I had a clot on the lung, I lost my job, my partner’s father died, I started a new job, I split up with my partner, moved house, changed jobs again, fell ill and now this!! I was getting rather tired of the warped sense of humour that the universe had adopted. “Why me” disappeared and “I’m angry – no I’m bloody pissed off!!” rang the doorbell.

Anger for me has always been the toughest of my friends to deal with because it is emotional, irrational and something that even when you try to intellectualize it won’t go away. If you swallow too much of it, like any toxin it will poison you and make you ill. If you lose your cool and try to spit it out, society labels you as being ‘short tempered’, aggressive and all those other titles with negative connotations.

Such was the case until I read a quote attributed to Buddha. “Holding on to anger is like holding on to a hot coal with the intention of throwing it at someone. You are the only one who gets burnt.”

So, what should I do? Easy, PUT IT DOWN. Just take a breath and put it down, let it go. Sounds simple. It’s NOT. I have to go through the process of mentally acknowledging that anger is there, then I have to visualize me holding the hot coal and putting it down. I am (or rather, was) a CFA volunteer firefighter, so for safety’s sake I have to make sure that wherever I put it down is clear of fuel for at least 3 metres all around and before leaving, make sure the area is also thoroughly doused with water! These days with small coals, this process only takes about an hour. However, the combination of anger and MS is not just a hot coal, it is a raging bushfire, and it took me about 2 weeks to put out!

During those 2 weeks I revisited a familiar friend – “Terror”. I was subjected to a 45 minute MRI. I discovered that I am a little more claustrophobic than I thought, especially when trapped in a narrow tunnel and your faulty nerve endings are telling you that something is crawling on your face. Yep! Scream city!!
Next up, a visit to the Neurologist and a look at the MRI results. I swore loudly because it was more advanced than all the ones I’d seen on the internet and I promptly had a panic attack. By the time I got to my friend’s car I was hysterical. And all this without a sedative!

The next time “terror” paid me a visit was two days later when I had my spinal tap done. I had meditated for almost an hour that morning. I was calm and serene and all set to meet this next challenge head on and they made me WAIT 20 MINUTES!!! During this time I was told what would happen and what might happen but what I really needed to know was when it would happen so I could stop shaking, take a deep breath and let it happen! “Terror “in the interim decided to present me with another panic attack – how kind. I meditated my way through this and finally the spinal tap actually happened. What actually happened was by no means pleasant but it was only about one fifth as bad as I had intellectualized. – DON’T INTELLECTUALIZE!! Things will either be worse than you thought, easier than you thought or exactly as you thought. It doesn’t matter!!! It’s going to happen, just do it! Live in the here and now.

A work colleague once told me that carrying out big tasks was always easier doing it a bit at a time. She used to say “By the yard life is hard, by the inch it’s a cinch!” I have added (with metric conversion) “By the millimetre it’s even sweeter!”

Live each second for what it is, one second, here and now. Don’t count them all, just live them all. If we spend our time counting seconds, converting them to minutes, hours, days, weeks, months, years, centuries and millenniums, we often lose count and miss the second that the sun rises over the horizon, the second that a butterfly hatches, the second that a child first smiles, the second that the first raindrop hits the ground after a drought. The things that we miss by counting seconds are endless. Just live them and appreciate them and don’t think about them too much.

I am revisiting my friend “normal” at the moment. It’s safe, familiar and even friendly at times. Occasionally “why me?” calls in again and I deal with it by introducing them to “why not me?” I suspect that in a couple of weeks I will revisit “terror” for a short time when I have to learn to give myself injections but I am NOT going to think too much or count the seconds this time.

There are a myriad of emotions (friends) that haven’t even introduced themselves yet and I’d really like to get to know “calm”, “serene” and “patient” a lot better so, I am embarking on a new journey. It’s called self discovery. I will take my travelling companion MS with me and hope that we get along ok, but just in case we don’t, I think I’ll note down the contact details of “calm” to take with me. Calm is usually found in the suburb of “relaxation” which is just a bit north of “meditation”. My GPS is a bit dodgy!

Maybe I’ll bump into you on my travels and you can introduce me to one of your friends – “experience”.

Happy Travels!

Since writing this, I have successfully overcome “Terror” yet again and learnt to give myself regular injections and, after much thinking and planning, my old friend “Normal” has begun to visit much more often too!

This entry was posted in Advocacy, Facebook, MS ambassadors, MS Australia, MS Australia-ACT/NSW/VIC, newly diagnosed, Storytelling and tagged , , , , , , , , , , , . Bookmark the permalink.

One Response to Tell me a story

  1. Scott Bushell says:

    Hi Caroline,

    Thanks for your story. It reads really well


    Scott Bushell

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