Tag Archives: Disabled Winter Sports

Compassion Fatigue: A Light Bulb Moment!

For so many with a passion for compassion, there can come a point where we need to reassess our vision. Admit that we have over-extended our scope or perceived list of responsibilities beyond our sphere and have actually gone too far. Moreover, although we not be thinking about compassion fatigue or burnout, we need to pull our heads in before we implode. Otherwise, instead of being able to help and support others, we risk needing help ourselves!

I would suggest that if you are watching ants lugging heavy loads with more than just a casual eye and indeed considering learning ant language so you can help them more effectively: “Hey, can I give you a lift?” Then, perhaps you have taken compassion just that little bit too far.

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There comes a time when especially the most compassionate souls need to re-visit their priorities before it’s too late.

 

I have been putting a lot of thought into compassion since I signed up for the 1000 Voices Speak for Compassion Movement where on this day Friday 20th February over 1000 bloggers worldwide have signed up to write a post about compassion on their blogs.

Here is a link to the project: http://new.inlinkz.com/luwpview.php?id=497564&fb_ref=Default

Today, is the United Nations Day of Social Justice. Thanks to my husband and has his particular way of challenging “stuff”, I would just like to stress that “social justice” has nothing to do with society taking justice into its own hands, mob rule or the formation of such abhorrent organisations as the Klu Klux Klan. Rather, it’s about giving everyone, as we Australians put it: “a fair go” and fighting against all forms of discrimination…even the insidious, invisible ones!!

Bloggers Around the World Unite: 1000 Voices Speak for Compassion.

Bloggers Around the World Unite: 1000 Voices Speak for Compassion.

Writing one post about compassion for me is impossibly difficult. It’s like taking me to the most sumpuous smorgasbord restaurant (all you can eat)  and being told: “You can only eat one thing!”

WHAT THE???!!

My husband would tell you that’s impossible. That I could never, ever go into a smorgasbord restaurant with all those tempting tables of every kind of Chinese, Thai, Italian, Mexican etc etc food each piled up as high as Mt Everest and all those tantilising aromas ticklooing my senses coaxing me to completely pig out: “Eat me! Eat me! I know you want to eat me.” THat’s before we even get to dessert and I can’t even think about chocolate without salivating, even in extreme heat when most mortals find the concept of molten chocolate abhorrent.  They want something cool.

THerefore, you won’t be surprised when I tell you that I’ve never left a smorgasbord restaurant without feeling incredibly ill and being reminded of that infamous restaurant scene where Mr Creosote explodes in Monty Python’s: The Meaning of Life:

 https://www.youtube.com/watch?v=aczPDGC3f8U

Unfortunately, my poor brain just can’t cope with sooo much choice and its default mode is:

“I’ll take the lot, thanks!!”

So with that graphic image of over-eating firmly etched in your brains, you’ll understand just how hard it is for me to write about just one aspect of compassion. There are literally limitless possibilities out there and a bit like Mr Creote, I could spew all those fabulous anecdotes and reflections out in the post, which would just be counter-productive….not to mention messy and very, very smelly, stinky and downright repulsive!!

MY instructor helping me up the magic carpet on my first ski lesson in 2013.

Giving me a helping hand: my ski instructor helping me up the magic carpet on my first ski lesson in 2013.

Just a few of the anecdotes I’ve considered revisiting today include address the love of a stranger and the compassionate support I received from my ski instructors who skied back down the mountain lugging my skis, boots and poles so I could take the chair lift back and conserve my small reserves of energy. Their compassion and using their physical strength for good, enabled me to ski down the best slope for my ability and give me the experience of a life time. It would not have happened otherwise and I would never have left the “magic carpet” or beginner’s area. Moreover, my testimony of skiing down the mountain for a second time after overcoming a flare up of my auto-immune disease, pneumonia and chemotherapy would not have happened.

Skiing down the mountain at Perisher in August 2013.

Skiing down the mountain at Perisher in August 2013.

I also wanted to write about some of the ways people actually treat people with disabilities with anything but compassion. Things like parking in disabled car spaces without a permit, crashing into people using a walking stick and how there is the completely inadequate social support to allow people with disabilities to live with dignity. For example, despite have a muscle-wasting life-threatening disease, it took me five years to get any domestic assistance and that is completely inadequate. There are also no long term supports for parents of young children who might be dying or living with severe, disabling illness and who require ongoing child care but lack the second income to pay for it.

Just to compound this sense of paralysis through analysis and compassion overload, I started looking up inspirational quotes about compassion.

Some were beautifully poetic:

“Grief can be the garden of compassion. If you keep your heart open through everything, your pain can become your greatest ally in your life’s search for love and wisdom.”

Rumi

“The dew of compassion is a tear”.

Lord Byron

However, reading through compassion quotes became quite challenging and rather than concentrating my compassion into some kind of manageable, bite-sized portion, it expanded the scope exponentially:

“Compassion, in which all ethics must take root, can only attain its full breadth and depth if it embraces all living creatures and does not limit itself to mankind.”

Albert Schweitzer

“Let us fill our hearts with our own compassion – towards ourselves and towards all living beings.”

Thich Nhat Hanh

“If we’re destroying our trees and destroying our environment and hurting animals and hurting one another and all that stuff, there’s got to be a very powerful energy to fight that. I think we need more love in the world. We need more kindness, more compassion, more joy, more laughter. I definitely want to contribute to that.”

Ellen DeGeneres

Okay. So after reading all of these quotes, I’m starting to think i should go back to the ant I saw this morning lugging that mighty big crumb and offer it a lift. After all, an ant is one of these living creatures we’re been calling on to assist!!

Ouch! Double ouch!! My brain hurts. Really hurts. This compassion fatigue seems terminal!!

But to add further salt to the wound:

“Throughout history, it has been the inaction of those who could have acted; the indifference of those who should have known better; the silence of the voice of justice when it mattered most; that has made it possible for evil to triumph.”

Haile Selassie

That’s why I decided to write about compassion fatigue. Not the clinical version but just the garden variety which anybody with even just the smallest social conscience can experience. After all, each of us only has so many gold coins we can put in the collection tin and some of us, especially those living with any form of severe chronic illness, can feel like we could warrant some charitable donations ourselves. That’s particularly after paying for prescriptions, a medical specialist or about ten or when all our household appliances decide to breakdown at the same time. Moreover, if you have kids, you are the charitable institution. I remember my Dad telling us that: “Money doesn’t grow on trees”. “Kids, I don’t have a money tree, you know.” I don’t know whether we ever believed him. However, I still kind of believe in Santa, the Easter Bunny and the tooth fairy and given their generosity to kids worldwide, there has to be a money tree or at least a magic wishing tree out there somewhere!!

However, all this takes me back to what has almost become a cliche:

Think global: Act Local.

We can not help or save everyone but the chances are that we can help our neighbours in small, little ways that don’t really cost much such as giving people a lift, mowing their lawn and you know what I value the most: a smile and a hug. They are absolutely free and we could keep on passing them on. Well, we would be able to send and smiles and hugs right around the world if Australia, as our national anthem so ridiculously put it, wasn’t “girt by sea”. Gee, that ocean can get in the way at times!!

That’s been my modus operandi for awhile and while blogging and recent world events have extended my scope, I will still focus on the home front. After all, “charity begins at home”.

” I alone cannot change the world, but I can cast a stone across the waters to create many ripples.”

Mother Theresa

I almost forgot to mention this but unlike Atlas,  we  don’t have to carry the weight of the world on our shoulders. The state of the world, the environment and all the people and animals in it are not our responsibiity alone. While as individuals we might be ineffective on our own, when we collaborate we can move mountains. Moreover, through the power of prayer, we can also call on divine intervention. Never under-estimate the power of prayer!! Miracles can and do happen although I must also admit that sometimes for whatever reason God seems to be deaf…just like our kids.

Here are some of the other posts I have written about compassion and tomorrow I will post a selection of posts which were part of 1000 Voices Speak for Compassion.

Brain Plasticity & Saving Two Australians on Indonesia’s Death Row: https://beyondtheflow.wordpress.com/2015/02/19/brain-plasticity-two-australians-on-death-row/

The Aftermath of the MH17 Tragedy: Compassion in Action!! Sowing those precious sunflower seeds: https://beyondtheflow.wordpress.com/?s=sunflower

Emotional versus Physical healing: The Struggle To Heal The Broken Foot & the Sydney Siege: https://beyondtheflow.wordpress.com/2015/02/09/the-struggle-to-heal-the-broken-foot-and-the-sydney-siege/

Love of a Stranger: https://beyondtheflow.wordpress.com/?s=love+of+a+stranger

Skiing: Back to the Mountain Almost: https://beyondtheflow.wordpress.com/2014/08/17/back-to-the-mountain-almost/

Have a wonderful International Day of Social Justice and I’ll start the ball rolling by sending a smile and a hug to you!

If you have participated in 1000 Voices Speak for Compassion, please leave a link and even a brief intro to your post in the comments here for inclusion in a follow-up post.

Love & blessings,

Rowena

Turning My Mountain Around

Now that I have pulled off my Great Downhill Challenge, it might appear easy, achievable, a fait accompli which was never in doubt.

That is the great value of hindsight. Until I had actually skied down the Front Valley at Perisher, even I had my doubts. I was optimistic, hopeful and had put in the hard yards. Yet, the great unknown was still hovering over my hopes like an omnipresent raincloud threatening to burst. All I could do was have a go and do my best. I booked myself into a private, adaptive ski lesson and really didn’t know how things would pan out. Far from being the all conquering hero, I was 100% chicken wobbling on my skis gritting my teeth, holding my breath and staring at my feet. Thank goodness I had my instructor Tom to guide my path. That made all the difference.

My other life- having my transfusion of IVIG. It's actually quite relaxing.

My other life- having my transfusion of IVIG. It’s actually quite relaxing.

Skiing isn’t an easy sport for anyone and perhaps not a good choice for someone in my situation. I was diagnosed with hydrocephalus (excess fluid in the brain) in my twenties. I had brain surgery and had a shunt inserted which largely manages this condition, although I still have some residual symptoms. I also have a serious life-threatening auto-immune disease called Dermatomyositis (DM) which seriously affects my muscles, lungs, skin and digestive tract. I developed DM after my second pregnancy at age 35 and had experienced no prior symptoms. I literally take a dozen tablets every day to manage DM, in addition to having blood transfusions of immunoglobulin every 3 weeks. My DM is considered severe and fairly unstable. My mobility and energy levels fluctuate greatly even within a given day. Most days I have a 1-2 hour nap to get me through the day and I usually wake up feeling like a lump of stone. I can barely move.

Obviously, my medical situation turns any kind of skiing into a fairly significant challenge.

2012...Writing at the snow

2012…Writing at the snow

In June 2012, our family went to the snow using Flexirest funding. My husband Geoff and our children Jonathon and Amelia all went skiing while I stayed down below doing my writing and photography. I was enjoying the view but at the same time, I was pretty upset about not being able to ski with the rest of the family. Moreover, I’d really enjoyed MDNSW’s Adventure Camp at Nelson Bay and now found that I now enjoyed outdoor challenges and wanted to be a part of the action as well. I did do a bit of half-hearted research into skiing for people with disabilities but couldn’t find anything. Meanwhile, the afternoon before we were to leave on our big skiing adventure, the pathology lab rang me directly at home to tell me to go straight to Emergency. They thought I was having a heart attack. My CK levels were also up. Yet again, my life flashed in front of me. We hoped that the DM flare was responsible for the blood test results in which case there was no heart attack but we still had to go through Emergency. As you would appreciate, you never know how long that will take and there was also the usual concern about being admitted. Hospital was the last place I wanted to be. Fortunately, three hours later, we were given the all clear and we were still off to Perisher but my DM was back and my prednisone was also on its way up again…a double whammy!

Family Portrait 2012- I had serious breathing troubles climbing up the hill.

Family Portrait 2012- I had serious breathing troubles climbing up the hill.

Almost as soon as we arrived at Perisher, we spotted the Paralympics ski team zooming down the slopes. They put me in touch with the Disabled Winter Sports Association (DWA). I heard that they had special equipment which could get me down the mountain. The Great Downhill Challenge was born. Instead of trying to climb up the mountain, I would ski down. It all seemed so much easier and I pictured the four of us smiling away as we skied straight down the Perisher’s Front Valley holding hands. That “vision” shows just how much I was dreaming. That’s not how you ski down a mountain, especially as a beginner.

As time went by, I also realised that when you draw a mountain and turn it around, you get a smile. You can even add some eyes and you have a smiley face! I loved that. However, I came to find out that turning a mountain around is much, much easier on paper than it is in the real world. Those mountains have been mountains for a very long time and weren’t designed to be moved at least by me.

Initially, I had intended to do the Great Downhill Challenge as a fundraiser but realised that skiing itself was going to be challenging enough. I also thought it would be better to try skiing first before I committed myself to any great feats of heroism. Moreover, a friend of mine had pointed out that if I staged a down the mountain event, then I’d actually have to go down the mountain. It was only when I stood at the top of Front Valley gazing over the edge in horror, that I understood what that really meant. It was a very, very long way down and I was absolutely terrified. I was quite relieved that I didn’t have that extra pressure.

My first time up the magic carpet Perisher with my instructor.

My first time up the magic carpet Perisher with my instructor.

Membership with the DWA entitled me to 50% off my lift pass and ski lessons. I wasn’t quite sure what equipment I would need and in the end we agreed that I would try a private adaptive ski lesson without equipment to see how I went. My instructor was the wonderful Tom Hodges from Perisher Ski School, who also volunteers for DWA. He has had a lot of experience teaching people with a wide range of disabilities to ski using a range of equipment. I thought I might be needing a sit chair but no. I was out on two skis and Tom who doubled as my anchor. We started off going up the magic carpet and then gently snowploughed down the slope (it was a huge hill to me at this point but in reality it is almost flat!) Tom told me to breathe. Look up and enjoy the scenery. Apparently, I was staring at my boots, holding my breath and gritting my teeth the whole way down. Gradually, my fear eased and by the end of the lesson, I was feeling quite exhilarated and was almost having fun.

Day 2 proved much more challenging. Tom with his big ideas suggested we take the chairlift up the top of Front Valley. I was keen enough. I trusted Tom and ignorance was bliss. I didn’t quite realise we were going that far up and the mountain looked very different close up especially when I was about to ski down. I was absolutely terrified, consumed by fear!!! It was such a long, long way down. I felt like I was perched on the edge of the world about to plunge to my death.

That said, Tom was very encouraging and saw strength in me which I couldn’t sense in myself. He reminded me that I just needed to do my snowploughs and turns like I’d been doing down below and I’d be fine. I fell on a tricky part at the start and Tom held my hands for a bit until I found my footing and gradually let me go.

Skiing down the mountain was much, much harder than I’d ever imagined. Rather than skiing straight down the mountain, I needed to snowplough and then put all my weight on my downhill leg to turn. This took quite a lot of force and I was needing to trust my “jelly” legs which have let me down in much more humble situations. That in itself was scary. Yet, Tom had faith in me and besides, I wasn’t going down the mountain alone. I had expert help where I was encouraged to do what I could for myself but with a safety net when I struggled. Struggle I did. My legs were sore and I was really straining to breathe. I had to stop a few times to rest, catch my breath and take some Ventolin. Apparently, I was holding my breath and clenching my teeth and my whole body was twisted and contorted by fear. Going down the mountain was so much harder than I’d thought but I was doing it. At least, that felt good!

I was certainly no picture of success but that’s what it takes to catch your dreams and finally make them real. You have to push yourself well and truly beyond your comfort zone or there is no challenge.

Somehow, I actually skied down the mountain and survived. I’d done it! I’d turned my mountain around but would I tackle the mountain again? Could I go back? I still had 3 days to go. That was my second challenge and at this point, I hadn’t skied with the rest of the family yet either. That was really the most important part of my goal…for us all to ski together. That was getting harder because the kids were no longer beginners and they were rocketing down the slopes after ski school with Geoff. They were proud of me but I was way too slow.

The next morning was a bit of a turning point. I had a nasty chest infection threatening to put me out of action. I scoffed down some olive leaf extract to fight it off and used my puffer. I wasn’t going to let a cold hold me back. We had one week at the snow. I could collapse when we got home.

My shadow taking the chairlift

My shadow taking the chairlift

I was sitting on the chairlift heading up to mid-station for my morning hot chocolate with cream and marshmallows when I experienced such pure peace, serenity and weightlessness. It was like an out of body experience where all the heaviness of my tired limbs and heavy ski boots were gone and I was just floating along like a bird freed from all restraint. Feeling so unbelievably good and that liberated, I considered spending the rest of the holiday just going up and down the chairlift instead of skiing. Take the easy way out. Why push myself when I could just relaxed and have fun?

Enjoying the view without skis at the top of the Quad Chair, Perisher

Enjoying the view without skis at the top of the Quad Chair, Perisher

However, I remembered my battle with the violin and how it took time and a lot of practice to get over that beginners hump before I could actually enjoy playing. It takes 10,000 hours of practice to succeed so how could I possibly expect to ski like a pro after just two hours? I decided to spend more time practicing where I was comfortable on the carpet before I tackled the mountain again. I practiced, practiced and practiced and by day 5 on Friday, I again felt able to take on the mountain, although this time we went halfway and did it twice. Geoff joined us the second time round and Tom did a great job capturing the moment on the Go Pro. For once, I wasn’t behind the camera.

I still had my L plates on and my instructor in tow but I had become a skier. Me with jelly legs, dodgy lungs and a shunt in my head had actually conquered the mountain or at least a small part of it. Awesome!

At 4.58 pm Friday afternoon, just minutes before the magic carpet was closing on our last day, the four of us finally skied down the magic carpet together. We weren’t holding hands but the kids and Geoff were following my lead and we finally skied down the mountain together all smiles!

Together, we had turned the mountain around!

PS You can beat one mountain but you can be sure that another mountain is just lurking round the corner. This year, I waited until we arrived home before I had my blood tests. Wise move. My Professor just called. The dermatomyositis is on the march again. CK reading of 423. Not too bad but heading the wrong direction. Let’s  hope I start going down this mountain again soon!