I caved. You rock.

 

Photo of a climber high up on a rockface in the Odyssey Adventure, Waitomo Caves, New Zealand

I don’t have a bucket list. It seemed like a stupid thing to have when I was sick, like a pointless fantasy.  So while the well-world went about inventorying all their possibilities, I thought more about the small things I would love to do when I was well. More baking for my family. Swimming in the ocean. Making memories of connection and authenticity; creating those little moments, that pieced together would someday provide comfort for the people I love. Like a soft woven wrap to draw around themselves when I am gone. Like I do with the memories of my mother.

But like all the things I never realised about the ‘well-world’, being in remission has me thinking about this bucket list phenomenon. I suspect the list I am developing is a ‘fuck-it list’ (pardon the crude word, but it rhymes and expresses my feelings in a satisfying manner!) I am seeing opportunities that I never would have taken on previously and thinking ‘…ah, fuck it.  Why not?’  Things that never would have been on my radar before I got sick, because, let’s face it; who in their right mind would want to rock climb inside a mountain?

The thing is, if I can go through all those years of sickness, I can do most things. And yesterday I figured if I could put this fat body in front of a camera, I could put it on a caving expedition too.

Let me preface with the fact that the last time I climbed anything was a tree when I was a teenager. I’m not agile, I’m not yet fit. And I am carrying a lot of weight, even for my 182cm frame. I’m 110kg.  So when we arrived at the Legendary Blackwater Rafting Co. in Waitomo (I was with our friend Tatijana from Macedonia, and CC from China) the plan was to glide on black inner tubes through the cave rivers, under the glow worms. It was a real disappointment to discover that the rains had flooded out all but one expedition: the most challenging of the three expeditions, the extreme 5 hour Odyssey caving adventure through the heart of the mountain.  Humouring the girls (both teeny creatures), I agreed to see if I passed the ‘fit test’, where you have to physically force yourself through a tiny low tunnel constructed in the ticket office. It bends around a corner and the theory is, that if you can fit through there, you can fit through the cave crevasses on the trip. Inside the fit tunnel, I had a little hyperventilation moment. Two young tourists I didn’t know giggled at my predicament. I said no to joining Tatijana and CC on the trip.

We went for lunch at the nearby Huhu cafe.  It was delicious. I enjoyed a glass of wine with my lunch, and as I sipped, our waitress (who summers as a cave guide) wanted to know why I wasn’t joining my companions on the climb. I explained the fit test squeeze and she said her partner who is bigger than me could get through the mountain, so I could too.  And besides, the tightest bit is only ten minutes long (puh! says my hindsight!). Was it her?  Was it the wine? Was it the encouragement of my tiny and enthusiastic companions?  We went back to base, I spoke with the cave instructors, and I signed up.

Note the relative size difference between me and my fellow cavers....
On our way to the cave entrance, me and my tiny companions felt excited…. the relative size of us will help you see how small the spaces were in the photo below.

Even when they attached my harness and ropes to me, I didn’t really think about why we needed them. Even when they put the helmet on my head, and passed me some men’s size tens, I didn’t really think about what was ahead. I suspect my brain had ceased all extra function, I was already into the first challenge of my trip, and I was all denial. It’s nothing I thought, it’s been done before, it will come to an end… it’s fine.  Thoughts ominously reminiscent of going into labour.

CC inches her way through a tight spot.
CC inches her way through a tight spot.

About five minutes into the cave, I had to bend double to fit under a rocky outcrop. “I hope there aren’t too many of these” I thought, clueless.  At that point, my feet were still on flat ground and I had balance in my favour. For the next two hours, I would be squeezing my generous self through the narrowest spaces, balancing all my weight on one toe, or holding myself up with my weakling abs and two fingernails. It was a kind of torture. The girls ahead forged on, laughing and chatting with the instructor who was guiding them. My instructor, Tim, calmly pointed out footholds he liked to use. Inside my head, there was a litany of swear words for Tim and his favourite footholds. I wrestled my long, large self, up, over and under the bumps and edges of limestone, willing myself onward. Sometimes, my legs were so weak I had to lift them by pulling on the fabric of my overalls.  Sometimes Tim would push my foot into a hold, and once, he planted his hands on my bum and pushed me upward.  I was so horrified I lost my grip and slithered back down the slippery rocks; he broke my fall.
“I’mfhotyu!” (I’ve got you!) he tried to say, but his voice was muffled by the arse in his face. It was not my finest moment on (in) the planet.

The two hours of ‘squeeze’ replay in my memory as a kaleidoscope of close up views of rock. The feeling of rocks pushing against my back and diaphragm, the pain of resting all of my weight on my knees or hands, the scrape and panic, the trap and terror. But just like labour, I kept going, thinking that the only way ‘out’ is to keep going onward. I tried to focus on my breathing, on the circle of light from my helmet. I looked intently at each section of rock in front of my nose, refusing to let myself lose it.

 

OLYMPUS DIGITAL CAMERA
…the rock just happened to match my nails. This pic was taken before we went off the path, while I still had the presence of mind to notice the similarity.

 

“Attach your clippers now” said Tim. His voice even and controlled. I looked down. Beneath me, maybe four or five storeys down the crevasse, was a roaring river.  Between me and the end of the trip was more rock, more rope, more dizzying heights. There were intermittent slippery little metal staples to hold or stand on, and every couple of meters, we had to unclip and clip our safety harnesses from one section of rope to the next. Sometimes, to do that, we had to lean outward and use our body weight to make the ropes taut. I could hear the roar of the rising river below us and the hammering of my heart.  Twin thunder shouting at me to ‘get out!’. I intended to.

 

Abseiling down from the top of the crevasse. This was near the midway point.
Abseiling down from the top of the crevasse. This was near the midway point. My face may be smiling, but my eyes tell the truth!

 

Twice, we had to trust our harnesses and swing out into space.  Once, we abseiled. Neither were things I have ever done before. I panicked with the abseiling. The rope burned the print from my palm because I was gripping it so hard. I was far beyond my maximum ability to keep pushing on, and yet I was. Tim was ahead now, and had cheerily set up afternoon tea at the bottom of a gully. I lurched into the space and sat my shaky self down. I swallowed the sugary cordial in great gulps, it tasted so good! Ems, the other guide, fastened her big brown eyes on us. 
“Want the good news, or the bad?” she asked. I couldn’t respond, I just stared at her. We had taken three hours to traverse the first half of the course. There was at least one and a half to two hours ahead, of even higher terrain. I looked down at my shaking legs and hands, wondering how I could do it. And she said “there is a way out from here if you need it”.

I caved.

Striding forward, up the spiral pathway to the outside, my body surged with new energy. I was going to see the outside!  I tore of my helmet, and stepped out into the air. The wind whipped my hair sideways. The pale sky rained over my face and muddy caving gear. I tipped my face upward and grinned at myself. I didn’t give a monkey’s about not making it the whole way, I was utterly delighted that I hadn’t died, wrapped in rock, pinned under the mountain. I was free.

OLYMPUS DIGITAL CAMERA
The most beautiful view of the expedition: the way out.

I don’t think I will ever try caving, abseiling  or rock climbing ever again, but I am glad I did.

As I write, my arms ache from the push and pull of my afternoon underground. My limbs are bruised and swollen, but my self-belief is soaring.

So, I caved. And I caved in. And I made a memory with Tatijana and CC that none of us will ever forget. A small piece in the tapestry of our lives that will connect us forever.  And for me, more proof  of the universal fact that we are never what we have always thought we were. We can do things that we imagine we can’t. We don’t need to limit ourselves because we are fat, or unfit, or fearful -or any other combination of self-limiting descriptors. If any of these things are holding you back, maybe you should start a ‘fuck-it’ list, too.

I’d just like to acknowledge all the beautiful people I know who are still pushing through the relentless difficulties of being sick, or caregiving for someone who is. Climbing through the mountain yesterday was so hard, but even at it’s worst, in the seconds of sheer terror, it was not as hard as the long journey through Dysautonomia. I tip my helmet to you, because you are the true boundary pushers. You are the endurance athletes. You are the explorers who discover ways to live with meaning through all that struggle. Two words for you my friends.

You rock.

Shipwrecked

There is a specific kind of guilt that can plague survivors who got through something life threatening and come out the other side. Maybe it was an accident, trauma, war, hostage situation, cancer, domestic violence, child abuse, hurt. The guilt swoops in once they realise that they survived but others did not. So the question ‘why me?’  ghosts through their minds, shining spotlights onto every part of them that is not worthy of the gift of survival.

I do not deserve this. Everyone does. So why did it happen for me and not for them? How can I make sense of it? What hierarchy of soul assets could ever possibly qualify me to deserve reprieve when others get none?  None of what I have within myself is superior to any other human. Is it all pure chance? Luck? Universal benefaction? Godly miracle? Alignment of planetary bodies? Karma?

 

picture of an oil painting by John William Waterhouse (1916) of a redheaded girl looking out to sea at a chip being wrecked on the rocks.
Oil Painting by John William Waterhouse 1916 “Miranda -The Tempest”

Why me?

Why not me..? Answers back. That small audacious whisper. I hush it back into it’s corner. How dare it speak up? The mirror in which I examine my value magnifies my insecurities.

It was easier to wonder why not me when I was sick. Worthier. It was easier to push, using all the survival drive my physiology could muster. Why not me? I tried and sought and searched and strived. I wanted to survive. And now that I am thriving?  I wonder if it is a monumental case of mistaken identity, was it meant for me?  I fear that I cannot do it justice. I exhaust myself with my desperate need to never take anything for granted; gripping on to the epiphanies of illness.  I prostrate myself into works of compensation, trying to redress the balance that tipped things into despair and took so much from the people I love. I burn the energy that has been gifted to me on the backlog of yearnings. The things I missed. The things I couldn’t be. The person I think I could be but maybe, will not.

I just want you to know, you who continue to suffer, I want you to know that I have not simply sailed off into the sunset. I struggle to write for you because I feel like my remission has given me something you don’t have, and that feels unfair, like a betrayal. I wonder if you find my words aggravating, or boastful, a reminder of all that you cannot do. Those among you that are close to me have assured me that my story brings you hope, but I worry that it also brings you pain. Because, see? There I go again. Doing the things you can’t do, living the life that eludes you. And I do want to live that life, because it is mine.  I even want to go sunset sailing, sometimes, though I have no sea faring vessel. I want to run away; I want to stay.

One of my favourite poems is by Christina Rosetti. There is a line that expresses the way this feels

“When I half turn to go… yet turning, stay.” 

I have never been a goodbye girl. I won’t do it. So I remain here, caught on the cusp of sick and well. My hand reaching out across the divide between our experiences, the distance between our hands growing every day.  I think I have that hated thing called ‘ableism’. Because I do believe, with all my heart, that there is a massive difference between being well and being disabled through illness. And I think it is better to be well.  I think most of you with Dysautonomias think that way too, but dwelling on that is too painful. When ‘well’ is out of reach, people make do, we find joy, we build meaning where we are. It is a triumph of psychology. By far, the hardest thing I have ever done, was staying afloat through all those years. I was not always successful. When I sank under, you lifted me.

And here I am, washed ashore; not drowned. Dry, standing at the edge of continental opportunity. I have caught my breath. But I stare back out to sea wondering if you are treading water in shark infested waters. Willing you to keep your heads above water, to find the flank of our ship wreck; to hang on. My soul flies across the deep but the winds and tides can’t hear me. I am impotent to ease your suffering. And I am sorry.

So sorry.

Fingers Crossed

At last.  I have a new neuro.  Henceforth referred to as The Newro. 
 Of course, I don’t currently need one. An irony not lost on me this morning!

fingers crossed

I am still full of the new-doc-jitters that some of you know all too well from first hand experience. You’re not sure how much info to take with you. You’re not sure if they will like you enough to want to help you. You’re not sure if you will be the tenth in their clinic, or the culmination of a very bad week. You do know they will be time poor, that goes with the territory.  You know they will be very very smart.  And that makes you a little trepidatious, because so few of the very very smart ones have social expertise. You steel yourself to answer all the questions without being extraneous or verbose. You hope that you’ll just be able to converse. Like humans.  You decide your plan is to just turn up and talk about things, because that seems the most sensible thing to do.

In addition to these new-doc-nerves, I feel a strange sense of illegitimacy.  It feels profoundly odd to be heading into The Newro’s rooms when I am feeling so well. I doubt if he has any well patients at all.  But if I don’t take this outpatient appointment with him, introduce myself and explain why I am hoping he’ll take me on, I may find myself sick again and without a neurologist. In our public system,  that will mean a long delay before I am on the neurology outpatient books again. I guess I am insuring myself against possible relapse, getting my ducks a row. I was first recommended this neurologist over a year ago, when we paid to see a private Rheumatologist, so we could rule some things out. He felt I needed a Neurologist who had an interest. And he knew one he thought would be a good fit.  Then six months after that, my neuro-immunologist asked me if I had a neurologist I would like to be referred to. I remembered the name of The Newro and the referral went in. So it’s been a convoluted journey.

I’m secretly hopeful he might have a fresh perspective on things and might be able to shed some light on why I have responded so beautifully to high dose steroids when it doesn’t seem to do the same for all Dysautonomia sufferers.  My immunologist and neuro-immunologist are at a loss about that. And I wonder if he has some theories about cause, and some ideas of what we should do if it all comes crashing down again.

I’ll write some more after the appointment. Right now, I’m off to my girl’s school assembly.  She’s in line for a certificate and I want to wave at her and see that shining face grinning back.  I’ll be walking to school, up the hill. I won’t take half an hour to do it, like I used to, with sitting stops staged along the way. I won’t need time to gather myself before the other parents arrive. I’ll leave with five minutes to spare, plonk myself down beside one of the mums I know, smile and chat and be the ‘normal’ person I am becoming. After that, it will be straight out to do chores before picking up the hubster on the way to the hospital. Me at the wheel. (Did I tell you I have new wheels?  So exciting! Even more so because we didn’t have to buy something mobility compatible.  We just bought a used car straight off the lot. It was lovely). So many things in one day. I remember how doing one thing in one day was sometimes too much. I’ve come a long way.

I will try to be mindful, today especially, of how it was before. I want the Newro to understand how vastly different things are to how they were. I want him to offer to help me if I start to slide back there. I hope it will go okay. Fingers crossed.

 

Er, right.

I had a lengthy debate once, with the hubster and one of his friends.  We were talking about ‘rights’.

I said there was no such thing, that human beings don’t have any rights at all.  That rights are a construct we have built to make us feel that things are fairer. But they are not fair. Ask the child suffering from malnourishment, whose parents have both died of AIDS, if they understand their rights and they will look at you with blank confusion. Yet here in the West, we make sure everyone in the hospital gets a brochure so they know what their rights are. We protest against the inequities of life in an attempt to right the balance.  We talk about right to life, and right to shelter.  We are deeply offended when our rights are breached. Because they are our rightful expectation, right?  Hubster’s mate was outraged by my perspective. He found it ridiculous, which didn’t offend me, because I’m not that righteous about my view on rights. I’d love to know your opinion on the matter. Here’s mine, for what it’s worth.

We are all, in any given moment, subject to the kinds of events that render the socio-political construct of ‘rights’ useless. What rights did the victims of the Beirut bombings get to exercise last week?  The Chinese flood victims? People struck down with illnesses? Mothers who can’t conceive? Children born drug addicted? Victims of sexual abuse? Are the rights we cling to so idealistically, only for the lucky people?  Is our attachment to our ‘rights’ what causes us pain when our circumstances ignore them?

I listened to an interview with Dan Carter on Newstalk ZB the other day. The sportscaster was asking him about his stunning final game with the All Blacks in this year’s World Cup. He made this comment:
“Well, Dan, you deserve to go out on a high after the stellar career you’ve had…”
Dan interrupted him: “-Um, no. It doesn’t work like that.  People say I deserve this or that, but the truth is, sport doesn’t care if it’s your last game.  Your opposition don’t decide to be kind so you can go out on a high. Injuries happen, losses happen.  It’s just part of the territory.  I keep smiling about that game because it could have been so different.” I am paraphrasing, but that was the gist.

It struck a chord with me, because I’ve noticed it myself a lot lately.  When people hear about what has been happening with my health, and with my new work as a plus size model, the most common reaction is “Oh Rach, that’s great!  You deserve it after all you’ve been through!”  The human race loves fairness, doesn’t it?  We love it when hardship is repaid with success. We love it when difficulty is answered with a time of ease. It suits our inner justice-o-meters.

But I don’t deserve wellness any more than the next person.  It’s a gift. For every one of me, there are thousands of people suffering with Dysautonomia who are struggling every. single. moment. of. every. single. day.  They’re not less deserving. It’s not like the universe has weighed us on a massive scale and decided that I get to experience feeling well because I deserve it more than them. Just like being a western middle class citizen of the world isn’t an inalienable sign that I am entitled to have ‘rights’.  Some things, some life things, are just pure chance, pure kismet, absolute, joyous, happy luck. A gift.  At this time in history, in this body I got, I get to live a life full of benefits. I’m not more worthy.

I’m fortunate.

So my question is, if you have also been gifted with health, either just recently, or maybe you’ve been lucky enough to have it your whole life… have you been making the most of it?  Are you throwing yourself into things and enjoying the gift of chance that enables you to live with freedom?  Don’t waste it. Spend it well.  Do it for all the people out there who can’t.
Take the chances you have been given.
Be bold. Step up.  Step forward.  Speak out.  Stand tall.

XXX

This is a picture of the most stunning, hand-lettered poster my friend Tracey Hassell sent me from Perth.  She asked me for my favourite quote, and then this appeared in the mail. I love this quote so much, because for me it is a reminder of my purpose. I will never forget the lessons I have learned over seven years of illness. I will never forget that people are still suffering while I am not. And that is a greater gift than feeling well. I feel deeply privileged to have walked that road alongside some very beautiful souls.  There’s something in experiencing all that which feels more right than most things.  I get it. I have no rights. I am alive, I feel well.  I am stupendously fortunate.

Screen Shot 2015-11-17 at 10.59.19 am

Standing, still. Moving forward.

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The lights cast a soft whiteness across the photographic back drop. The studio is quietly humming. The equipment pops and flashes for each shot. Nods and short sentences between the photographer and stylist. I’m standing there, in my tenth outfit of the morning, swishing one way and another, a small dip of the head, a smile at some imaginary friends, a little on-the-spot walking action… it’s a sequence of movements like a slow motion dance. I am handed a bag, someone teases a rogue section of my hair.  Someone else adjusts my sleeve so the wrinkles will fall ‘just so’. I am modelling.

I smile at the lens, my mind racing along with the shoot, keeping up but in a parallel reality. I’m stunned by the surrealism of it all. I find it hard to compute that I am here, doing this. I’m not sure how long it will take me to adjust to feeling this way. Only 6 months ago I was struggling to manage daily life. Standing was my nemesis. Yet I have been on my feet for two hours straight… and I can still smile. Flash!  Pop! I feel my calves flex to keep my balance in my size-too-small prop shoes. I’m really doing this. Still standing.

“That’s it, we’ve got it!” smiles the photographer. The stylist and makeup artist give each other a high five. We. Are. Done.  Everyone thanks everyone. I change back into my own clothes. And just like that I clock off from another shoot as a curvy model. It’s such a fun and affirming thing to do. I feel like the luckiest girl in the world. I’m being paid to try on clothes and show people how they really look on a curvy body. I’m contributing to the kind of online shopping environment that works for curvy girls. I can’t count the number of times I have not purchased online, because the model looked too small for me to really understand how the clothes would fall. It makes me happy to think that there are DD-cup+, curvy girls out there who will purchase clothes this season because my boobs and bum provided some realism to help them with their shopping choices!  Here’s to the bootylicious bods out there, and some fair representation!
Here’s a grainy phone picture of me all glammed up, on my way home from yesterday’s shoot:

I’m really doing this. I'm still standing.(2)

But besides the representation of plus-sized bodies, the glamour and the fun of doing a shoot, there is always something running along underneath, for me. An incredulity. An awareness that just standing is still a dream for so many of you, just as it was for me, not so long ago. I remember how that felt, longing for a body that could do the normal stuff; every present moment is echoed with the contrast. I carry my past with me, I carry a knowledge that I can never forget.

And it is precisely because of all those years that I am seizing the day! I am doing what I can, because I CAN! But I have not forgotten you, out there. I stand for you as much as I stand for me. With every health win, every symptom I walk away from, with every medication I wean off, I am laughing in the face of Dysautonomia. Take that!  See this? Wham. In your face mother plucker! I so hope that if you have been following my journey, you feel me carrying you into everything that you cannot do. Into all of my upright hours, through all of my busy days. You are with me, in spirit if not in body. Your own body biding it’s time, battling it’s own way through the maze. Hanging in there.

I stand for you.

I stand for a world that is kinder to people like us.
I stand until you can.  I will stand as long as I can.
Hang in there my friends.  Hold tight. Never, ever let go of whatever it is pulling you onward.  Because if this can happen for me, then that means, it is possible.  If I have this reprieve, this time of plenty, this freedom to be who I always used to be, then why not you, too?

It’s a paradox, but nonetheless, here I am standing still and moving forward.
Kia Kaha.

*the necklace in the image above is from Uberkate. She ran a competition last year for women to nominate their friends/sisters/mothers using one word for the pendant.  My friend Nettie nominated me and chose the word ‘standing’. My sister in law Cathie seconded the nomination.  And they won it for me! It is a necklace I treasure.  I wear it every day and it draws me back to my purpose every single time I look at it. Thanks Nettie, thanks Cathie, and thanks Uberkate!
** Nettie has a blog called I Give You the Verbs. Which tickles me, because in winning that necklace for me, she literally gave me the verb! 😉

In Your Time

Tonight I’ve been taking it slow, listening to Bob Seger and letting a stressful day fall away.

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On Sunday, I overdid it a bit.

There was blogging, a birthday breakfast, a bike ride, presents, pilates, a few thousand loads of washing (actually only around five, the rest still wait), dinner, a long walk, a bath and bed.  It was the perfect day, the perfect spring weather. It was everything gorgeous. That list of activities in one day was unheard of, for me, before. And because I was in high spirits and feeling invincible, seizing the day and smelling the roses… you know, that kind of amazing day… I overdid it in a rather large way.   It was also daylight savings in our part of the world, where the clocks go forward one hour.  And that means I did all of that in even less time!

On Monday I woke to a familiar feeling. Overnight my muscles had become encased in concrete, my brain invaded with a fog I couldn’t shake. The nausea I was so quick to forget rolled back in over my horizon. I opened my eyes to a day that filled me with fear. Is it back? Are the good times over?

It’s hard not to worry about that. The niggles in the back of my mind as I laboriously mount the stairs.  Stairs I ran up only last week.  It must be the pilates, I think. Yes, that’s it. That’s all. It’s normal.  Yesterday I told the hubster I was feeling a bit below par. It’s the lag from daylight savings, he reassured me. Everyone at work is feeling below par too. That’s what it is.

Tonight he came home and found me looking out my bedroom window from my old perch on the bed. I haven’t been here during the daylight hours for a while. Not feeling this way. The kitchen was a fright, an entire jar of powdered ginger fell and I couldn’t face bending to clean up the mess.  I left it on the floor and came to lie down. My tears surged upwards when he looked at me with those lovely eyes full of concern. Do you think it’s back? he said, his voice quiet.

I hope not.  I’m just taking my time.  A bit slow today,  I said.
And probably, that’s all it is. Just a bit tired. A bit of seasonal lag.

I’d like to be able to feel tired and not worry. I’m trying to focus on taking it easy and breathing through the fears.

This song was on the playlist tonight and it made me feel a bit better. Are any of you out there doing things in your own time tonight?  I wish you a restful night of refreshing sleep.  As Bob Seger says:

And after all
The dead ends and
the lessons learned
After all
The stars have turned to stone
There’ll be peace
Across the great unbroken void
All benign
In your time
…you’ll be fine
In your time.

8 Great Things you can do to Live Well with Chronic Illness.

I sat yesterday morning in the infusion centre beside a beautiful woman called Christine.

We always try to sit together when our dates coincide in the infusion room at Auckland City Hospital. She goes more regularly than I do, for her regular vials of IV Immunoglobulin.  Every fourth Monday since we first met, we’ve been sitting together while her IVIG boosts her fight against Myasthenia Gravis, and my Pulse Methylprednisolone suppresses the cause of my Pandysautonomia. She’s great company.

I am always impressed with Christine.  In the face of some truly difficult and devastating challenges, she always looks beautiful and is beautiful.  Carefully groomed, well dressed with such a warm and  lovely nature.  She always has a bag full of occupations to keep her busy.  Yet, she makes time to chat, to ask how things are.  She remembers my kid’s names and cares about what they’re up to. She works part time as an English tutor and is studying the Maori language in her spare time. She is a devoted mother and grandmother, wife, neighbour, online patient forum member, and friend to many. I honestly can’t comprehend how she manages all of those things, every day, and a severe chronic illness as well. But her example makes me want to be better at living with chronic illness. She has made me think more about all the things that we can try to do, to distract, manage, cope with and transcend chronic illnesses.  She is one of the people I look to for guidance, carefully watching how they do it. There are some incredible people out there to learn from, I bet you know some too.  You probably see one of my sources every time you look in the mirror!

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Here are the 8 of most effective ways of overcoming I have observed in the world of chronic illness.
Some strategies:

Get Right-Brainy

Knit, crochet, write, listen to music, paint, sew, create, play an instrument, make, or do whatever it is you can do within your ability. Remember the complete satisfaction of creativity? It’s transformative, distracting, wonderful.  Listen to creative people talking about their creativity. Invite creative people over to teach you techniques. Watch YouTube tutorials. Do some online courses. Search for ideas. If you can, attend cultural events, musical recitals, the ballet, a musical, a movie festival, poetry reading, gallery or museum.  If you can’t, visit them online.

 

Source: http://meetmeatmikes.com/craft-saves-the-day/
Used with the generous permission of Pip Lincolne: http://meetmeatmikes.com/craft-saves-the-day/

Get Involved

Participate in the initiatives and events being organised by your patient groups on facebook and elsewhere.  Get to know others. There is so much soul-food in the solidarity of people who have travelled the same paths as you. Engage with them. Help fundraise for research. Get the word out in whatever ways are available to you. Post, and comment in patient forums. Ask questions, help out with the knowledge you have gained on your journey already. Finding your tribe is so good for you.  So affirming.  And there are always avenues to be proactive about the circumstances chronic illness has given you. Being an involved member of society is a wonderful way to begin to overcome.

Get Ready

I have spent days that became weeks that became years, living in old jeans, t-shirts and sweat tops, or staying my PJs. It made me feel even more grey and unattractive.  If you can manage it, find a position that works for you near a mirror and put on some makeup. Brush your hair and find something nice to wear, even if it is simply a favourite scarf. Sometimes, getting ready for the day, even if it is likely to be the same as yesterday, makes you feel a little brighter.  I don’t understand the psychology of that, but it just somehow seems to work. When my Mum was battling ovarian cancer, she spent some time with the good people of the ‘Look Good, Feel Better’ Foundation. She came back armed with bags of goodies, a stunning make up look they had helped her to create and new ways of styling her headwear. She walked taller, smiled more and reported more energy when her lippy was on. It’s a kind of magic for the self esteem, somehow.  A lesson I need to remember more often.

It changes how you see yourself, which

Get Outdoors or Bring it In

Even if getting out takes enormous scheduling, incredible effort and results in days of payback, try to get out when you can. Try to make it into the outdoors to look at the beauty of that sky, to breathe in that fresh air and feel a breeze on your cheek.   Even rain feels incredible when you have been stuck inside for too long. I have never felt so amazing as when I floated in the warm sea on my back, blue sky above and white sand below. It’s so therapeutic. We are born for nature.  If you are bed-bound, see if someone can bring you something beautiful from outside from time to time. My kids have always been so lovely with this. A cicada shell, a posy of autumn flowers, a droopy dandelion seed head with all the wishes, wished.  Treasures from outside to hold and to take your mind out there. Maybe you miss seeing all that beauty for yourself and it’s impossible.  Take a look at my photo series from Be Couper: How to Just Be.  She has generously shared some of her stunning photography for my readers to lose themselves in, when nature needs to come to you.

Be Couper Yellow Skies

Transport Yourself

Reading, listening to audio books and watching television series or movies will take you places!  Overcome your reality with a healthy dose of fiction. It’s brilliant to vicariously live the experiences you can’t easily have. Audio books are particularly helpful because you don’t have to lift the book or strain your eyes.  Libraries usually have a good stock that you can order. Sometimes even online!  The Book Depository has free worldwide shipping and a staggering range of titles if you prefer to buy. When I really want to get outside of myself, I call a close friend or family member overseas and indulge in a long chat. Imagining the things they tell me about, where they are, how it looks, how it feels. It’s armchair travel with the joy of connection. Bliss.

It changes how you see yourself, which(1)

Laugh

…because laughing raises your endorphins and happy hormones can’t help but leave you, happy!  Watch the comedy channel. Listen to children talking amongst themselves or playing games. Be silly.  Pull faces and do funny accents. We have a dress-up box and nothing makes the kids giggle so much as coming home to find mummy in an odd wig. Wear crazy things, if that is your thing. Listen to podcasts from clever comedy writers. Read funny blogs. Let your children choose your clothes for a day. Google jokes on subjects that you find funny.  Tell them to people. Recall funny memories and tell them to the kids. Friends.  The nurse.  And when you laugh, make it big!  Breathe deeper, laugh louder, linger longer on the funny bit. It’s good for you.

Find ways to tell people how much you(1)

Give

Chronic Illness teaches us so much.  We often would rather skip the lesson, thanks. But we get it. And consequently, we ‘get’ a lot about life; about what is important. About how to truly love. About patience, compromise, honesty and communication. Be generous with that hard-fought wisdom. Be a good listener. Do you have a talent or skill that you can offer?  A wonderful person I know is severely debilitated by her illness. She volunteered to cut up blankets for the SPCA.  Because she could do that.
Do the household tasks around you that are achievable. Fold those clothes.  Chop the veggies in your bedroom or set-up on the kitchen floor.  Whatever works for you. Maybe there is something else you can think of that you could do for someone? Find ways to tell people how much you appreciate them.  Because being generous is one of the ways that human beings become happy.  If you can’t give of your energy; you can give of your heart.

Find ways to tell people how much you

Find Your Thing

All of these strategies are things I have observed in people I admire with chronic illness.  Some of them work for me too. But for me, the greatest of all is writing. It is my favourite overcoming tool. Writing a blog is a focused habit of writing that I use as my therapy, my release, my way to help, my journey to memory, my connection with my community. If you would like to try blogging too, I recommend it. It can open doors you might never imagine. Being part of the blogging community has also introduced me to some of my favourite regular blog reads. It has given me a format for my research and learning around Dysautonomia and an avenue for meeting people I may never have met if I hadn’t begun to write. I can’t thank Kylie at Rainbows and Clover enough for starting me back at the keyboard, or my fellow Dysautonomiac, Michelle Roger, for sparking this blog by doing such a rad job of her own. And of course… Pip Lincolne for teaching me how to make it happen! I hope that someone else out there might find the spark too.  It’s helping me overcome, every day.  Ask me about it!  I have an online course recommendation! 😉

Whatever methods you employ, don’t give up. There are always, ways to overcome.

Find ways to tell people how much you(2)

Have I missed some good ones?
How do you distract yourself from the daily realities of chronic illness?

…and Christine? You are doing brilliantly. Thankyou for being such a stoic, thoroughly great person to infuse and enthuse with. Kia Kaha.  Stand Tall.

NB. to my shame, this one of the only Maori phrases I know, but it is useful and pertinent for a girl like me, I use it all the time!

 

Another Mother: A Story in Two Parts

I’ve been enjoying the writing prompts that are sent to me by a website I write for.
The Mighty are a wonderful platform for sharing stories that illuminate the lived experience of people with disabilities or invisible illness, or the stories of their caregivers and loved ones.  Their tagline reads
We believe in the power of stories,
the strength of communities
and the beauty of the human spirit.

Recently, they asked this:

Describe a time you saw your disability, illness and/or disease through the eyes of someone else.

I haven’t written this piece for them because it doesn’t really fit their format, there will be other things I can write for them.  This is fiction, but close to my reality at various times in my illness.

I noticed another motherPerched in the

See, their prompt got me thinking. It’s hard for me to see my illness through the eyes of someone else.  I don’t think other people have to feel any particular way about it.  But I wish with all my heart it was easier for others to understand it. I fully comprehend the perspective of well people, because I have been one. The sad fact is, that other people very rarely do see my illness.  Even when I am right in front of them talking to them about it.  So I began to think about who I was before.  I think ill people need to remember who we were before. It helps us to understand the gap between.  So this piece kind of evolved out of the idea of what might happen if the ‘other me’ met the ‘sick me’ at a school parents’ function.  What would each of us think? And how hard would we really try to understand each other?

 

other(1)It’s difficult. Attending these school parent functions.  You’d think it would get easier, the more you do.  But no! There’s what to wear and the fuss with hair and makeup.  There’s making sure the husband is home in time and the babysitter is up to speed with the kids’ routine. All the way to the function, we’re lamenting the fact that we never seem to get a babysitter so we can just go out and enjoy ourselves as a couple.  It’s always for work events or school functions.  Hardly ideal dates. We promise we’ll do that. But I wonder if we will. We’re always rushing about and there’s no time to pause and enjoy. It’s difficult, contemporary living. The juggle between work and life balance.

I know my husband will be off talking with a few of the other Dads within minutes of our arrival.  And so I locate my inner steel.  I’m wearing the right shoes, so I pull myself up taller, matching my heeled posture.  A glance around the room tells me I was right to prioritise the pedicure over the gym this morning. Although clearly, most of these women managed both. Polished, white teethed smiles flash across at me as I move over to a group of Mums I know.  We are still uneasy together, but I take a deep breath and remind myself that we are all in the same boat.  We greet each other cheerily and the conversation resumes about the teacher. She is all slender sophistication, that one. I spot her mingling with another group.  A father gazes at her with adoration in much the same manner as I have seen his son.  It’s sweet. I self consciously watch the diamonds flash on a finger wound around the stem of a wine glass.

Wine.  That’s what I need!  I smile back at the familiar faced group and make a quick detour to the bar.  Hubby catches my eye and nods a silent order. Fortified by familiar feel of the cool glasses in my hands I deliver his and make my way back towards the huddle of women I’d been chatting with.

On the way I notice another mother perched in the shadows along the side of the room. She looks a little pale and is a bit hunched over.  Uncomfortable in her own skin.  I feel for her, and I wonder if she is a bit socially awkward. Then I notice her cane. Oh, she must be that sick one.  I heard some of the mums talking about her once.  Her son is a playground troublemaker.  I remember making a mental note to avoid adding him to the birthday party list. Apart from looking a little unsure, she doesn’t really look sick. I couldn’t remember what it was that was actually wrong with her.  Something weird. Maybe she’s weird?  I thought. She doesn’t usually come to these things, I wonder why she is even here tonight, if she is not even going to mingle?  And then, in spite of myself, I am walking towards her, smiling and pulling up a chair alongside her.  I really hope I am not going to get stuck here for long.  I do find myself in these situations, don’t I?  My hubby always rolls his eyes at me when I do this.

Talking with her isn’t easy. She is struggling to smile and make small talk. Her husband looks our way and sends me a thankful smile. Oh no.  Now I am really stuck. But before too much longer, we have relaxed into a conversation.  We talk about our children and the upcoming school play. There is some laughter and commiserations about the hassles of dealing with babysitters. Hard to find good ones these days. I find myself looking at her intently. There is a shadow of someone else around her eyes. Did I once know her, before she became ill?  And even though I am internally telling myself not to,  I ask her about how she got sick.

She seems hesitant to talk about it, but I settle in to listen. She exhales and begins to tell me her story. I was much like you, she began.  And what she told me filled me with discomfort.  She got a bad virus (who hasn’t at some point been felled by a virus?) but for her it was the start of something much worse. Her heart stopped working properly. An abrupt change in her ability to stand, dizziness, nausea, the loss of other functions.  The list went on, she said, but she spared me the details. Everything, she said, that bodies do automatically.  I began to imagine what that kind of broken body must be like to live in. But I didn’t want to imagine it for long. I’m ashamed to say it, but hearing her story made me wonder if I could handle what she was going through. Six years she’s been sick for. Almost the entire length of her son’s life. I didn’t think I could.  My mind flashed through all the normal tasks of a normal day. No, there is no way I could manage being sick like she was.  I wondered, briefly, how she did it.  And then a desperation to be talking about anything else overcame me.

I thanked her for telling me all about it, I think I told her something like she was brave. I think I patted her hand.  She thanked me for coming over, looking across towards the huddled groups around the bar and graciously giving me an out. Thank goodness, I thought, as I asked her if I could get her a drink.  She asked for a water, so I went to get her one. When I returned her husband was back with her. She was looking paler.  He had leaned in close to hear what she was saying.  I unobtrusively put the water on the table near her knee and slunk away to my own husband’s side.  His hand slipped into mine and I squeezed his back. I doubted if I could explain to him how glad I was to have the ordinary troubles of hair, makeup and babysitters, the general ‘difficulty’ of going to a school function. Then someone asked me about the woman I had been talking to, the one, you know, with the boy who was often causing trouble.  I looked across to where she’d been sitting and she was gone.  And I told them that she was really nice.  Much like us.  Only dealing with a whole lot more than most of us understood.   I saw the smile flicker off the face of the asker.  The inward groan. I didn’t like seeing my thoughts etched out so plainly on someone else’s face.

And then I was drawn into a fun conversation, ordering another wine and moving on. I shook off my unease about the things she said, the alternate realities I’d rather not consider.  There was nothing I could do, was there? And she’d gone home. Really, there was no point in ruining a great night.  These school parent functions are great once you get into the swing of things.

I do think of her every now and then. When I am organising a party list, or doing mother help at school. It might cross my mind briefly when I am loading groceries into the back of my car. Or sometimes, when I am looking at my face in the mirror. And like the first time, the thoughts come and then they go. Because who am I to think I have anything useful to offer?  It’s difficult. It’s a juggle. And I move on.

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otherIt’s difficult. Attending these school parent functions.  You’d think it would get easier, the more you do.  But no!  There’s all the pre-planning and resting up that I need to do for the ability to do one night out.  Extra medication.  Mental fortitude.  And there will be the payback afterwards.  Days crashed in bed. More wasted time while the tasks for the family mount and mount. I don’t get to many of these sorts of things, but I try to attend one or two a year.  And I love the drive there, hand on my hubby’s knee.  Feeling like we are on a real date, even just for the time in the car.  The beauty of the city lights reflected on rain soaked streets.  The privacy and togetherness of our car coccoon.  Just us.

I didn’t manage to do my hair or nails, those things seem to have gone by the wayside. I did manage makeup.  I check it in the passenger mirror.  The woman looking back at me is puffy faced, tired and pale. I wonder where my real self is hiding.  Somewhere on the other side of illness. I wonder if she is waiting for me there. If we will recognise one another.  But there is so much for my husband and I to chat about while we make our way through the traffic that I am soon distracted from my own reflection.  Any alone time together feels like we’ve rewound to the early days.  I look across at his profile and marvel at how I still feel this way after so long.  After so much water under the bridge.  He’s a good man, my man. I wish he didn’t have the dead weight of my illness to carry with him everywhere he goes.

When we arrive, the difficulty of walking from the carpark to the venue takes it out of me. I send my husband into the throng and perch in the shadows of the room, hoping that no one will talk to me.  Hoping that my hammering heart will slow to a calmer rhythm and the planes of the room stop warping and fading on the periphery of my vision.  Hoping the nausea will subside so I can form words without retching. I  want to be at home.  I wish I could fast forward to the end of the function.  Why am I even here, if I am not able to mingle?  I see that my hubby is having an animated chat with someone and it brings me relief. Maybe if he talks to five or so people, we’ll be able to consider the job done and go home. I wonder why I push myself to be part of a group of people who don’t actually want to know about me, about us. I don’t know.  But somehow, I know that I desperately want to be a part of this world, to know about them. I remember, in flashes of colour and animated laughter, what it felt like to be out with friends, drinking and talking about interesting things.  So often these days my only conversations are about illness.  With doctors, with other patients, with myself.

And then one of the mothers comes over to talk to me. She seems curious, and nice about it. It feels good to be able to explain why I am lurking in the shadows. I wonder if she can tell how much I long to stand and laugh in one of those sociable huddles. How I wish my son were more a part of things in the playground. And then, as fast as she arrived, she has gone.  I am jealous of the ease with which she sways across to the bar in her incredible shoes. I feel the old uncomfortable conflict of opening up. My hubby comes back,  he knows my best-before date has arrived. We make a move to go. I take a sip of the water she brought me and an unbidden sting in my eyes ushers me out the door.

I do think of her every now and then.  When my son is left off another party list, or I can’t volunteer to help with a school event.  Even when I am doing something as ordinary as filling in my online supermarket order. Or trying to find myself in the mirror. The thoughts come and then they go. Because who am I to think I have anything useful to offer?  It’s difficult. It’s a juggle. And I move on.

Claire Gawne: The About Face

Claire Gawne is a Melbournite and fellow Dysautonomia sufferer. Active online in various volunteer roles as well as her biggest role, promoter and cat-mum; Claire is a positive, upbeat, funny girl.  She wrote this piece for the Meet my Peeps series, all about the benefits of pet ownership.
Meet my friend Claire and her friend, the Gremlin….

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theaboutface

My housemates stand in the door to my room. The don’t even have to speak for me to know what they’re going to say. The old arguments tumble out, and my wearied responses are rattled off. The debate over whether or not to get a cat has raged for months, the pro team enthusiastic and numerous, the anti team steadfast but alone. They showed me pictures of adorable cats (as if I didn’t already see enough on the internet anyway!) and waxed lyrical about kitten toes and purry snuggles, while I extolled the virtues of fur free home and worried about the effect a ball of fur would have on my asthma.

I could sympathise with my housemates’ position. I was a cat person who had suffered growing up in dog person household. I loved how cute and snuggly they were. I looked at pictures of other peoples’ cats on the internet, but I was uneasy about owning one. I struggled enough to take care of myself, how could I take care of another living creature? And what if all that delightfully soft fur was too much for my embattled lungs to handle? What if the cat had to be returned?

a picture of Gremlin the cat trying to catch bubbles, with quote text "I struggled enough to take care of myself, how could I take care of another living creature?" -Claire Barnier

Still, I found myself more and more fixated on the idea of a cat. I had become obsessed with a particular breed – the Exotic Shorthair. Combining the adorable squished face of a Persian with the practical short fur of a British Shorthair, it looked like a teddy bear. An adorable, living teddy bear that would provide hugs on tap.

In a complete about face, it was me that ended up buying the cat. His name is Gremlin, and he’s a ginger and white male Exotic Shorthair. He is undoubtedly the best cat ever. I was instantly in love. My ability to breathe be damned, he was staying!

Claire & Gremlin(1)

Pets in general, and cats in particular, have been shown to have huge health benefits for their owners. Improved cardiovascular health, lower rates of depression, and one I was particularly hoping to capitalise on – fewer visits to the doctor.  While I didn’t expect my new furry companion to cure me, it became abundantly clear the benefits of having a pet were varied and abundant for people with chronic illnesses.

Despite having four housemates, I often found myself home alone, or awake at absurd hours of the night; having Gremlin meant that I always had someone to talk to. I was also surprised how much I relished having someone to think about and care about beyond myself. Gremlin was a welcome distraction from my own problems. It gave me a sense of purpose and made me feel needed in a way I hadn’t for a long time, yet without any intolerable expectations on my time and health.

Gremlin was also an amazing listener. I would come home from an appointment to find him dozing in the exact same spot I had left him in two hours ago, and he would purr away while I told him about my uselessly vague test results, or the scary potential side effects of a new medication. And then at night, when the house was quiet and the last tram rumbled by, he would curl up against my legs, all snores and purrs and soft fur, and I’d sleep better with the weight of him against me.

More peer pressure, this time from a close friend, led to me starting an Instagram account for Gremlin (maybe in the hopes that I wouldn’t flood my friends Facebook newsfeed with picture of his antics!?) For those of you unfamiliar with Instagram, it’s a social media platform focused on sharing photos. I thought that at most I might garner 200 or so followers (a respectable amount for your average user) upon whom I would foist endless photos of my cat. My expectations were low, which might explain why I was so overwhelmed by the incredible experience that followed. Thorough judicious use of hashtags (the best and most direct way to engage with IG), and an investment of way more of my time than I will ever admit, I quickly amassed followers.

Two years later and I have just hit the 15, 000 mark. More incredible than that is the wonderful, genuine friendships that I have made. It’s an amazing community of people, bonded through our mutual love of cats. Everyday I get to laugh at the absurdity and charm of cats, imbued with their own personalities by their humans. I’ve seen people help each other, offering advice on pet care, digging deep to raise funds for medical treatment, and offering love and support at the devastating loss of beloved pets. It’s a weird and wonderful world, where yesterday I was admiring the bowtie collection of one account, while discussing starting a cat commune with several others.
You can find Gremlin on instagram here.

The instagram cat community has grown, spread and evolved since I joined. I have become Facebook friends with the people behind several of my favourite accounts, and got to know them as humans in real life, too. I have seen art projects and pay-it-forward initiatives flourish. This year the first cat convention (CatCon) will be held in LA, and I’ve seen people excitedly planning meet ups of both humans and cats!

For me it has been an incredible experience that has allowed me an identity and a focus beyond my illness. Friends of friends know me as ‘Gremlin’s mum’, and people gush with excitement about meeting him. Tonight before bed, I’ll swallow a handful of pills, and then I curl up and scroll through hundreds of pictures of cats, each one a friendly, familiar face. I’ll look down the bed at the friendliest and most familiar face of all, curled up against my leg, snoring louder than should be possible for something so small.

And I’ll be grateful for everything he has given me.

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Do you have chronic illness and a pet?
Tell us about how your pet helps you…

Karen: Lost in the Fog

Welcome back to the Meet my Peeps Guest Series.

I am so delighted to bring you this post from Karen. IT Professional,  fellow horse lover and chronic illness sufferer, Karen has a hard row to hoe.  She is dealing with all the challenges Dysautonomia throws her way, largely, on her own.  She does however have the wonderful company of her beautiful animal companions. Three very special horses, Meko, Oscar and Bazil, and two personable pups, Kitty and Milly.

Karen is a deeply practical person with a passion for animals and the outdoors.  She lives in beautiful Tasmania. Whenever she can she spends time making the most of her stunning surroundings and the company of her faithful companions; cooking for friends when able and enjoying being part of a close knit community.

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A picture of horses in the dim foggy light of early morning.

I’ve reached the point in my journey of chronic illness where suddenly all of the denial is falling away. As night ends the dawn appears and the reality of my situation arrives quietly, like an early morning winter fog. It’s a cold…desolate…an eerie place to be.

My Specialist, who has gone over and above in his efforts to help, has said there isn’t much more to try. And I have tried to keep those thoughts of reality away, hoping my current trial treatments will be enough to help me to climb out of this latest setback. And always, the hope that perhaps, there will be a magic pill that will suddenly get me back on track to better health.

Lost amongst that fog, I cannot see where my journey will take me and what the future holds for me. Feeling cold and somewhat numb, I realise I need to pull myself together, to prepare myself for when that fog eventually clears. The key words here are ‘Me’ and ‘I’. Not ‘The Specialist’ not ‘The Medication’ not ‘My Friends’. I cannot find them through this fog. So I look down at what I can see….my hands, my arms, my legs, my feet and I realise that they are all I have to help.

All the things that I either can no longer do, or which cause great expense or payback, come to mind. I think of my dreams of being healthy and active again, living life to the fullest. I think of watching it all pass by me, the whole impossibility of the situation, and a few random tears begin to fall. I’m so glad that shrouded by this fog, nobody can see me like this.

And as the fog begins to dissolve, I see clearly what matters to me the most. My beautiful animal companions who worry over me, who are there for me, the ones that offer me a hug when there are some tears or when I just need one. I can give them a better life if my health improves. Walks along the beach, rides along those bush trails, drives to mysterious destinations yet to be discovered. New experiences. This is what I have to work towards and hope for when the sun re-appears.

I muse a little more. I make some plans. I make a decision in the depths of that fog. This is my tipping point. This is where I need to take control of my own health and not expect others to fix it. It’s a wake up call. I promise myself that I will do what I can to climb out of this valley I’m in. I think about how the introspection within the fog has allowed me to centre my thoughts on me. To block the distractions out and decide on a new direction.

As that fog makes way for the bright sunlight and the brilliant day that lies ahead of me. I know I must take advantage of this day to put my plans into action. To reach my goals in life. To climb out of that valley myself.  I know that next time, I will recognise that fog as something beautiful. Knowing that I am in charge of my life and that I got through it before, into the light of a sunny day.

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Meko and I Swimming_In_Swan_Lake
Karen and the magnificent Meko in Swan Lake

 

Picture of a beautiful bay horse face (belongs to Bazil, who belongs to Karen)
The Beautiful Bazil