Weekend Coffee Share: 26th March, 2023

Welcome to Another Weekend Coffee Share!

Another week has just rushed past like an express train and I’m struggling to remember what happened. Or, perhaps it was more a case of being hit on the head a few times and I’m struggling to get my bearings. That’s probably more like it, because I haven’t exactly been busy in the traditional sense. More like hyper-distracted. Indeed, I’ve acquired a new, and very addictive distraction which involves shopping online at Salvo Stores. I’ve included a few of my more extraordinary finds for you to check out:

To be honest, I’ve needed a fair bit of distraction lately. Or, perhaps the reverse is true and that by distracting myself, I’m only shooting myself in the foot and now is actually the time to be uber-focused, vigilant and pedantically one-track minded. I don’t know but before this cryptic conversation with myself goes any further, I probably should spill the beans and bring you into the picture.

I’m not sure about how much I’ve said about what’s going on with my health atm. I have an auto-immune disease, dermatomyositis (DM) and associated fibrosis in my lungs, which is known as Interstitial Lung Disease (ILD). I developed the DM after the birth of my daughter and have been living with it for 17 years. The ILD developed about 10 years ago and had been largely contained but the fibrosis has gradually increased. The theory is that as long as the DM is in remission, the lungs will be stable. All was going well until a mix up with a script cut my medication in half and unlike many other scripts, I didn’t manage to lose this one. Bugger! Consequently, my autoimmune disease flared up a bit. IN the meantime, I had a respiratory virus in December and covid in January. Yet, I seemed to recover and had a wonderful time in January catching ferries and walking extensively around Sydney. So it’s hard to understand how I came to fall on my sword and end up so sick and desperately short of breath and my lung capacity dropping from 50% to 30% Not only that, I suddenly became my lung specialist’s best friend as he started exploring and sharing my case. That obviously spells TROUBLE!! Yet, at the same time, I’ve set out fiercely determined to heal myself. I’m going for a 10 minute walk most days and using a device called a respiratory exerciser where you inhale and try to raise three blue balls off the ground. At first, I could only raise one but now I’m getting the third one up some of the time and that has to be a good sign. We are also praying. I would probably prefer to pray for God to wave a magic wand and instant make me better. However, he has a wonderful sense of humour and I know I have to do my share too and that’s the exercise. I should also do more singing. After all it’s singers, swimmers and brass players who give me hope because they can end up with above average lung capacity. So, instead of trawling through the Salvo Stores I should be singing all night.

We had a very special day today. Our daughter auditioned for a local youth performing arts show with the dance school she attends and we were able to watch. She appeared in three classical ballet dances: a trio, a duo and her ballet solo. She is always amazing and naturally looks the part with her physique which is a stroke of genetic fortune (especially considering I am about 10-15cm taller than her). However, none of this comes on a platter and there’s a lot of hard work and she lives and breathes ballet with a passion.

I was particularly delighted to see the new duo for the first time which she performs with a young man she’s known forever at the studio and I guess this for me is what ballet is all about and it really is like she’s finally arriving after starting ballet 14 years ago as a three year old and there’s that graduation from flats, to pointe shoes, doing solos, getting your first real (expensive) tutu and then there’s that magical connection in a good duo which is sensational. They might not be Torvill and Dean of the dance world in other people’s eyes, but they were to me and they were spectacular.

After the audition, we went out for lunch across the road. That was also truly special and not something we do terribly often.

Have you read any good books lately? I am currently reading “Seven Poor Men of Sydney” by Australian author Christina Stead. It’s largely set in Watson’s Bay on Sydney Harbour but is quite a dark tale and perhaps not the best thing for me to be reading with the state of my lungs. However, Stead’s characters are generally lonely misfits and I’m immersed in family and community so my lifestyle is very different. The book is very philosophical, which I love and Stead writes beautifully and there’s plenty of underlining throughout which is my mark of a great book. Here are a few of my underlinings:

“Who does not wish to spend his life in communion with himself?”

“You can be absorbed in Nature, as-as in the sea, as if you melted into the sea and were diffused through the oceans of the earth. There is peace where her mysteries are an open book to you; in her inmost recesses she has perfect peace, even for the most fevered.”

I have 50 pages left, which is too much to polish it off tonight but at the same time, I’m on that downhill run where I’m eager to follow all the threads and reach the end, even though I will miss it when it’s done.

Meanwhile, I’ve also been researching her father, naturalist David G. Stead and he led me astray onto a whole different journey as he was a naturalist and conservationist and he wrote a series of articles in the children’s section of a Sydney newspaper which make for interesting reading. His column was called “The Great Outdoors” and was narrated using the voice of an emu called Dirrawan. Stead was rather broad in his understanding of the great outdoors and one of his early columns gives a detailed account of mud sediments at the bottom of the ocean, especially at the deepest part of the ocean in the Marianna Trench, which is clearly well away from the Australian outdoors. Anyway, I’ve managed to download the text from the online newspapers after undertaking text corrections and they’re now getting a further clean up as the analysis begins. This has also been a brilliant distraction.

So, how are things with you going? No doubt, I should’ve asked you that at the outset and offered you “coffee, tea or bonox” as my mother would say. However, I got a bit carried away. So, please forgive me.

This has been another Weekend Coffee Share hosted by Natalie the Explorer.

Best wishes,

Rowena

PS I almost forgot to mention that Miss and I decorated our new phone cases this week. This is an idea she picked up from Tik Tok where you cover the cover the back of the cover in tiling plaster and stick objects into it like a collage. It was so much fun and I was really happy with the results even if they’re not the most practical phone cases around.

My phone case made using shells I’d picked up in Geraldton WA over 20 years ago.

Kayaking in Lockdown…A New Beginning.

These photos of Geoff and I kayaking in lockdown are living proof of just how deceptive a photo can be. There we were floating on a magical, diamond carpet as the radiant Spring sunshine cast its magic over the water. It’s absolutely beautiful, and would make for a perfect postcard. There’s the bright blue sky dotted with a couple of woolly white clouds. There’s also the radiant Spring sunshine which isn’t hot enough to burn , but warm enough to defrost the Winter inertia. Indeed, Spring is something you feel right throughout your mind, soul and spirit; and you just feel invigorated. You don’t need flowers in the frame to know it’s the season of rebirth.

What the photo doesn’t say, is how hard it was for us to get there, or how long it’s been since Geoff and I went kayaking together. To be perfectly honest, I can’t remember. That’s despite having the kayaks sitting in our backyard, and it’s something we both love doing. I last went kayaking with friends back in January, but Geoff was at work and he went out with one of the same friends on a night kayak run without me. Meanwhile, our friend kayaks several times a week, especially during lockdown. Indeed, pre-lockdown, he used to kayak across Broken Bay to Palm Beach using a head torch to guide his path. Of course, I’ve told him he’s mad. His mother has told him to phone a friend and report in. Yet, at the same time, he’s like an age-old adventurer, and good on him. Yet, at the same time, I cry out from my chair in the loungeroom…”Me too!”

Don’t you love my dreadful kayaking hat!

Unfortunately, it’s not so easy for us to just grab the kayaks and run. For some reason, we need to paint the house first. Research and write a series of books. That’s on top of the usual stuff like going to work, looking after the kids and throwing the ball endlessly for the dogs. For us, getting the kayaks on top of the car and down to the wharf is like packing up for our annual holiday and what with paddles, life jackets, water shoes etc we almost need to pack as much gear too.

Geoff’s Kayak.

On top of this, there is also my health and physical disability issues. When you struggle to walk and it doesn’t take much to have a stumbling fall, it doesn’t seem logical that paddling might actually be easier than walking. I don’t feel very competent at paddling because I’m a novice and my husband used to do white water kayaking in the Tasmanian rapids and also played canoe polo competitively. Our friend has also competed in the Hawkesbury Classic. The two of them could well and truly paddle off into the sunset at quite an enthusiastic pace together, while my kayak might drift round in a circle, and I might just enjoy floating for a bit. In other words, I’m not even trying to keep up unless it’s for conversation, which case they need to go at my pace which they do quite happily without complaint.

While I absolutely loved our paddle today and found the exercise and sunshine exhilarating and loved just drifting along like a cloud on the water, there were quite a few reflective moments.

The last time I was kayaking there, I was at a picnic with a group of friends. We had such a wonderful time out on the water, and as I said, unfortunately Geoff had to work. My friend Lisa was there with her son and I went out on the kayak with him. He’s ten years old and loved diving off the side and was full of such energy. Lisa was much more serene. She was like a beautiful swan gliding across the water as she paddled and her smile lit up the sky. It’s the truth. No exaggeration. Anyway, she passed away a few months ago after a long battle with breast cancer. I’ve mentioned that before. As much as you can try to convince yourself you’re okay and that you’re back on your feet again, I really missed her. Missed her deep inside my bones type missing her. I also miss being able to hang out with our friends in person as well. That hurts at a really deep level as well.

Mister kayaking along with all 40+ kilos of Bilbo our Border Collie…the calm before the splash.

Then, there were also memories of going out kayaking as a family when my parents had a beach house at Palm Beach. It was a short season, but they had a jetty and a boat shed and it was so easy to get the kayaks in the water as long as it was high tide. The kids were much younger then, and Bilbo our beloved Border Collie (who some of you may remember), was there along with Lady and we’d paddle with the kids, paddle with the dogs. Paddle alone. I even went paddling when I was going through chemo to deal with a flare of my auto-immune disease. I loved kayaking that much, and yet now I rarely go.

Out on our kayak adventure.

Why is it so?

Well, Geoff was grateful I talked him into going today, and decided that the kayaks are going to stay on top of the car. That’s a statement, isn’t it?! It’s like having your sword drawn, and being ready for action.

Move over Huckleberry Hound. Lady enjoying her kayak adventures.

That’s particularly important during lockdown. Somehow we need to find things we can do within the scope of the restrictions, while acknowledging but not dwelling on all the things we can’t. We are very lucky to live in this beautiful part of the world and be surrounded by beautiful beaches, and still waterways. It was also a choice.

Miss pretending to be out in the kayak. It’s a beginning.

Do you enjoy kayaking and have any stories to share? I’d love to hear from you.

Best wishes,

Rowena

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Life Was Meant To Be Easy.

According to the “Feel Good School of Thought”, life is meant to be easy. Adversity is a transitory thing that we can simply power through, as long as we “think happy thoughts” and “stay positive”. “If it feels good, do it. If it feels bad, give up.” However, from this perspective, we might as well pull the pin when “shit happens”. There is no reason to live.

Yet, ironically humans thrive on being challenged, using our problem-solving abilities, and overcoming adversity. We’re meant to use what we’ve got, even if some of the equipment isn’t in peak form. Indeed, adapting to these challenges stimulates the mind. After all, we were never designed to be couch potatoes, or even worse, liquid mash. Rather, we were meant to grow roots and broad branches, and stand tall on the inside, no matter what our design. Just think about how often you hear heroic stories of everyday people overcoming huge setbacks and surging forward in a new direction. Indeed, their curse can even become their blessing. The Paralympians embody such triumphs.

“I think a hero is an ordinary individual who finds strength to persevere and endure in spite of overwhelming obstacles.

So many of our dreams at first seem impossible, then they seem improbable, and then, when we summon the will, they soon become inevitable.

Once you choose hope, anything’s possible.”

-Christopher Reeve.

At a more basic level, I remember my Dad encouraging to overcome fear and have a go. His big line was: “it’ll put hair on your chest”. As a little girl, I didn’t quite get what he meant and took him quite literally and I didn’t want hair on my chest. However, these days, this sort of grit has been rebadged as “resilience”. This school of thought poses that we need to experience the bumps and knocks of life to grow stronger and prepare us for the big hit. This isn’t as much fun as thinking happy thoughts and only doing what feels good, but we do emerge more rounded and as the Scouts would say: “prepared”.

While that all sounds great in theory, it’s quite a different story when you’re lying face down in the mud with no known way of getting up. At this point, it’s quite natural to feel overwhelmed by shock, disbelief, anger and self-pity. However, if you want to move beyond subsistence, you have get yourself out of the quagmire and start thinking about taking those first few critical steps, be they literal or somehow figurative.  Staying put isn’t an option.

This isn’t theory for me, but my own, personal experience. I have walked the talk, sometimes needing assistance.

When I was 25, I was diagnosed with hydrocephalus or fluid on the brain and six months later had brain surgery to insert a VP shunt. The hydrocephalus was pretty freaky. Although it was largely dormant for the first 25 years of my life, it rapidly became symptomatic and for the six month period in between diagnosis and surgery, I lived the bizarre and traumatic life of Oliver Sacks’s: The Man Who Mistook His Wife For A Hat. I had 6 months of intensive rehabilitation, learning how to walk and had occupational therapy to manage my life again. This all culminated in moving back in with Mum and Dad and a year off work. That in itself felt terminal. After all, when you’re living the story, you don’t know how it’s going to end. I slowly got back on my feet. Returned to work. Got Married. Had two kids. Then, the thunderbolt of medical misfortune struck for a second time. The birth of my daughter, triggered so much more than maternal joy. My hands turned raw. As it progressed, I couldn’t sit on the floor and get up again, dress myself. Eventually, 18 months later, I was finally diagnosed with dermatomyositis (DM), an exceptionally rare auto-immune disease where your muscles and skin cells attack themselves. As soon as I was diagnosed, I was put in a wheelchair and spent the next week or two in that and the next couple of weeks in a walking frame. I was only 36. Treatment made a vast improvement, but I went on to develop Institial Lung Disease with fibrosis, and affiliated chest infections nearly take me out most years. The Cough has now become such a permanent fixture, that I’ve called him Fergus.

I didn’t respond well to treatment for the DM, and five years ago, I had seven treatments of chemo. My specialist also changed my meds and I’ve been in remission ever since. Not smooth sailing, but still a relief. My kids are now about to turn 14 and 12 and still have their Mum. Moreover, I’m still an active part of their lives, even if I’ve had five years off work. I am so very thankful to be here. Yet, there are still times, especially when the cough flares up, that I get fed up. After all, I’m human, not invincible.

With the New Year, I’ve been rethinking my status quo and wondering how to get back into some paid work, while coughing like a mongrel dog and feeling dreadful in so many ways, that it’s tempting to sink underneath the waves and give up.

Prior to chemo, I had been employed as the Marketing Manager for a local IT Company one to two days a week. I’d also been working towards a motivational book about turning your mountain around. I had it all planned out. What had started out with a rather feeble New Year’s resolution to vaguely improve my heath through green smoothies, evolved into a surprisingly productive year. I lost 10 kilos, took up the violin and performed at the end of year concert, started the blog and tackled all sort of challenges at an adventure camp run by Muscular Dystrophy NSW…quad bike riding, sand boarding, para-sailing. It was incredible. I’d pulled off so many things I’d never thought possible, and was almost on top of the world.

 

Here I am riding the quad bike. Of all the activities, this one took me most out of my comfort zone.

Posing after our violin performance 2012. Lizotte’s is a rock n’ roll venue where the likes of Diesel have performed…and me! The music school hired the venue for our concert.

Sandboarding, Stockton Dunes.

Not so cool…lugging my surfboard.

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All of these breakthroughs and successes were definitely book worthy and I thought my story could encourage others experiencing the hard knocks of fate, to give living a go. Living with two debilitating, life-threatening medical conditions and consequent disabilities, I was proof that it was possible to carpe diem seize the day even through times of serious adversity. However, my story wasn’t going to end there. The icing on the cake, which I intended to be the finale of the book, was skiing down Perisher’s Front Valley, in effect, turning my mountain around. Yahoo!

Skiing in Perisher. You can see my instructor, Tom, in the background…the wind beneath my wings. I went as a member of the Disabled Winter Sports’ Association.

That was the plan. However, while I triumphantly skied down Front Valley, my “victory” didn’t match my expectations. Rather than the exhilaration of triumph, I felt my gut sink with unbridled terror as I perched precariously over the edge, with a huge drop off down the slope to the village below. I felt like fleeing straight back to the safety of the “magic carpet”. However, I had my ski instructor with me and Tom went backwards down the steep start and held my hands to ease me down. By the time I finally reached the bottom after a few spills, I was more relieved than jubilant and I was just glad it was over.

However, the story doesn’t end there. Triumph soon did a terrifying back flip, and even before we left Perisher, I’d developed a nasty chest infection, which turned into life threatening pneumonia. Indeed, one night in between coughing bouts, I actually stopped breathing.

Playing Moonlight Sonata after chemo.

At this point, I also found out that the auto-immune disease was in a serious flare and was attacking my lungs. The Institial Lung Disease had become active and I had marked fibrosis in my lungs. Moreover, the report on my lungs read like the contents of a vacuum cleaner bag…ground glass, honeycomb. I was actually surprised there wasn’t any dog hair in there. Anyway, they started me on chemo (cyclophosphamide) a week before Christmas 2012 and I’ve got to say, I didn’t expect to be alive for Christmas 2017. I am a living, breathing miracle, which has been a comprehensive and intensive team effort.

As you could imagine, pneumonia and chemo weren’t the grand finale I’d planned for the book and the book is still on hold as I wrestle with what it really means to be a survivor, grappling with my numerous battle scars and LIVE on. I don’t merely want to exist.

This isn’t something I think about all the time. However, with the new year, I’ve revisited all of this. I’m still wrestling with THE COUGH, while also trying to get back to some kind of meaningful paid work. The two of them are looking very incompatible at the moment, but surely I can find something?

Pursuing this question further requires me to accept my weaknesses, but also to acknowledge and embrace my strengths. Know that I am not a dud. Rather, I’m human. We all make mistakes and have strengths and weaknesses. Of course, that’s something I would say with conviction to anyone else, but I struggle to find that in myself.

So, I guess this takes me to George Bernard Shaw:

“Life is not meant to be easy, my child but take courage: it can be delightful.”

When you’ve experienced adversity, how have you kept your head above water? Please leave your thoughts in the comments and links through to any posts.

Best wishes,

Rowena

This post was published on Smorgasbord – Variety is the Spice of Life.

Forgiving the Unforgivable.

What if you were called on to forgive something you can’t see, can’t touch yet it stalks you 24/7 year after year after year, never releasing its grasp?

Welcome to my blessing and my curse.

Dermatomyositis is a severe, systemic auto-immune disease where your muscles attack themselves and self-destruct. It also, as the name suggests, attacks your skin and can also cause fibrosis in your lungs. Treatment is available but can be tricky. My case is considered severe and has been somewhat resistant to treatment. However, I’m lucky that my doctors keep plucking rabbits out of their hat, coming up with something new. I have been in remission for 2 years and am currently doing very well for me.

A family photo with Bilbo as a pup Mother’s Day, 2007. This was taken 6 months before my diagnosis when I was already quite ill.

As I said, dermatomyositis is my blessing and my curse.

My blessing because most of the time I live my life to the very fullest appreciating each and every moment. I know life is short. Although I get side-tracked probably more often than most, I do know what’s most important to me, and I do try to put these people first. I’m not always successful, but I love my family and my friends. However, I also love my writing, photography and helping others.

This, I’m sure you’ll agree, is a complex balancing act. However, dermatomyositis doesn’t understand love, relationships, priorities dream or goals. It just stampedes over the lot of it and when it flares up, even the best time management in the world, can’t save you.

Getting my infusion in the brand new hospital.

Hence, it’s my curse. Almost since the birth of my daughter, I’ve been haunted by dermatomyositis. Moreover, we’re actually surprised (but exceptionally grateful), that I’m still here. I can’t tell you how heart-breaking it is to have your two year old son look up at you with his huge blue eyes and blond curls and ask: “Mummy better?” Worse than that, I couldn’t answer him. We didn’t know. To fall at home and knock your 16 month old toddler over as you crash to the floor. However, worse was yet to come. Despite her terrified screams, I couldn’t get myself off the ground, and I couldn’t even reach out a hand to comfort her. My body was completely powerless, weighed down like a sack of potatoes. What on earth was going on? It was horrific and like being sucked into some terrible horror movie, only it had somehow become my reality. In the end, I used a chair to lever myself up and due to the nature of the muscle damage, was strangely still able to walk around.   Meanwhile, my husband was carrying our sleeping daughter off my lap and into her cot. He even had to help me get dressed and cover me with my doona each night. I couldn’t look after myself. In hindsight, I don’t know why we didn’t just go to Emergency. However, I’d seen multiple specialists and a misdiagnosis early on sent things off course.

It was further six weeks until I finally had a diagnosis, and I spent a gruelling 2.5 weeks in hospital and about 6-8 weeks in rehab.

Skiing down the mountain at Perisher in August 2013.

It’s hard to believe that the same person who has subsequently developed a love of adventure  (albeit within my limitations), was ever so sick. Or, is still affected by this snoring giant which is kept under control through medication. I have been left with 60% lung capacity and some mobility issues. Yet, these are no match for my iron will. I am incredibly determined and have the best inspiration in the world…my family, my friends, my writing and my life.

Sailing this week.

That said, I am lucky there is treatment. No amount of determination can help you beat a disease without treatment.

The life I am living is good, even if it isn’t anything like what I’d planned or expected.

I could focus on all that I’ve lost. However, going down that path really is the road to ruin…just like unforgiveness.

We have more choice in how we paint our own picture than I ever thought possible.

Seizing hold of all the good in the life I have now…this is the road to happiness. Do we call it forgiveness? Acceptance? I don’t know. Whatever you call it, it certainly took me a long time to get here. I was diagnosed with dermatomyositis 9 years ago and I certainly didn’t reach this point overnight. I was angry, and didn’t know who or what to blame. God? Bad luck? Genetics? Indeed, it was only after I had chemo 2 years ago almost to the day, that I have let it all go, and am finally learned what it means to be a human BEING…not just a HUMAN DOING.

I still haven’t got it down to a fine art. Nor do I have all the answers. However, I’ve made radical progress possibly through letting go. I had to walk away from my job a few years ago, but I am now at the point where I’m about to step out there again. I’m yet to work out where I’m going or how. However, that can wait. My kids are starting new schools next week and for the next few months, I make no apologies for putting my kids first. The rest can wait.

So, how have I been able to forgive dermatomyositis and move forward?

Fight back and don’t be a victim. This means doing what I can to give myself the best chance of managing the disease and trying not to make things worse. This also means taking responsibility for my health and not delegating my life to anyone else. I take my medication. Have regular blood tests. Exercise. Could eat better but could eat worse.

Have fun. Enjoy!

Extend my limits. If you can’t go through the front door, how about trying the side door? Think laterally and be resourceful. It can be very easy to shrink inside your shell where it is warm and cosy but do you really want to live the rest of your life at half-mast?

Violin Concert 2015.

Everyone needs a reason to live. A reason to get up in the morning. A reason to go through all the tedious bits and pieces in life when the going gets tough, boring or too painful to go on. It doesn’t matter what that reason is, but it helps you keep putting one foot in front of the other.

Find support. I’ve had considerable counselling over the years and that’s really helped. I had some training in mindfulness techniques, which I really struggled to take on board at the time but probably use more than I realise. I also went on a low-dose anti-depressant during a serious setback a few years ago and stayed on them. I am looking at re-visiting this in the next few months. I’ve been on so many other drugs that I let it be but they’ve come down significantly so it’s time for a review. My life is no longer hanging on by a thread.

Find a way of releasing your anger. I have written journal after journal burning off angst, deep sorrow, anger and anxiety throughout this journey and it’s really helped…both through venting and also being able to look back and see how far I’ve progressed.

Get out of your box. Sitting at home alone, it’s too easy to feel sorry for yourself and focus too much on how things how gone wrong for you. However, you only need to step outside your front door to realise that everyone has their lot…their blessings and their curse. You are not the only one. Even if you have a rare disease like me, there are still people in the same boat. For me, that’s either other parents battling health issues or others fighting different auto-immune diseases. I am far from being alone.

Most of us know if our glass is half-empty or half full. If you’re a pessimist, you’ll probably need to work harder to maintain your equilibrium. Write down something to be grateful for everyday…your What Went Well or WWW Book. Focus on that instead of the bad stuff.

Help someone else. Helping someone else has been shown to do wonders for your mood.

I have always seen dermatomyositis and a separate being, not “me” or even a part of myself. This means I haven’t internalised it. I am still myself.

Watch your language. Never call yourself a “sufferer”. I don’t have dermatomyositis. I am living with it. It might have moved into my body but it hasn’t taken over my soul.

…..

Before I head off, I just wanted to address forgiveness when it’s someone you love who is living with a chronic illness or disability, which is a very different experience from being the person directly affected.

From my experience, it’s much harder for those around me to separate me from the disease. So, when I’m too tired to listen, be attentive, play, join in or can’t go bushwalking, go to the shops or invite friends over, they don’t usually see dermatomyositis. It’s more a case of Mummy being asleep again. Mummy can’t be bothered or…Mummy doesn’t love me.

After all, while I might have an over-abundance of words, don’t we all know actions speak louder than words?!

So, I also have to forgive what can be a lack of understanding and compassion by those who I love the most at times. Deal with their anger and disappointment that Mummy is somewhat broken and there’s a gap between the concept of what a mother should be and reality. As my health goes up and down quite significantly, this can also be the contrast between “Well Mummy” and “Sick Mummy”. They don’t need to look any further afield to know what they’re missing out on.

When my kids are angry about things and playing up, they’re actually needing more love, not less and it’s not the time for me to retreat, which goes against any concept of self-preservation. However, that’s what it means to be a parent. Somehow, you need to be thick-skinned and thin-skinned all at the same time. However, who is immune to being hurt, especially by those you love the most?

This all brings me to this point. It doesn’t matter who or what is hurting you, you need to forgive and quite often this forgiveness is all about the little things. Overcoming the everyday. It’s less about that big one-off apology. It’s a daily thing. Just like breathing, eating, thinking, we forgive.

This post is part to the 1000 Voices Speak for Compassion. Please check out the link  to have your mind truly blown away by such personal journeys of grappling with forgiveness. Each month writers come together to post on compassion often within a theme. This month’s theme is forgiveness. 

xx Rowena

Quirky’s Quest for Connection.

I don’t know if anyone feels truly connected…as snug as a bug in a rug within the community blanket. As much as I would love to, sometimes even I find myself standing back quite content to watch from the sidelines lest I am somehow consumed or engulfed by the need or pressure to conform. After all, some of us don’t play by the rules and while this can be problematic, it can also be much of our appeal. After all, you can get a bit bored or sick of the same old same old.

Not all of us were designed to conform and toe the line.

Yet, being an extroverted social butterfly, I can’t help myself. As much as I might withdraw to write, I am soon back out into the social throng.

“The way a team plays as a whole determines its success. You may have the greatest bunch of individual stars in the world, but if they don’t play together, the club won’t be worth a dime.”

-Babe Ruth

That said, at times, connecting has been very difficult fore me due to my ongoing health issues. Having any kind of disability or chronic illness, can make it difficult to access certain places and events. It can make long excursions out of the house difficult. Moreover, when you are unstable on your feet and unwell and trying to communicate that with friends and loved ones when you appear perfectly fine, it is easy to start feeling disconnected. That you don’t belong. You can feel like crawling deep inside your “shell”, your “cave” and not coming out.

This is why I truly value and appreciate blogging because it somehow seems to bring together and unite all sorts of people…just like hundreds and thousands…into an online world which has quite different criterion for belonging. Yes, we too have our benchmarks and expectations but as long as you can write and read other blogs, you’ll fit in fine. Oh yes! You also need to have something to write about so you do need to be at least somewhat interesting or have some interesting stuff around you…or a good imagination! At least, in my experience people aren’t judging you by how you look. What you wear, age or other more superficial benchmarks. They are meeting you. Perhaps not all of you and I know that even though I probably come across as an open book, what you see here really is a thin edge of the wedge. After all, this is my blog not my journal and my husband and kids need to be respected.

In addition to blogging, I also stay connected with people who share my condition through an online Facebook community. I have never met most of these people in person and would only pop in on average about once a month but I do know they’re there and I have become personal Facebook friends with a few people from the forum who I’ve come to consider friends.

“Accept the things to which fate binds you, and love the people with whom fate brings you together, but do so with all your heart.”

-Marcus Aurelius

Our community faces some difficult challenges when it comes to staying connected. We all live with an auto-immune disease which falls under the umbrella of “myositis” and I have dermatomyositis. The incidence of myositis is rare at about 1 in 100,000 and living in Australia, I’m not swamped with “colleagues” and we’re geographically scattered and often immobile. This makes online forums an excellent way of becoming connected. Although being small in number, our group has been very keen to get the word out to promote Myositis in the community and to connect.

With this in mind, Wally Wombat was somehow conceived in the UK and came out to Australia via continental Europe to raise awareness. Wally is a small, blue stuffed toy wombat with a Union Jack around his neck and he has a red rose..a tribute to the girlfriend he left back in the UK.

Miss enjoying Easter breakfast with Wally.

Wally has been living with our family and I’ve taken him on quite a tour explaining who he is as we’ve moved around. Most people who know me know I have “something” but trying to expect anyone to remember the name “dermatomyositis” let alone what it’s about is a tall order. I know I’m very much speaking another language.

Wally had a close encounter with Lady.

However, Wally opened many doors for me to share a quick blurb about myositis. Unfortunately, this probably isn’t going to put Myositis on the front page any time soon but perhaps it’s left an impression…an understanding or at the very least an appreciation of what it’s like to live with a rare condition…a “What????”

“Alone we can do so little; together we can do so much.”

-Helen Keller

I have written about Wally’s trip to the Sydney Opera House in more detail here: https://beyondtheflow.wordpress.com/2015/05/12/sydney-opera-house-new-perspectives/ So here are a few photos of Wally’s Rowena Tour and I’ll be giving you a spelling test at the end. That’s right! How do you spell dermatomyositis???!!

This post was written as part of 1000 Voices for Compassion, founded by Yvonne Spence and Lizzi Rogers. This month’s topic was “connection”. To read this month’s contributions click here for the link-up:http://new.inlinkz.com/view.php?id=527278

xx Rowena

Wally’s Rowena Tour

Wally seeking wisdom from an Aboriginal elder at Whale Beach.

Wally sought help from the Force and consulted Yoda.

Wally was glad he wasn’t a dog and did wonder about the scorch marks on the sign.

Wally pictured with Alf from Homer & Away.

Wally in Summer Bay, where Home & Away is filmed.

Wally climbing the Opera House.

Wally & I with the Sydney Harbour Bridge. Taken beside the Sydney Opera House.

Wally at the Lindeman’s Estate in the Hunter Valley.

Wally flew in on a cup and saucer.

Wally catching the boat.

Wally was picked up by a magic carpet and has moved onto his next destination. He has been connecting people with myositis from all around the world together.

Miscellaneous Mutterings

Since I’ve been doing the Blogging A-Z April Challenge, I’ve developed some kind of additional neurosis…some kind of mutation, which has been completely overlooked by the DSM Manual, otherwise known as “the psychologists’ Bible”.

M is for Monkey

Every morning, no sooner than I’ve inhaled my kick-starting coffee, it all begins. I start jibber-jabbering away to myself and all sorts of words start cycling and recycling through my clunky head as I try to pick my word to go with the day’s letter. You see, I am now halfway through the Blogging A-Z April Challenge and with each passing day, the jibber-jabbering is only getting worse…the proverbial broken record.

Being a new recruit to the challenge, I didn’t realise until it all got underway that people generally write to a theme and turn it into quite a project. That’s right. This challenge goes way beyond simply reciting the alphabet and writing about “A is for apple”. My theme has ended up being “A few of my favourite things” and I’ve also been following the challenge on other blogs where I’ve been blown away by the amount of research involved and have learned so much!!

M is for Monster

While I have written a list of topics for each letter, some days I’ve revisited it and changed my mind.

For some reason, trying to pick something for M today has had me muttering more than usual.

Mummy

In a sense, M has to be Mummy, which I guess could also be M for Me. However, the trouble with writing about my journey as a Mum or about myself as “Mummy” is to come up with an angle that isn’t sickly sweet and sugar-coated or isn’t some never-ending whinge to end all whinges, leaving you all wondering why I ever had kids and thinking I don’t deserve them.

Next.

I did consider M for Manual, as in receiving a parenting manual when you give birth so you know what to do. After all, here in Australia, you have to sit a tough written test to get your Learner’s Permit before you can even start learning to drive a car Yet, when it comes to becoming a parent and leaving the hospital with your bundle of joy, there is no test. No licence required. You’re just left on your “pat malone” with what often turns out to be, quite a complex little bundle.

However, once I explored the manual concept further, I actually decided that I really didn’t want a manual or any kind of prescription telling me how to parent my kids. After all, being a bit of a free-thinking, creative type whose journey pretty much goes off road well beyond the road less traveled, I don’t want to create a pair of robots and I really don’t want to become a robot myself. I do try to have a routine during term time but come school holidays, I really do like to mix it up a bit, go away and explore something new but also just hang out. We all need to recharge a bit for another school term.

So, before I’d even written a word, I’d eliminated Mummy, motherhood, parenting manual and if you knew me in real time, you’d know that minimalist isn’t me. No, it’s definitely not me at all although I do appreciate those that fastidiously declutter their homes. They drop all sorts of fascinating treasures off at the op shop, which I snap and re-house. After all, treasure should never be homeless. We just need to get a bigger home or open a museum.

G’day Mate: a typical Aussie male greeting often used to disguise the fact they can’t even remember their best friend’s name.

I had originally been intending to write about miracles, which ties into what became something of a life mission to “turn my mountain around”. You see, I have an auto-immune disease called dermatomyositis as well as a neurological condition, hydrocephalus, which both give me some mobility challenges. In 2012, our family went on our first trip to the snow and although the rest of the family was going skiing, I didn’t think I could do it. Instead, I bought a pair of snow boots and intended to photograph the snow instead. However, on arrival, we spotted the Paraolympic ski team, who were out zooming down the slopes on sit skis.  This sowed a seed of doubt and I started to wonder whether I, too, could ski. We had a chat with them and they introduced me to the Disabled Winter Sports Association. We couldn’t get organised in time for that trip but I set myself a goal for the following year to ski down the mountain and in effect, turn my mountain around. In what really was quite a miracle, although it also took a fairly large dose of courage and encouragement from the family and my ski instructor, I made it down the mountain and turned my mountain around going down instead of up the mountain.

M is for mountain From Alphabet by Paul Thurlby
Published by Templar Publishing

I was so excited and on such a high, that I forgot all about the laws of physics and that what goes up, must come down.

Before we’d even left the skifields, I developed the first signs of a chest infection, which despite preventative measures, turned into a life-threatening bout of pneumonia and my auto-immune disease flared up and was attacking my lungs. Before I knew it, my life was flashing before my eyes and instead of being on top of the world, I was having chemo and fighting for my life.

Of course, this totally flipped my mountain back around and in the process it turned dark, stormy and very foreboding.

This wasn’t how my story, the motivational book I was working towards, was supposed to end up. This wasn’t the plot I’d worked out. No, it was anything but. I put the book writing plans on hold. Indeed, I was so sick that I didn’t have a choice.

You can read about my ski challenge here: https://beyondtheflow.wordpress.com/2013/09/11/turning-my-mountain-around/

However, if you know anything about Joseph Campbell and the hero’s journey, you’ll know that any journey has it’s complications or challenges but that doesn’t mean that’s where the journey ends. No, instead, we’re supposed to tackle those complications and work them  out and ultimately reach that perfect happy ending. We just need to make sure we don’t give up half way before things start turning around and starting to work out. Moreover, once we reach that happy state we need to end that journey before another journey begins, taking us to a completely new destination with a whole new set of complications, challenges and rewards.

While at first thought, it might seem desirable to get rid of all the mountains in our way to make the road smooth, without these mountains, we would never be stretched and grow to take on tougher challenges. We’d never find out what we are made of. This would be a serious loss because, through my own journey, I’ve truly come to appreciate that each of us is truly capable of doing and being way more than we ever thought possible.

Indeed, each of us is a living, breathing human miracle.

We just need to believe.

It seems that I should have had a bit more faith in my miscellaneous mutterings. It’s been quite an interesting journey and I actually found a destination after all.

Indeed, it could even be motivational.

xx Rowena

PS Geoff was doing a few miscellaneous mutterings of his own today after driving the kids all the way to their Scout Camp and finding out our daughter;’s daypack had been left behind. Unfortunately, she’d put most of her essentials inside and so a very loving Dad is driving all the way back to Nelson Bay to drop it off again tomorrow. Mutter…mutter…mutter!

PPS: Bilbo, our Border Collie, has added his howls to the mutterings tonight. Somehow, he managed to fall in the swimming pool. I had a friend over for dinner and we heard a splash follow by a few more splashes and the poor boy was desperately trying to pull himself out. I am so relieved I was within ear shot. Poor Bilbo. He doesn’t even like to get his paws wet so this was really quite an ordeal!!

Crime in the Quiet Carriage.

Breathe! Keep breathing! Remain calm!

But I can’t. I’m wound up. Seriously agitated and my brain is rapidly heating up, about to reach boiling point. No amount of relaxation, mindfulness or psycho-babbling positive self-talk is working. A rapidly ticking bomb, I’m about to go off. No small explosion either. This is definitely way beyond a small or even a medium-sized bang and rapidly accelerating passed a big one too. We’re talking a nuclear explosion… right here right now at this very precise tick of the clock.

Stop talking! This is a quiet carriage!!!

There must be worse crimes against humanity than talking in the quiet carriage but right now, nothing comes to mind.

Before you start thinking I’m the psychopath, just let me just tell you that I’m on my way down to Royal North Shore Hospital to have a long awaited MRI of my brain. My neurologist hasn’t ordered this test for fun or as some kind of high-tech photo shoot. No, you seriously don’t have an MRI of your brain for fun and there’s definitely not going to be any smiling for the camera either. As if being covered in a white sheet and shut inside a white plastic tunnel being bombarded with weird electronic noises isn’t bad enough, they’re jabbing me somewhere with a needle.

Having a brain MRI. Covered in a white, sheet you disappear inside a white tunnel. Get bombarded by all sorts of jalting, beeping electronic noises. jabbed and then you’re free to go home…you hope!

They’ve jabbed me with THAT needle before. They jabbed me right in the head, injecting radioactive isotopes straight into my shunt. I tell you, I’m a veteran of jabs and I’ve survived brain surgery and chemo but that jab in the head has no equal. It involved absolute and utterly excruciating pain. I can assure you, there’s some now graduated medical student out there who still bears the scars of near crucifixion in their hands. I dug holes in his soft, polished flesh with my unkept but piercing fingernails.

So here I am getting on the train thinking about the pain, the possible outcomes and how I’m even going to make it to the hospital as I’ve spent the best part of the last month in bed and traveling for almost 2 hours is a huge undertaking in itself. I don’t know what’s going on with me. Either I’m dying, or I’ve finally succumbed to the dark side of the force. I addressed this in a previous post: https://beyondtheflow.wordpress.com/2014/10/27/terminal-cyberchondria-yes-please/

Maybe after this monster test is over, the sun will come out again and this will all seem like a distance dream. A black cloud mysteriously scudding across an azure sky which suddenly disappears like magic…a miracle! I’ll go back to my life of champagne and…My goodness! Who am I kidding? We all know real life is no commercial break!

Being such a long train trip, I’m expecting to makes serious inroads on Booker Prize Winner  Richard Flannegan’s Death of A River Guide. Given the intensity and chaos of the MRI plus trying to juggle the kids and all their activities, this train trip is bordering on a sacred journey. I so desperately need peace and quiet and a lot of thought went into choosing the right book for the trip as well. I’ve been flicking through a couple of books over the last couple of days trying to work out where to head next. I’ve read two other Richard Flannegan’s lately and decided he was a pretty safe bet and I was seriously looking forward to both losing and finding myself in a good book. A want which had transcended into something of a desperate need. A cry of the soul.

However, instead of finding myself inside the much anticipated and heavily sign posted quiet carriage, this place is  more like a crowded pub during Happy Hour or even a flipping circus with clowns…wild clowns. There is raucous chatter everywhere..even laughter. How dare they?!! Harlots!

Welcome to the Quiet Carriage!!

Alright, so I exaggerate a little. While there was some loud chatter down the other end of the carriage, there was one particular loud mouthed foreignor talking four times as loud as your average Joe talking with his friends…a group of seniors in case you’re about to blame the insensitive youth of today. Unfortunately, I was sitting right behind them. I soon started thinking about asking them to be quiet and pointing out the quite carriage signs which were clearly signposted throughout the carriage. I also thought about talking to the guard.

However, a few of my friends have mentioned the maniacs in the quiet carriages. The so-called “Noise-Nazis” who have a nervous breakdown over the sound of even the slightest pinhead of a pin being dropped. I like to be classified as the “nice woman” and not one of THEM…even by these totally rude, self-centred strangers I’m never, ever going to see again. Instead of being the bad guy, I chose the stoic high road…to suffer in silence. Of course, I could’ve alerted the guard if I’d been more nimble on my feet. They have a special announcement recorded for the socially inept. It goes something along the lines of: “This is a quiet carriage…If you want to talk, move to another carriage.”

I did consider moving to another seat or even try the standard carriage but it was all too hard. There wasn’t another seat and I’m not that steady on my feet. I couldn’t risk trying to change carriages while the train was in motion, even with my walking stick in hand. So instead, I sat as still and as silent as a marble statue…fuming. Fuming some more. I could feel the flames burning in my head. Smoke bellowing out my ears. I was mad. Irate. Furious. This was pure, unadulterated train rage.

Grannies show an umbrella can also come in handy!

In retrospect, I should’ve just taken a leaf out of my grandmother’s book. She would have bopped the lot of them on the head with her walking stick and told them in no uncertain terms that they were in the quiet carriage. “Are you blind? Can’t you read the signs?!!” My grandmother was pretty handy with her stick. What’s more, if she’d bopped them, she would have gotten away it.  After all, she was just a sweet, little old lady. There would have been no court appearances and not even the shout of “guard”! They would have taken their punishment and zipped it. Shown a bit of respect.

Me, on the other hand? One strike of my walking stick and I knew I’d be dragged off the train by armed guards and loaded into a paddywagon bound for greener pastures.

However, in the end someone else stepped in and played bad cop. Yet, this lot of seniors proved themselves a real bunch of reprobates.  They might have zipped it for about 2 seconds, which for this lot even felt like a very pregnant pause, and then continued bellowing through their inbuilt megaphones. You wouldn’t believe it. One of their phones even started to ring and of course another loud voice starts booming throughout the entire carriage. It wasn’t just a case of hello and goodbye either…more of a conversation and as far as I was concerned, quite the life story.

As I said, I know there have been worse crimes against humanity than talking in the quiet carriage but at this point in time nothing came to mind.

After reading and re-reading the same line of my book a hundred times over, I gave up on my book and surrendered to the noise.

Finally, we all alighted at Hornsby Station.

However, as the saying goes, it could always be worse. Aside from country trains passing through, there are no quiet carriages on Sydney trains. You just had to put up and shut up and if you don’t have the luxury of a seat, you also enjoy the thrill of having your nose jammed in a stranger’s armpit as well.

Anyway, after changing trains at Hornsby, I’m now heading down the North Shore Line on my home turf.

By now, I think we’d already established that lady luck wasn’t on my side. Of course, I had timed my train trip to perfection. Yes, it was home time for the hundreds and thousands of noisy, smelly, sweaty school kids who all piled onto my train as it stop started down the line. By this stage, all hope of reading my book was gone. Instead, I became the observer. I must say teenagers intrigue me. Potentially much more fun than the seniors yapping on about their super on the last trip.

I occasionally used to catch trains like this when I was at school…an all girls school. I must have been a bit older than this crowd because we were always conscious of the boys on the train and this lot seemed rather oblivious or perhaps it’s just that they didn’t have Hugh Jackman on their train. We did.

There were no looks, glances or giggles. Each group was its own island surrounded by their own impenetrable shark-infested sea. Ironically, the groups were arranged boys, girls, boys, girls throughout the carriage in their different uniforms. It all looked very strange to me and I felt like I’d landed in some weird, foreign universe. Why weren’t these teenagers all talking with each other? Did all these same kids catch the same train every afternoon sitting in the same “reserved” seats never giving each other more than a sideways glance?

The only thing standing in between them all was different uniforms and yet aren’t we all one human race? You wouldn’t think so. That said, we all know men are from Mars and women are from Venus…even my 8 year old daughter. She and her friends have been “at war” with the boys at school a fair bit lately.

If I could’ve had my way, I would’ve introduced all these kids to each other and tried to build some common ground. Not to play cupid or to nurture teenage romance helping some self-conscious souls find true love, but rather to begin a diologue and cross a divide that starts with different uniforms and extends to gender, skin tone, class, disability and results in war.

If only the problems of the world could all be solved on a simple train ride to Sydney, the world would be a much better place!!

PS As soon as we arrived at the hospital, we heard the dreadful, tragic news that Australian cricketer Phillip Hughes had passed away after a bouncer hit him in the neck, stopping blood flow to his brain. Being a brain surgery survivor myself and being in this really intense state prior to my brain MRI, the news hit me seriously hard. Hughes and his family and friends were no longer strangers but part of our neuro community and I loved them all with my entire heart..especially Sean Abbott who just happened to bowl the devastating ball. I send you love from the  very bottom of my heart!!

Terminal Cyberchondria…Yes! Please!

Being a blogger, a writer, reader and someone who likes to take responsibility for their own health, I’m a prime candidate for Terminal Cyberchondria. While not necessarily terminal in the sense of being life-threatening, you catch Cyberchondria from your computer terminal and more specifically by surfing the Internet for a diagnosis when you have more than a few “vague symptoms”.

Of course, having cyberchondria assumes that you are catastrophising again and your suspicions are wrong. That you have more chance of being killed in a car accident, or while riding a bike, than contracting that dreaded disease. No chance at all!! You don’t even need to cross your fingers, pray, say your Hail Mary’s. It’s all made up. In that great Australian tradition:”you’ll be right mate”!

However, once you’ve been struck by one or two rare, life-threatening diseases, that automatically opens the flood gates for you to develop any weird and wonderful disease… even the dreaded Ebola virus. After all, it only takes one infected person to board a train and it will spread faster than wildfire.

Well, I don’t have to worry about catching Ebola.

That has nothing to do with the fact that I live in Australia. Rather, you can pronounce and even spell Ebola and people have heard about it. That gives me automatic immunity. I specialize in the weird stuff…phenomenon even the doctors have to Google.

Anyway, since I had chemo at the start of the year, I’ve been having serious short-term memory issues and virtually no concept of time. For quite awhile, I’ve written these difficulties off as chemo brain, which is quite a common experience. In a way, this has been an interesting, quirky, experiment but I’ve now decided that it’s gone on long enough. I’m seeing my neurologist tomorrow.

There is quite a list of possibilities for my memory troubles:

1. Chemo brain.
2. Menopause.
3. My shunt playing up. (I have hydrocephalus)
4. Staying up too late.

However, I also started wondering whether these memory difficulties were side-effects of the new drugs I’ve been taking since I finished chemo. I’m on a drug called cellcept, which represses your immune system.

Google: a cyberchondriac’s best friend.

When I Googled its side-effects, that’s when cyberchondria really kicked in. These side-effects include a virus that attacks your brain. In keeping with the unpronounceable dermatomyositis, this brain infection is called progressive multifocal leukoencephalopathy (PML). PML can be fatal. Symptoms include clumsiness, weakness that keeps getting worse, not being able to move or use one side of the body, and changes in vision, speech or personality (such as not caring about things that you usually care about and confusion).

After finding out the name of this dreaded disease, I’m wondering whether the people who name these weird and wonderful diseases and conditions, go fishing in their alphabet soup to put the names together. It has been hard enough to deal with “Dermatomyositis”, which is a serious mouthful but it only had 14 letters. The last word alone in PML has 19 letters. That must mean it’s very nasty indeed.

Going fishing in their alphabet soup. Is this how scientists name rare diseases? I’m starting to wonder…

When I discussed the complexity of these medical terms with Geoff, he pointed out that they are intended to be descriptions so a medical person can quickly identify what is likely to be a complex medical situation far better than simply calling it: “Fred the Super Really Bad Disease That’s Going to kill You”. I can see his point but that still doesn’t help me explain what I’ve got and get any kind of acknowledgement from anyone outside the medical fraternity.

Ironically, while I have these two exceptionally rare medical conditions, I still have my tonsils, appendex and adenoids…all those bits people commonly have out and that’s what concerns me about PML. It’s rare enough and hard enough to pronounce, that it’s just my kind of disease.

You see, despite the cyberchonriacs, there are those rare winners of life’s rare lotteries who actually have what they thought they had. Yes, they actually have contracted one of these exceptionally rare, systemic, really nasty diseases. You know the type of thing that used to show up on the hit medical series House. Instead of being free to continue their explorations in cyberspace, before they even know what’s hit them they’ve been admitted to hospital. Yes, the proverbial Mac truck of bad luck was heading their way and they’ve just taken a very direct hit.

That’s me.

Dermatomyositis is a rare, systemic auto-immune disease where your muscles and skin attack themselves. It affects about 1 in 100,000 people and I’ve only met one or two people with the disease. You can get painful skin rashes and your muscles breakdown resulting in muscle weakness and wastage. While there is no cure, there is treatment which is largely effective although my case has proved more difficult to manage than average. The way I see it, I’m fighting myself and being rather strong willed, it’s been quite a battle. Dermatomyositis can also affect your breathing, swallowing and digestion and there are also the side-effects of the drugs and treatments. I am really surprised that I don’t glow in the dark after all my treatments. I’ve even had the Big C. That’s right. They’ve even blasted it with chemo. Thank goodness it worked.

However, while the medical treatments can be annoying, the hardest thing about having dermatomyositis has to be trying to explain it to anybody. I don’t know if you recall the Decore shampoo   commercial a few years ago where they had the person singing in the shower going: “D…D…D…Decore…Decore”. Dermatomyositis should be classified as some kind of tongue twister. I gave up trying to explain it years ago and just said I had muscular dystrophy. I thought it was a form of MD but it’s officially a neuro-muscular disease. Consequently, I now say it’s related to Muscular Dystrophy. However, if our son is around, he smiles with a baffled expression and tells people point blank: “You don’t want to know.”

Anyway, when you have a very rare disease, it opens the floodgates for all sorts of other conditions. After all, no one can tell you that rare can’t happen to you. Your last name might not be Murphy but bad luck sure knows how to find you!! It has your landline, your mobile and even your email address.

There’s a famous quote from the movie Casablanca which makes me smile:

“Of all the gin joints, in all the towns, in all the world, she walks into mine…”

That might have happened with dermatomyositis but hopefully, progressive multifocal leukoencephalopathy has somewhere else to go. It will board that plane with Ilse and Victor Laslo and disappear way beyond the clouds. Poof!

Goodbye Progressive Multifocal Leukoencephalopathy (PML). Have a nice life!!

Wish me luck with the neurologist tomorrow.

I don’t mind being told that I’ve over-reacted. A bad case of Terminal Cyberchondria is exactly what this patient has ordered.

xx Rowena.

If you are looking for information about dermatomyositis, which is a form of myositis:

The Myositis Association of America: http://www.myositis.org/learn-about-myositis/types-of-myositis/dermatomyositis

The Myositis Association of Australia: http://myositis.org.au/

Dipping My Toe in the Snow.

Wow! After more than seven long hours of driving and spending our first night in Jindabyne, we arrived bright and early in Perisher, otherwise known as “the snow”.

As I looked around soaking it up, I felt like I’d landed in a huge tub of cheap, whiter-than-white, vanilla ice cream. You know the stuff that’s pure white and not one of the better, creamy vanilla ice creams. The snow was deliciously thick and the skiers out on the slopes looked like those miniature figures you stick on top of birthday cakes. All we were missing was the candles, a match and Happy Birthday!

The weather wasn’t the best on our first morning. It had rained a lot the day before and the mountain was shrouded in mist. You couldn’t even see mid-station, let alone the summit. Visibility is a good thing when you’re skiing. By midday, the mist had lifted clearing the way for azure blue skies, which we enjoyed for the rest of the week. It was serious beach weather and all that was missing was the water. However, despite the balmy sunshine, it was still only 6-8°C out there and definitely NOT bikini weather…even for our daughter!!

Sun shining through the Snow Gums, Perisher.

While our kids went straight to ski school and my husband headed out to the slopes as soon as he could get the rest of us organised, I’d booked an adaptive ski lesson at 11.30 and had a bit of a wait. I am a member of the Disabled Winter Sports’ Association and I receive lift tickets and ski instruction half-price. We also received some much appreciated financial assistance under the Flexi-Rest program.

My instructor helping me on the Magic Carpet last year. I didn’t need that hand this year. Could get up the carpet myself.

I was stoked to book a lesson in with Tom, my ski instructor from last year. Tom is a specially-trained, adaptive ski instructor. He’s mean on two skis but I’ve heard that he’s also a legend in a sit chair. While it’s an achievement to be able to ski at this level, it is such an inspiration to see someone use their physical strength and expertise for good and to help people who are experiencing a few extra challenges, achieve their dream of skiing. This not only takes exceptional skiing ability but also a detailed understanding of the subtleties of so many different disabilities, treating people with respect and knowing when and how to encourage while bearing real and potentially risky limitations in mind. I was going to say that this is a gift, a talent but it’s no doubt taken a lot of hard work, a good set of listening ears and a real passion and empathy for helping people with disabilities to reach their potential.

I can’t tell you what this has meant to me and our family. It really is a terrible thing when you can’t go on a family holiday and do things together. That one member of the family is shut out and excluded when with a bit of patient, qualified assistance, they could be taking part. While I always appreciate a bit of “me-time” and having a break, it’s quite something else to be shut out of family activities. Through Tom’s help, the bird was set free from her cage and truly able to soar!!

Last year, Tom actually skied backwards down the mountain for me. That’s right. Tom skied backwards down the mountain so I could ski forwards feeling safe yet encouraged. This was much the same way as you see a parent encourage their toddler to walk beyond their first few tentative steps. How many people can say that anyone’s done that for them? Not many, I’m sure!! But Tom did that for me. Being a ski instructor, skiing backwards down a mountain wasn’t a big deal for him but it made a huge difference to a completely freaked out, panic-stricken me. There I was gobsmacked, perched on the very edge of the world holding my breath as I looked down, down, down. Perisher Village had shrunk into nothing more than a handful of dots. It was such a long, long way down and I was held in the very grip of fear. Indeed, I was frozen to the spot until I fell over. As much as I wanted a skidoo to come to my rescue, Tom went backwards down the steepest part at the top of the mountain holding my hands to encourage me down. I’m surprised that he wasn’t needing to dangle chocolate in front of me to lure me down, I was that frightened. At the same time, I desperately wanted to pull off this challenge. It had been in the pipeline for an entire year and I wanted to ski down this blasted mountain and turn my personal mountain around. I wanted to ring that victory bell!!!!

So having reached the bottom of the mountain, you can understand why Tom is my hero and has earned my respect. Oh please! I’m not some shameless, gushing cougar. No, I’m a skier! Tom and I discuss life, philosophy, writing, books and of course skiing while we’re out on the slopes. You do get to have a bit of a chat while you’re on the magic carpet. It takes awhile to crank you up even a small slope.

So there I was (along with Geoff who wanted to see how I went) a year later meeting Tom for my lesson on day 1. It was great to catch up but at the same time, I was apprehensive. How was I going to go after getting through pneumonia, a flare up of my auto-immune disease (which attacks and destroys my muscles by the way) and chemo? This savage trifecta might have knocked me down and tried its best to wipe me out but I’d got up again. Not just on my own strength but because effective treatment is available and also through the power of prayer. God wasn’t sleeping on the job either.

When it came to getting back onto the snow again, that’s where having a qualified instructor really made a difference. Left to my own devices, I wouldn’t have known quite how to get myself back onto the snow. However, Tom had me moving my legs back and forwards to get used to gliding and we did a few other bits and pieces and my ski legs almost came straight back to me. I was pleasantly surprised and somewhat amazed.

In no time at all, I was back up on the magic carpet and we were both seriously impressed. I had pretty much picked up where I’d left off last time. I was fairly smooth aside from some serious jolts and wobbles getting on the magic carpet. We did some snowploughs, turns and once again he drew the `S’ in the snow with his pole to illustrate turning. It all went so well…almost uneventful, which was pretty hard to believe after everything I’d been through. Last year, Tom even had to remind me to breathe on my first couple of days. Talk about progress!

It turned out that Tom was going to be away for a few days and so I’d be having some different instructors. I was initially very wary because Tom knew me so well and I hate having to explain my issues over and over again. Tom had also been quite literally my tower of strength last year. I am quite tall and when I fall over, it can be quite difficult for me to get myself up again even on land let alone on slippery skis in the snow. I knew Tom could do that. It really helps when you know someone knows you in this way and can help you.

Yet, while Tom and I are great mates, it was good for me to go with the other instructors because they each brought something new or emphasized a different element and so I developed quite a lot of depth to my skiing. It also meant that I came to rely more on my own strength and appreciate that it was me and not just Tom that was bringing about my success. I was practicing for an hour every day in addition to my lesson so I’d made quite a commitment to improving my skiing and was working as hard as I could. While practice might make perfect and it is tempting to try to get value for your ski pass, I do have a “smaller engine” and I really had to pace myself to get through the day. Two hours of skiing for me was my limit.

Close up a snow gum. They are so tenacious, enduring often extreme conditions yet so beautiful.

While my first day of skiing went exceptionally well, I hit an unexpected snag. Someone took my skis. Everyone stacks their skis on the racks provided and given that it’s mostly hired gear, you can understand people getting their skis mixed up. However, I had been using Geoff’s own poles and these were clearly labelled in not one but three places. At first, we spotted a pair of similar skis near where I’d left mine and thought there had been a mix up. Night skiing was on so people were still hanging around at the end of the day waiting to go out again so there were still quite a lot of skis out there. Soon those skis had been claimed and things were looking bad. Geoff rang through to the ski hire company and fortunately, someone had dropped my skis back to a ski hire place in Jindabyne. It turned out their skis were a different colour to mine on a different rack so you’ve really got to wonder what they were thinking. There I was with all sorts of memory issues from chemo brain yet someone else mixed their skis up and took mine!! You could say it takes brains.

That night, Geoff logged in and check out our ski stats. While my altitude metres were pretty woeful and that included my trip up to mid station as a walker to get my hot chocolate, I did actually score the most lift rides for the day. That’s the advantage of taking the magic carpet. It’s short and sweet.

The easy way to get down the mountain.

As pleased as I was with my progress, the mountain was still looming ahead. How would I work up the courage to get down the mountain again?

I still didn’t know.

Stayed tuned for further installments!

xx Rowena

Teaching the Kids How to Cook

If you have been following my blog, you will know that I am currently having chemo to treat a rogue auto-immune disease. The chemo is going well and apart from some fatigue, I am largely feeling quite well. I am also starting to feel that the treatment is working and that my lungs are slowly improving…at least a bit. I’m still walking. Still breathing. Yesterday, I was bouncing around in the pool with the kids giving them piggyback rides. I certainly don’t look sick at all!

While chemo is going so, so much better than expected, it has been very thought provoking time and my entire life has ended up on the dissection table. Where am I going? What is important? What stays in and what goes out? It has been very intense at times.

However, while I’m naturally concerned about managing my own life and health, the kids are virtually my all-encompassing consideration. Mister is almost 10 and Miss is almost 8. They are too young to be faced with losing their Mum. That said, they’re not as young as they were. I’ve almost been fighting this disease for 8 years and am thankful for each and every extra year that we have together. Thankful that they are older, stronger, more independent and more likely to remember Mummy than the year before. This isn’t a morbid thing. It actually makes me really appreciate life more as well as the need to carpe diem seize the day. Squeeze each and every last drop out of everything. No waste! We really enjoy life most of the time.

Yet, while there is every likelihood that I’ll get through this crisis and be fine enough, the shadow is still there.  I feel very strongly that I owe it to Geoff, the kids and also to my parents to have my shit at least somewhat sorted out. I don’t just want to leave them in the lurch and make any bad outcomes any worse than they need to be. We all need to be somewhat prepared for when that mythical bus finally comes to get us and I want to leave a legacy, some memories, something for them to hold onto and not just an empty space. That is really, really important to me and I believe even more important for them!

Just before I was diagnosed with dermatomyositis 6 years ago, I read a book called Letters to Sam by Daniel Gottlieb, which was a series life lessons written in a letter format to his grandson. I was incredibly moved by this book and inspired to write something similar for my kids. I pounded the keyboard and wrote something like 40,000 words stopped and walked away. I decided it was crap which was probably me just being overly critical again although I had also read The Prophet by Kahlil Gibran and he put things so beautifully that anything else seemed quite redundant. Besides, I went into remission and it seemed like life lessons could wait. I’d become immortal!

With my recent health setback, I was more concerned about the practicalities of life rather than philosophical issues. After all, not all life lessons come in a book. They’re also hands on and tactile, developing our bodies as well as our minds.  I realized that the kids needed to become independent, responsible and stand on their own two feet and that cooking teaches these skills. These are skills they need to develop regardless of my health status. After all, cooking and cleaning up after yourself are essential, survival skills.

The further I progressed, the more I came to appreciate that cooking actually covers a whole range of life lessons. Cooking teaches the kids how to:

1. Plan an activity.
2. Follow procedures.
3. Listen to instructions and follow through.
4. Learn by example.
5. Time management
6. Work as a team
7. Experiment
8. Clean up after themselves.
9. Have fun!

They also learn about the ingredients, their nutritional values and how they work together (or not).

Cooking and food preparation, also teaches them about their own bodies and how they operate and how food establishes and maintains good health, preventing disease. It also teaches them about the environment, preventing waste and issues like ethical food production and reducing food miles.

For our family, meal time is also a time of prayer when we give thanks to God and also pray for people in need.

Another huge bonus is that we are cooking together and bonding as we go. As the kids gain new skills, their confidence increases and they feel I trust them. That I believe they can do it and that goes a long way in helping them believe in themselves.

I am the chef and they are my eager apprentices. They love it and are keen to help, be included and have fun!

I never realized the simple act of cooking a meal could be so educational!

The cooking project has evolved as I’ve gone along. What started out as a desire to share special family recipes evolved into teaching them how to bake basics like Chocolate Crackles. As I faced chemo, I realized that they really needed to learn to cook nutritious meals, not just cakes. Life had taken on a more serious tone.

However, like most of my “educate the kids projects”, I had to bring myself up to speed before I brought them onboard. After all, I had to provide clarity, direction and leadership. I need to have clear directions in mind and know where we’re heading. This cooking project was never going to work as some horrible variation of Blind Man’s Bluff. That would only lead to fights, frustrations and destruction. The outcome would be negative instead of positive.

I had a lot to learn! Although I am a good cook especially when it comes to baking, I’ve been sick for quite a long time and my cooking has ended up in an extremely narrow rut. Every time I visit the butcher, I stare blankly at what really is a smorgasboard of choice and order chicken schnitzel or a leg of lamb yet again. My niece recently shared her secret of roasting boiled potatoes in the waffle maker and that’s bailed me out too. I also keep peas and corn kernels in the freezer which have been a salvation as well. As bad as things have been, I’ve never resorted to tinned spaghetti and there’s always been the local Thai takeaway. They know us well and produce a good, nutritious meal! We’ve also been given a few meals too thank you very much!

Back to the Cooking Project.

Step one…planning.

Last week while the kids were at my parents’ place, I started the preparation process. I went searching for recipes and expanding my own horizons. It’s seems that in the many years since I last really went looking for meal ideas in recipe books (in contrast to baking which I’ve steadily maintained), the whole landscape of Australian cooking has changed. In my day, the Australian Women’s Weekly had an international cooking series where each nationality was kept distinctly separate. Italian was in the Italian book. French in the French book and Chinese in the Chinese book. Thai was a relative late comer to the series. They’ve recently put out a recipe book called Kitchen where the recipes are organized by cooking utensil. Under “The Saucepan” for example it includes: Beef Massaman Curry, Lamb Meatball korma, Baked Pumpkin and Spinach Risotto and Fettucino Alfredo all in the same chapter with all the nationalities mixed together under the unwritten banner of “modern Australian”. Don’t get me wrong. This is a great development. Australian society isn’t always such an integrated, cultural melting pot but it does show me that we’ve come a long way!

I developed a menu for the week, which has needed to become more flexible after my Dad bought us some chops and we’ve been out to dinner as a family and had a friend over for a rather unhealthy lunch of fish and chips. A friend also popped over with four of her kids and her daughter largely made the pancakes for lunch with me so that was another variation on a theme. Hmm…flexible focus. I’m learning on that front as well.

Here is our proposed menu for the week:

Monday night: chops and salad.

Tuesday night: Atlantic salmon and salad

Wednesday night: Pizza from scratch with Salad and Apple Pie for dessert.

Thursday night: Roast lamb with roast veggies (this is my chemo night).

Friday night: Lamb salad.

Saturday lunch: pancakes. We serve these with grated apple and I quite like blueberries as well.

Stay tuned.

Best wishes,

Rowena xx