“Speak even if your voice is shaking”…

The terrible thing is that for every person who takes their life, there are others just hanging on to the very edge of the abyss by the skin of their fingertips. Moreover, we often don’t find out who they are until it’s too late.

On January 3, 2018 a young Australian teenager “Dolly” Everett tragically took her life in response to cyber bullying.

At the time, I was quite surprised that this young woman would be a victim of any kind of bullying, let alone something bad enough that this was her only escape. She was a very attractive young woman, who had modeled for Akubra Hats. I don’t know. I guess it just goes to show that nobody’s immune to being bullied or its consequences.

In the days before she passed, Dolly drew a young dancer with the heading: “Speak even if your voice is shaking” and these words are now being used in a media campaign to tackle cyberbullying and bullying in general.

However, Dolly’s words came back to me today in a different context. That her advice doesn’t just apply to people experiencing bullying, but about also enduring other trials and bottling their feelings up.

After all, it’s not easy to find the words to express yourself when you’re stuck in a labyrinth. It’s not easy to reach out and say you’re not okay. To go beyond that socially acceptable “fine”, when someone asks you how you are, even when you’re feeling shattered.

I try to laugh about it
Cover it all up with lies
I try and laugh about it
Hiding the tears in my eyes
Because boys don’t cry
Boys don’t cry…

The Cure

I don’t know whether we ourselves are holding it all in, or whether it’s what society expects. Turning back the clock a bit, there was that classic song by The CureBoys Don’t Cry However, while our society has encouraged men to be more emotional, I suspect it’s also pushed women to be more controlled and to adopt the stiff upper lip. What do you think? I certainly don’t want to break down and cry. No, I’ll soldier on. Keep smiling… sunny side up. I don’t know whether it’s a case of denial or acceptance, but there isn’t a manual for how to keep living year after year with a severe life-threatening medical condition either from my own point of view, or from that of my family. We just keep going, because we have to and because we want to. I don’t want to die before I’m dead!!

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Yet, through Dolly’s words, I’ve also realized that I’ve been silent. That I haven’t been speaking up, and we as a family haven’t spoken about the elephant in the room for quite awhile. After all, we’ve been living with it for 12 years now, and it’s starting to look like we’ve established some kind of mutual stand off. That it has its part of the house, while we have ours. Yet, that doesn’t mean it doesn’t exist. That it’s not here and sometimes moves so close that I can feel it’s breath against my skin. I start to scream. Feel my life slipping away. Then, somehow the storm has passed, and we’ve back to calm seas and endless blue skies.

Yet, as hard as it is to speak when your voice is shaking, it’s not always easy to write about it either. Indeed, for the past couple of nights, I’ve been typing randomly into my computer hoping to unravel the wound up spring inside. Work out what’s eating me alive, when everyone else is asleep. What’s wrong.

Rowena sun

Here I am at Railway Park, Byron Bay.

 

It always seems to come back to this. I live with a neuro-muscular, autoimmune disease called Dermatomyositis, which has spread to my lungs causing fibrosis. I look perfectly fine most of the time on the outside. However, if my lungs were my face, you’d barely see my eyes through the scar tissue. Yet, I breathe. I walk. Play the violin and sometimes dance. I also love and hug my husband , my children, my Mum and Dad and the puppy dogs. I have a rich and beautiful life jam packed with love. More over, I am also able to give and care for those around me. Put my arms around the broken-hearted, and shelter them from life’s storms. Try to help them feel loved. Indeed, even in the face of all my health issues, I strongly feel that my time on the planet has only just begun, and couldn’t be about to end any time soon.

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But these are the words, the feelings, the fears, I carry on my shoulders like Atlas, because I don’t want anyone else to worry. I don’t want them to be afraid. I especially don’t want my kids growing up wondering when Mummy’s going to die. It’s much better to keep those thoughts to myself, although given my frequent coughing attacks, they must also have their doubts. I’ve been stuck gasping for air too many times and desperately holding onto that Ventolin for them not to be freaking out.

Yet, how long is a piece of string? No one knows. Not even those who think they know, get it right. Dying seems to be a very complex equation. Indeed, this week we saw death’s contrariness personified in the death of Stephen Hawking at 78 years of age, when he was supposed to die in his twenties.

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So, there is no crystal ball. You can’t predict when your number’s going to come up and to me, it’s all starting to look rather random.

So, what can we do?

I guess that’s where I thoroughly believe in Carpe Diem…Seize the Day. You need to be thankful for what’s going well and you do need to find an outlet, some way you can share those challenging days and emotions and know that your concerns will be taken seriously, respected and that someone will respond in exactly the way that is right for you…be it a hug, a bunch of flowers, a card, a poem.

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Now, I’m going to turn this around and throw the challenge back to you the bystander…”Speak even when your voice is shaking”. I have also been in the situation many times where someone I’m close to is sailing way too close to the wind.When  I know life is excruciatingly painful, and they could well pull the pin. Again, there seems to be no manual for what to say in this instance either. If you’re anything like me, you can get tied up in knots trying to think of the right thing to say. What to do. “I dunno!” Surely, something is better than nothing. A stutter or an awkward stumble, is better than silence.

In Australia, we have “R U OK Day”. This is a fantastic idea because it at least provides some kind of way to start that awkward conversation.

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That said, once we’ve asked the question, we need to be able to leave room for the consequences. Make sure we have enough time to listen. Moreover,  I believe most of us should have some basic understanding of how to handle a mental health crisis. Anyone of us could be that first responder and you’re not always in a position to call 000 or 911. I have been in this situation and I must admit that I had the peace of God around me at the time, because I am not a calm person.

As a parent of teenagers, this is a huge concern. Not just for me, but all parents of teens and all who love and care for them.

This takes me back to something Dolly Everitt’s Dad said:

“Be honest with your kids. If you can’t connect with them for whatever reason that may be, find someone that can. They’ll always have a mate they’ll always have a little buddy somewhere that knows more than mum and dad.”

– Tick Everitt

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So, I apologise that my thoughts have wandered but I don’t profess to have the answers. I just have the questions. Yet, I’m thinking. I’m trying to find a better way to handle my own hard yards, and also to reach out and be there for those within my sphere. After all, I’m only human. The rest is in God’s hands.

Please leave your thoughts in the comments, but if something is troubling you, I encourage you to turn to someone where you live who can truly be there for you.

Love and best wishes,

Rowena

PS You would think that by broadcasting my thoughts on the World Wide Web that those closest to me emotionally and also in proximity would also be the wiser. That they’d read my confessional on my blog and know what’s in my heart and mind. However, there is that cyber divide and my family rarely reads my blog. Indeed, it wouldn’t surprise me if they knew a very different me, and for those of you who also blog extensively, that this is the same for you. This is important for us to keep in mind, just as it is for parents to be aware that they don’t know what they’re children are sharing online or how they’re being treated. There are two worlds.

More About the Photos

The photos which appear in this post were taken in August, 2011 in the Railway Park at Byron Bay, NSW. Byron Bay is a stunning coastal town with such amazing natural beauty, a striking lighthouse and since the 60s, it’s been a magnet for hippies and alternative lifestylers. People who are troubled, searching and potentially experiencing mental health issues go to Byron Bay to clear their head and yet their issues only follow.

We have taken our kids to the climbing tree whenever we’ve gone to Byron Bay to stay with Geoff’s sister and family. It is our home away from home. Or, at least it was when we could get away more often.

This climbing tree is rather special because it’s fallen on its side so kids can climb it easily and given the hippy vibe of the area, it’s not surprising that people tie scarves and ribbons in the tree. We’ve even found an empty milk crate suspended from a rope.

However, on two separate occasions many years apart, we met  a lady, Mama Dee who was painting the tables and chairs and decorating the tree as a tribute to local youth who had taken their lives. Indeed, her son had accidentally died in the park through an overdose of prescription drugs. She wanted to honour all these precious young people and also brighten up the park for children and make the place happy.

I hope her gift of love will also touch your hearts as it has moved mine.

 

7 thoughts on ““Speak even if your voice is shaking”…

  1. Colline

    Bottling things in has been going on for generations – I think of my mom and how many things she has not said because it is what was expected of her. Even this morning as I was speaking to her, we were saying how there are so many experiences that women (no matter what their age) just don’t talk about.
    Cyberbullying, however, is what our children have to deal with and, as a parent, I hope that I am helping to build a strong sense of self esteem in my children so that they know to speak about what is happening on the internet with those who can help them overcome the bullying. I have also tried to limit their exposure until they were a little older to deal with negative comments on the way they look and behave.
    What you are experiencing health-wise must be very difficult – not only for you but also for your family. It must be a very fine line between letting your children know what is happening to you , and them not being afraid that you will not live for much longer.

  2. Mabel Kwong

    This was such a brave post to write Rowena. ‘Speak even when your voice is shaking’ This is not easy to do, but sometimes we have to do it – speak up and stand out ground so we can continue an important conversation. Yet it takes time to speak up, time to collect our thoughts and there are better times over others than to speak up. I applaud you for how you choose to live your life, by soldering on even with dermatomyositis which doesn’t sound pleasant to have at all. Love yourself and love others, and more often than not things will fall into place and that will keep you going. Lovely photos to go along with your words 🙂

  3. Rowena Post author

    I was very proud of my son because he stood up for his friend who gets bullied at school. I don’t know why it is some kids get bullied more than others, but it seems if you don’t shake it off quickly, it’s like you have a target on your back.
    My son doesn’t get into social media much and barely uses his phone and could actually do with a bit more awareness about his appearance. My daughter goes up and down about her appearance and seems quite relaxed at the moment. Here in Australia, kids wear uniforms to almost all schools and so I think that takes out some of the peer pressure but there’s still the cool kids, the nerds etc.
    It is hard to know quite how to handle my health situation. It is quite possible I’ll turn 60, 70 and still be here but there’s that more known risk that something might happen. There’s a sense of needing to be prepared and yet how can you ever be prepared for death and having all your affairs in order? I have trouble remembering everything I need when I walk out the door on an ordinary day. I really want to get some books written and yet I don’t take serious steps to get on with it. A few years ago, I was frenetic. I had to get things finished. Now, I’m much more chilled which is good but I want to get some things accomplished. That said, I’ve also been putting a lot of time in getting the home front and the kids organized which is so important. It would be great to be able to clone myself!
    I’m glad I raised this issue on the blog, because it feels like it’s shrunk a bit. Is more contained.
    Thank you so much for caring!
    xx Rowena

  4. TanGental

    tough old post to read this Ro. Your battles are immense and yet you manage to stay in the minutiae of life and kick the big stuff at least sideways. So to read how it gets on tip, how the ‘voice is shaking’ is as I say tough. Carpe diem is easy to espouse but I’m sort of with Mrs Doubtfire preferring carpe dentum – seize the teeth… Lots of love from a snowy UK (what’s this thing called spring? Total fiction up here, but look on the brightside, at least i haven’t pissed of Vlad the Putain just yet so my risk of being poisoned with a bespoke pollutant is remote)

  5. Rowena Post author

    Thanks so much, Geoff, I’ve been working on a document highlighting the very worst of my medical stuff for the last month or so and it’s certainly been difficult to stare it all in the face like this. I’m almost done there so hopefully I’ll be able to focus more on the bright side of life. We watched Miss audition for a youth in performing arts program. She is at the youngest end of the age group and so hard to know how she’ll go competing with older applicants as it goes up to 25. Still she performed beautifully and did us all proud. I’ll be posting some photos on the blog shortly so stay tuned.
    Yes, I don’t think it’s a good time to be exercising your Russian accent in London at the moment. Better off posing as an Aussie I’d say…G’day mate!
    xx Ro

  6. Mabel Kwong

    Thank you for sharing that article, Rowena. Such an inspiring piece. We can all pick up ourselves if we keep fighting and see what we’ve got around us.

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