Smorgasbord Blog Sitting Special – Life was meant to be easy by Rowena Newton- Beyond the Flow

Today a post from Rowena Newton of Beyond the Flow, who has faced some life threatening and changing challenges but clearly faces the long-term issues with positivity and a love of life.

Life was meant to be easy by Rowena Newton.

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.

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!

Rowena skiing downhill Fri

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

rowena piano

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.  Best wishes, Rowena

©Rowena Beyond the Flow 2018

My thanks to Rowena for sharing her story and the inspiration that she offers all of us, especially those facing long-term health issues.

About Rowena.

Beyond the Flow is about being a bit quirky, creative and not quite conforming to the mainstream…whatever that might be.

Kooky stuff also happen to me, undermining all my attempts and best efforts to go with the flow. Blend in. Be “normal”. You’ll notice this certain je ne sais quoi when you read about my efforts to teach the kids how to cook pizza. You wouldn’t believe it but the yeast initially flew away and during the kneading process, our son transformed into the “Abominable Doughman” with his hands caked in dough. However, like most of our craziness, it all worked out in the end with a perfect meal.

Beyond the Flow documents our journey through life’s ups and downs from a fairly philosophical and hopefully humourous perspective so hopefully you’ll laugh, cry and think a bit as you share in our adventures.

Based on the Australian East-Coast just North of Sydney I am a mid-40s writer, blogger, wife, mother and I’ve been working in marketing communications with a focus on the non-profit sector. I’ve worked on issues such as: water conservation, science promotion, HIV/AIDS, Industrial Relations and have been the Marketing Manager of a local IT company for a few years. I have also been on the Status of Women’s Committee for our local council, which organises the local march for International Women’s Day. In addition to my writing, I usually don’t go far without my Nikon SLR in tow and am frequently deemed “the papparazzi” by family and friends. I even took photos at our fairly formal wedding reception and a friend joked about me having a camera concealed in my bouquet but that was in the days pre-digital. It would have been a “must-have” otherwise.

You see what I mean about being “beyond the flow”.

Connect to Rowena

Blog: https://beyondtheflow.wordpress.com/about/
Twitter: https://twitter.com/Rowena_Dreamer
Facebook: https://www.facebook.com/rowena.newton

My thanks to Rowena for sharing her inspirational story and I know she would like to receive your feedback. I will check on the comments when I return. Thanks Sally

 

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36 thoughts on “Smorgasbord Blog Sitting Special – Life was meant to be easy by Rowena Newton- Beyond the Flow

  1. Rowena, you certainly have had more than your fair share of life’s challenges, but good for you that you are facing them head on and looking for work. I am living with the after effects of cancer treatment, but like you want to work because then you know you’re well enough. I work 2 days per week and enjoy being as ‘normal’ as I can be.

    Liked by 2 people

    • Stevie, all the best with recovering from your cancer treatment. It’s great you’ve made it back to part-time work, but at the same time it can be frustrating trying to fight your way back. Indeed, I’ve found I don’t want to go back and that I’m too different now. Needing to forge a new future. I don’t always write a lot about living with my health issues, but I wrote about my difficulties trying to find a pair of sensible shoes and all that meant today: https://beyondtheflow.wordpress.com/2018/02/17/finding-my-happy-feet/
      Best wishes,
      Rowena

      Liked by 2 people

      • Just read it. I’ve never worn stilettos – I just think of the damage they do to a woman’s back and posture. I’m past caring that I’ve always worn flatties – life’s too short to walk about in uncomfortable footwear!

        Liked by 2 people

      • Thanks, Stevie. I never think about the pain and discomfort when I’m pining over them through a shop window. Or, the fact that I’m already tall enough and they’d turn me into a giant. We live in a beach community here and I don’t walk around barefoot outside the house or on the beach, but that’s probably when I’m most comfortable and most myself.

        Liked by 2 people

      • Stevie, as awkward and embarrassing as the trouser split would’ve been back in the day, it makes for a hilarious story now. I got myself what was a very trendy haircut when I was 15, which involved perming the top and having an undercut at the back. That started out okay but I went out in the sun and I might also have added some peroxide hoping to go blond, but my hair turned orange. They my straight hair started to grow back and I had a few rounds of heart ache and kept cutting my hair as a coping mechanism. I’m sure we’ve all had our turn at being the teenage tragic!

        Liked by 2 people

      • I shouldn’t laugh but I did! Yes I remember asking the hairdresser for a ‘feather’ cut like Suzi Quatro’s. Unfortunately I have very curly, sometimes frizzy (if I don’t use the right shampoo) hair, and it was just a disaster. It took ages to grow it out.

        Liked by 1 person

    • Thank you very much, Irene. Humour has helped me get through so many tough situations. That said, I also realised at one point that I’d become too funny and I was actually in a very bad head space and it was time to step out and doing more straight talking or nobody would realize how hard things were. Always important to remember the clown and the tear and that the tear could well run deeper than the smile.
      Best wishes,
      Rowena

      Liked by 2 people

      • It was excruciatingly difficult for me when I was hospitalized with the dermatomyositis and being away from my kids and just feeling dead but alive, a weird state of being you might relate to. I try to be as honest as I can about that with people because while I have overcome a lot, it hasn’t been smooth sailing and it’s hurt. Yet, hopefully my experience can encourage people to persevere.
        You might also enjoy a post I wrote today about having to give up high heels and finding a great pair of sensible shoes: https://beyondtheflow.wordpress.com/2018/02/17/finding-my-happy-feet/
        xx Rowena

        Liked by 2 people

  2. Like you, I’ve been greeted by a barrage of crap in my life which led me to create the following quote, “Into life a little rain must fall, but in my case, does it always have to be a hailstorm.”
    We trudge on, because our hope urges us to take the next step. I too turned to writing in an effort to purge what bad I can, and to enlighten others, extend a helping hand.
    Keep on lady, we are much tougher than we realize. Hope that cough leaves you.

    Liked by 3 people

    • Thank you very much for stopping by and I’m sorry you’ve been through such hardship. It is often hard to make sense of it all but somehow we need to rise to the challenge and work out how to fight back and stay on our feet. My kids are both in scouting and their motto is to be prepared and I saw a movie tonight which reminded me that we need to skill up, keep fit and do what we can to fight whatever comes our way. That knowledge also gives us power. That as tempting as it is to lie face down in the mud or to pull the dooner over our head, that we need to get back on our feet and start throwing punches.
      Best wishes,
      Rowena

      Liked by 2 people

  3. I’m awed by your tenacity, I probably would have curled up in a corner and given up about then! Imagine what inspiration you bring to your children and those who know you. Very glad you’re still around to share your story. I love the pic at the top, your smile is bigger and brighter than the sun 🙂

    Liked by 2 people

    • Thank you very much, Sharon. Things here seem to go in ups and downs but they’re more extreme, like the proverbial roller coaster ride. The art is in trying to maximise what you take out of the good times and not to weigh too heavily on the bad and also to somehow feel you’re in the driver’s seat and not always being run over. At the same time, I’ll take that break from adversity and it will be interesting to see what form it takes!
      Best wishes,
      Rowena

      Liked by 1 person

  4. Pingback: Smorgasbord Blog Sitting Special – Life was meant to be easy by Rowena Newton- Beyond the Flow | Smorgasbord – Variety is the spice of life

  5. Lovely to see you here on Sally’s blog Rowena. You are an inspiration to all of us and especially those of us who have faced difficult times health wise, it can be a scary and frustrating time for even the strongest person, you show by your life story that we can all overcome, that when we are faced with such difficulty that we don’t know where to turn, that there can be hope and ways to deal with what life throws at us. Very inspiring, thank you. x

    Liked by 2 people

    • Thank you very much, Gaia. It’s a very different scenario to tell someone they’re going to be okay when they haven’t been through it, but it’s quite another when they can see you’ve done the hard yards, You’ve crashed. You’ve burned. You’ve felt like you’ve been flushed down the proverbial and yet you’re still here. You’re still fighting and something is carrying you forward. My family and the fact my kids were so young when the auto-immune disease struck and really needed their Mum and for their Mum to be well, has pushed me on, but it has also stretched me well beyond my capabilities many, many times. My parents have generally had them for a week every school holidays to help me regroup. They’ve been amazing along with sister-in-law and her husband. True life savers.
      xx Rowena

      Liked by 2 people

  6. Wow, what an incredible life you are mastering Rowena. My hat is off to you for being such a warrior woman and overcoming so much. You are an inspiration to so many for all you strive to accomplish in the face of adversity. 🙂

    Liked by 3 people

    • Thank you very much, your Geoffleship. I love that descriptor: “the epitome of keepgoingness”. For some reason that really seems to kick in after midnight. All cylinders fire up and my mind, body and spirit are in peak condition. I was on a scout BBQ raising money for the kids to go to Jamboree for two hours today. I was in bed most of yesterday and I had no idea how I was going to hold out and dreaded being able to count the change etc.However, I had a ball doing it and was chatting away and it really boosted my confidence.
      That reminds me that there’s my own keepgoingness but there’s also that thing of being propelled way out of my comfort zone by the forces around me, largely my kids. It happens to all of us parents, I’m sure. Just when you sit down and get comfortable, something else needs to be done. I know it’s good for me but it can also feel like a spoonful of cod liver oil being rammed down your throat.
      Hope you are having a great weekend!
      xx Ro

      Liked by 1 person

      • Ha yes, the pressure to perform. A football manager (that’s soccer) called Ian Dowie once came up with a new concept for his under pressure team that never gave up ‘bouncebackability’. That’s what you show.

        Liked by 1 person

  7. Wow, what a fighting spirit and I am sorry life has dealt you a bum hand but how you have dealt with that is awesome…I hope your cough has gone our daughter is a chronic asthmatic and the winter/cold never does her health any favours and to watch her struggle to breathe is awful but like you she never ever gives in and just takes it in her stride…A brilliant post full of hope..Stay well 🙂

    Liked by 2 people

    • Thank you very much, Carol. My son also has asthma and he has had a horrible cough ever since he was a baby. It terrified me. The cough I get is dreadful and it scares the rest of the family and they’d evacuate a train if I was on board. Coughing has become the modern leprosy.
      The thing with the asthma and my lung infections, is that I’ve noticed myself getting more cruisy about it because I’ve beat them off so many times before, but that doesn’t mean the risk is any less. However, it’s hard to be on critical alert all the time and still live. Sounds like your daughter is much the same.
      xx Rowena

      Liked by 2 people

      • Yes, you are right Rowena… you take it in your stride when the reality is it is life-threatening…although she finds it much better for her health here where we live and myself apart from the first year I was here haven’t had my cough ( which) my hubby always said he would hire me out to the port of London authorities as a fog horn..haha..nice man…lol But she is seriously considering staying here in the winter months …I wish you well Rowena xx

        Liked by 1 person

  8. Pingback: Life Was Meant To Be Easy. | beyondtheflow

  9. Pingback: Weekend Coffee Share – 18th February, 2018. | beyondtheflow

  10. Pingback: Smorgasbord Blog Sitting Round Up – Amazing contributors taking care of the blog in my absence. | Smorgasbord – Variety is the spice of life

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