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.