Welcome to Beyond the Flow
“I may not have gone where I intended to go, but I think I have ended up where I needed to be.”
― Douglas Adams, The Long Dark Tea-Time of the Soul
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, this motley cast and crew features:
2012…Writing at the snow
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”.
A major part of my journey involves my ongoing battle with a severe life-threatening auto-immune disease, called dermatomyositis. To put it very simply, my muscles attack themselves resulting in muscle loss and it also affects my skin and more recently my lungs. It was triggered almost 9 years ago by our daughter’s birth which threw my immune system into overdrive. Dermatomyositis affects roughly 1 in 100,000 and is similar to Muscular Dystrophy except that it ideally flares and goes into remission. Most of the time, I am fairly well and walk around OK. Fortunately, I have an absolutely incredible medical team behind me. Actually, they’re in front of me and somehow they keep pulling rabbits out of that proverbial hat. It’s been a very contradictory journey as we carpe diem seize the day and continue living while grappling with medical appointments, treatments and the usual family stuff. This journey is certainly “beyond the flow”.
Three years ago, just before I started the blog, we found out that the inflammation had started to cause fibrosis in my lungs. We received this news just before the Christmas break when Australia basically goes to sleep for a few months and it took me about 4 weeks to get an appointment with my lung specialist. Of course, that was an agonising wait…especially over Christmas. Once we saw the specialist, there was conservatively good news and we could get on with it.
During that four week waiting period, I had a fairly major let’s call it “existential crisis”. I was absolutely emotionally wiped out and devastated as I thought about my kids losing their mum. They were only 7 and 5 at the time and our daughter was still at that age when little kids hug you round the legs or hide behind your skirt. Our son had had a particularly difficult year at school and he needed me just as much. Those 4 weeks were cripplingly heartbreaking but we got through. We prayed and family and friends encouraged…hoped for the best.
Just because something turns out to be a storm in a teacup, it doesn’t mean it doesn’t change your life. Of course, it does. There’s that proverbial line in the sand.
In the very tentative aftermath of that heartache, my brother-in-law advised me just to focus on what I could change about my life. I revisited the Serenity Prayer:
- God, grant me the serenity to accept the things I cannot change,
- The courage to change the things I can,
- And the wisdom to know the difference.
- Reinholdt Niebuhr
However, what can you change? What is so etched in stone or so immovable that nothing on this entire planet will make it budge?
As perhaps you can now appreciate, there was a lot of fine print and indeed a lot left out of the Serenity Prayer. I could actually change a lot more than I ever believed possible and I wasn’t etched in stone either. Through neuroplasticity, we are all able to rewire our brains…at least to some extent. However, even then we will ultimately reach the outer limits. There will ultimately has to be a full stop. At least, I think so.
What the serenity prayer fails to address and I feel this is the critical issue is: What or who changes us?
On my personal journey, our kids and my desire to be an active, loving, interactive part of their lives and not just a shadow or “asleep” has taken me so far beyond what I ever thought possible. This includes learning to play the violin and to ski, which really was against all odds. I would never have thought it possible. Yet, small step by small step, I achieved the impossible. I might not be playing my violin at the Sydney Opera House and you won’t see me skiing at the 2018 Winter Olympics in PyeongChang either but I am living my dreams. I write. I photograph. Read. Moreover, my son will tell you that I talk…a lot!!
In December 2013, that storm regarding the fibrosis in my lungs jumped out of the tea cup. The lightening flashed and how those grey clouds rumbled and I was looking pretty much fried.
Yet, as I said, my doctors are a step ahead and I had infusions of chemo and prednisone through Christmas and January last year and hey presto, I’m back in remission again. However, it’s been much, much harder to get my life back on track than after other flares as the effects of chemo brain have been quite severe. I also have hydrocephalus and perhaps that has magnified the effects but I’m still finding it difficult to multitask. I struggle to have any concept of time and am developing more and more infrastructure to manage the kids and their numerous activities and school stuff. This will supposedly improve and I know all about the power of changing those neuropathways. However, even though I have conquered so many hurdles, everything is so much easier in hindsight.
I soldier on! Carpe diem: seize the day although I have to admit that the black dog gets me now and then. I’m only human and at times I can feel like Atlas, carrying the world on my shoulders.
It is my hope that our journey will particularly encourage others who are living with adversity of whatever kind and although you might not be able to change the situation you are in, perhaps you can change the surroundings or just find better ways of dealing with your lot. Or, at least not feel alone.
Meanwhile, there are some other characters I would like to introduce.
Geoff and Bilbo out in the kayak at Palm Beach, Sydney 2014.
There’s my husband Geoff. He gets mentioned throughout the blog but without getting personal. It’s my blog…not his and the same goes for the kids. my business isn’t their business. Just because I’ve decided to put my innermost thoughts on the world wide web, it doesn’t mean they want to be a part of it. They are their own people. That said, I’ve put their photos on the blog and they love it!
Our son loves sailing and being out on the yacht 2014
Our Dancing Queen in 2011
We have two children. I simply refer to our kids as “Mr” and “Miss”. That’s what we usually call them at home and sort of conforms to family tradition. My grandparents’ cat was always called “Puss” despite living with a highly creative family. I like the simplicity. Mister is almost 11 and Miss almost 9.
We also have two much loved canine critters in residence.
Our Philosophical Dog walking along beside the tide. He doesn’t like getting wet paws.
Bilbo is an 8 year old Border Collie. He was an only dog who really hadn’t had a lot of interaction with other dogs aside from Alfie the Blue Heeler who used to live next door. I think it was actually Alfie who trained him to bark ferociously at the postman and more likely… people riding bicycles. Alfie almost combusted whenever a bike went past. Despite our intermittent efforts at exercise and diet reduction, Bilbo has remained very much all of his self. In the last 12 months, Bilbo has undergone his own personal development process and has gone from being the backyard wonder to sailing, kayaking and he even managed to get his paws wet and swim out to Mister on his kayak and climb on board. Well, actually he capsized the thing and boy and dog found themselves in the water. Funny to some but I still haven’t been forgiven for laughing.
Around September 2014, we welcomed our latest dog addition to the family. Lady is a mischievous two- year old Cavalier King Charles Spaniel x Border Collie. Her Dad was a ruby cavalier and her mum was the border collie so that’s a story in itself. Lady is almost pure black with the silky soft cavalier fur and floppy ears but has a patch of white fur on her chest and her black paws. She’s quite adept at getting lost in the dark when I go to put her to bed. Lady is also quite a food thief and has been found standing on our kitchen table eating our dinner. Well, that hasn’t happened since.
Lady at Sunset
I hope you enjoy Beyond the Flow!
Our family at Yoda celebrating my birthday in July, 2014
PS About Success: I made this comment about being focused on success on another blog and have stuck it here for later consideration:
Great tips but I have also experienced incredible growth by pursuing unexpected possibilities and opportunities which have included learning the violin and how to ski despite a severe medical condition. I would never have believed either of these paths were open to me but gave them ago due to family involvement and I’m so pleased I did. I could write all day every day but it’s also important to diversify and have intimate relationships in our lives and these by their very nature will, at least to some extent, derail us and indeed, they should. There is so much more to life than just the goal.