Let’s Talk Resilience

From time to time I’m aware that I go quiet on the blogs front - that’s usually because there’s a lot going on in my life and I literally can’t find the time to write - somewhat annoying for a writer I must say…

This time I’ve been quiet because I’ve been taking up beds in a variety of Sydney’s finest hospitals.  For those who are new here; I have two incurable and degenerative conditions which keep life interesting.  Firstly I have MS, I like to call it Choose Your Own Adventure because I’m not entirely ever sure what’s around the corner.  It’s quite helpful to be flexible, take initiative, learn how to problem solve on the fly and be spontaneous in these situations.  

The second condition I have is Psoriatic Arthritis.  I call this one The Gift That Keeps on Giving because boy does it give and give and give - everything you’ve never wanted.  With this one I find it helpful to whinge, get a bit sweary, have a pyjama day and then give myself a kick up the bum.

I developed MS and Psoriatic Arthritis about the same time in my late teens, although I didn’t know it at the time.  My mum (a nurse - hands up if your parent was/is a nurse, you’ll know what I mean) decided I was a hypochondriac and told me to suck it up.  So I sucked it up - especially after many, many doctors told me to suck it up too.  That’s another story - actually it is an entirely different story and you can read it in my first, award-winning book “Bugger Bugger Shit: my quest for resilience”.  It’s a great book, I can thoroughly recommend it.  It’s full of laugh-out-loud humour, snotty-tears sadness, red-hot fury and in places dripping in sarcasm.  If you like that kind of emotional roller-coaster go and grab it off Amazon or, as they say, from any good book retailer or your local library.  

PS when an author says go and buy the book, it’s not because we’re going to make any money, we just genuinely want people to love having books on their bookshelves and available to lend out to friends. 

A little bit of a medical re-run to get you up to date ready for this blog post on resilience.  In December 2019, I had a run-of-the-mill MS check up with my Neurologist.  He wasn’t worried about my MS but he was worried about the state of my cervical spine, which was looking decidedly unwell.  He immediately rang his neurosurgeon friend and sent my images over to him.  The next day, a Friday, I received a call from his rooms telling me I needed to come in on Monday.  They made an appointment for me at the end of the day.  I got a call back a few hours later to say the end of the day was too late, he wanted me in earlier.  Hands up all of those saying to themselves, that does not sound like a good thing?  Yeah me too.  

Off I trotted on the Monday morning to his rooms in the leafy northern suburbs of Sydney - not entirely sure how I was going to pay for my appointment because at the time, whilst being a highly qualified and experienced leader in my field, my field was the community services sector who get paid peanuts.  Anyway, that was a problem for another day.  After some polite hellos and social etiquette, he got down to the business of examining me and looking at my scans.  Hmmm, concerned face, hmmm interested vocalisations and then a pause, and an ummm with very much a question mark. “Did you know you have a brain tumour”?  “Oh yes” I replied, “all good I know all about that”.  His relief was palpable, he said he wasn’t entirely sure how to break it to me if I didn’t know, especially because I had come to him because of my cervical spine, not a brain tumour.  Don’t worry, it’s benign and not growing.

The end result of this first meeting with the man who was to become my very trusted neurosurgeon, was that I needed to have an immediate C5/6 Anterior Discectomy and Fusion (or ACDF as it’s known in the trade).  I asked if we could do it in January, given Christmas was two weeks away, I hadn’t finished the christmas shopping and work was always quiet in January.  He looked at me like I was nuts.  “No” was the definitive answer on that one, it was happening in exactly a week.  And it did. And of course, because Psoriatic Arthritis is the gift that keeps on giving, it kept on giving then too.  After the operation, first the anaesthetist and then my neurosurgeon came in to see me in the ICU.  The Anaesthetist took great delight in telling me the operation went well but they “found a bloody great piece of bone that shouldn’t have been there”, so that had to be removed first.  My surgeon was slightly more informative, he told me that I had OPLL (Occification of the Posterior Longitude Ligament).  He was quite surprised by that because apparently it’s most commonly found in elderly Japanese men - I am definitely not an elderly Japanese man.  

I checked with my Rheumatologist after the surgery whether the OPLL was due to the Psoriatic Arthritis.  She confirmed it was.  Just another little gift.  And people think MS is problematic - not if you have Psoriatic Arthritis too it isn’t!  During that operation, my neurosurgeon indicated that there were issues at C4/5 and C6/7 as well, and confirmed by my rheumatologist as being linked to the Psoriatic Arthritis.  I also have an MS lesion at C2/3 so all in all my cervical spine is a bit rubbish.  

My career now, having had to prematurely retire from full-time work as a psychologist in the community services (or for-purpose) sector, is as a writer, keynote speaker and trainer.  In order to work, I need my arms, hands and mouth.  The issues at C6/7 have, for a few years, quite significantly impacted my left arm and hand.  Last year it had become so problematic I decided I needed to go back to see my wonderful neurosurgeon.  Having a whole arm and hand not working well when you’re trying to write is quite annoying as it turns out.  We made a plan to operate, once I had upped my private health insurance tier to cover the operation - a 12 month wait.  Which is how I now find myself, almost exactly 7 years later, in one of Sydney’s newest surgical hospitals having just had my second ACDF - this time of my C6/7 joint.

There are quite a few things that can go wrong when someone is digging around in your cervical spine.  One of them is a negative impact on your vocal cords because the surgeon has to ease his way through them to get to the spine and unsurprisingly, it’s a complicated part of the body with quite a few nerves hiding around dark corners.  With this ACDF, there wasn’t an extra chunk of bone to contest with but there were some other tricky bits and I woke up with a very interesting voice, quite a lot of swearing from me because I have red hair and red heads are a law unto themselves when it comes to anaesthetic and pain relief - if you know you know!  It sounded to me like I was shouting quite loudly but in retrospect I probably wasn’t because, is it turns out after 48 hours in ICU, an additional CT scan and a delicate endoscopic camera shoved indelicately up my nose and down my throat, I have in fact developed a paralysed vocal cord.  

I did know it was a risk before I underwent the procedure but didn’t really give it a second thought. After all, when you can’t lift your arm above your head, that’s what you’re focussing on, not the slight possibility of a paralysed vocal cord.  So here I am, a writer with a now functional hand and arm and a public speaker with a paralysed vocal cord.  Clearly I’m destined to always finely balance two things at once.  Fortunately the paralysed vocal cord is likely to unparalyse itself spontaneously.  Some, mainly my family, may say the paralysis will be warmly welcomed.  If it doesn’t unparalyse itself, there are other things that can be done - most likely by dramatically shoving something long up my nose and down my throat but for now it’s a wait and see for the next couple of months.

So where does this thing called resilience come into this I hear you ask?  So far this blog’s just been one medical disaster after another.  Being resilient isn’t the key to having a charmed life.  Being resilient isn’t lying on some tropical island with a swim-up bar and multi-coloured cocktail umbrellas.  Being resilient is the storm jacket you put on when the hurricane is blowing in and the deck chairs are flying precariously overhead.  And you better believe it, when the storm rolls in you need to be prepared.

I’m two days into being diagnosed with a paralysed vocal cord and a full calendar of events in November is looming.  So what did I spend yesterday doing as soon as I got back down to the ward?  Did I wail? No.  Did I get all cross with my neurosurgeon? No.  Did I put my head under the sheet? No.  I problem-solved.  I went online to look at lapel mics and amplifiers and messaged a friend who knows about these things for his advice.  Then I thought about my sessions which do have a tendency to be highly interactive, with quite a lot of noise, discussion and general rowdyness.  How on earth am I going to control the rooms of people if I can’t yell over them with instructions?  Then I had a genius idea.  Clown. Car. Horn.  I told a friend.  She asked if I was serious.  I said of course I am.  Be prepared.  

My neurosurgeon came to see me in the ward.  He is genuinely one of the loveliest and kindest doctors you could meet.  He was clearly concerned for me because he knows what I do, but he was also positive, pragmatic and came with multiple medical interventions and suggestions.  Just what I needed.  I told him I was going to invest in a clown car horn.  I’m not sure he believed me.  

So how does a person go from being given what is, in reality, a pretty crappy diagnosis, to looking at clown car horns?  Denial? Absolutely not.  Resilience.

I talk about the science of resilience a lot in Bugger Bugger Shit: my quest for resilience, so I’m not going to go there now.  What I do want to do though is provide you with a really simple piece of information and homework to do, if you’re so inclined.  I won’t be giving you a submission date and marking it though.  

Years ago I was trying to describe resilience to a group of parents.  Without missing a beat, I said it was like a bicycle wheel.  

Bear with me I’m still learning how to use AI to create things - let’s say I have definitely not been a pioneer when it comes to AI, my feet are still frozen in Antarctica, but let’s give it a go Chatty.  Ok two hours later and I have some illustrations for you and a whole lot of “ooh that was fancy” for me, you’ll notice that on one of the circles below I have “solution focussed” 🤔

This is my resilience wheel:

None of us arrive in this world resilient.  We are all born completely helpless and reliant upon others.  In fact one of my favourite quotes is by Donald Winnicott (1960); “There is no such thing as a baby.  There is only a baby and”.  At some point, in order to survive in this world, we have to become resilient.  

Among many other elements, there are three key things we can actively focus on which will help us to grow and build our own resilience.  The people who are important to us, things we’re good at and things we love to do.  Each element has a specific purpose.  

You’ll notice on my resilience wheel, the important people in my life are labelled in blue.  These are the people who challenge me, care for me, cheer me on, comfort me, laugh with me.  We can’t do life by ourselves.  You’ll notice that I have different groups of friends, different family members and my high school English teacher - she has been my main cheerleader since I was about 12 years old.  She still is, we all need at least one committed cheerleader.  

You will also see I have some things that I’m good at in red.  The things that we are good at make us feel competent.  We can achieve things and when we achieve one thing it increases our confidence that we can achieve more things.  When we are infants and toddlers, the people who are important to us, help us achieve things and become competent, like crawling, talking, learning our letters and numbers.  The same applies to us as adults.  Being good at things means we are given positive reinforcement both externally and internally and it drives us to continue to achieve.  

In green you will see things that I love to do.  These are things that simply fill my cup, help me calm, self-regulate, bring joy and peace to my world.  These are the things we need to focus on when we’re stressed out, dealing with complexities and generally having a hard time.  This week, it won’t surprise you to know that I’ve spent a lot of time texting with friends, an hour on a video call with one of my closest lifelong friends and 4 hours sitting with one of my closest adult friends having cups of tea in the hospital.

With the upheavals of life and simply with our own aging and growth, our wheels change over time.

My parents and grandparents have all died now so I have some gaps.  You’ll also see that one of my green circles “movies” has disappeared too.  I really like going to see a movie but I don’t think I’ve seen one, except on airplanes all year, so there’s a gap there too.  I’ve also removed “travel” just as an example.  I love to travel but it’s only since I’ve not been working full-time that I’ve been able to.  Many of us love to do things that we simply don’t have the time or the finances to participate in.

Thinking about our resilience wheel as a bicycle, if we removed some of the spokes like this one above, what would happen?  Well it’d be a bit uncomfortable and wobbly.  If I went over a rock, my bottom probably wouldn’t appreciate it but ultimately I’d probably still stay upright because I have so many other spokes on my wheel which give the wheel integrity under stress.  

Imagine though what it would look like, if I was an only child, I didn’t have an English teacher cheering me on, I didn’t have many friends and I was rubbish at writing?  What if I didn’t have the NDIS so I couldn’t access good allied health care or massages and I wasn’t really into music?  All of those spokes would be gone and put any amount of pressure on that wheel or ride over the tiniest of rocks and it would flatten in an instant.

We also need to check the integrity of the tyres before we get on our bikes.  Quite often, they need a bit of a pump up.

If we look at this diagram, you will see there are some wobbly circles.  For me, these mostly come with the people who are important to me because many live overseas so the integrity of the relationship is a bit compromised.  They’re a bit flat.  I need to purposely make sure I pump up the tyres so that they help smooth out the road given there are some spokes missing.  When I ensure I put time and effort into nurturing those relationships, they are effectively building my resilience.  

Notice I am the one who has the responsibility for putting the air into the tyre.  I have to notice that relationships, or things I’m good at or things I love to do need attention.  When I do that effectively, they compensate for the spokes that are missing and I get smooth ride again, irrespective of the fact that people who are important to me have died or if I can’t get to the movies or travel as much as I would like.

This is an exercise we can all do to check in on our resilience.  How many spokes are on your wheels?  How pumped up are the tyres?  What are the areas that are missing?  Do you need to purposely focus on things that you love to do or are good at?  Do you have different groups of friends or simply a number of good friends you can rely on, who can speak wisdom into your life, challenge you, love you, laugh with you?

Then I want you to think about your children’s resilience wheels, or do this exercise with them if they’re old enough.  Find out what’s missing and then take some decisive actions to add to their wheels.  Even though my resilience wheel is pretty full, there are always things I can do to improve it.

Resilience is a choice, it’s a decision, it’s a commitment.  It’s not something we can be passive about. It’s like every other muscle in our body. It has to be worked, and trained and toned so that when we need to call upon it, it’s ready in an instant.   And yes, often, too often, it’s hard work, but where would we be without it?  We’d be on that tropical island being hurled around in the air with the hurricane and deck chairs.  I know where I want to be, what about you?

So yesterday, when I was told I had a paralysed vocal cord, I put my wheel into action.  I focussed on finding solutions, I checked in with friends and loved ones, without blinking I went with my optimism and humour. I’ve written about it and I’ve spent time looking out of the window of my hospital room at the stunning Australian bush around me. Ok, I may also have done a little bit of online shopping and next week, once I’m discharged, I’ll go and have a massage and leave it all on the massage table.  

Is it what I expected?  Not at all.  Is it what I wanted?  Not really.  Is it going to throw me off track?  Never.

As always, comment below and share on your own socials.  You never know who might need to read this right now.

Take Care

Angharad

(in a slightly husky, yet chipmunk-like voice)