PART ONE: REFLECTION
At times inspiration can fall like rain, at others the mental well is as dry as a sun scorched desert. The idea for this article has been rolling around for quite some time now but much like a Brexit game plan, my direction and execution has been sadly lacking. It was originally intended to be a short, succinct reflection on some of the obstacles I have encountered in the aftermath of my recovery from ME/CFS. "A What to Look Out For" guide if you will. Once I got started though, it began to morph into something more akin to an in-depth exploration, introspection and confession on how I re-built my life, revelled in the achievement and then looked on dumbfounded as it all proceeded to fall apart again.
No matter who you are, what you have achieved or how prepared you might be, trials and tribulations are never far from home. Life is unpredictable, full of hope and fear, peaks and troughs, gain and loss. It giveth and it taketh away. Beauty and tragedy forever locked together in an eternal struggle for supremacy. Therefore, although this was written through the prism of ME/CFS and the post recovery struggle, it soon became more a dissertation on disconnection and dysfunction, a musing on the effects of grief, loss, loneliness, anxiety and depression and how we might find our way back to reconnection and functional wellbeing.
It will be the only time in my life I am able to make the comparison, and trust me, it stills feels cheap but just like one of my literary icons, J.R.R. Tolkien and his seminal work, "The Lord of the Rings", this article was originally intended to be presented as one piece, however it soon became apparent that it would need to be broken down into a more manageable format, therefore I have produced my own epic trilogy, a story of a reluctant protagonist, insurmountable odds, danger at every turn, countless trials and 101 attempts to end the thing before you all scream in unison, "ENOUGH ALREADY!"
"I wish it need not have happened in my time," said Frodo.
"So do I," said Gandalf, "and so do all who live to see such times. But that is not for them to decide. All we have to decide is what to do with the time that is given us.” - "The Fellowship of the Ring" by J.R.R. Tolkien
I started the first draft of this article on the weekend of my 40th birthday. A landmark in anyone’s lives, a time for reflection, appraisal and perhaps even redirection. As I say goodbye to my 30’s it would be fair to say that it was quite the decade. Highs, lows, success, failure, victory, struggle, learning, unlearning, confusion and clarity. As I turned 30 I was on a career trajectory that I felt sure would be my chosen path for life, the seeds of a new relationship that would come to define my life were being sown and I was certain that I knew what the future held and how I would get there. As I reflect, an older, wiser, more humble human being, and project into the future I can accept that the only thing I know for sure these days, is that I know nothing at all.
Whilst that may appear quite a defeatist statement, it is anything but. It is not a way to approach life but the only way to approach life. Where I thought I would be, compared to where I actually am, is not at all in line with my expectation at age 30 and that’s ok. Mindfulness champions the beginners mind, approaching everything with the idea that there is always something new to learn, a different perspective to be entertained, another path to follow. The power of the growth mindset vs the fixed mindset as detailed by Caroline Dweck.
Like Colonel Hannibal Smith, the eternally wise and esteemed leader of that crack commando unit, The A-Team, I love a plan. In fact, I have built my life around them and I still do, to a certain extent. However, in reality, the most important part of any plan is incorporating the flexibility to adapt, improvise and overcome. I was once so dogmatic in my belief that a meticulously researched and constructed plan should be all you need, reciting the mantra, “If Plan A doesn’t work revert to Plan A”, that I blinded myself to the reality that this unpredictable beast called life is always, always capable of outsmarting and outmanoeuvring you at any time. No-one is capable of seeing all the angles and predicting all the possible outcomes or obstacles that may arise so there should be a modicum of humility incorporated into any plan. I learned this through bitter experience and in particular through my journey to recovery. Nowadays I am of the belief that one of the last and most important steps you should add to any process can be summarised in one word…..pivot. Think it, say it, scream it like a demented Ross Geller on speed! PIVOT!
It’s something I raise constantly with my coaching clients. Our approach is broken down into meta and micro goals. Identifying the overarching target, we then break it down into small, manageable steps, all the while being aware that at any time we may have to reassess and reset. Easier said than done perhaps and something I too have failed at more often than I have succeeded. I was quite easy on myself when taking my first tentative steps towards positive change and personal growth, and why shouldn’t I be back then when I knew no better? What I have been particularly poor at though, is accepting that no matter how much I think I have learned, no matter how much I think I have grown, no matter how much I think I should have evolved, I too, am still capable of losing sight of the bigger picture and letting life suck me into to its spiralling vortex of anxiety, fear and panic. I think I should know better and so I am brutally harsh on myself when I slip and, whisper it, behave like a perfectly, imperfect human being. Forgetting the most crucial lesson of all, we are none of us perfect and failure should always be seen as just another stepping stone towards success. Let me explain…
Recovery and Mistakes I Made in the Aftermath
Contracting ME/CFS at the age of 32 was certainly not part of the plan and recovering from it has been by far the hardest challenge I have ever faced. Having an illness that “officially” has no cure is an isolating, lonely and daunting experience. Recovery required a complete dissection of my belief system and my approach to life. In retrospect that may have been the easy part, once I accepted the changes that were required. What has proven to be particularly tricky is re-entering the world and detaching from the bias and apathy you face whilst ill.
What I did to recover is a long and arduous tale of experimentation, evaluation, persistence, perseverance and yes, multiple pivots. It is something which I have yet to write about in great detail, but it is something I discuss at length with clients as it fits that forum much better. In a nutshell though, I had to completely reject the traditional teaching we have all absorbed in relation to life, health and success and embrace a new, more radical, more scientifically proven approach to my mindset, my biology and my environment. You have to explore and release limiting beliefs and traumatic experiences, reset and restart your biological processes and get cold and clinical in creating an environment that supports and sustains your recovery. I did all this and prevailed. I believed my new approach to life would stand me in good stead for all of life’s future challenges and it did, for a time. What I failed to prepare for though was something that I already knew. That the subconscious is a fickle mistress and it is always looking for ways to protect us when life threatens to derail us.
What I unknowingly took with me was a new set of limiting beliefs and trauma that I had cultivated during my illness. The experience of being cut adrift by society, when the amount of money, time, commitment and value you can offer is reduced, is something that there is no way to prepare for. Especially if you have spent your life at the coalface, working hard, paying taxes, being there for others and trying to contribute as much as is physically possible. The feeling of isolation, of being surplus to requirements, of being deemed no longer worthy of time, effort or support is a bitter pill to swallow.
My experience of this came through ME/CFS but I have come to realise that this is the case for anyone who gets unscrupulously stricken by any traumatic experience that alters their life in unimaginable and uncontrollable ways, be it grief, loss, divorce, chronic illness, anxiety, depression, PTSD or even unemployment. In reality some of this is understandable as one of the most potent lessons I have learned is that until you have experienced something, you really have no idea what it is like to go through it. There is nothing more authentic and illuminating than the 'lived-in experience'. That is what truly opens our eyes to the human struggle, yet how many of us have been subjected to judgement and ridicule at the hands of someone who has no experience of what it is like to walk in our shoes? When a physiotherapist or HR professional is deemed capable of making a decision on whether someone suffering with such a complex and misunderstood illness as ME/CFS is ‘fit’ to work you know you are in trouble. It’s like asking Usain Bolt to coach a triathlete or Sir Alex Ferguson to coach a rugby team. Just because you have experience in a vaguely related field does not give you the insight required to make an in-depth evaluation of someone’s experience and so this is something you deal with, on top of the stress of actually being sick, on top of the financial stress that comes as part of the package, on top of the stress inherent when there is no timeline for recovery or indeed certainty that you will ever recover at all.
All of this you have to juggle while still trying to find a way through. When you realise that you have to embrace a completely new approach to life, what no-one really tells you or at least puts enough emphasis on is that when you do embrace these new approaches you are running the risk of isolating those closest to you. They want you to get better of course but they don’t want you to change. They want you to go back to who you used to be which is simply impossible, since being who you used to be is exactly what brought these trials to your doorstep to begin with, so that too becomes yet another Hail Mary into the unknown.
I persevered though. Thankfully stepping away from the status quo has never really been a problem for me so even though I did experience quite a bit of resistance initially, once I realised that there was no other way I put my head down and got on with the task of reading, researching, experimenting and believing that the path I was on would lead to the results I was hoping for, and it did, 6 long years later. The irony of course being, that had I known then what I know now, there may have been no need for such a protracted and stagnated experience.
Now admittedly there may be many sufferers of an ‘invisible illness’ out there who are not ready to hear about what to look out for post recovery but I feel that this can still be useful in helping identify ideas to incorporate into your recovery plan while for those on the other side, these are important markers for consideration as you move forward. In my experience once the idea of an seemingly impossible recovery starts to become a reality, everyone, especially you, will want to relax, inhale and bask in the glory, yet it is important to stay alert and on guard for any last role of the dice that your nemesis may throw…
Continued in Part Two...
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