Chronic Illness and the Search for the Holy Grail.
There comes a point after many moons of doctors tests and a vague incurable, poorly understood diagnosis or six (often with word ‘syndrome’ attached) that we get the Big Dr Shrug (BDS). The BDS goes like this: well you are not dying, there is nothing seriously wrong, and nothing more I can do, um yeah, well good luck with that …. and then the shrug.
You are at metaphorical fork in the road – you can lie down and quit, or begin your personal quest for the holy grail of health. It’s easy to get started just google ‘heal yourself’ and you will get 39 million responses (I shit you not!).
The Legend of the Holy Grail
Legend has it the Holy Grail was used by Christ at the last super, and/or maybe to capture his blood at the crucifixion. Since then it has become a powerful metaphor for finding something hard to find, or for a personal spiritual quest. Even Indiana Jones is in on the action.
For us spoonies (people living with chronic illness) the Holy Grail has become a metaphor for that one magic thing that might finally fix us or at least make our life more bearable, more livable. The internet age with its 24/7 access to information has put so much pressure on us, there is so much to try. Diets, pills, exercises and increasingly odd and unlikely things such as splashing cold water on our faces, extreme juice fasts, coffee enemas, hanging upside down…. The list goes on … oh for about 39 million ideas.
What are we to do?
The horrible truth is – unlike Arthur and the knights of the round table who were young and fit on their gallant quest for the grail – we spoonies are usually going on our quest at our lowest ebb, with our least resources. Staring desperately at the dimmed screen of our ipad circa 3am between trips to the bathroom or pacing the house and garden watching others sleep. How then are we placed to make the best choice? We have reached the ‘try anything’ place, sometimes trying things we know are likely to be insane is better than doing nothing …. better than the misery of the status quo.
The Paradox – Keep fighting while giving up
Ask anyone who knows me and several people who don’t – I have taken my personal spiritual quest for the holy grail of healing (HGH) to crazy heights. I am doing a PhD in well-being in my 40s, I’ve started a blog on the topic, I have a diploma of Advanced Hypnotherapy. There are about 39 million other things I have invested time and money on in this journey (this time I am exaggerating but not by as much as you might think). Am I well? Upon my word, I am not. There I am trying to sound like one of Arthur’s own knights. The point is – I have taken the search for the HGH to possibly insane heights, it would be reasonable to say it IS actually my life. Immediate family and friends notwithstanding, there really is not much else to my life other than my desperate and often pointless quest for the HGH.
Would I recommend it? Upon my word, I would not (there I go again). I feel that maybe the best thing I could do would be to quit. To surrender. To come to terms with my lot as a person living with multiple chronic illnesses. This is a little of what I am trying to do (and currently failing) with the Chronic Pain Anonymous work.
I am not ready to give up this quest. I am not ready to face that this pain and suffering might be my lot in life, for the rest of my life.
There is a balance to be struck, a subtle sort of paradox that is difficult to explain.
Let me digress briefly (but importantly). If you change your attitude and behavior towards someone (for the better), often you’ll find a change in them (for the better). If you go into as a kind of pseudo manipulation of them it will fail. As in – if you are changing to MAKE them change – bad things will happen. If you go into it with genuine intention to change your attitude and behavior it is highly likely that both your relationship with them and their behavior will change. This subtle shift in intention is the bed rock of success.
Likewise if I pretend to surrender to my chronic illness, so that I might better be able to find my Holy Grail, failure is guaranteed. If I can find the sweet spot, where I surrender my attachment to the outcome of healing, yet still take actions on my search, still get my horse ready and head out into the night with my sword strapped to my chest. Maybe then I might actually have a fighting chance of finding my Grail, while staying sane for the journey.
Will you come with me my fellow Knights?
A quest needs a trusty side kick or two hundred. Who is going to join me in my non quest, quest? In my journey to surrender my attachment to the outcome (to healing) while still walking the miles needed?
What Next – How might I help you and me?
I’m not sure how I can help you with the surrender piece, maybe you will help me there.
However with the practicalities of the journey I am equipped to help you my friend, which is exactly what I plan to do. I will soon be starting a multi-part blog on science and the fundamentals of research methods, to help you unpick what you are reading in your own desperate search. To help you feel your way through 39 millions ideas and growing. Some of the things I will be covering include:
- The Scientific Method … what is it.
- The trauma a of a sample size of one (i.e. you)
- Spotting conflict and bias
- Accessing good information
- Dodgey dealings (funding, ethics etc)
- Much more I have not yet thought of but will I promise
For now all the best on your quest. I hope to meet you along the way, and that we can smile in recognition and support.
Yours as Ever,