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No. 1 -- The Beginning of a Journey
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It took me, spending over a quarter of my life, lying still and silent on a bed, to realise that I had built my entire existence around seeking other peoples love and approval.
When other people were growing into young adulthood, and finding out who they were, and what they liked, I was busy abandoning myself. Focusing my whole being on learning how to read rooms, please people and be whoever I needed to be, to feel safe. If they gave out medals for hyper-vigilance, I was winning olympic gold in every space.
There is a deep rolling grief within me. It speaks about the loss of my vivacious, energetic youth to the pain of being unworthy of love and friendship. I wonder what I could have been, had I got to concentrate on something other than wanting to survive. Seeking validation was all I knew. It consumed my life and drove my every move. Pleasing people was my career, and hobby, and I ended up breaking myself in different ways to do it.
On a cold February night in 2013, I was issued with an involuntary exile from life, and with it my ability to seek my self-worth from outside. It came in the form of a Valentines Day kiss, from a most dashingly attractive man called Michael. He was a model, and this was the kind of validation I believed could never be mine. It felt like a fairytale was unfolding before me, except it was actually a nightmare dressed in handsome 6 ft 3 package. Michael you see, had the Epstein Barr Virus, and very cordially shared it with me over a black and white film in a vintage cinema. Like a reverse sleeping beauty, Micheal put Emma Kitchen, as I knew her, to sleep for eternity.
My Severe Chronic Fatigue Syndrome diagnosis quickly followed, and for a people pleasing, validation seeker, this illness was the nemesis I hadn’t ever heard about. Of course I knew about the Yuppie Flu, it was nothing but hypercondra and laziness right, that’s what we were told. I had no idea about the reality of this condition. The truth of this monstrous, cruel, barbaric annialater of life. It literally sneaked in overnight, and left me mostly bed bound and needing full time care, something that hasn’t changed in the 13 years I had been ill.
The thing with an illness of this magnitude is, you can’t do a lot of anything when you are unable to speak, write, get to the toilet or even look at screens. Everything I had done to make me me, vanished. Everything I clung to for validation, approval and worth slipped from my fingers, including all of my friends.
I wailed against the depths of my suffering. I screamed in defiance at the injustice. I banged the floor with my fist and I begged God for salvation. None came. The suffering broke me open. It was so intense and unrelenting, year after year, that the strength to resist it finally left me. One spring morning, while staring out the window on to the garden, rather than fighting every momment of my experience in my mind, arguing with everything like it shouldn’t be happening, I opened to the experience of this moment exactly as it was. Without commentary or complaint, I allowed every pain, every discomfort, every terror, every loss, every sadness to just be there. I leaned into that moment with the greatest feeling of defeat, finally, giving up my fight to get well again. It felt like a part of me was dying in this relinquishment of the fight for my old life, but the most miraculous thing happened. Out of the surrender to this moment, came back an all encompassing feeling of love, joy and peace. It enveloped me, filled me, held me. I felt full of vitality, of life and freedom. I felt content and whole. I was full of love, not because of what I had done in my life, or what I looked like, but just because I was a child of creation.
My life changed in that one moment. I had very briefly walked through a doorway which taught me that the love I had been seeking all of my life wasn’t outside of me. It resided within. Jesus said “The Kingdom of Heaven is within you”, and in that brief moment of time I lived his words, and my life was saved.
I believe this is one of the hidden gifts of CFS. It hit me right where it hurt. It took away my ability, to do all the crazy shit I was doing, to feel okay in a world that terrified me. I found if you lie on a bed with no company for long enough, it is just a matter of time, before you are going to start to see your unhealthy attachments to life. Where you are clinging, where you are addicted and craving. With enough time and solitude the layers of self deception and wounding are going to start peeling away, and with severe CFS, there is no escape. What was keeping me from life was to be seen and the no escape bit, well I see was the most sacred part of all. It’s that bit, that stopped me hiding, from the truth that wanted to be seen.
For me it became glaringly obvious. I had not being experiencing true life. I had been living in a landscape of fear, punctuated with brief rest bites of approval and validation. I was well camouflaged in social situations, always in the middle of everything, and yet never feeling part of it. There was me, a wall of mental noise, and then life happening around me. I was a spectator of life.
I can see the beauty of CFS now. I can see the dance of life that came in and deconstructed my life in the most artful way. I can see the divinity of it. The perfection. I can see it needed to happen, there was no other way for me. I was totally lost to myself. I needed saving, and nobody could have reached me, because the extent of my sorrow was a stranger even to me.
In my old life it was my instinct to run from discomfort. To hide from suffering like it was wrong. Sadness and fear a sign I was doing life incorrectly somehow. Happiness being the marker of a good life, I pushed away and stuffed down everything that seemed to suggest otherwise.
The greatest surprise in all of this, was that the answer to my suffering lay right within my suffering. It turned out Rumi was right, the darkness was my candle, I just had to follow it. Inside the fear, and the devastation of a life lost to illness, came out a pathway to a higher state of conscious, and a happier life.
It’s my belief, that the ill ones, are on the precipice of divine instruction should they choose it. They are the wisdom keepers in our sick and wounded society. The ones called for greater things than the ordinary in this life. It is my understanding that illness is a pathway to God.
So yeah CFS, is a monstrous bitch of an illness, but she is my guru, my teacher and her lessons are immense. She brought to me to work of lying quietly. The work of deep surrender and the work of abiding in the space of not knowing, and the deepest work of all, solitude.
Her gifts are abundant and life giving, if she isn’t resisted. She opened a doorway for me to walk home. I am saved, because she has given me access to the truth of who I am, beyond my body. She has shown me the pathway to freedom from all suffering.
My work continues. Most days a deepening into the beauty and love of this moment. Somedays I get triggered, and it is like I am back to the start again, a wounded child desperate to be loved by anyone. Somedays I soak in a force of joy and vitality so powerful, I don’t know how I am holding it in my body. Other days the pain of my past rises from its depths, to be cradled and bathed, in the waters of my new conscious awareness.
It’s not about a journey of illness for me this CFS stuff, it’s about a journey of healing. Healing it turns out, isn’t about the body at all. The body and good health isn’t the vehicle for joy and liberation society told me it was.
My boyfriend often says, happiness is an inside job. He is right, it is all an inside job. Happiness and freedom, joy, love and vitality are held within me. They are the ground of my being, my birthright. The doorway of all of this it turns out, was siting in the middle the worst thing that could ever have happened to the old me, Severe Chronic Fatigue Syndrome.
I feel this right down to my bones. The most brutal, honest teacher there is, and every day I discover there's still more to learn. Here's to this wild, savage, beautiful journey. Thank you so much for sharing it. It helps us all to better find our way. x
This is true self-knowledge. Bravo for you!