It is the moment which changes your life. Sometimes it feels like it is the moment which ends it. The life you knew is gone, you are AD – After Diagnosis, your own new millennium.
Diagnosis can feel like your carefully planned and treasured life burning up around you. That you can see things changing, feel them shifting, but are helpless to stop it.
Diagnosis feels like a fire moving through our lives, consuming all we hold dear, burning our very selves, our image, who we are, and leaving us with little but pain and ash – where there used to be hopes, plans and a maybe not perfect, but truly real life.
Diagnosis can be a signpost on our healing journeys and I’d like address how to cope with, or without, a diagnosis, as well as how to let go of your diagnosis and stop being defined by it. This is about how to navigate your healing journey at whatever stage of the diagnosis you’re in. The diagnosis is just information, it’s not a sentence.
A diagnosis puts a name on your pain, but you can heal without one.
We get to blaze our own trail and write our own story.
Sometimes we are told that our diagnosis, our pain, our challenge can be for good, that we are an ‘inspiration’.
People around us can try to frame our pain and challenges in a positive light as it makes it easier for them to accept. It hurts when our loved ones are hurting. And we want to believe in the best for them.
But having these ideas forced upon us does nothing but cram us into stereotypical boxes – the ‘brave sufferer’, the ‘inspirational cripple’, the bad disabled person who doesn’t do anything to help others.
Selflessness and virtue are not implanted on the day they hand you your wheelchair.
I believe that incurable doesn’t rule out joy.
I believe that our bodies and minds are more powerful than we can even contemplate.
I believe that the world is waiting for us.
I believe that healing is always an option, that doctors are not God and that we can know our bodies.
I believe that there is a life waiting for us to step into it.
I believe that how things are is not how they have to stay.
I believe that trust is exactly what the planet needs right now.
I believe life can flow and my arms are open to that.
I believe that we need role models for sustainable wellness, not just miracle cure stories, so I became one.
I believe that with passion, pain cannot hold us back.
I believe that there is always a way.
I believe that living well is my happy ending.
I believe that I am staking my claim to freedom and I’m so blessed to have you alongside me.
I believe we can move through a life that leaps off the page in beautiful living colour, transforming challenges and living well, every-beautiful-day.
But at the beginning my diagnosis began to consume me. It was as though I wasn’t Grace anymore; merely a case study, a host for the pain ravaging my body, a curiosity and a walking, talking diagnosis. I felt like I was being subsumed in the medical system and was losing everything that made me, me. Are you still yourself when you don’t look or sound or feel like you? Are you still you when you can’t do the things you love? When you are told you may never be able to again? Do you know yourself when it doesn’t feel like your body, it’s not home anymore and you don’t recognise yourself in the mirror?
When we are newly diagnosed, it can feel like our lives are burning up around us. Everything we know is changing or gone. And it seems like everything we touch turns to ash. There’s nothing left anymore and no path on which to go forward.
I decided then, that if everything was burning up and I couldn’t stop it, maybe I still had a choice. Maybe I could allow the fires of diagnosis to be like phoenix fire – they were burning me up and the self I had known.
But like a Phoenix, I vowed that it would burn through and leave me better.
Maybe this could be an opportunity and a renewal. I could emerge strengthened from the fire, more burnished and beautiful because of it. That my hurting places would become stronger because of their cracks and I would arise, leaving everything I no longer needed in the ashes.
The fire eats us, consumes us and our hearts, and purifies us. We can let go and turn to ash or we can use the fire as transformation, to temper and refine us. We can emerge stronger, we can be reborn.
Your diagnosis does not define you. You are more than the label they gave you. Let’s discover the new you together.
Extract from The Phoenix Fire Academy by Grace Quantock