Muddy Jukebox - February 2020
Lost On You
By LP
Foreword from Claire (C1) - CEO Muddy Care CIC
Niki is one of our participants on the Muddy Care rehabilitation programme. She told me to listen to this song before I read her words. Whilst writing the foreword for each person who participates in Muddy Jukebox, I always listen to their song as I am writing about them but I did listen to the song as instructed by Niki before I read her script. This song resonated with me straight away. I knew where she was writing from immediately and when I read her words my eyes became very blurry and this time it wasn’t because of my blepharitis 😊. Niki is currently climbing an enormous mountain as part of her present chronic condition journey never mind everything she has already been through in her past chronic illness journey, which is immense, making what she is saying even more profound, courageous and heartfelt.
The way Niki has verbalised her journey of bereavement and finally acceptance are some of the most profound, authentic, honest, brave and beautiful words I have ever read about this process. And it is the acknowledgement that we need to grieve the loss of us and that this process is so important in the journey towards acceptance that she has so eloquently and superbly described. Once we finally do complete the bereavement journey, the healing can finally begin and new beginnings can start.
Niki’s words tell how important it is to help ourselves move from that place of regret, denial, sorrow and blame (as is the journey of bereavement) to a place where we finally surrender and accept our situation and learn to build a new relationship with ourselves, a better healthier one, one that has empathy, compassion, where we live and just don’t exist and don’t just continually fight to survive the curve ball that knocked us well and truly to the ground and has kept knocking us down, for years, not just months. And that is where Muddy Care comes in. We help people with chronic conditions take that journey to a brighter place, a place of hope, where bravery and aspirations are celebrated, where wellness is looked at collectively, where compassion, empathy, laughter, kindness and care is weaved between and in everything we do. Remember physical wellness is only one aspect of the six facets of health and wellness. I remember Niki running up to me after our first session of surfing and placing her arms around me, crying, saying thank you and that this had been the first time she had felt alive in years, not months, years. Grieving really is a form of loss. We do loose ourselves along the way when we are continually fighting to exist but we can come back and live. And Niki is coming back to herself and living courageously.
Acceptance and finding a new path to follow in our lives, one we never dreamed we would have to follow, isn’t about the beginning of the end. It’s about the end of the beginning and once that beginning ends, when acceptance begins, things change. We start to look at things differently in a good way. The middle can begin. And the middle is so much better than the beginning. That doesn’t mean to say we won’t have bad days. Of course we will. But we will deal with those days better and differently. I see myself as very much Claire, Mark 2, the tortoise or turtle (I’m a water baby) but to get to that place I had to lay to rest the hare and that took about three to four years of fighting to survive and grieving and eventually concluded with my attending bereavement counselling, bereavement of losing me, Mark 1.
To all of you who are going through this process and to those who have reached the middle, listen to this song first and then read the amazing script that accompanies this song and listen to the song again. It is beautiful.
Well done and thank you so much participant Niki for writing this and being brave enough to be vulnerable. I think it will help so many
Lost On You
Jukebox 6 Commentary.
Written by Muddy Care Participant N
A reflection of living with disabling intractable neuropathic facial pain for 16 years.
While this song is overtly about a broken relationship, for me it has become a reflection on my relationship with pain, my body, my mind and the impacts on my life, both inner and outer.
The pain dominated my life throughout my thirties and early forties, forcing a very different and challenging life path to that which I had envisaged. Latterly new neuroscience and pain management techniques have allowed a vast reduction in suffering and pain levels so this song thus encompasses reflection, grief and celebration of what I have learned and the person I now am, and who I want to continue to evolve into. The song encourages me to explore grief, anger, learning, empathy, compassion and self discovery.
The most obvious layer is the expression of grief and regret...how much you have “lost” due to the disabling and all consuming nature of the pain. The surgeries, the drugs, the fear, the diminishment of life into a small, safe but unsafe, dark and silent world. Where life becomes about survival not hope, about hanging on not flying high. Losing out on living - quieter, smaller maybe, but needing far more courage to take steps that once where taken with ignorant, blasé ease.
The pain; and your body as extension, became loathed, became an enemy to be fought constantly, to be conquered. Life became a battle never won, but never surrendered. All you ever wanted was the pain to leave. You started to blame your body, your mind. Becoming entangled and constrained in regret, blame, denial and sorrow.
You would never reach heaven as you were undeserving, unworthy, broken and faulty. Heaven was unreachable because it was a pain free place you could never achieve. These became insidious, invidious, poisoned beliefs.
Expectations of what life ‘should’ have been became weapons that inflicted unbearable pain. You tried to help yourself but you were still entrapped in a never ending downward, declining spiral.
Until surrender arrived. You learnt and listened; you learned to love yourself as a complete entity and you taught yourself to start to build a whole new relationship with yourself as that complete, whole entity - mind - body - spirit.
So raise a glass to all that you think you have lost - do they matter? The might have beens? Cut them loose, fragments and figments of imaginings that they are. Learn to build a different life and living. Celebrate your experiences and make them worthwhile. Love yourself, love your life and take it somewhere useful and precious. There is value in everything. There is beauty and pain in everything.
Regret, grief, loss is all worthy of being felt, and indeed, you must do so. But learn from them, own them but let them help you move forward rather than hold you in place. Celebrate your real experiences not those you ‘think’ should have happened. Life is for living not dying in place. Pain is not the end, nor is it important. It is at times a chance at a new beginning, a chance to become a different, better person, a new direction as you learn how to sculpt a life worth living from the shattered remains of what once was. The newly crafted life is worthy of living, loving and cherishing in myriad ways.