What tone?

When there are so many views. so many fears, so much anguish, it is often hard to keep a lid on the frustrations. I am not suggesting that we should reciprocate with the same energy. Nor am I condemning those who do. But it is just as unhelpful when one reacts by attempting to moderate the perpetrator, or indeed condescend and belittle them. Here is my response to it all.

 What tone do I need to take when I talk about my real lived experience?

What tone would you like to hear when I need to express my grief and anguish for the atrocities committed against humanity?

What tone do I use to help you feel more comfortable so that you may hear my uncomfortable truths?

What tone will keep you feeling safe when I speak of the injustices of the world?

What tone can I use, for us to acknowledge that all the pain and the suffering never stemmed from a place of love, and to be so moved and incensed, we make it end.

Don't condone my tone, but hear my words instead.

Because if you truly listened, you would hear the passion,the conviction and the love I hold true and dear to my heart.

That. My dear. Is Love.

TOF awareness week

I want to write about a little known Congenital Condition called Tracheo-oesophageal fistula. TOF for short.
Around one in 3500 babies are born with the condition and in many cases, babies born with it can also feature a condition called Vacterl which is the acronym made up of the first letters of the 7 main clinical problems that make up the condition. You can find more information Here.

What authority do I have on the subjects? You may ask. Probably no more than anyone else who was born with these issues. And like any health condition, we all have the potential to experience them very differently.

I feel very fortunate in that as an adult, I have not experienced symptoms that have been detrimental to the quality of my life. I do still experience the very distinctive 'TOF Cough' after eating. I have to take my time to allow food to go down with the aid of water, otherwise it results in considerable discomfort and shortness of breath due to the constrictions from weak cartilage. Over-eating is a big no no, resulting in reflux but apart from those rare glutenous occasions, I rarely suffer from it. I also have bowel issues, in so far as that if I need to go. I have to GO! But this can be managed through diet. I guess I have experienced a few challenges and would like to share my story in the aim that it may help to reassure anyone else living with TOF and Vacterl into their more mature years.

I was born in June 1976. 2 weeks overdue. My mother was induced and I was forceps delivery at Winchester hospital. 45 years ago, very little was known about the condition, but they soon detected something was very wrong when I choked on the milk I was given. I was rushed to Southampton and I wasn't to leave until 6 months later. Maybe I could have left a lot earlier had I not contracted Salmonella from another sick baby brought into the same ward. As you can imagine, this did not help in my recovery.
I don't have any recollection of how ill I was, but what I do remember to this day, are memories of my NDE's (Near death experiences)
Perhaps this is where I am unusual. I do not take kindly to anyone giving me limitations on what I can achieve in life. Even as a very young child, I would defy the medical health professional's. For I have seen and experienced how expansive and powerful we can all be as individuals.
Somewhere along the line, many moons ago, we seem to have lost our sovereignty and handed over our autonomy to other people just because they have letters next to their names.
I remember being given the choice to live or die. I remember choosing life and I was immediately sucked back into my body.
Up until around the age of 9-10 I would struggle with numerous chest infections and Bronchitis.
I had a scan on my kidneys which determined that I had one much smaller than the other.
I have a noticeable wonky thumb that no kid would hold my hand because of it and I have a deaf ear and was always getting ear infections that made me completely deaf at times. I compensated through life by learning to read faces and lips. 

I believe I am here for a reason. Perhaps its to let anyone who is open-hearted and curious enough to read and hear my story, to take inspiration and to begin, if they haven't already, to unravel their own story and to explore and challenge their own beliefs and any limitations they may bring them.
I want to express how I appreciate the people in the medical field. For without science and research, I would not be here today. But equally, it is important to understand that they are still humans and like us all, biased through their own lenses. Mistakes happen because of it;
Notably three years ago, when I went for a routine operation to help improve my hearing. Vacterl has given me skeletal abnormalities. Scoliosis is one, a pair of extra thumbs are another.(Removed when I was 2 years old)
I have never had a full body scan other than an X-ray on my foot when I suddenly became unable to walk on it in my late twenties, where we found bones fused together. With practice and exercise, I retrained my feet and have not since had a problem. But there could be many more undiscovered malformations.
Another abnormality which I do now know, is in my ear. My main facial nerve is running completely in the wrong place to compensate for the inner ear deformity. Unfortunately it meant that my unprepared surgeon, severed the nerve resulting me to have facial palsy. Consequently I had emergency surgery a week later to have nerves grafted on and it took two years for me to regain movement. However, the end of last year, I experienced sudden paralysis again due to a condition called Bells Palsy, three months on, with perseverance and exercise, I am gradually regaining strength and movement once again.  
I want to be open with you all and say that this journey has not always been pain free, nor has it been easy and at times, I have felt scared. But like many of us living with challenges, we adapt, we learn and we forge on. I listen to my intuition. But a word of caution. We have to truly understand and know ourselves deeply. Sometimes, fear can masquerade as our intuition and fool us into believing that it is protecting us when all it is really doing, is preventing us to live our lives. There is a difference if you dig deep and listen carefully but only we can know for ourselves, no one else can tell you that.
For me, I see Intuition as a light guiding me the way. It can sound like a crystal clear voice that calls me out from the monkey brain chatter, and it can feel like a breath of fresh air that fills my stale lungs. This all takes practice and self-awareness. I am still learning, still evolving. I still get angry and frustrated and upset. People make life complicated. I can make life complicated! 
But Art and Creativity helps me process my thoughts and brings me clarity. I practice in Breath-work and meditation and I am trained in EFT (Emotional Freedom Tapping) and Matrix Re-imprinting, Reiki and Energy healing and I'm training as a Conscious Health Coach which supports the ethos in 7 steps, by taking ownership of our own health. Looking at how our perceptions got us to this point. Understanding what triggers us, learn to interpret what it means to us and then eventually to manage, understand and sustain our own health
As well as gardening, I run Art workshops to support people in realizing and reaching their own potential. Find what works for you. We are on this earth for such a short period of time. I wish I could show you what I could see (from my heart) all those years ago. How infinitely powerful we are. Don't give up.
For anyone still uncertain of my words, then ask yourself; What would be the consequences of living the most healthiest life you could possibly imagine. What could you achieve and what would that mean to you?

Cocooned in Grief

It feels like I have been under some kind of permanent cloud of late. I have moments of clarification before being plunged into a dense, heavy fog again.
The heaviness is down to having 4 family dogs dying in quick succession, a close friend die and  witnessing the deterioration of a dying member of the family.
My own dogs demise however, was inevitable and I was fortunate enough to have that time together where I was able to prepare myself, but nonetheless, when my last one died at age 15, two weeks ago, I wasn't quite prepared for the huge void that she has left behind. I hadn't realised I had pinned much of my identity on my Springer Spaniels, so when they went I was suddenly confronted with an identity crisis. Who am I without dogs? I am not a mother. I am not a wife or a homeowner. I don't even own a flash car. I have been unable to run my art workshops this last year. All the things we tend to hold on to, to help create a sense of who we are, no longer exist. To impound issues further, I have began my perimenopause journey. Although a perfectly normal process that happens, it does prompt further deep questions. Who can I become when options and opportunities are taken away either through natural progression or forcefully What does all this mean to me?

And so with this in mind an opening is created. My heart has been cracked wide open. At first I was exploring all the ways to fill the hole. Like getting another dog. Fostering kids, buying a camper-van. Buying land, blowing my savings to achieve that instant buzz. I have always been someone who can be spontaneous. Act now, think later. But I quickly realised that still in my grief, I became overwhelmed so any thoughts for a life changing decision has been put on the back burner. And besides. What if we limited ourselves from such distractions? What then? Who would be be? What would be become?

Life is full of uncertainties at the moment. In our search for meaning, a sense of control and an avoidance of death we have in effect put a hold on all our lives.
As I choose to allow the waves of my own grief to wash over me which by the way grab hold at the most unexpected and inappropriate of moments that force me to take a moment alone in my local town to weep for a couple of minutes, shocking onlookers at the rawness of my emotion;
But when I give myself permission to take those precious moments, I can keep the energy moving through, knowing that in just a couple of minutes I would be feeling right as rain and smiling again. If I hold onto the energy (Emotion = Energy in motion) because its not appropriate or the right time, it becomes stuck and as each stale emotion becomes more stagnant the harder it is for me to release.
So I have learned to embrace my emotions and to feel OK to be cocooned in grief.  For it is only when I re-emerge from each wave, a light is turned on, guiding me the way back to life. It is and always has been about the circle of life.
Nothing lasts forever and through art and literature, perhaps we can all start to become brave enough to face our own mortality. Because after all, to avoid death, is to avoid life itself.

I think this short video may help to verbalize my thoughts further.

Farewell

 

I can't say I wasnt pleased to see the back of last year. On top of the global event's I lost my eldest dog, my partners dog and a close friend from the village.
But saying my farewells to 2020 felt like I was leaving them all behind and it feels like the distance between us is growing further and further away. I have to remind myself, time and space is just an illusion, A human made construct. All there really was and is, is Love.........I miss their physical presence, but understanding that in the energy sense, they never truly went away, I am able to bring them near whenever I think of them.

I'm sure like many of us, we hold hopes for a brighter future and never has the beginning of a new year been given so much pressure to prove its worth  now.
I entered this year with trepidation. My expectations for life have been diminished greatly by current limitations. But that's ok. As I reflect on last year, I realised, despite everything, I was still able to meet some new and interesting people who have now become firm friends.
I experienced my first Sound bath and Demonstration. I had a great Birthday gathering that took form as an adventure treasure trail all in the great outdoors followed by an amazing vegetarian curry from all the veg grown in my garden. - I love how food brings people together.
I held an Art Exhibition open to the whole village in a neighbours beautiful garden with drinks and cake. What a stunning evening it was too! One couldn't have wished for a more quintessential Summers evening. And speaking of the village, I organised for our community to get together in the Autumn and help plant another thousand Daffodil bulbs around our Avenue of Remembrance. If there is one legacy I leave behind to be proud of, that will be it.
 I have been training as a Conscious Health Coach which will see me qualified in the Spring of this year. And before the year was almost out, I received a late request to take on a painted commission and finally, an exchange of emails between myself and the surgeon who severed my facial nerve that has given closure to the both of us.
All these achievements were through no control of mine other than the initial email I sent to the surgeon.
Simply by just 'Being', life was still able to unfold through surprising twists and turns and in many ways, perhaps even better than had I tried to influence and control things,
My biggest lesson last year was to truly understand how stress and beliefs around events has a detrimental affect on the body.
Although last year brought many gifts, I still had times of feeling angry and frustrated. I allowed them to seep into my core Most of the time, I was able to utilize the energy for the greater good. This is where creating art has always been my saviour. But after my friend died, suddenly I found myself at a complete loss, walking a terrain I had never walked on, alone and adrift. my motto had always been to face up to my fears, but in the face of adversity, I literally lost my face. At least half of it through paralysis and once more, I find myself in a position of relearning to use my muscles all over again.
This time, I will value my health and my body even more. 

I don't know what 2021 will bring, I dont know what I want to do or achieve. But what I do know is how I want to feel and that is down to me how I choose to respond to life. I do not give permission for any external source to influence my inner peace and joy. This is an ongoing lesson of course. But one I hope I am understanding the older I become. They do say, wisdom comes with age.....

Regeneration

Last month I received what felt like at the time a devastating blow to both my health and my self esteem.

I had been in a similar position two and a half years previously after waking up from surgery with Facial Palsy when my main facial nerve, technically known as the 7th Cranial Nerve that controls the face muscles and taste was accidentally severed. 
It had taken 2 years of physio exercises to regain control (though not fully) of the right side of my face, only for it to be all taken away from me within minutes.
Those minutes all took place on a weekday evening. 3 days prior, I had been experiencing a headache followed by intense earache. I put it down to an emotional few weeks and continued working.
But come one evening as I sat down about to eat my dinner, I suddenly realized I could no longer blink, quickly followed by a sensation of helplessness and panic, unable to move my face and the side of my mouth. In less than ten minutes, I was almost back to how I had been immediately after surgery, only this time the paralysis was accompanied by substantial pain, as if the whole of the side of my face had been punched and kicked and was coming out in a bruise. 
Sufficed to say, I couldn't eat my dinner that night and a phone call to see the doctor the very next morning led to a hospital visit to see my neurology consultant that afternoon.
After thorough examination, he diagnosed me with Bells Palsy symptoms. I was devastated.
Unlike last time. This time, even though I knew what to expect in the realms of how to recover and what to do, it has become even more pertinent how our lives, our communities and our society have changed.
 Last time, my strategies were to continue with the events I had planned that Summer. Like Morris Dancing, Singing, Camping, meeting friends. going to festivals and art shows. My resources were Physio sessions, Massage, Cranial Sacral treatment. EFT, hugs and my dogs.
This time round, everything I had available to me have gone. My dog, dancing, singing. Any social engagement. I can't even access the treatments that I would like to support me in my recovery. If I were to strictly adhere to the rules, even hugging would be off the  table. This time round, I am very much alone. Creating solutions to aid my healing process is much harder when the world I exist in with the people that inhabit it, are afraid to be near me, let alone touch me. When so many are under the illusion that we are doing our bit to protect one another. To save each other from a virus. I, like countless others are  not feeling saved or protected. We are left to struggle to find our own way with little resources to hand and little support. Emotionally and practically.
This is not the end of me though. Like a phoenix rising from the flames, rise I will, stronger than ever before. 
For the past few months, I have been training to be a Conscious Health Coach with Sam Thorpe This most recent experience has certainly highlighted and brought to my awareness the importance of maintaining balance at all levels of consciousness from Brainstem, Cerebelum and Cortex brain layers.
I am understanding even more that our body doesn't make mistakes, but rather, creates strategies and adaptations according to the meaning we give to our emotions and experiences we have throughout our lives. Every behaviour and every physical adaptation has a function and a purpose and that is to protect us and to evolve us. It is when they begin to cause us discomfort or they no longer serve us, that we may wish to be released from such limitations and this can be done by unraveling the many layers we form by our beliefs and perceptions that we learn from inheritence conditioning and experiences.

Right now, we live in uncertain times, but they are also exciting ones. And when I reach a level of peace through meditation, breathe work and in my creating space. I can let go of my frustrations, my anger and my heartache and I can become the person I came here to be and fulfill my life purpose. Who else is curious enough to join me on a journey of self discovery?
Like the three Wise men as told in the Nativity, if we can learn more about ourselves let go of judgement, perhaps we can all grow wiser and share our wealth of knowledge, gifts, skills and talents. How amazing would the world be?!

LIfe goes on

As we find ourselves in our second stint of lockdown in the UK. I have once again found myself battling with an array of mixed emotions. Just as I felt we were turning a corner on how we could choose to spend our time in various places with the people we enjoy spending time with, the government in its wisdom tell us to lockdown again. 

I am enraged. None of it makes any kind of sense. Any independent free thinking critical mind can see this. Following on from the rage, is confusion, surely if it worked last time, then why again? And if it didn't work last time, then why are we doing it again now?
But as I try to comprehend such measures, my heart is also aching. I lost a dear friend from my village. As I still grapple with the shock of such a loss because of course, this was the friend I confided in, the friend who listened to me without judgment, the friend I created mischief with. The friend who really 'saw me'. My problem solving brain tries to find solutions for the new terrain I am now walking on; Alone without her. My wing-man has gone and yet, if I still my mind for long enough, I feel her essence, memories are still fresh, I can hear her voice, her mischievous laugh and I ask her what she would do in these present times?
The answer lies in the phrase of 'Life is too short'. My friend had much to live for, but it was cut short. She didn't appreciate the last lockdown, choosing to live as hard as her weakening body allowed. We continued to hug, hold hands, cry, laugh, gossip and plan. Nothing could hold us back, not even the Government and it's rules. We didn't know how long we had. None of us do. I wonder if we all knew we would die tomorrow or next week, whether our decisions would be different?

As I tentatively begin to take small steps into my village and its community on my own, my first community engagement took place today. A fortnight before the threat of another lockdown was mentioned, I ordered 500 Daffodil bulbs to plant on the Avenue of Remembrance. The troops were gathered to help and a date was penciled in, then Lockdown happened. I was determined more than ever to get the task complete with or without the support. Spring Bulbs would not wait for anyone or any virus. And Lord knows, we all need a bit of a cheer come Springtime even if it comes in the form of bright yellow dancing daffodils.
Finally after initial resistance from individuals, I reaffirmed that under the Volunteer and Charitable sector, what we would be doing was not illegal. And even if it was, I had made my stance clear that I wasn't afraid to be arrested for the cause. I had the backing from many people and am pleased to say, we had around 25-30 people come and help. The sun was shining down on us and the banter flowed, just as it always does between fellow villagers. As I stood witnessing the comradeship, I felt blessed and lucky to be alive. My only disappointment being that on mentioning the possibility of going for a well deserved pint in the pub afterwards, I was swiftly reminded that all pubs were closed. Village pubs we miss you!

It's funny how the day in the life of a country village girl goes. On returning home, my next task was to finish off two paintings I created in honour of my friend. She loved Sunflowers and when she was alive, one of our greatest joys was to decorate the back of the Church for all the festivals.
We were living proof that Telepathy was real. The number of times we would both come up with a new creation on the same sleepless night and on comparing notes the next day, we discover they were almost identical. Every year we challenged ourselves to create more elaborate displays than the previous one.
This time, I have made an offering with the paintings and as I walked up to hang them in position I see that her grave has been dug, it brings it all back home, she's never coming back. From thinking about life and the future of newly planted bulbs we had just scattered, full of promised full of life itself and then I arrive in the lap of death in the same morning. A finality, a completion, the reaching of its full circle.
I am more determined than ever to make her legacy live on. Her legacy to me, being that every moment is worth fighting for, to remain independent, joyful and free.
She ran out of steam, but I will pick up where she left off. Life is precious, Lockdown or not, my drive to make every minute of everyday count will be my farewell gift to her. after all, None of us know when we may draw our last breath. 

Fear

 

You have only to look at my face to know that even the most highly trained and skilled expert in their field can get things wrong. My intuition warned me. Unfortunately, I didn’t take heed of the warning bells my body was giving me, opting to listen to my surgeon because naively I believed he knew better than me.

Fast forward to today, we have many experts all exclaiming to have the right answers, all armed with varying information contradicting one another.
Facts and figures muddy the waters and statistics are only relevant when the full context is understood. Context is a rare commodity these days. 

I’m not interested in what you perceive to be right or wrong. There is such a thing as information bias.
What I am interested in though, is what is driving your fear. Is it the fear of illness or dying? or the suffering or loss of our loved ones?
Could it be the fear of breaking the law or the disobedience of others around you?           
We all have our fears, all of them just as valid as the next persons.           

My fears are witnessing and experiencing the divisions these rules are creating. The polarity of sides, depending on the stance we take. I fear the name calling which only serve to create an even greater divide.
I fear the wall of masked faces when I go out.
As human beings, our brains subconsciously read facial expressions as social cues to carefully gauge how we proceed with one another, it only takes the most fleeting & subtlest of movements to determine how we choose to respond to someone which can lead to deeper connections. (Or not)
Interconnections keep us safe. I do not feel safe. Being hard of hearing only exasperates the situation. I cannot hear you and now I cannot see you.

I was born with a congenital condition, so I understand what it is to live with disabilities. Those who don’t know me, would never know I have battled with health conditions throughout my life. Most people living with disabilities, hidden or not, will tell you how we can adapt and overcome without the need to label ourselves. I fear that the current situation has forced us into a corner where we are made to label ourselves so that we may be accepted in society unmasked. 

I am afraid of the confrontation I have had to endure. The complete ignorance from even the most well-meaning of folk. To the ones who tell you that mask wearing ‘isn’t that difficult’…….And yet, for those living with conditions such as facial palsy like myself, where nerves have been damaged and features remain frozen in time and in some area’s even collapsed and at times painful, perhaps you might think twice too?

I am bereft of the loss and closure of institutions, charities and organisations within my community. The huge changes that have prohibited the most fundamental aspects of what brings a village together. Not even knowing when it will all end. Will it end? I am more scared of not knowing than the very thing that is preventing us from living fully and joyfully.               

I am not ready to die, but it feels like part of me already has. I am uncertain of how I may serve my community with the challenges we are facing. I am floundering. And as I walk around my village, I am reminded of all the things we achieved together. All the community initiatives and schemes I started or took part in, despite my alternative views that perhaps go against the mainstream narrative, I remind myself that even if I go against the grain, I am not a bad person.                

And speaking of dying matters, perhaps my differing ideas to life and death is due to the very reason that I have experienced death. NDE (Near Death Experience) is very real. It is the one thing I am not afraid of. I will go as far as saying it is easier than living, especially in today’s world.
And as it stands, today's society is increasingly becoming one that I feel like I do not belong in.      

Life however will go on. It is worth noting though, that we are so much more than the shell of our body that we inhabit and all the time I am in mine, I shall continue to live my life to the full, no one has permission to tell me how to live it. Please allow me to make my own risk assessments with my family and my friends. It is not my job on this earth to be responsible for your health, nor is it indeed yours to protect mine.
I made a vow to myself two years ago after surgery to always take heed of my intuition. It is my body after all. Only I know what is best for me, not anyone else.
Call me selfish. But I say being selfish is allowing people go hungry, dying alone, loss of income and homes, losing people through suicide due to such draconian restrictions, not being allowed to hug or even see our loved ones. Creating abhorrent situations that are committing people to mental institutions. Slowing down and even stopping the admissions of surgery that could ultimately lead to an early demise for some. Depending on your perspective on the world, selfish comes in many forms.

 I do not profess to have the answers and I do not proclaim to be right in my thinking, but once again, no one has permission to tell me that I am wrong when there is so much more at stake than losing lives just over Covid.

Finally, I close this post with the words of Ben Howard. 'The Fear' 

"I been worryin' that my time is a little unclear
I been worryin' that I'm losing the one's I hold dear
I been worryin' that we all live our lives in the confines of fear…"