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.