An extremely rare case

Today was my post Op check-up. Dad drove me to Southampton Royal Hants with some kick ass tunes playing at my request. I needed the pick-me-up as I was feeling a little apprehensive as to what would be said.
As it turns out, given the circumstances it was all promising. My wounds were healing up very nicely if not more so he stated, having just undergone 2 invasive procedures in the same place.
He had a good old delve around inside my ear while my Dad looked on at the monitor screen. I wondered why he was looking a little peaky.
My consultant took away my stitches and then my dressing inside my ear where momentarily I was able to experience a huge pressure relief, only to have it almost immediately return after he threw some ointment back in the depths of where it cannot be reached.
And so my head still feels like it is under water. My voice is so loud that it hurts to speak as is my breathing. Every sound inside my body is reverberating against my ear drum and it makes me want to hide away.
On the whole he was very nice to me. He asked how I was sincerely and so I asked him if he had ever been under anesthetic because I was tired all the time. He nodded but I think he was telling porkies to make me feel better.......
Once he sorted me out he led me back to his consultancy room. twice he omitted that his colleague had made a 'big mistake' and 'a serious error'.
I'm not ready to tackle those legal consequences yet. My priority is get better, So I just said that the important thing we do is learn from them and left it at that.
He told me I was an extremely rare case, never have they seen someone like me before and what they did know they read only in text books. I always knew I was special!
I have been referred to his Physio's now and an appointment with the consultant again in 2 months time just to check up on the healing process.
Tonight I am at home. Tired. But that seems to be a reoccurring theme for me at the moment.
As well as my hearing, I find it hard to talk on one side of my mouth. I think all these new ways of adapting is exhausting in itself until I get used to things a little more. I keep forgetting that its not even been a week since my last surgery.
I told my consultant that it looked like I was finally having to make friends with patience. He smiled wryly.
However, he did shorten my rehabilitation from 9mths to 6. I give myself two.
Next time I see him I want to be able to give him my big smile and who knows, if I practice hard enough, I might even summon a wink!
On a serious note though, he gave me a prognosis of up to 2 years before I would resume any kind of normality. But he doesn't know me and its about time I discovered more about myself. I'm feeling positive that I can be full of surprises.

On another note. while I was in hospital today, my Mum was given a bag of oracles to draw out. She was obviously thinking of me at the time and the three oracles that she ended up drawing were so apt that I wanted to include the photo as a reminder.
I have also been re-visiting my Quirky Cow and Kiwi illustrations  this morning. A whole new storyboard is evolving. I can't help but think all this is leading me onto new beginnings that could help others. My Seashell is softly whispering. My task for now is to just listen.........Ironic given the topic of why this all started!

Not my Circus

As the saying goes. 'Not my Circus. Not my Monkeys'. I've found it easy to take heed of those words the past few days. It's not that I don't care, but rather I have more pressing issues to concern myself about.
I am still feeling spaced out, but then it's not even been a week since I was discharged. Poison is still streaming around my system. Drinking plenty of water helps to cleanse me.
I sense certain individuals around me not coping as well as perhaps they ought. Poor and silly calls of judgement are made, mostly over alcohol. Upsetting the apple cart has been a phrase used by more than one person today.
We are all guilty of getting caught up in the drama of it all at times. Situations can quickly escalate. But it takes the braver and stronger of people to stand up, stand back and just let the shit go.
Being at peace is far more important than being right. ALWAYS.

I am feeling apprehensive about my meeting with the consultant tomorrow. I guess I am anxious that he will take one look at me and say he 'fixed me' or that it didn't work, either way, I am left to my own devices.
I am however assured that I will be referred to his team of Physio's in due course.
Tomorrow is another day. I have solicitors to contact and up and coming rehabilitation dates to consider. And I am still so tired. So I shall continue resting, recuperating, writing and sketching and drinking water. I really hope to fit in a bowel movement by then too. It's been 5 days of not having one and I'm fit to burst.

Dream world

Yesterday was such a special day. An impromptu barbecue surrounded by close friends and family.
prepared and cooked by the Kiwi himself. If there is one thing that he is extremely good at and that's cooking food.
Cocooned in love I counted my blessings once again for such beautiful friends and family.
After the previous evening's challenges of meeting friends and neighbours in the village, I decided against submitting myself to more trauma that day by going to the Mayfest in our Cathedral City. It is not so much that the spirit is willing, but more the body is not yet ready.
I am unable to focus on more than one task at a time and every ounce of energy is used up during the task in hand. Even enjoying the simple pleasures of eating and chatting simultaneously is too much of an ordeal at the moment.
I try to keep to a routine, but this morning I slept in. Today is rest day from people.
I feel like I am in a continuous dreamlike world. detached from the real one. I fear I am missing out and yet, my creativity is bounding through like an endless river. I wish I had more energy to keep up with it.
Sleeping they say is good for healing though. Yesterday my Mum gave me a special gift, my Grandad's hanky with his initials in the corner. Last night, I placed it carefully on my bedside table and then on top, put my Granny's Seashell that I brought in from the garden earlier that day. It was only then did it dawn on me that this was the Seashell that was in my dream.
A closer connection to my grandparents.
My Grandad especially, held and loved me through my early years of life, he believed in me. He could see the strength that I had even as a little baby. I will draw upon his wisdom and his faith if mine ever waivers. His Hanky will be the reminder and combined with the energy of my Granny's Scottish stoic attitude, Heaven forbid if anyone gets in my way!
Lesson number seven. Always drink plenty of water. As I approached my bed, I was struck by crippling cramp in my feet. In all the business of the day, I had forgotten to drink enough water. It wasn't so bad that a pint of water couldn't rectify and soon after, I nodded soundly to sleep.

First outing

I was reminded today about an Organ recital in our village church this evening. So I thought perhaps this would be just the ticket to start facing up to the world. Up until tonight, I have only seen family, but living in a small community, word was getting around and I felt like the sooner I saw people with my new face, the sooner I and they could get used to it.
What took place wasn't ever anything I could have ever have imagined. And what took place was all in my head and heart and I am glad it is over.

The Church is very conveniently through my garden gate so I did not have to travel far. I felt safe and My other half walked me there. I stepped inside and then it began to hit my like a ton of bricks. I thought I was drowning. I couldn't adjust my ears and I felt and still do like I am under a bath of water. All the while, words kept repeating round my head, 'please don't pity me, please don't feel sorry for me'. I thought I was going to pass out.
I walked out and into the neighbour's garden for some fresh air where people were still having drinks.
Some were already aware of my recent situation others not so. 'Have you had some dental work done?' they would ask and so the abbreviated explanation would be thrust upon them.
Well meaning comments would come forth. 'I have a friend who had Bells Palsy and recovered' Bla bla bla.......
All the time I was trying to breathe. trying to stay conscious. But all the time my mind was screaming. I don't have Bells Palsy! They didn't have a routine operation by a trusted surgeon only to have them severe their main facial nerve. This was never supposed to happen! I look after my health. I value my body. I nodded and smiled as best I could instead.

It was the first time I have felt any kind of acknowledgement to my predicament. Why did this happen to me? And then the frightening realization that what if people do eventually get used to my face? I don't want to get used to it. I want it back the way it was and all the time I talk about it, the easier it is to be reminded of my old face and to glean hope that I will return. If I stop talking I might forget and I don't want that.
All this and yet I still hold no anger towards my original surgeon. I have no interest in striking him off or suing or whatever one is supposed to do in such highly emotionally charged occasions. If anything I believe he will be a better surgeon because of this. I chose to do this procedure with him because he had a nice smile, but now he has taken away my own and I'm not sure what I am supposed to do or feel about that tonight.
As I sat and listened to the Organ play, I allowed tears roll down my face. Music is so cathartic. I am not one to cry easily. But as I listened I imagined the vibrations of the music heal my grafted nerves.
I had a vision of my two Neurology consultants operating over my body, my head and neck twisted unnaturally in order for them to access the vital and necessary components. I feel violated and it dawns on me that am still carrying trauma that needs to be released. Bruises are coming out now. I am bruised and battered and I am so, so tired.
Tomorrow is another day. I am supposed to be heading into our Cathedral City for Mayfest. I am not sure if I have the energy, but I shall try. Facing the world one step at a time.

Home

I am finally home. This is me recuperating in the garden earlier! And yes I did get a bit warm, but initially I think my body was still in shock. I needed the warmth from the Sun and the grounding my lawn could give me.
Surgery went smoothly and to plan. I was a fascinating case said the consultants registrar this morning. I'm not sure they have seen the inside of an ear like mine before. The procedure was complicated and sensitive and took around 3 hours to complete.
So what I have had done now, is the original prosthetic bone from the first operation removed. There was no way on being able to salvage the severed nerve and keep my new hearing intact due to the abnormality of my inner ear structure. Unfortunately it was the new prosthetic put in place on Thursday that damaged the main facial nerve.
To help repair this nerve, I have had a nerve grafted from a smaller one linked to the earlobe. They took around a half of it (3cms) to bridge the gap. It means that I will lose feeling in my earlobe but I can live with that if it means I can blink and smile once more.
I was well looked after at Southampton hospital. When I saw my new consultant just before the op. I checked with him that he had a good lunch because I didn't want my procedure to be caffeine fueled alone. He laughed and also assured me that he had a good nights sleep too. Which made two of us. Surprisingly I have been sleeping well at home. Lesson Number six. Humor must be sought at all times and used whenever possible. It helps to break down barriers and brings about the human element. We are more than just a number on a piece of paper.
I came out of theater remembering a dream about walking around a big house on a pebbled beach. The last bit I recall was picking up a seashell and cupping it over my ear to listen to waves. Ironically it was the ear that I cannot hear from. There must be a metaphoric message in that vision somewhere I'm sure.

So now that I am home, the next few steps will be to rebuild my strength. Anesthetic twice in such quick succession really doesn't feel good to the system. But I know that with rest I will recover.
My ears feel like I have bath water sloshing around inside that I cannot get rid of. I have stitches on my neck and head and bruises are beginning to appear. My face feels swollen and my eye really stings. But on the whole, I am in no great pain which I am grateful for.
I was sharing the ward with some pretty poorly ladies. One of them is being discharged today, she had a panic attack last night. The nurse did her best to console her but as I was walking past I came and sat down on her bed next to her and just held her hand. I introduced myself and asked if she minded if I tapped her hand because I was an EFT practitioner. Within 5 minutes she was calm. We talked about her work, her pet rabbits and I told her that she was going to be ok. I think the nurse didn't quite know what to do so left us to it.
Some beautiful energies were exchanged in that ward that night and I had all the ladies thank me as I left for home this morning. But it was they who were also shining beacons and I told them so.
I very much hope that they all find the resolutions and resolve to heal so that they can continue to shine forth in the world.
It got me thinking about our individual journeys on earth and I have come to recognize ours are not to dim each others lights but rather our mission in life is to help each other to shine brighter than we can ever imagine.
I have so much more to write. But for now I am feeling tired. I sense myself riding a wave of love at the moment which I know is keeping me going, but I am also aware that like every wave it will need to reach the shore line eventually.
I will keep in mind that the landing will be gentle and I shall lie on the sand and quietly grieve for what was so that I can make space to move forwards. I will pick up that empty Seashell from my dream and listen to the wisdom it will have to offer. Clarity will come in its own good time.

Reflection

As I stood in front of my bathroom mirror tonight, for the first time in a long time, I actually looked, really looked at my reflection. I never appreciated how beautiful I am.
My complexion is rosy and clear, with a youthful glow. My eyes sparkle a blue grey as they light up with each and every passing thought. I have always considered my nose to be a bit fat and broken looking, now it just looks fat on one side as the other nostril has collapsed inwards.
My lips are thin and my teeth are certainly not even or straight, but at least for now I have them all and even with my face wonky and cock eyed, I still don't think I look at all bad for a woman approaching her middle years.
Ask anyone who knows me and they will tell you that vain was the last thing I would ever be, but tonight, in my bathroom, on the eve of my surgery day I wanted to remind myself that I am still beautiful, I miss my smile but I think I can still pull it off from a much deeper place. I hope others are able to see it too.
I received a phone call this evening from my original surgeon. he wanted to check how I was doing. I said I was ok. And actually I was. I have been surrounded my all my loved ones and even with hospital visits the past two days which are draining in themselves, I have been taking my advice, taking one step forwards at a time. For the first time since last Thursday, I feel like finally the anesthetic is wearing off, I even had a decent bowel movement which helped me feel considerably lighter in more ways than one! And so what I was telling him was the truth. He seemed surprised that I wasn't on any painkillers. Perhaps I am lucky, or I have a higher pain threshold, or maybe its being in the garden barefoot playing with my plants until it got too dark to see tonight. I have refueled with joy once more.
I have also had plenty of cuddles from all the dogs. They sense something isn't quite right, sniffing my ear, probing and clinging to me. I smile as best I can, hug and reassure them. things will be normal again once more very soon.
Tomorrow will bring another day and another challenge. This one will be big.  Truth be told, I am petrified to go under again so soon from the last, I have fears on what I will wake up to next.
I have two top surgeons taking the whole afternoon off just to focus on getting me fixed. I have not been given a timeline. Just that I will be complex even for them. I must trust that I am in expert hands who will do everything in their power to help me. It's a big ask after the last time.
There have been mutterings that I ought to seek compensation. I will be missing out on earnings through not being able to work and coupled with taking time off for rehabilitation and whatever else the next few months (I have been warned up to two years) may bring, I could be out of pocket for some time.
For now I want to focus on getting healed. I will continue to strive this journey with integrity, but I shall also be expecting others involved in my case to be accountable to every decision made that resulted into the situation that we are all now in. However, this can never just be about me. It is about every single patient after me and every thread that tangles around each and every person involved then and now.
Lives will and have been changed. We must all learn from this and be the better people for it, otherwise all of it will be a waste and I certainly did not agree to exist on this earth just for it all to be meaningless.

Post Surgery

This past week has been somewhat life changing for me. I am struggling to know where to start as tears are rolling down my face, but start I will because in doing so I hope that perhaps anyone reading this may draw strength from my own experience.

I was born with a congenital condition. you can read more about it here I survived it and more than that I learnt to thrive. Some of us back then didn’t, because like a lot of these things, other abnormalities and conditions became apparent. Some don’t even get discovered until much later on in life. But I was one of the lucky ones and defied the medical field which I hope to again given my current situation.

So fast forward 41 years, my deaf ear that I had since birth, that I have lived with, adapted to and come to accept as part of my identity, I chose to explore the possibilities of finding a way forward to being able to hear. I was informed that technology has progressed so much, that definitely something could be done. In fact in the end I was offered three options. Conventional Hearing aids, Bone Anchor hearing aids and most excitingly, a ‘Corrective procedure’ which entailed getting inside the inner ear and replacing or fixing any one of the tiny bones that wasn’t connecting so that I would finally be able to transfer sound directly through my inner ear.

I took months to think these options through and then when I was given the demonstration Bone Anchor kit to trial, for the first time in my 41 years I discovered what I had been missing all this time. My quality of life was transformed. I have written about that experience and will publish it in another post.

Basically after more soul searching I decided to go for the corrective procedure. I was assured that the risks were low and I was happy and comfortable with my consultant in charge. He had done thousands before and no such incidents had ever occurred. Unfortunately for us all, it turns out, my original CT scans were not studied in depth.

Lesson number one. Always trust your own instincts. I had a niggling doubt, I cannot explain why, but I was concerned about the risk to my nerves. Call it intuition. I brushed it aside because I wanted desperately for this to work and I did trust my surgeons judgement.

So surgery date was last Thursday. A last chat with my surgeon assuring me that he would look after me. He had a kind face. Always smiling, I got the impression during all my appointment visits leading up to that day that he was held in high regard by all his colleagues, from way up top, down to all the nurses and anaesthetists. Because I don’t hear very well, I learnt over the years to gather information in other ways. Through body language and to sense invisible threads that tie and tangle each and every one of us together. My sense felt comfortable.

The procedure took about 1.5 hours. I woke up from a dream where I was running through a beautiful meadow. And then I tried to smile but couldn’t. My surgeon approached me with a somewhat worried expression on his face. He told me that I needed to stay in overnight because he wanted to give me another CT scan and access my progress over the next few hours. I was a most peculiar case he said.

I still wasn’t that worried and I was wheeled off to the ward. The other ladies who had undergone similar procedures to me were throwing up and feeling pretty unwell. I had a silent chuckle to myself gloating at the fact that at least I wasn’t sick! I even got out my bed and remade it because my sheets were so twisted up, I accidentally pressed the emergency button, apologized and slinked back into bed before I caused anymore mishaps. I waved to the lady opposite once she recovered herself and then shortly after, I was wheeled back downstairs for the CT scan.

When I was told the news, I was more shocked by the reaction of the nurse who was with me than with my own predicament that I was suddenly faced with.

Lesson number two. Don’t allow other people’s own fears confuse your own because we all have our own realities according to our perceptions. Our experiences may look the same on the outside but they are not felt the same.

I learn later, that her 8yr old daughter had undergone minor surgery that sadly went wrong and at the age of 14, she is still in chronic pain. I explained the best I could that I wasn’t in pain and that I wasn’t scared and I would get through this. I tried to muster up a smile, but found out I still couldn’t. I hope that one day, that nurse will find some peace for the choices she made on behalf of her daughter.

So off I hopped back to the ward. I wasn’t expecting to stay overnight and I wasn’t prepared for PJ’s so I got dressed instead. I could see the lady opposite me was in a much fitter state and so we began chatting. Turns out her sister is also called Melissa. She had just had a lovely trip to Cornwall visiting all the gardens. We shared photos and stories and talked about community living. I hope that we can remain friends.

Later on, the hospital DJ came to see us and her name was also Melissa! I got very excited choosing my playlist and settled down to a good couple of hours jigging to some good tunes.

And then the late shift team came along. Another nurse came to check my blood pressure and told me her best friend was called Melissa. And here I was thinking my name was relatively uncommon!

Of course, day eventually turned to night and with it comes the dark. Along with the dark came the blackest of thoughts. All the ‘What ifs’ and the ‘Why me’s’.

Lesson number three. Don’t allow them to become part of you and takeover. Whenever a thought like that popped into my head, I would acknowledge it but then think of something I was grateful for. It wasn’t always easy but then focusing on the latter felt far more harmful and destructive. I knew that \I just could not afford to allow those thoughts destroy my inner peace.

I don’t know what helped me through that night, but some unknown force did and I am eternally grateful. I didn't sleep but I felt ok.

The next day after a catalyst of ministerial errors I finally get discharged. I was exhausted, emotionally and physically and I was just happy to get home. I had a good night sleep that night.

Today I was seen by two top surgeons specializing in ENT (ear nose and throat) and Neurology. Both my parents came with me and for that I am so grateful because what they had to say to me was hard hitting. Reading between the lines, Mistakes were made, big ones. He told me that had it been him taking on my case he would have been very cautious on taking on the risks, I referred him to my original scans asking if he was able to see any abnormalities from them. His silence spoke volumes. It took him a long time before he could look at me again and then his colleague came in where they discussed very long and in depth the kind of steps they could take to rectify the stuff up their other colleague made. They used big words, scary words, they consulted and discussed options in front of me and my parents.

Basically, as it stands, there is no other choice, than to go into an extremely sensitive area that is already scarred and is not the average ear that one would expect from an average healthy born adult and attempt to fix the damage that had been done last Thursday. Time is of the essence. I believe this is the right move to make for me, the alternative is that I will eventually succumb to muscle wastage in my face, I will not be able to blink and my smile will be a memory.

Lesson number four. Learn to keep moving forward. Whatever has been done, or said, rightly or wrongly, I have just got to take that step forward in the best most constructive way possible, otherwise it will slowly eat away and I will suffer more for it.

Lesson number five. I realise not everyone will agree and that’s ok, but for me, forgiveness is key. I have to forgive myself for my choices first and foremost. I am still on that journey.

It may be a long one and I will be a different person arriving the other end, but I am surrounded with so much love and support. I am scared, but that’s ok. I can also see this as an adventure. Adventures aren’t meant to be easy. They are soul searching, sometimes I am grappling in the dark, sometimes I am lifted so much in sheer unconditional love and sometimes I am humbled by the actions and words of kind strangers. But most of all I will try and embrace every moment, every challenge and treat this experience as one big lesson to a much grander more beautiful evolving picture.

There will be time to reflect. I cannot afford to add to the mess with blame. Healing is all I need right now and healing I will strive for until I am well again.