Monday, 24 June 2019

What Animal Is This?

Brothers. Where do I start? All siblings are immensely annoying but being the youngest, and a female in the dominance of two overprotective males, I am always in line to be first to torment. I have a exceedingly close relationship now with my brothers and have enjoyed the transition from sibling to close friend. However for them I cannot imagine the turmoil they faced against my amnesia, nineteen years of our bond evaporated in a second. 
An image of us from 2013
Perhaps this was worse in Eddie’s case. He had the fortune of studying abroad in Boston, America and was due to graduate in May 2016. A strenuous three months for him to wait and understand the real damage caused. 

Upon leaving the hospital and establishing my reality or more matter of fact ‘normality’, Eddie and I would be in constant communication every day. Perhaps because he was so far away I felt closer to him as I could confide in him without second questioning his response. A text message can convey so many different meanings that I only chose to see the response I desired. Each morning I would awake with a different animal images with the question simple question ‘tell me, what animal is this?’ Although my speech and cerebrum wasn’t totally intact, Eddie forgot I wasn’t incapable of seeking out the answer from other places that did not consist of my own brain. Nevertheless I provided him with an answer each time. I understand that in his outlook it must have been difficult to comprehend. I still looked and sounded like his little sister. So how and why had this happened?
Christmas Eve 2016
Meeting Eddie was a little perturbing, you create your own image of someone over social technology then the actuality of that person is completely different. Physically and emotionally Eddie was different, however characteristically he was completely the same. I was comfortable in his presence, more so than anybody else from my past I had been. This could be due to the change in environment that unsettled us both; there were no familiarities other than mum and dad, or it could be down to the fact we were in America and the focus was primarily based on Eddie and his graduation. Even to him, we had ‘the same’ relationship, he expressed to my mum how wonted I seemed. It wasn’t until I was hysterical over a squirrel and wouldn’t be consoled or alone with him that my reality struck him. In order to earn my trust and teach me new things he had to rebuild the foundation of our relationship. Our trip to America should have been a pleasurable trip where we recognized and glorified Eddie’s achievements but to us it was a significant event that perhaps took place to soon. I wish I could have allowed Eddie the attention he so rightly deserved but will be forever thankful that he didn’t mind that at times it was reverted back to me. Our relationship now is more vigorous than ever before.

Myself & Charlie
With Charlie it was slightly different. He is so placid and inwardly conceals his emotions. He is the eldest and most private of us all. I truly believe that the eldest child takes on the mass responsibility of their siblings and with Charlie having two children of his own he also experienced and empathized to what our parents were going through. The day I asked him to ‘reintroduce me to his family when he had the time’ was the same day all these traits perished for a brief second. He held back the tears he so rightly wanted to shed and withdrew himself from me completely. Our relationship took time. Not because of any fault of our own but because I believe it was more difficult for Charlie to come to terms with what had happened. He from my point of view suffered the most out of my entire immediate family. If you look at photos of us as juveniles, I am constantly in his presence showing some array of affection towards him. A six-year age gap gives him the right to not only be my brother but also a mentor. The aperture between us means that he is constantly in a different stage of life to me and as you get older, your responsibilities change. Our relationship took longer because we were robbed of the time we got to spend together independently. But through his own family I have been given the gift of reliving how we would have been by seeing him with his children and wife. I adore Charlie and look forward to watching him and his family grow and being able to be a part of this. 
Eddie, Myself and Charlie
My brothers are my confidantes and have shown me that however hard life can be they will always be there for me and I for them.  I look forward to embracing the next chapter in our lives together. 

‘Brothers and sister, together as friends, ready to face whatever life sends. Joy and laughter or tears and strife. Holding hands tightly as we dance together through life
                                                                                                                       -Suzie Huiit  🖤

Sunday, 3 March 2019

An Honest Account

Today, 3rd March 2019 is just an ordinary day for many people. But for me this has been a distinguishable date of anticipation over the last couple of years. So much so I have made a point of over indulging in pleasurable activities on this particular weekend. This time last year, I was on the slopes tackling my first ever (after memory loss) ski lesson - in the words of my dad ‘it was like a duck taking to water’. This time two years ago, I was filled with anxiety prepping for a masquerade charity ball (blog to follow!) I had organised in order to raise funds for The Brain & Spine foundation. And this time three years ago, well this was the inevitable. The day I stopped living...

Let’s rewind back to that day three years ago so I can somewhat explain where this story began. For me this is a difficult blog to post, not only due to the emotional turmoil it causes but also because I try my best to be honest with anybody reading this. I must admit I have self-diagnosed myself with PTSD meaning my memory recall may not be veracious. And I can only apologise for this. But as you read this recollection of events, I want you not to question everything I am saying but to question what you would have said, dealt and felt, if you were in my position...
It is funny isn’t it, how scientist believes there is only a three-step process to the memory. Yet one traumatic event can do so much unexplainable damage.

The 3rd March 2016:
An average day, combined with the typical commute into London Holborn from Billericay, Essex. Bish was due to have the day off work, as he needed a recovery day from the ski trip he had just returned from. There was nothing ominous about that Thursday. But fate apparently lay on my side that day and Bish was required in the office. At 7.18 we boarded our first train into London Liverpool Street; other than the normal grouchiness of the early morning, everything appeared to be conventional. At 8.05 we departed on the central line toward Holborn. Somewhere during the 7-minute journey, one (or more) abnormal electrical signals occurred in the temporal or frontal lobe of my brain. Unaware and unsure of the signs and symptoms Bish held me up on the packed out rush of the tube. Still to this day we have no answer as to why this occurred or if it was a generalised or focal seizure.
Bish got me to our office and appropriately phoned through to my parents. At this time we were oblivious to the gravity of the situation. 
Now, this is where I cannot lie to you, I am/have dissociated to the hours that follow. I know from evidential fact that my mum and dad arrived mid morning and immediately took control of the situation as they realised the severity of the seizure aftermath. They directed a cab straight to Queen’s Square hospital (at the time I was an outpatient) to only be sent away as their policy is ‘appointment only.’ On the cab journey I remember looking out the window, unbeknown to me I was looking directly at my reflection, this had no association to me nor did it bring me any comfort. I coward away from the world and away from my parents. The people that so wanted to help and protect me yet I was so fearful of them. I remember no dialog in the cab other than my mum’ reassuring words and attempts at showing me images of us together. I remember showing apathetic behaviour. I was truly lost. 

The Hospital Part One: 3rd March 2016
After the clear rejection from Queens Square, my mum took the decision to take me to St Thomas’s (I was one a paediatric outpatient here) the following questions by a neurologist are all that I recollect:
What is the date? I am unable to give an answer.
What is the day? I am unable to give an answer.
Who runs our country? I am unable to give an answer.
What year was World War 2? I am unable to give an answer.
Where are you? St Thomas’s. (My mum directed that I had already been advised where I was multiple times) At least my short-term memory was still intact!
Because there was no obvious sign of injury and there was no swelling nor impact to the brain, I was sent home the exact same day with the reliable statement that this is not unusual after a seizure and a sleep should relax the brain and repair and reverse any damage done. 

The Hospital Part 2: 8th March - 13th March 2016
Must admit the EEG isn't the
most flattering.
No veins left in my arm so they revert
to much more uncomfy places.
Again dissociation plays a key role from the 4th-7th March 2016. These days just seem to blur into one. Bish was with me on the Friday whilst my parents grafted hard to get an immediate appointment with my neurologist to seek urgent care. Their efforts came through as after a screaming match with an epilepsy nurse (whom didn’t recognise the extremity of my situation) on Tuesday 8th March (5 days after the incident) I was admitted with exigency to Queen’s Square hospital neurology ward and attached to 20+ small electrodes and one camera monitor for the duration of six days. Whilst here, I underwent psychiatric and psychological evaluations that came through with results of normal practise. 
Understandably a doctor’s work is based on investigation and evidence rather than circumstantial. And because no hard evidence occurred within the time on the ward, I was sent away with a follow up appointment of four months with the promise that the memory would return in this duration. 

The weeks to follow:
With very little contact with my neurologist and withdrawal symptoms from my anti-convulsion meds I began to question everything. Was I crazy? Why couldn’t I remember? What should I do now? How am I meant to cope?
Undoubtedly I was to fall into a cycle of minor depression. A life I had once lived had now been deleted, as quickly as we erase a message or image from our phones. 
My job informed my parents they did not want me back, my family and friends struggled to cope with dealing with the diagnosis, (and rightly so) and my health was deteriorating both mental state and seizure wise. (Blog post to follow how I ripped out of the self-pity cycle) 
What I failed to grasp the context of was that the clock continues to tick even when we take the batteries out.

The weeks/months/year went by and I was no closer to getting any answers. I cannot fault our NHS system, however I do believe they let me down immensely. Along with a lot of other people. However with these weaknesses and rejections I wouldn’t have come to realise my own strength. 

I would be interested to know how others would have dealt in this situation. I have held back on details of how utterly scared, demonised, worried, angry and anxious I was because I feel this cannot be portrayed correctly across my writing. The experience was not one that can be expressed through communication, only through emotion and feeling. I hope that as you read this you can try to understand. 

Present day: 3rd March 2019

I now choose not to let that day define me. It happened and I recognise that, but I cannot change past events nor can I future. I can just learn from them. I hope this is conveyed in my character. Like you, I have decided that the 3rd of March is just like any other day for me now; neither significance nor anniversary needs to be dwelled on.

Sunday, 24 February 2019

The True Meaning of Friendship

Where would we be without our wonderful friends? The people who weren’t born to be a blood relation but are destined to be our family by coincidence and choice. 

‘My friends are like fairytales, they’ve been there since once upon a time and will be there until forever after’ 

In this particular blog post, I want to introduce you to some of my friends that I met in the first and second week of my diagnosis. I am blessed to have all of the friends that I do and will be forever grateful that they were willing to take the time the befriend me once again.

Evie, the first friend I shed real tears with. The friend my parents turned to without question. She took the world that was beating down on my shoulders and placed it on hers. My pain was her pain and my sorrow was her sorrow. I have never met anybody else quite like Evie but you can only live a life without Evie if you haven’t lived with her before. The 7th March 2016 she walked into my life (for the second time for her!) and I have never let her go since. She was there with me at my most vulnerable and no judgements passed. 
Her name in Greek means:
Greek meaning if Evangeline: ‘Good News/ Bringer of good news’ 
For me, this is true. Evie delivered the words of ‘It will all eventually be ok, you just wait.’ Back then even she did not know how literal this sentence would be. 
She bought me into the 21st century with the likes of ‘ok’ and ‘hello’ magazine and released the inner Kardashian hidden inside me. She also took it upon herself to drop in my favourite DVD’s earning the well deserved title of ‘EvieFlix.’ She is my shoulder to cry on, my hope when there is none and my true friend for life. 

Sophie, Jamie and I
Jamie. My 6ft giant who has a pink heart. The redness is made up of love, friendship, power and strength and the white represents his innocence and caring nature. He educated me on how to cachinnate and I haven’t stopped since. It is true, when people say that the naturalist form of medication is laughter and with Jamie I get this for free. Only he could play the song ‘I woke up with amnesia’ (5 seconds of summer) on repeat and get a laugh from me. 
I would be without phone/laptop and social media had it not been for his tech savvy skills and patience in teaching me the the use of each gadget I possess. 
He is altruistic and kind and the world needs more people like him. 
Thank you Jamie for giving me my laugh back. 

Katy was my very first friend to find out about my calamitous event. Not through being told but through an intuition that she has that something was amiss. I suppose as my best friend of ten years, she just knew.
The book Katy created
In these blogs, I often concentrate on how I felt and dealt with the situation. But I want to disclose what I know of Katy’s emotions. She gifted me with a memory book. Inside its pages it conveys years and years of true friendship and a lifetime shared. From the pages of this book I saw that part of her had also been shattered. She grieved the loss of my consciousness too. Along with my book Katy bought a dozen coral roses; only recently did I find out that behind this rose lays a beautiful significance. 
The colour of the coral rose has a special meaning; it signifies enthusiasm and design. This is a perfect rose to give someone you are excited to get to know, or would like to spend time with. 
Now whether she knew the connotation behind the roses or not, out of all the bunches there, those were the ones she chose.  Katy knew, that only together would our shattered pieces amend and create something brand new, with every ending there can always be a new beginning. 
An extract from the book Katy made me

Holly Rianna and I. Friends I was lucky
enough to made after my amnesia
Alice and I, a childhood friend I
could not face the future without
I could sit and write about my friends for days. My Sophie, Alice, Holly and Rianna. Each has created their own individual impact on my life. Some friends old who have adjusted and adapted to the new interpretation of me. Others are new and and therefore appreciate past events but want to grow with me in to the future. I am fortunate these seven have allowed me to contribute in their path of life and will forever be deeply indebted to them for their help so far. 

To Katy, Alice, Sophie, Evie, Rianna, Holly & Jamie:

Before I met you I was an incomplete puzzle but you 7 each came together with a piece. Without you, there would be no finished edition♥️

Friday, 8 February 2019

A Viral Experience

Social media has become a routine for many of us to visit regularly throughout the day. It enables us to express our opinions, join new communities, interconnect with people from all across the world and much more. The initial platform for social media was to interact with friends online. Now many businesses delegate huge spends into it and use it as a tool to promote themselves or products. Never did I realise the huge impact social media beholds over us, until the story about Bish (Richard) and I went viral. 

The 8th February 2017 was the date my story became common knowledge. Overnight we went from the average person to suddenly the entire world knowing a fabricated part of our lives. I use the word fabricated loosely as although some of what was placed in the paper was true, the main focus was constructed upon a love story around Bish and I, when really what went on was so much more than what could be elucidated. Furthermore I am not oblivious to the fact now that if this was not applied on the basis of a love genre with a somewhat happy ending, then would there have been such a mass enthusiasm around the piece? The views, shares, likes, comments and impacts would not have been the same. 

A lady who read my blog persuaded me to openly discuss my story in order for it to be published in the paper. Initially I had my reservations as I was embarrassed about what had happened but after discussion I agreed as I believed this could open doors for me to seek a second medical professionals opinion or meet other people who have faced the same or similar problems. What I had not anticipated was the colossal response not only I, but my family and friends received from all over the world.
I was lucky enough to speak on
an Australian radio!

My bestie tweeted her
fave footballer &
got a response,  win win for all!
Still amazed that people took
the time to share and read. 

Let’s begin with the ‘people from my past.’ A lot of people whom my parents naturally assumed would be there for me actually could not handle the severity of what had happened. I lay no blame on these individuals as I have no knowledge of      how I would have been if it occurred to one of them. 

When the story arose I was inundated with messages, kind words and expressions of encouragement from people who knew me prior to diagnosis. Lots of whom had premeditated their words before the story was published but were too self conscious to press send as they were unsure of my response. I do believe that many of their words were bona fide and while extremely thankful for their support, still a year later I needed something more. I still had a longing to reclaim my old memories and wanted them to provide me with a day by day analysis of what I once was like in the hope that this could be my trigger. I was yet to accept my reality. 

The messages from strangers also engulfed me. Never once have I received any hostility, only messages of positivity and guidance. I was also surprised to encounter the response from a handful of people who had either been through or known someone with a akin situation. People who knew what I was going through and could offer substantial advice. This gave me hope. Hope that my life would eventually be ordinary. These strangers had no obligation to contact me but I am eternally appreciative that they did. I’d like to think one day I could reciprocate this goodwill. 

It is uplifting to know that someone took the time out of their day to offer me direction all from seeing a article or Facebook/instagram/Daily Mail post. These ‘strangers’ have empowered me to speak freely to anybody in need of aid.

Having the story go viral not only gave myself but also Bish and my family a different type of attention. Although we are advocates of 'do not believe everything you read' mostly what is reported and described as rumours usually stems from the basis of fact. Each new story that was issued had it's own synopsis and structure but all consisted of three true fasts; I have retrograde amnesia, I was erecting a new life and that I had developed once again an intense and true love for Bish and my family. As long as these facts were entrenched, any mishaps could be overlooked.

Article in 'Reveal' magazine
My lovely grandad reading
the original publication x
The story in the paper granted me acceptance. Acceptance of myself and what had happened, to enable me to progress through to the next chapter of my life. It allowed an explanation; rather than cautiously only telling minimal people close to me, many I encountered had heard about my circumstances. I therefore had no need to be afraid anymore. Going viral gave me the opportunity of spreading awareness that     this can in fact happen in reality. 

Facebook, Google, Instagram and Twitter authorised my next decision by informing the rest of the world of my history. For me, social media opened up a lot of new ventures. Of course it has its faults but perfection will never be obtained. 
Now, when I look back, I was worried of what Bish and my family would make of the initial publication, I am glad it was constructed as it was. For us, this only cemented our healing process. We were no longer bonded in secrecy but could express what had happened and our perception to any and everyone that asked. A problem shared is a problem halved after all.
It amazes me every day how lucky I was to gain the reaction from the story that I did. For when I feel blue I am able to review old messages or posts that help reinforce my worthiness.

Amazed at the response x
We even got made into a meme!
if you can't laugh you would cry
To the lady that felt I should share what happened with the world, thank you for opening the door to social media and enabling me
to meet such fascinating people.