Routine

‘A body without bones would be a limp impossible mess. So a day without steady routine would be disruptive and chaotic’

What we sometimes misinterpret and are unwilling to accept is that routine really does play a key role within human lifestyle. Take routine away and there will be an initial gain of freedom and opportunity which over time quickly turns monotonous and unvaried. My privilege of routine was seized from me in conclusion to my retrograde amnesia and this was leading me into a very dark world. 

As I have already mentioned in my previous blogs; I now accept that I most definitely struggled with PTSD which I believe occurred shortly after my hospital admission (Although this has never been diagnosed officially). At the time however I was resistant to seek any type of medical advice as I was apprehensive about having another ailment added to my already increasing medical biography. I believed that the feeling I was experiencing would be a brief indisposition. However once my mums’ compassionate leave from work came to an end and she, dad and Bish all returned to their regular day to day I started to become extremely morose. Although mum only works part time, the days she was gone I completely disengaged with my existence. I didn’t bother waking at a applicable time, eating, venturing outside or exercising and was making no attempt at creating any type of life. I was the complete personification of nihility and lost my personal spark. I was entrapped in a black haze with no means of escape. 

Through pure honesty I want to express to you that at no point throughout my journey have I suffered with clinical depression. Of course my mental state was effected in consequence to what had happened but my mental health remained ‘stable’. In my individual case, I sincerely believe that no medication nor counselling would have been beneficial to my recovery. I myself, needed to restore my stimulation for life. 

With that said, on one particular day in mid-2016, I experienced a final deterioration in my mental state; after consecutive days alone diminishing in my own thoughts I reached my breaking point. I delivered words that no parents should ever hear from their child whereby I was questioning the point of my existence. I regret saying it now, but back then I could see no outcome of life getting better. I wasn’t completely unhappy m, simply just lost in life. My parents realized that I had hit my ultimate nadir to life and decided to take control. 

My mum introduced me to yoga. She sought out a specifically designed class where I would be benefited not only from the experience of meeting like minded individuals and become physically stronger but also to gain a non-evasive self-spiritual acceptance. I had a natural ability in yoga and quickly became appreciative of the pleasure of the endorphins you gain from exercise and so decided to explore other recreations. Without any intention I had started to build structure into my life. But with every accomplishment a misdemeanor followed. The physical activity and lack of diet held an impact over me and so I became overly fatigued. Each evening I would encounter into a extremely graphic and realistic nightmare that bared no relevance to my life, I was able to recall each and every minor detail from the dream. Still to this day we have no answers as to why I possess these but they were far worse in the beginning that they are now.

Life was mainly ascending but I still contended with my mental state. I continuously craved to be the same as every other human I knew and needed a traditional regime to comply with normality. Therefore in my mind I needed a job. So six months after the amnesia I applied for two positions at two separate companies with the expectation I would be rejected for both. 

I would like to acknowledge that I know it was perhaps too soon to pursue a full time career but from my perspective at that particular time this was the gap in my life. 

I was accepted into full time employment in October 2016. Routine, courage and independence began to prevail in my life once again. By now my brain was able to learn new things expeditiously. My main burden lay on my interpersonal skills and delayed speech. I decided to delve into the world of non-fiction and as always pushed myself into reading the most intellectual and challenging books that contained unfamiliar jargon. This improved and expanded my vocabulary and I learnt how to articulate words and my sentences became cohesive.

Rather than being blinded by default of capability I began to relish in my edification.

In many ways I am ‘ok’ with the thought that this happened to me rather than somebody who doesn’t have the stability which I obtain around me. Family and friends are the pursuers of your recovery, you cannot simply get better of your own accord, it is near impossible. Of course I still struggle with my emotions at times but this only makes me human. 

Having routine changed my life once more, it showed me reason to want to progress and clear the dark haze that I had gained. 

‘Routine is a ground to stand on, a wall to retreat to; we cannot draw on our boots without bracing ourselves against it.’ 

                                -  Harry David Thoreau

•NOTE: Please note this blog post was written over a year ago. Reading this now is difficult for me as I believed I was coping when really I wasn’t. You can see the sadness in this post and the willingness to be better. But getting better takes time and doesn’t just happen overnight, however much we would like it too. This post was written in a completely different head space to the one I am in now•

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.

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.

X

What is recovery and how do you recover?

Although it has nearly been three years since my initial hospital admission for retrograde amnesia, I feel that I am still trapped in the world of seizures and memory issues. I am still recovering to this day and I am not afraid or ashamed to admit that. But what is recovery? 

The Oxford English Dictionary explains it as ‘A normal State of Health, Mind or strength’ 

On the outside, I probably look ‘normal’ or fit society’s expected perception. When you first speak to me, although initially a little slow and unable to form a coherent sentence (and sometime struggling with lethologica), after a while it fades and is accepted as standard. So does this imply that I have recovered?

Today, as I am writing this I feel as though I am in a good place. I am not entirely sure how to define the ‘good’ but I am by far miles better than I was this time three years ago. 

There would have been no ‘road to recovery’ for me if this world had not blessed us with two little angels in the form of my niece and nephew. The thing with children is, no matter what you’ve been through or how black and grey your world is, they will always help you find colour in a way that an adult can’t. They have the ability to love you for you without any judgements. They expect nothing from you other than your time and your devotion. Albie was just 2 on our reintroduction and Rubie a mere baby of 3 months. From the moment I laid my eyes on them and Albie grabbed my hand and said ‘Jessie play’ I had my first real experience of love.  Cuddling Rubie broke my guard and gave me a first drop of self worth. Without even knowing they were the beginning of making me, me. They gave me my imagination back. Through the past three years we have mirrored each other’s developments (although theirs was the natural next step in their lives, mine was a reintroduced one!). I can only thank them with showing how much I love and care for them. They will never know how much they helped to save me but I hope one day they can read this and reflect on how pure and open their hearts are.

They were just two of the many people who helped me overcome most of my initial hurdles to get me to where I am today. (More blog posts to come!) But they, Albie and Rubie gave me something I cannot explain.

So in answer to my question of have I fully recovered? 

I feel that when I am in my immediate families presence, that is me with a ‘fully recovered personality.’ This is when I truly perfect the Oxford English Dictionary description. But do I really care about a definition? No. Not really. Because recovered is just a word that has different connotations for each and every person. For me it means a seizure free life and being able to wake up each day as Jess surrounded by my family and peace. I have one out of two of these but I am way over the half way mark. 

I am grateful to see the world in colour each and every day.