Frances writes: I am a 24 year-old woman living in Kent with my partner and recently have been diagnosed with autoimmune encephalitis. I was discharged from hospital in April but during my stay in the hospital I wrote an account of what I was going through. I was only able to write it during my last three weeks in the hospital as this was when I was well enough to type and coherent enough to get out what I wanted to say. I thought it might be of interest to you and other sufferers.
This truth is dedicated to the wonderful staff of Treble ward who go above and beyond their duties and the beautiful Sam who helped me through the darkness from her pure kindness and understanding. I could dedicate it to loved ones that kept me alive but I will spend the rest of my life thanking them.
CHAPTER 1 – AN INPATIENT
I DON’T KNOW THAT I NEARLY DIED, I HAVE JUST BEEN TOLD.
Apologies in advance for the many metaphors I may use, for any repetition and for anything that doesn’t make sense – all consequences of the illness I have. Although this has been written a few weeks after the beginning of what could have been the end, I am still a long way away from being healthy and may never get back to who I was.
I have to reread this entirely every time I go to add more.
I used to be living the dream life by being a part of a loving family and having a job I had spent eight years and God knows how much money to get as well as having the greatest of friends. Primarily though, by being in love and engaged with the most beautiful woman I have ever seen. Then one day I woke up to be consciously aware that I was in a hospital. I don’t remember any parts of this dream life and I was shocked and thrilled to hear about the job and even more so, the engagement. However, I do remember that my family are very close and that Stacey is the love of my life.
Graduation before illness
Autoimmune encephalitis (what they are currently treating me for – although I am still undergoing further tests) has the potential to be the best illness you could acquire; if you’re a half-cup-full person. I have been awoken from an eight day coma and two week stint in ICU to be in a bed in a ward with people I have never seen before. I don’t know my own name and can’t understand what anyone is saying.
It’s like I’ve been kidnapped, drugged, taken to a new country and have forgotten how to speak, hear and listen. The people around you are trying to save your life, which is the first thing you have to accept. You try pull the wires out of your nose and neck, you attack everyone so much so that they have to put big white gloves over your hands. You punch and slap yourself in the head to wake up from the nightmare you are actually living. You are crazy and every time their backs are turned you bite the Velcro, rip off the glove and try to escape – potentially killing yourself. You have no control you just want to get out. You’re shouting rape at the people around, at your own family! They have to sedate you to keep you alive. You don’t remember any of this it’s just what you eventually get told.
The first thing you truly realise is that you love the people around you even if you can’t remember their names. Later you will realise they are the ones who have suffered the most and are going to suffer the hardest throughout this whole time. You may have lost some years and now have short-term memory problems, as two of several ramifications of the illness, but they thought they were losing you.
There is no logical timeline to this truth as that’s the way your brain works now.
At 24, having a very foggy memory (as if it were a dream you had a few years ago) of someone rolling you on your side to wipe your bum and change your nappy is unbearably embarrassing when you realise it’s true. Although this realisation won’t come till much later. You’ll be flooded with incoherent thoughts, so many it will hurt, just be honest. If you can’t understand the people around you then tell them in any way you can; write it if you can, say anything you can, try anything to get on the same level. I have attached pictures of how I initially achieved this.
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Pride and selflessness are out the window for now. You wear a nappy, are attached to a load of machines with many wires going in and out of your body even though you don’t know why. But the faces around you start looking more familiar and the emotions you have for them are still there, they always will be. Thankfully the strongest emotion of all is love. The love you feel for these people is keeping you alive, you will realise how much so later on. You may not know your partners name or even your mums name but you know you love them – emotions may grow in life but they will never disappear!
In hospital
The illness: A metaphor given by one of my nurses is that you are in a deep dark forest looking for yourself, you’re shouting your name, running in a winding path you’ll never be able to retrace and you are not sure how long it will be till you find you. To make things harder, the old you is also running so you never know if you’re getting closer or further away from the end goal. The original metaphor I had written: Imagine putting something down but forgetting what you put down as you look for it, constantly. You may never remember what you forgot you were looking for and this is where logic comes in to play. Look around you, if there is a pen on your lap with no lid then you were probably looking for the lid? Keep the pen in your hand so every time you forget that you are looking for a pen lid, you get reminded what you are looking for because you have a lid-less pen in your hand! This is life, and will be for the foreseeable future. Don’t be fooled, logic does not always work! Sometimes you will forget to hold on to the pen and your thoughts will be lost forever. As an example: in a couple of days I will open a couple of drawers, bend down to pick out some clothes but forget I have opened the drawers and hit my head on one.
You are going have to teach yourself everything again; from walking and writing to understanding words, sentences and how to communicate. You’re an alien in a foreign land with no idea how you got there. This is terrifying but all this learning may occur a lot quicker than you think. You can go from feeling like you are in year one to year nine in a week but still not know what simple words such as “brioche” and “frame” mean. In a few weeks I will have to ask what the machine is called that dries your hair – a hairdryer.
Time, patience and love will get you through. Primarily though it is motivation to not hurt your loved ones. I still can’t remember what happened two days ago, but tonight I have found a few mechanisms to remember as much of each day as possible – although not all will. For me, repetition and writing are key.
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First attempt at communication
During the first few days once I was moved from ITU to the neurological ward, I could finally write (my hand writing was terrible) and the first thing I wrote down was my mother’s phone number – missing only one number! One of the first sentences I could say was ‘I’ll be smart’. I’m guessing that subconsciously I didn’t want the £50,000+ I had spent on education doing a BSc and MSc to go to waste! Although I still only remember about five per cent of those four years. I have random words flash in to my head like the scientific names of native and rock oysters (Ostrea edulis and Crassostrea Gigas, respectively) but I can’t remember which university I went to and the word ‘Plymouth’ sounds completely unfamiliar…
Going through this illness is terrifying and enough to make you not want to survive. However, it could also make your life. Every person is individual but, for me, I hope it is the latter. To anyone who suffers, both the patient and the family that has been affected, my first recommendation is to get on the same level, for me this was with pen and paper. This will be your first step in recovery. The more you write the more you retain the more you understand. My first day of writing this account became the first day I started retaining information even if it was only one completely irrelevant thing. You still have the majority of the information in your brain, trust me, it’s just remembering how to let it out and figuring out the order and meaning.
Messaging other loved ones at the appropriate time can also be a very helpful tool. The first time you listen to music or try to watch TV will be very confusing and scary as the words and sentences will not make sense to you. However, having brief messages (as simple as three word sentences) with old friends will start to bring back memories – ask them to send short sentences that are easy to understand. Also, explain if you don’t understand their replies and ask them to also send short, sharp messages. And appreciate that they love you and would happily send you over some old pictures if it made you a fraction happier. Do not write a Facebook status or let the world know about your illness until you are ready – this will certainly not be straight away.
A nurse just gave me a beautiful metaphor that a previous patient had created to describe the recovery process of this condition:
Imagine your car keys have been unnoticeable pinched by a magpie in a dark, dense woodland forest. You know they are in there but finding them is going to take a long time and will be very difficult. It may take a very long time or it may be soon, either way you can’t leave without them! Continuously searching you get better at what you’re doing, the sun comes out and the forest thins in areas. Eventually you’ll find your keys and the keys are your normality, although potentially not the same normality as before. If you can get back to your car and drive home then you have won. You’ll never remember the exact path you took, the winds and bends and the amount of steps you took, but you’ll get home, to the ones who have been worried about you the whole time you’ve been gone. One day you’ll laugh about that silly time you had and what others did whilst you were away.
I DON’T REMEMBER FRIENDS (the TV show)! Potentially worth the illness itself…
I remember Ross gets a monkey but I don’t know when or why! Then I start watching and find out Monica used to be fat and am shocked. There is no logic to what you know and what you don’t. I have also got a funny group of friends, known on Facebook messenger as ‘Frivolous Fun’ who, when I told them this information, immediately started replying with spoilers – triggering a lot of memories.
An example: Alice says “Rachel gets off the plane” and a picture of Ross and Rachel at the airport pops into my head. Within days of telling the group that I’m awake now in hospital, the situation is made light and I read the words “induced comas = comedy gold”, making me chuckle rather hard!
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My ward is full of wonderful lifesavers (also known as nurses) that truly care about my recovery, inspirational people that build a unique bond with you – ignoring your conditions and not even blinking when you tell them the same story every single day. You must be an exceptional person to do this job well.
I’m finding the hardest person to write about is my mum. We have always had a unique mother-daughter best friend relationship. I don’t know whether it’s because of the guilt I feel for hurting her, the pain in her eyes that I’m ill or the relief in her smile that I’m alive.
I’ve asked the doctors several times whether I have had a mental break down and they have confirmed that this is 100% medical. One day I was being showered and discovered scars all over my body, I realised then that I used to self-harm for about 10 years but now I had no visible open wounds on me, only scars, and if I had such a perfect life why would I have a mental issue? So why did I have this strong feeling? On my Nth day of being in the neurological ward I’m allowed out in the car for an hour (I will not add a timeline because I am still unsure). I am chatting with mum and she makes a throw away comment about me being arrested before her. I’m horrified! If I’m this great person why would I have ever been arrested? So my inquisitive mind immediately starts asking questions. Mum reluctantly tells me that one evening I was arrested for drink-driving but never charged. I may not know myself, I may be a fool but I do know that I would never endanger someone by doing something as foolish as drink-driving, I’m sure of that. So I ask and ask and eventually she gives in and tells me the story:
About six years ago I was severely depressed but didn’t tell anyone. I was cutting myself almost every day and had moved on to my wrists rather than my thighs but this still wasn’t enough. As I type this I start to remember. So one evening I had a few drinks, got into my car and drove down a narrow dirt path and into a tree. Luckily enough I hadn’t seen the ditch between the path and tree so I was physically minimally injured. I then walked three hours to the nearest A&E whilst my parents were driving around looking for me.
It clicks – the guilt I feel now is because it’s not the first time I have made them fear they were losing their only daughter. I have slight memories of the desire of wanting to die. I am sat in the back of a car I know, eating McDonald’s (which everyone knows) and listening to stories (I should know) but inside my heart is breaking and the desires of wanting to cause that pain again come flooding back. I KNOW, despite all desires and memories that come back, I am over that part of my life. I may find more scars but I will never create more. Fact. There is just too much love around me. But knowing this doesn’t make me feel any less guilt, just more determination to pursue the counselling I have asked for. Wanting to get too 100% rather than the 95% I had been tootling at before I got ill.
Know that as I type this I have to constantly google word spellings and definitions, and figure out how to use my iPad notes in the relevant ways, another consequence of my illness – forgetting the most simplest of things!
Later that evening, when mum and Stace have gone, Sam pulls back the curtain and we start to chat. I don’t want to be rude because visiting time is almost over and her husband is there and I don’t want to take away their time together but she clearly has something to tell me. She tells me off, but in the most needed way. She says she had overheard me call myself dumb and stupid several times and that I should write down to change the words. I grab my book and follow her instructions. Her, and her equally lovely husband, suggest ‘funny’ and ‘forgetful’ as alternatives. She tells me that my brain is very easily influenced at the moment and words like that, even as throw away comments, may affect me later in life – something she had personally experienced. I am constantly thinking about how I can get back to the people I love, to be their support rather than them be mine and to never hurt them like this again. It’s like Sam has watched my entire life and knows everything I need to hear. In big capital letters using my pink highlighter I write down these instructions so tomorrow I can ask Stace and mum to make sure I follow them. I have learnt from the initial memo book that dad thought to buy me that writing stuff down and reading what I have written several times a day helps it stick. This little bit of advice could completely change my future for the best!
Waking up
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Today is a bad day – I’m not going to write.
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Yesterday was my first bad day that I am conscious of. I had obviously had worse bad days, such as when they put me in a coma or when they were discussing a tracheotomy, but of these I was unaware. Another problem with recovery is that you become more aware of what is happening. I don’t know whether it was because I was aware I was having a scan that searched for cancerous and non-cancerous tumours (PET-scan) or whether it was just a side-effect of the medication I was taking but it was shit. I was told that my recovery would be like a scatter graph with all the points connected – sometimes things go up and sometimes things go down. The last few days of progression had made me overconfident and I was sure my recovery would be a simple line graph that would show X (days) and Y (progression) increasing at the same rate. Boy was I proved wrong. My brain was as muddled and incoherent as it was a several days before. I couldn’t keep on the same wave length for more than a few seconds and I couldn’t remember how to do simple things again such as take off and put on my bra or turn on the shower. Also I forgot my towels so yet another person in the hospital had seen me naked. On the way to the scan (I was driven in an ambulance car with an assistant nurse) I saw a lamb – how beautiful! But, how could anyone forget what a lamb is? Ironically I then saw three dead lambs, typical.
In several weeks when I am discharged from hospital and walking the dog I will get told that lambs sleep on their sides so the three I saw probably weren’t dead.
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I was going to start this paragraph with “I’m 24 years old and the test I am taking with my occupational therapist is going to the shop to buy lunch – how pathetic”. However, I turned my head to the bed next to me and saw this beautiful smile that said “good morning” and now I want to start it differently…
Today I am going to find out where I am on the playing field, there is no win or fail there is just education – something I clearly like. I am not scared, as I thought I would be, I am prepared; with everything I could need, my clothes are in a neat pile, my bag is packed and there is even a bottle of water in the side! Either I am an organised person or I am wanting to do well.
You may have noticed that I have changed my tone of writing from “you” to “I”. I cannot tell you anything about you, especially as I am unsure of anything about myself. Forgetting my long term memory also means I don’t know I am. I was constantly doubting myself, have I ever done anything horrible? Or worse, am I just not a nice a person? I don’t know! But my newly-becoming guru Sam is guiding me into realising that the person I am now is a reflection of who I was. I cannot just create a new personality when I can’t even remember how to work a bra. With the love around me and the several visitors I’ve had, collectively travelling the width of England, I must be a good and lovable person. My certainty of this is strengthening every day, with every chat me and Sam have (she seems determined to add in a compliment to every sentence!) and every smile I put on someone’s face when they see me.
There are still many days this is doubted but this is a mental health battle not a neurological one.
The test of a simple shopping trip went better than expected. I tried to be funny the whole time (sometimes I am the only one who laughs at my jokes) not to try and boost my marks but to try and stay calm and pretend me and a mate were going to the shop. Everyone in the hospital seems to be keen to be your friend – that’s such a great show of human kindness! I made a halloumi, chorizo, tomato and basil wholemeal pasta with fresh salad and remembered simple skills like chopping against your nails to stop you from cutting off your fingertips – something I had learnt from working at my Aunt’s cafe when I was younger.
Aunty Claire and Nan will be back one day every week, how can everyone love me so much?! As I re-read this I realise I haven’t explained that my family live a few hours’ drive away from where I am hospitalised.
Sarah-Lee decides she won’t have a portion but gives me a quick review at the end, saying I’ve done really well and she was confident enough to go in and out of the room (I thought she was spying on me when she left). Although I had overcooked the halloumi; explaining her choice for her own salad. I didn’t mind, I was very happy to eat it! Not that the hospital food isn’t nutritious but it was nice to have a bit of variety.
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I have written a list of things to add to this story later-on if I am unable to write them in full at the time but funnily enough I forget what those listed things mean when I go to add them! For example, I have a bullet point that says “-Helen and mbio girls (waited to remember group name) made me happy” but I can’t remember when or why it was relevant to add when chatting to them always makes me happy!
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I just don’t know what’s going on anymore, I don’t know what is fact or fiction and I don’t know what I can trust. Yesterday a doctor told it wasn’t autoimmune encephalitis and me and mum were chatting about it later and I said I almost wish it was so at least I’d have a diagnosis and she said it is. I argued because I was adamant that he had said it wasn’t and was very forceful with my opinion so we asked for another doctor to explain a bit clearer. I was wrong. Again I have woken up thinking I don’t have autoimmune encephalitis, checked my notes and seen that I do. Useless. Of all these thoughts and memories I have, which can I trust? Again, whilst re-reading this I would suggest you go on the www.encephalitis.org website that explains symptoms and side-affects as well as gives views of patients that have had such experiences. When I went on this website, after being discharged, I read that false memories are a side-affect and that it is very helpful to for both the patient and loved ones to know this. I would suggest arguing points is not necessarily the best way to approach differing opinions but asking for a third party opinion will be a more sensitive way to help the patient.
Although in a few weeks from writing the above paragraph when I get something right and my family miss -remember the topic it will feel bloody awesome!
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My new favourite song is “I’m with you – Vance Joy” I have listened to it so many times and can still only remember the chorus. Maybe I should write the lyrics down?
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Sheila, the lady opposite me in the bay, can’t speak but knows what you’re saying and follows your instructions. She’s becoming closer to me the longer I’m here. This morning she sat on my bed and pointed at her top, I noticed a spill so got her some tissues and she cleaned it up but didn’t get up. I started chatting to her and as a nurse walked past I said “me and Sheila are becoming great friends”, Sheila linked my arm. People are so beautiful.
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“Sh*t I forgot” – dad had gone to the market and seen a wooden sign saying this and snapped it up straight away! Now it’s above my hospital bed and during the regular obs (observations) the nurse starts laughing hysterically. He is truly the best man! Yesterday I was on day leave (we’ll come back to that) and as they were leaving from returning me to bed 1 bay 4; just checked and it’s actually bed 4 bay 1 and by checking I have forgotten where this sentence is going.
As my parents and Stace were leaving Sam said when am I going to meet this wonderful man you speak so highly of I jokingly said, “ohh he is overrated” and then in a more serious tone continued: “he’s probably a lot like Kevin”. Me and Sam may be the only ones who understood the meaning of that.
I dreamt last night of being shown around my dream home by an estate agent, it was next to the beach and there were seals in the distance. I said to the estate agent I’d take it as long as he fixed the oven! I was awoken for obs and realised that dream was a reflection of what I had seen the day before (minus the seals and the beach). During my day leave (10-4) I had gone home and been shown around the house I had lived in for the past three months. I was scared for Stacey’s sake that I wouldn’t remember any of it and told myself that pretending I did may be the best for everyone. However, this was unnecessary. During the drive to the house, I remembered nothing except a road sign ‘Thanet way’ and a pub called the ‘The Cross Keys’. Turns out I have never been to the pub, but Stacey’s Nan used to own one with the same name in Cornwall. As soon as I walked into the front door, and said hello to our very excited dog, I immediately remembered the layout, a lot of our possessions and even which side of the bed was mine! Although I immediately wanted too start cleaning… Having a slight, to say the least, determination for organisation is actually a beneficial symptom of the disease. A few parts of the house were very nice surprises, such as the small painting shed Stacey had at the end of the garden and the large built in cupboard in the bedroom. Walking around the house had been the biggest trigger yet, although caused an oxymoron of emotions. I was so elated that I had remembered so much however also disappointed that all of my memories were materialist, memories of objects and layouts rather than events and time spent with my Stacey.
I’m not going to tell you anymore about the first day you are allowed to leave for a few hours, just know that it is okay to cry on the way back.
Upon our return to the hospital, for obs, tablets and injections, I began to tremor harder and my palms began to sweat. My boss was coming in to see me for the first time and I was terrified. It was a man I may have worked for for the past few months but had no recollection of and I felt as if I was going for an interview for my perfect job with no valuable skills. As soon as I saw him I remembered him piece by piece; his name and his jumper, even his child’s cute face and ginger hair. I didn’t however remember his wife’s name but she told me we had only met twice and so this was to be expected. Again, repetition is key and I soon re-established the relationship I had with my employer, perhaps making a few too many jokes to mask my nervousness. Overall, today had been a huge confidence boost that I was going to get through this, and so I subconsciously decided to put all of the elation on the line by googling the company I worked for. I found a YouTube video of the operations and was able to recognise some of the equipment and even name a few of the machines. Immediately I started to think of improvements that could be made to video and website – something Stacey told me a few days later is what I had been working on before I got ill.
So I do have the perfect life and now I believe it, I just have to get well again.
With the prompt of knowing I have this wonderful life, I have finally decided to discuss my beautiful fiancée. One of my earliest memories from this whole experience, perhaps in week three, is that I was looking into her eyes and she gave me a ring. I couldn’t believe it, was she proposing? I welled up with elation. She showed me her finger and she also had the same ring and said “we are engaged”. I can’t remember much more than that other than the emotions of pure joy, elation, love, shock, ecstasy and all other feelings you have when the love-of-your-life asks you to marry you!
Stacey has saved my life every day from the moment I was rushed in to hospital to the very last word I type. I can’t put in to words how I feel for her but it is not this heroism that makes me love her, it is everything that she is. The picture I hang on my emergency button of us two on the night we celebrated our engagement is the last thing I see before I sleep and the only thing that enables me to be in that state of calmness.
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The night of being discharged
I was transferred to the neurological ward after a couple of weeks in ICU – the rough timeline being given by my mother as I type. Once I had been in the neurological ward for a week or so I began to remember things a bit more clearly and triggers were starting to take more of an effect. Note that this whole tale is written several weeks after being in the neuro ward – perhaps showing my progress as I have been told I could barely speak in ICU. Some memories are from ICU but I certainly did not have the ability to tell them let alone type them at the time. My memory is improving.
One evening, after visiting hours, I was messaging a friend and she gave me a trigger of my engagement by mentioning something (I can’t remember what it was). The more I thought about the engagement the more I could remember – as long as I didn’t try to think too hard as I have found this to be counterproductive. I wanted to see Stacey so bad, not just to see her but to see that beautiful smile she would show when I retold her the story. I was correct – she beamed! She may have even felt the way I had when I realised I was engaged when she gave me the ring in ICU. I could write a whole book about Stacey, I couldn’t understand how anyone could be so strong. With mum I put it down to her being a mother that was pulling her through, she hadn’t cried yet because she had to believe she wasn’t going to lose one of her children. However with Stacey she had no children, hadn’t gone through anything too much traumatic (that I remember) and yet she was able to hold her form with so much strength. Either she loved me that much or she couldn’t be bothered to go back to work; the latter obviously being a joke!
Me and Stacey had always looked after each other equally, it had always been a very fair and happy relationship. The more I remember and the more questions I ask the more I am certain of this. So I couldn’t just let her be the carer constantly, I had to somehow even the playing field. The odds were not going to be the original 50/50 for the foreseeable future but if I could do just one thing for her I knew it’d make us both feel a little better. I had a little think and decided a CD of the artist I had been listening to recently might be best as some of the songs seemed relevant to our situation. How do I buy it though? They have my cards and money (thankfully or I may forget where I put them or even how they work) and I didn’t want to spend money when I knew we must be struggling financially. So I swallowed my pride and messaged Helen, one of my greatest friends. She was more than happy to order it, she even suggested other presents but I couldn’t ask too much. I did however agree to the purchase of a chocolate bar that I added a rude connotation in the message you could add on the delivery slip – I won’t include that connotation in this story!
So a few days later, Stacey messages and asks if I had bought the album? I respond “I had but not to worry, Helen had purchased it and I would pay her back when I am back on my feet”. She then asks if the signature is real. Shit! Is it? I immediately message Helen to ask. I respond to Stacey “Maybe….” which implies it is but gives me the opportunity to explain if it isn’t. Helen responds that it is a real signature and she had found it at the same price as the link I had sent her of the unsigned CD. This is a true representation of Helen’s character – indescribably brilliant. I still will never know if it was the same price but I know she won’t accept more money than the original link and it will be a struggle to get her to accept any at all. The album in ‘Nation of two’ by Vance Joy – give it a listen! Stacey tells me later that day during visitors hours that ‘Lay it on me’ by Vance Joy was our favourite song so I must have subconsciously known; proof that at least some memories are still there, I may have just not found them yet! My new favourite was “I’m with you” and this may even be our first dance song?
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Not all days are as manageable, do not be fooled. One day my Aunt, Nan and two cousins came to visit as well as mum and Stace; at this point dad had had to return to their home town for work to financially enable mum to stay. We all went down to the cafe in the hospital as six around a bed was ill-advised; forgive the pun. Within minutes of chatter, a few different conversations being had at the same time, I was overcome with confusion and fear. I stared as hard as I could at Luke’s Minecraft landscape to hide the fact that I was breaking inside but my eyes started to well and I couldn’t stop the tears from rolling down my cheeks. By this point I was used to crying in silence, I could even answer Luke’s questions through the tears. However, it didn’t take long for the conversations around me to halt and mum to come and hold me; exactly what I needed. I let it out, I broke in her arms, loudly and violently, doing everything my body wanted at the time. Luke’s cute little voice asked “is she crying?” and Auntie Claire responded although I can’t remember what she said. As I calmed to the point of showing my face to grab some tissues, the others stood and declared it was their time to go. Initially I thought it was to avoid the traffic but at a later stage (I’m not sure when) I was told that mum had answered with a nod to the question of ‘”should we leave?”. I still don’t understand why I broke at that point, was it because I was overwhelmed or was it because I wasn’t ready for normality? I know I felt less educated than a nine year-old because I couldn’t keep up with any other conversation around me, I was even struggling to keep up with his game, but I also know that wasn’t the reason I broke.
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So I have just got to the writing stage, after reading and editing the grammar of all of the above, and realised I have two ‘to add:’ lists, a great example how my memory is still poor but my determination to be smart again is improving, this illness has it’s comical times!
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When you see people taking pictures of everything all the time, maybe instead of thinking “what’s the need” reconsider with how this could help the, should they ever suffer with memory loss. Except if it’s every meal… Forgetting you had an extra-frothy cappuccino is not the end of the world. Stacey told me she preferred Helen’s cappuccinos over mine as she made them frothier. I may have to rethink whether Helen is going to be a bridesmaid, or I may just have to get better at making coffee. I’ll add it to one of my many ‘To do’ lists.
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The day dad had left to go back to work was tough for all of us, the four of us were metaphorically a game of Jenga that was nearly ending, and pulling out one of the pieces had the potential of making everyone collapse. However, it was an extremely selfless act and a necessity. So me and dad went down to the cafe alone (as you may be able to tell I had somewhat regained my physical abilities at this stage) and had a well-needed chat.
I had remembered something that I felt he was worried about me remembering, that something being irrelevant to this story and that had forgiven him a long time ago. I also remembered that I loved him no matter what had happened in the past and he needed to know that he was the best man to ever enter mine, my brothers and most importantly my mum’s lives. He may not biologically be our father but for us kids he is; one day he will certainly be my proud father that walks me down the aisle.
Throughout the whole talk, we held hands and both cried, we were so honest and raw. I told him I had remembered the first time we met, mum had sent the boys to bed (they had already met him) and I was allowed to stay up late! He knocked on the door and walked in with a bunch of flowers so I shyly introduced myself and said thank you very much for the flowers then whispered to mum “he’s more bald than you said”. We have always laughed at that story because the flowers were actually for mum and he is actually now balder! I can’t remember much else that was said during our chat in the cafe but I do remember we both broke a little and also both got better a little more too.
*
The next week went by as a bit of a blur, I was gaining confidence and harmlessly flirting with a few of the nurses. I was being more and more independent and had established a routine. I woke up every morning between 6.30-7.30, replied to messages from my family and sent a good morning message to Stacey and mum. I would pack my wash bag, including the clothes I was going to wear that day and double check that I had everything. Take my medicine – about 36 tablets, an injection and a blood test every day. I would speak to Sam, ask about her night and how she felt she was progressing. I had previously promised her that as soon as I heard her chocking in the night I would get the attention of the nurses, but I felt bad that I never heard it and couldn’t assist in any way. For the last couple of weeks I had slept with a headphone in one ear and the music on its quietest setting, listening to a YouTube mix of Vance Joy. Life was becoming routine and routine was understandable.
We had all become comfortable with each other now, Sam and I hugged every night before bed and we all had regular chats; Sheila’s responses being either a smile, a shake of the head, a wave or a blown kiss – such a beautiful old lady. Our bay was our family outside of visiting hours and so one day we decided to write our nicknames on bed whiteboards, in bed order: Nana bay, Nurse bay, Guru bay and baby bay; obviously all patients and not nurses. As well as looking after each other we also cared for each other and wanted to lift each other’s spirits. One day I suggested that we go outside, sit outside in the sun and play a game that Sam played with her daughters when they came to visit. The game is called Rolit and I highly recommend you purchase it! We weren’t allowed to take Sheila but the rest of us (with mum and Stace) went and played; Sam being the instructor and referee! I was still learning about myself and playing that game made me realise I might be slightly competitive as I had to tell Sam to stop helping the others! It was a beautiful afternoon.
Nurse Bay was a lady called Gaydon who was constantly looking after us other three. Mum or Stacey had told me (in several weeks’ time) that on the first night of me being in the ward, after being transferred from ICU, they really struggled to leave me. Gaydon had reassured them by telling them not to worry and that she would keep an eye on me, I think they probably really needed to hear that. Nurse Gaye also gained her nickname for being the first response every time Sam struggled in the night, I won’t tell you her illness as that is her story to tell but it was serious and she although she was on the mend, she still could have died every single night. After two days of knowing Sam, my scariest thought whilst being in hospital was that her family, myself and the world might lose her. However, her strength, intelligence and determination made sure this would not happen despite the odds!
Every time I start to write again I have to reread what I have already written. This makes it more difficult with every word I write!
You may relive horrible memories more than once, a consequence of the short term memory loss. If help is offered, accept it or at least take the leaflets for in the fire you might be ready to – this advice is to family and patients.
One evening, after a particularly bad day, I decided to read through my emails I had sent over the years to try and jog a few memories. Not before long I came across ‘Account one’, an account I had written about the time I had spent in Crawley mental hospital. Whilst reading it through and silently crying I came across a line I had written that says “the affect that my actions had on my parents was something I will never forget”. Ironically and horrifically, not only have I forgotten them but I have repeated their pain and, even worse, added Stacey into the mix. I’ve carried on reading and am starting to believe this whole drama was destined all along. In the same paragraph I have written about how memories and emotions go hand-in-hand and by this sentence I am wishing I was successful the first time.
A soft, quite voice asks if I’m okay, so I turn my head to see Sam’s indescribably comforting eyes and every part of me breaks. I choke through the tears a shortened version of what I’d been doing and read out the paragraph I was trying to get through until my tears mean I can cry no more. Through her inspiring strength she gets up, sits on my bed and rocks me as I weep. A lot of wisdom is shared, I’m calmed and she shows me YouTube videos of a rehearsal and a dance version of the song “This is me” From The Greatest Showman. I start listening by thinking my version of ‘This is me’ is someone destined for death, but by the end I have regained my strength, determination and happiness for the turn of events that have made me who I am! Somehow I’ve gone from wanting to die to cloud nine within 20 minutes!
I then go on to beat her at Rolit on my second ever game.
It was my last week in hospital, the doctors and nurses had very much hidden this information from me which I imagine is to prevent any disappointment should things not turn out so, I had several funny turns. The first I had suddenly gone stiff, I couldn’t move my arms or say anything and my eyes were flickering uncontrollably. I was then surrounded by nurses, one in particularly holding my hand and the rest of my arms were violently shaking. She was speaking to me, telling me to breathe and asking me questions. As soon as I could I answered with slight nods of the head. I don’t remember much of that other than trying my hardest to say “help”. When I finally came out of the episode the first words I spoke were “don’t tell mum” which is funny because the first words I was able to write at the beginning of my illness was my mother’s phone number, missing only one digit. I find that quite impressive for someone that had no memory and still (a month or so later) struggles to remember their age.
I believe the second funny turn was very much similar and was noted to last around three minutes. Upon consultation with the doctor I was told that these may be anxiety attacks as opposed to seizures as I was responsive towards the end of them. I am still having them, their frequency is unnervingly quickening but the diagnosis of anxiety attacks is reassuring.
I was taken for a MRI-scan after the second attack with the results showed two patches of scar tissue on left hand side and one on right hand side, this was more than the original scan and was done because of the anxiety attacks. I may be physically improving, getting better with movement and speech ability but this put a fraction of doubt in my mind that perhaps this illness could still be active? Let’s be positive and just pretend we are certain onwards and upwards is the way my health was going.
One of my Occupational Therapists gave me some coping strategies for when I felt these attacks coming on, these included breathing exercises and making sure I was in a safe environment; laying down and with someone (Stacey) aware that they may be happening. My O.T. was a really funny lady who I enjoyed spending time with during my recovery. Our last session together she had me doing verbal and physical tasks in which I scored 94/100 (better than she would have got – her words not mine!). One particularly memorable task in which I have bullet pointed to trigger the memory was that she asked me to think of as many words starting with the letter P as I could in 1 minute. Now for someone who had no filter and is also a lesbian I managed to get a surprising number of words that may be associated with the male organ. The funniest is thing is that she had to write them all down – that is one workbook I would like to see again!
*
As I get better I get more cheeky and banter with the nurses, I think in the end they kicked me out rather than released (couldn’t remember the word for discharged at the time I wrote this so had to google it).
I can’t remember where or why but I asked Stacey if the story of me being elated as soon as she gave me back the ring was again a false memory. She told me that what really had happened was that I had looked confused and said “I thought you were with Polly”. Before this conversation I had told everyone that when she handed me the ring I had beamed and asked for a kiss. Hearing that for a period of time, however long or short, she I had lost all knowledge of us being together must have broken her heart; not that she would have showed it. Stacey, I hope you know now that you are the one thing I am certain of.
*
As I have had to re-read this every time I go to add more, I have improved the sentence structure, punctuation etc. As well as adding more information that may reflect an improper version of my short term memory (as the above paragraph shows). I was also going to check the timeline of above but I think I’d rather be honest and say I’m not sure win what order this all happened. That is okay though and if you decide to share your story then know that piece of information from the start. Maybe it would have been more helpful if I hadn’t proof read it every time I wanted to add more, it certainly would have showed true progression but the people that may read this first may be the families and loved ones of those suffering and therefore clarity might be exactly what they need.
I won’t tell you about my recovery now, I am just starting mine, just know
- It’s okay to be scared, it really is only natural
- There is no certain timeline, as much as you want to create one
- Your loved ones know best
- When you and your family are ready, check out this website www.encephalitis.info
*
I’ll end on a couple of funny stories I do remember about being in hospital:
On Grand National day there was a horse competing called ‘Total Recall’, so obviously me and the family all put a few pounds on this one to win. It did not. However, it tripped twice over the hurdles and still finished the race so I think we are all happy in accepting that metaphor over the couple of hundred pounds we could have won.
I was given the pieces of paper I had first used to communicate with the family which induce a variety of emotions. I got them out one day to show someone but the ink was all smudged as if they had been wetted. We had four people searching my clothes and body to see if I had wet myself without knowing – I hadn’t, thankfully! I had just forgot to put the lid on my ice tea.
And last but not least, in the early days of being in Treble Ward, when my speech was improving but my brain capacity was still somewhat…slow. Mum had asked me if I remembered that Nan was pregnant. I was shocked and said no and wanted to call her to congratulate her and ask if she knew the sex? Nan is 76 by the way. I called her and she was just as confused by the question as I was by her response. No, my 76 year old grandmother is not pregnant, my mum just thinks she is funny.
“You don’t know who you are but just because you’ve had an illness doesn’t mean your personality has changed, if you’re genuine.” – Sam
One month out of hospital
