When I first woke up this woman called Martina and her daughter came into visit me.
She hugged me and looked at me as if she knew me. I didn’t know who she was or how I knew her. This woman was in the bed next to me for six weeks or so, who I used to cuddle into when I was scared. She used to tell my mam and I as I got sicker; “The darkness before the dawn,” meaning things often seem at their worst just before they get better. Thankfully she was right despite what the doctors were saying and how my body was reacting to treatment. A cocktail of treatment that I was given in fact, I unfortunately wasn’t responding to treatment.
I was admitted into hospital on the 31st August, 2017, just twelve days after my 21st birthday. This was after spending 36 hours in a psychiatric unit where I was diagnosed with (initially) depression and anxiety. Then they decided to add in borderline psychosis, at that stage they had written me off and didn’t think to listen to how I was actually feeling which was scared, alone and not mentally sick.
I felt physically sick. I couldn’t eat without feeling nauseous, I was sleeping all the time, I couldn’t sit still and I couldn’t get the words out to tell my family I loved them. My speech was so bad that I couldn’t even stop all of this happening to me, I couldn’t stop my parents driving me to this psychiatric hospital and admitting me. I couldn’t stop the psychologists and psychiatrists diagnosing me with mood disorder after mood disorder. I couldn’t speak because this neurological disease had taken my voice and my life.
I remember lying in the dark, cold room in the psychiatric unit with brown, thin bed sheets, I was so tired and confused. The room was spinning and I couldn’t think straight. My brain was mush and so fuzzy. Fuzzy being the word I best used to describe the torture that was going on in my mind. A nurse walked in with a cup full of antidepressants and sedatives. After I knocked back the medication that wasn’t helping whatsoever, the nurse left the room and I closed my eyes. I fell asleep and I wouldn’t wake up till the 12th November. Imagine falling asleep on the 31st August and not knowing you wouldn’t breathe fresh air, laugh or cry, tell your boyfriend where you are and what’s happened to you, tell your friends you miss them, not do any of this or anything in fact till the 12th November.
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The next day, a very clued in psychologist did a simple neurological test on me. She got a stick and rubbed it up and down my foot to which I had no reaction to. She told my parents, this isn’t psychologically, it neurological. I was rushed to a private clinic to get an MRI. Not even 24 hours after my MRI, I got rushed to the emergency department with a cyst on my brain the size of a golf club.
My reaction to the discovery “Everything makes sense now, it all makes sense.” So the cyst on my brain was causing all these symptoms we thought, my strange and erratic behavior, extreme fatigue, loss of speech, extreme anxiety and my fuzzy mind. One of the top neurologists examined me in the emergency department. He told me parents that he couldn’t take me on in the neurology ward, that there was nothing neurologically wrong with me and the cyst is a pineal cyst which is one of the most common brain cysts. It should have no effect on me and my life. I was then admitted to a ward where they discovered from tests that I was fighting some sort of virus but they had no idea what it was. Antibiotics were pumped into my weak body and I soon became very dehydrated. At this stage I was starting to fall into a catatonic state meaning immobile and unresponsive.
The same neurologist who examined me in the emergency department visited me in the ward alongside his colleague who both got a shock when they saw me and my deterioration which had occurred in the space of five days. They both examined me again, and suspected I had encephalitis. Inflammation of the brain.
It all makes sense now. A lumbar puncture was taken, first of many and it was sent to Oxford, England, to be tested for encephalitis. My dad was in work about three weeks later when he got a phone call off one of the neurologists who said; “We know what she has, NMDA Encephalitis.”
My parents and brothers initially relieved we finally had a diagnosis after three months of confusion and symptoms. This was until they found out this is an acute form of encephalitis that has high death rates.
LIFE ON A NEUROLOGICAL WARD
I was admitted to the neurological ward, the beautiful ward I called home for so long. I don’t miss being in hospital but I miss the people who I will always call family. The nurses became my best friends and despite the team of doctors acting professionally, they secretly loved coming in to see me every morning because I always had a smile on my face, even if I had tears in my eyes.
The strange thing about memory is, my heart can remember so much more than our mind can. I know this because even though I was in a catatonic state and coma when I was very ill the minute I saw my favorite nurse Liz (day nurse Liz) I knew by looking at her face, I trusted her. One of my first memories of waking up was having to get a lumbar puncture. A lovely, kind nurse called Karen was keeping my head steady as I screamed in fright but I didn’t know Karen, I wanted Liz. I trusted her. I shouted “I want Liz, I trust Liz more.” Even though I had been asleep for all the months Liz had cared for me and my mind shouldn’t remember her, I knew in my gut that I needed Liz. My unconscious remembers what I can’t remember.
My first few weeks in the neurological ward, I started on IVIG treatment and steroids which had little to no effect. It was like taking a placebo. I declined and declined. Then came the worse treatment, plasma exchange. I got two very itchy tubes inserted into my neck which I tried every second of everyday to pull out. So they took them out of my neck and into my chest. I can say now, I can’t wear a bikini without two lovely scars showing but I don’t mind.
My doctor did offer me plastic surgery to get the scars removed but why should I? It’s just a scar, I have much worse mental scars. Plasma exchange is the removal of plasma from the blood, it removes the disease from the plasma. The red blood cells, white blood cells and platelets are returned along with a replacement fluid. I had to be sedated for the procedure but sometimes, most of the time I would wake up because the sedation would wear off by the time I was seen to as an emergency would have to be seen first. I would wake up screaming, the two tubes in my chest attached to be a big dialysis machine that kind of looked like wardrobe but had my blood circulating in it.
When I woke up, I was scared and I didn’t know where or was or what was happening and all I wanted to do in my ill state was to escape. I tried to pull the tubes out of my chest which would have led me to bleed death if I had succeeded. So nurses pinned me down until a doctor could come and inject sedatives into my leg which was already bruised from my knee right up to the top of thigh from previous sedatives.
On my 13th and final plasma exchange treatment, my boyfriend and his mam brought me up to the fourth floor along with the porter, Dennis. My favourite porter who told me when I woke up, I’d be embarrassed if I knew how many times he held my hand. It came to the point where my boyfriend and his mom had to leave me. My boyfriend told me I wouldn’t let go of his hand and I was terrified. I knew where I was going and I knew it was going to hurt. He said as the lift doors shut, I sat up, put my hands out reaching for him and tried to scream but nothing came out. I know this haunts him still to this day, I suppose he felt as helpless as I did.
Plasma exchange didn’t work and in this space of four days I lost half a stone and I was quickly fading away. I lost the ability to swallow and I had to get my salvia suctioned out of my mouth often to prevent me choking on my own salvia. I was being fed by a feeding tube but I was continuously losing weight and if I didn’t die from brain damage, my organs were going to start failing from losing weight so quickly. I weighed six stones and five pounds and my doctors didn’t think I could handle the last line of treatment, Rituximab.
I didn’t weigh enough, but this was my only option. They blasted Rituximab into my weak body. It wasn’t working, nothing was working and my family were starting to come to terms with the fact that my short life was going to end at 21 years old.
On the 12th November, my mam asked me if I was tired, because she always spoke to me because she knew I could hear it everything around me despite being unconscious. I never responded in all these months but that night I said “yes.” This followed by my dad getting his phone and recording a video, asking me to say my brother’s name, my nephew’s name and mam and dad. I don’t remember waking up, it took me a while to regain full consciousness and my memory was very poor.
The first few days are blurry, I just remember getting my mouth suctioned and feel the liquids tickling my throat as they went down my feeding tube. I woke up on the Sunday and my mam came into see me on the Monday morning, she asked me to rate the pain out of ten and I said nine, even though it was a hundred. This was the Anti-NMDAR Encephalitis leaving my body, the doctors said, and that it was going to hurt like hell. Every bone and muscle in my body ached, every time I opened my eyes it took so much energy. My body was so weak and everything was blurred. Every morning the doctors would do their rounds and every morning I would ask “What’s wrong with me?” And they would say “Anti-NMDAR Encephalitis” and I would forget a few minutes later. I couldn’t remember anything, where I was, what month it was, the past year of my life and who I was. As you can imagine, it was extremely overwhelming.
My recovery sounds difficult. I had to learn how to walk which was quick despite my doctors predications. Realistically, it should have taken me months to learn how to walk again but it took me days. Learning how to talk wasn’t as easy. At least when I was learning how to walk I could fight through the pain of my muscles aching, but when I was learning how to talk, my brain was blocked, it was damaged. I have an acquired brain injury now, the damage has been done and there’s not much that can be fixed about that. It’s not like a broken bone.
Despite this, I worked really hard and cried a lot when I couldn’t do simple things that a 5 year-old could do. I was basically a two year-old in a 21 year-old’s body and that was extremely frustrating seeing as just 6 months ago I was living a normal life, working in a local shop, finished my second year studying psychology, and had a boyfriend and a bunch of friends. I couldn’t do anything for myself, I lost all control in my life. I needed help with everything. I couldn’t feed myself, dress myself, wash myself, even the simplest of things brushing my teeth.
When I looked into the mirror, I didn’t see me. I didn’t know who I was. Not that many twenty-somethings know who they are but I was struggling to even remember my own name. I would get overwhelmed very easily and have sudden outbursts of crying hysterically and then laughing uncontrollably.
This is normal, brain injuries don’t just affect you physically but mentally. My world was turned upside down, I was happy I took my first steps but I was sad I was 21 years-old and celebrating my victory of learning how to walk again, I’m 21 and I shouldn’t be celebrating this. So my emotions were all over the place, it was a very confusing time for me. You don’t experience pure loneliness until you have to spend a night in hospital or even 105 nights in hospital alone. Alone in your illness and literally alone, lying there wondering if you’ll ever get out and ever get better. I was in a room with three other wonderful patients but the room was constantly changing every week or so, but my bed remained the same with me in it. I was the second longest person in the whole ward and the youngest.. and the sickest.
I would get close to certain patients but as soon as we became friends they would have to leave. They ranged from all ages from 20s to 70s, I would be friends anyone as long as they are kind. Every patient thought me a new level of perspective. Each patient had been through some sort of trauma in their life which inevitably led to their illness. This was similar to my story, it made me appreciate the little things. Even though I was dying, at least I wasn’t dead. That’s how I’ve looked at everything since I got sick, it could be worse.
The hospital don’t prepare you for coming home, they aren’t equipped to. So you have to learn the hard way and do it on your own. I’m very lucky, I have an amazing support system to which I call my family and boyfriend. My amazing parents basically took on my illness with me. My mom gave up her job to be my 24/7 carer.
When I first came home, I was so embarrassed to leave the house. I was so ugly and I felt disgusting in my own skin. My face was twice the size of what it was due to the steroids and the Rituximab had given me a break out. I felt awful. I withdrew from my friends, I didn’t know if they’d accept me or not. I didn’t know if they’d think I was different and not like me anymore.
I soon realised, I had more friends than I thought I had and the ones that really mattered stuck around and were there for me. I just had to explain what had happened to me because they were as confused as me, they saw me lose my voice and act strange before I went into hospital. They deserved to know what happened and once I explained, they accepted me and that really helped boost my confidence.
Coming home was difficult, it was hard getting used to sounds and the brightness of the outside world again when I was confined to a ward which was made for people with brain injuries.
Everything startled me; the kettle, the hoover, the brightness of the TV. It was too much, my brain felt overloaded with everything. I would just up to my room and lie on the floor crying. My brain couldn’t take it, my brain was inflamed and damaged and I was very sensitive to sounds and light.
With time and perseverance I got used to this new world post brain injury. I was getting better every day which meant my memory and speech was getting better and I was getting less and less fuzzy. I finally could try and wrap my head around what had happened to me, which is impossible because it was unfair what happened but it happened and I was left to try make sense of it all.
I had lost everything, when I had to sleep on the 31st August I had so much to live for; I had a job, I was about to go into my final year of psychology and I wanted to be a social worker when I finished my degree which would have been now if I didn’t get sick, I had a boyfriend, friend and a loving family. I still have those three important and most important aspects of my life! There was so much loss in my life, I had no control over anything. I would do some adult coloring (mindfulness coloring) it was very useful in helping me have something that was mine and only mine. My little time to myself minus encephalitis and medication. Having to stay in lines while coloring in helped me feel in control of something, to which one recommend to anyone feeling a bit lost. It’s still something I do but now it’s just for fun and relaxation.
My doctor told me I wouldn’t get home for Christmas but I got home two weeks before Christmas.
My rehabilitation doctor told me I’d have to be an inpatient for a few weeks but I never did have to be an inpatient, I just go once a week for speech therapy, occupational therapy and counseling and I’m hoping to start art therapy soon. I got discharged from physiotherapy on my first day. I worked really hard in my own time, I did speech therapy every day for an hour, even on Christmas Eve. I went for a walk every day for an hour, sometimes twice a day for my physiotherapy which I decided to do myself. I decided to keep a progress journal in which I documented my recovery. I wanted to be self-aware of my achievements and my difficulties and I think being self-aware is key to my recovery. Being able to recognize what I needed to work on played a major role in getting better. Everything the doctors told me to do, I did it and more. Not to sound full of myself but you have to give yourself a pat on the back every once and a while. This helps to build your confidence up again.
The difficulties I’ve been left with are subtle. If you met me and never knew I’d be sick or that I have an acquired brain injury, you’d think I was like anyone…. normal. I get tired easily and I can’t do a lot of things I used to but I always try to do them to a certain extent. I have to leave things early because I get tired, but anyone could think I have to get up early the next morning so I have found ways to mask it. I get easily overwhelmed, the crying outbursts stopped about two months after I woke up. Now I can control it, I just removed myself from a stressful situation and breathe until I can deal with it. Since I got sick, my memory isn’t perfect so my life has to be structured and I need to know in advance about any plans so I can be ready on time.
It takes me longer to do simple things like get ready and get public transport because I’m forgetful.
Despite these small difficulties I’m going back to college in September 2018, exactly one year after I got admitted into hospital and got diagnosed with Anti-NMDA Receptor Encephalitis. I’m enjoying my recovery now and I actually enjoy speech therapy now which was my least favorite therapy at the start of my recovery.