So what's been happening for me the past 6 years? Well, they've been significant to say the least. As I'm writing this, I'm marking the sixth anniversary of my first seizure. Now, I wouldn't say I'm celebrating this, because they aren't much craic, but I am acknowledging it. What followed that seizure was a lot of confusion,a lot of questions and a nice relaxing week in Portlaoise Hospital. Being fairly local, I had visitors around the clock and in general a very fun week.
However, after many tests I returned home with very few answers and a brain scan that I was told showed some swelling. A week or so later, a specialist told me it would be best not to fly or swim in the coming months, but from what we understood that was all there was to worry about. Epilepsy was one thing we all associated with seizures, so my family etc. thought that was an obvious diagnosis. Or even one of those one off seizures people have for no real reason. But my brain scan gave no answers or indication that anything in particular was wrong.
So it was time to move on and get back to normal life but to be fair, I struggled. I turned 19 in the weeks after leaving hospital and had to come home early from a night out because I was so fatigued. Surely, not normal! Little things weren't adding up, and I still wasn't returning to my old self. Bits of me were missing, and for those around me it was hard to pinpoint. Little things kept happening, but everything was intermittent so it took a few days for people to really realize just how off I was. Everything came to head when I took a family holiday down the country with my younger brother and my parents. Although I have very little recollection of any of this, I have pieced bits together. A few things happened on the short trip. My family began to notice my slurred speech more as well as listening to me often complaining about headaches. We went to a restaurant one evening, and I couldn't seem to aim the fork to my mouth. My co-ordination was all out. Not only that, but I couldn't keep much food down. On the journey home, I had my earphones in listening to my iPod (somethings never change!) and I leaned forward to the front seat, handed Da one earphone and said, 'Da, put that in your ear and you'll hear the music too.' Now, my Da has an fairly good understanding of technology and really living with me, such a thing didn't need to be explained. I had just said one of the most obvious things and it has stuck with my Ma all this time. She found it so strange at the time. I also referred to my iPod as my 'appetite'. Things were becoming jumbled.
After our little break, we returned home. I got more unstable; I couldn't sleep at night, my emotions were highly sensitive, I was crying all the time and my speech was deteriorating. Was I having a stroke at 19? Ma tried her best to get back in touch with the specialist, desperate to tell him that something was wrong. She was told he was on holidays and no one could take the case until he returned. Desperate for help, she turned to our local GP, and with her help, kindness, knowledge and understanding, I got back to Portlaoise. From here on, it gets very hazy for me. The seizures started coming more frequently than not and I was transferred to ICU in Portlaoise. A long, tough road lay ahead.
So let's fast forward a little. I'm gonna skip all the bits I can't remember. So that would be being transferred to Beaumont Hospital, being put under the care of one of the best Neurologists in the country, Prof. Orla Hardiman and a shaky few days on life support. I'm told I was put into a induced coma, because the doctors needed to buy time. As this stage, I was at status epilepticus, which means I was in a state of persistent seizures and a coma was the safest state to be in. However, there is always the risk that once taken off life support, the patient will no longer be able to breathe by themselves. But it was the only option.
I was tested for eeeeeverything and in my early Beaumont days I was treated for viral encephalitis, which is a viral infection that causes inflammation of the brain. During the treatment I came out in a rash, which was my body telling the world that I didn't have viral encephalitis. It was a video conference between my own doctors and some American doctors, where my case was presented and some video footage of my around the clock involuntary movements was shown, that my doctors found reason to believe I did have a form of Encephalitis, but a very rare form, which is auto immune triggered, called Anti NMDA Receptor Encephalitis. This really means that an anti body had formed in my blood and found reason to attack my brain. My body was attacking itself and it's main target was my brain. Bit by bit it was travelling through my brain and wiping out certain bits of function as it went. Cases had only been diagnosed across seas. As well as this, it wasn't something that would show up in any regular blood tests. A specialist test would be required and with a confirmed diagnosis taking three months, doctors decided to treat me blindly for this rare condition starting in September 2008. I was to be one of first people in Ireland to be treated for the condition and with a treatment of IvIg and steroid, I started to come back to life.
But what was left of me? Well in summary, a girl mostly confused by her surroundings, but without the brain power to feel confused, a girl who struggled to communicate and was unable to string a sentence together, basically a child stuck in a 19 year old's body, and a girl who was oblivious to all this. I vaguely remember a feeling of confusion, but not that deep, utterly horrifying confusion I should have felt. More of a calm confusion, if that even exists. Why was this? Simply because I was so naive. I believed everything would be fine. I was grand sure. I was in hospital and I was fixed from this weird thing that happened to me. All these lovely people were sending me cards, wishing me well, people were coming to visit and all so happy to see me. I felt loved and I felt like everything was going to be okay. Was I naive or just positive? I think naive! And this helped me to be positive. I had returned to childlike ways and with that came a kind of naivety. Honestly though, I won't ever forget the embarrassment of trying to talk to people and the absolute inability to get words out. It was like they were all there, but when I went to look for them, they were missing. I saw a poster that described it perfectly. 'All my words are stored in a filing cabinet, but in the wrong order.' Communication was tough for me. I resorted to clapping my hands to replace a word I couldn't think of. Talking to people wore me out.
My first night in Dun Laoghaire.
29th Oct. 2008
My journey then brought me to the NRH in Dun Laoghaire, Co.Dublin. I was their first patient to receive rehabilitation after acquiring a brain injury resulting from Anti-NMDAR Encephalitis. You heard right, I was now an Irish girl living with an acquired brain injury. How life can change in an instant. My transition to Dun Laoghaire wasn't easy. I disliked the building and missed my old surroundings. I was soon to learn change doesn't suit people with ABI all too often. With the help and care of staff, I soon settled in, in anyway I could but it was never easy there. As naiveas I was, I was slowly coming to see the world around me again and I saw as much strength as I did heartbreak in that building.
I was to receive intensive speech and occupational therapy, as well as some physio-therapy. The overall aim was to get me back to a point where I could return to college in NUI Maynooth and finish out my degree. I had one year completed prior to my first seizure. Again, I was fairly positive that I would achieve what we were setting out to achieve. Some might say the positivity was innate, because its the type of person I was. But this new naive Niamh, seemed only to have the ability to worry about the little things, with not a thought given to the absolutely massive picture that was facing me; rebuilding myself to the person I once was, or as close as possible. My short memory has been badly affected, and I was dealing with a blank spot of two or three months. I had trouble remember who people were. I had trouble communicating and making simple decision. My cognitive skills were altered significantly, and I no longer had the brain power I once did. But my brain was young and still developing so I had it all to gain back. On beginning rehabilitation, doctors couldn't promise much because I was their first case. But miracles happened for me in those 8 weeks. I learned to talk again without realizing and although I was embarrassed by my speech for almost two years following, that was just a personal thing. I got amazing groundwork in Dun Laoghaire. I learned to plan things again, make decisions for myself, and use my brain again. Those 8 week truly transformed me. But a new type of healing begins when you return home.
But here I am, marking 6 years since my first seizure and thinking about the time that followed. Now on the verge of turning 25, although I can only look back with a blurred memory and pieces I have put together from stories - so fake memories if you will, I am celebrating! Because against the odds, I made it through. And maybe it made me! Crazy things happen in life, and for me this crazy thing has become an irreplaceable part of who I am. I am now living with an acquired brain injury or brinjury as I lovingly refer to it and an auto-immune condition too. For the most part, any neurological problems I have, have been dealt with as much as can be and it's mainly the auto-immune element of the condition I'm dealing with. This mean monitoring my blood to ensure the ever present anti body doesn't gain too much power within me again so that I might relapse. I do this with the help of a fantastic Neurology team and Immunology team who deal with me most the time now. I'm on lifelong medication; from time to time I suffer, maybe with fatigues, aches, pains, headaches etc., and don't get me started on the frequent little lapses I have as a result of my brinjury. But now, I reckon it's all part of my charm. This is also why I am still talking about 6 years down the line. A brinjury is a lifelong injury. I will always struggle with certain things because parts of my brain will never heal, but it doesn't mean I can't do certain things, it just means you learn to do them in a different way. I will probably continue talking about it for years to come because one person reading this, a tweet or a Facebook status might be the difference between someone getting the right blood test or not. And honestly, that could make all the difference for someone. I haven't explained Anti-NMDAR Encephalitis much here, but misdiagnosis has been fatal and one post could make a difference for one person.
I'm celebrating 6 years of a second chance. Sounds so cheesy, but my time to leave nearly came and just like that it went again. I was given a second go. I don't necessarily think it was to redeem any wrongs I did in the first few years of my life, but more so to continue to live a happy life. And that's what I'm doing. Those first three years of recovery were a struggle, emotionally and physically. I was finding it hard to adjust to a life that had changed and left me behind, I was tired all the time and my confidence was at an all time low. For me, the confidence and the speech were the hardest things to deal with. It's so hard to recover when your confidence gets such an absolute wallop.You don't know who you are, where you stand and everything is being reevaluated. I had this picture of the person I used to be and you are battling with yourself to be that person again. And it's not always possible. They say acceptance is a major step in any healing process and for me it was key. When I stopped wondering why this had happened to me, and my life had been turned upside down, and just accepted that it had, things started to fall back into place again.
TBI Hope and Inspiration. This quote really sums it up for me.
I made it through my college degree with a little extra help from the Access Office and one very influential access officer in Maynooth. To this day, I say I owe my college degree to her, because only for her I would have walked away. She was always my rock of support and I definitely know she was put on my path for a special reason -Hi Maeve! :) I also went on to get a Master degree under my belt, meeting more amazing people. The pride in getting that piece of paper still makes me emotional because absolutely everything is a bonus.
I was blessed that an network of amazing friends surrounded me. Everywhere I turned I had support and encouragement. I was surrounded by positivity and so it was the only way I knew how to approach this brain injury craic. If I get started about my family and friends, I'd never finish. They are the most supportive, encouraging, understanding, inspiring and living people I know. I'm surrounded by greatness and I learned to be great again from them. I can't ever thank them enough. They keep on giving, in a way I can never return but I hope they know the role they have played in giving me a life again!
I'm celebrating 6 years of finding a happy life again and being able to live it. My world is full of love; love for family, friends, Meitheal, work and music. I invest time in what I love, because I've been lucky enough to almost have it taken away. An extra week voluntering in Meitheal with my favourite people in the world is a bonus, another concert is a bonus, an evening in front of the TV is a bonus, a walk and chat is a bonus and any achievement large or small is a bonus. That's not to say I don't complain, I'm only human! But I do have a massive appreciation for life and love to enjoy it. So after this massive rigmaroll of writing for the first time ever, I have no point to make really, only I'm delighted really. To be here, 6 years later, living the life I am, with the people who are in it. And that I'm extremely cheesy. Which is always a bonus.
Life is good!!!