My name is Niamh, I’m 26 years old and I grew up in Co.Laois. I attended school locally in Mountrath and went on to do my degree in Theology and Arts in NUI Maynooth.
It was after my first year in Maynooth in 2008, that I became sick. I completed my first year exams eager to get home for the summer and spend time with friends. For the most part the first two months of the summer went well. However, the 29th of July, 2008 came around and it will be the day that forever changed my life. I have very little recollection of the day but I do remember a strange jerking movement in my left leg that I had no control over. The movement came and went throughout the day. However, when it returned later that evening, I made a point of saying it to my family in the sitting room, after which I went back to the kitchen where my friend and I were cleaning up. Within moments I was in the middle of my first seizure. No warning signs that would indicate any such thing was on the way but I guess the movement in my leg was a sign that something wasn’t right. An ambulance was called, which of course I have no recollection of. The seizure bought me a week’s stay in Portlaoise Hospital, during which I was very well and thoroughly enjoyed all the visitors. Scans and tests were done and appointments were made to see some specialists. I was sent home after a week of no further signs of any problems. I attended a Neurology appointment in The Hermitage, where I was told there was some swelling on the Hippocampus of the brain, most likely from the seizure. I was advised to avoid swimming of taking any flights for a couple of months. This seemed doable but I was also conscious of the fact I had had a seizure and no one could really tell me why.
As I returned home and tried to face back into normal life it was clear that very little was normal anymore. I was no longer the Niamh I used to be. Was it fear of another seizure? We thought it was a possibility.
The reality was, I had went from getting a good night’s sleep to barely sleeping at all, crying a great deal for what seemed like no reason, I was agitated and easily irritated. I turned 19 in the weeks that followed, but so much of me seemed missing. When I look at the pictures from my 19th birthday my eyes don’t look like my own. As the weeks went on and we passed into mid August, my parents became more worried. I was often confused and my speech seemed mixed up. Just when they thought they noticed something, I’d be fine again. Everything was intermittent, so it was hard to pinpoint. I’d answer the door to family members, they would greet me and I would look at them blankly or completely confused and just walk away. It became evident something more was at play, so my parents tried to make contact with doctors again with no luck. Eventually my GP got me back into Portlaoise as the symptoms became less intermitted and much more obvious. I was admitted to the ward and as my parents left on the first night I had a major seizure. I was transferred straight to ICU, awaiting a bed in Beaumont.
When I arrived in Portlaoise the second time, on the first day I could speak, the second day I could only write and the third day I could do neither. As each day passed, I was disappearing further into the unknown. On the 2nd of September 2008, I got a bed in Beaumont. Upon arriving in Beaumont, I was admitted to the Neurology Ward under Prof.Orla Hardiman. Countless tests and scans were done as I completely deteriorated. I had numerous seizures and involuntary movements. I’m always thankful that I don’t remember this period of time. A conference call with American Doctors was scheduled for the 18th of the September so the doctors were given permission to video record my involuntary movements so that they could show the other doctors. On the 16th of September, I went to status epilepticus, a state of constant seizures. At this stage I was purple in colour and my life was hanging by a thread.
The decision was made to put me on life support so as to give my organs a break. There was still no indication as to why this was happening. I was tested for everything and nothing was adding up.
During the conference call, doctors suggested I could be suffering from a rare auto-immune triggered Encephalitis; one that doesn’t show up in average blood tests. We were all out of options, so doctors blindly treated me for Anti-NMDA Receptor Encephalitis, a condition that had only been discovered a year beforehand which involves antibodies forming in the blood and attacking the brain. I slowly began to return to life, but I had a long road ahead. I would not get an official diagnosis until Christmas week of 2008. The appropriate blood tests, at the time, took three months for results. But I’m always thankful of the chance the doctors took at that time. Of course it was well informed and the reality is they were all out of options.
As I started to return to the world, a fraction of the person I once was, the next stop for me was 8 weeks rehabilitation in the NRH in Dun Laoghaire. If only I could really describe the reality of the person I was when I arrived in Dun Laoghaire.
I was a shadow of who I used to be. My speech was child like, I was scared, I was confused by simple situations and I really just wanted to go home. What lay ahead was eight weeks of intensive speech and language therapy, occupational therapy and physical therapy to steady myself again.
So many things that I once knew were suddenly unfamiliar to me. This included people, songs, prayers and even myself. My perspective of the world was strange at the time. Cognitively, so much confused me, but I still had an awareness that I had been very sick and I was trying to get better. With this also came an naivety; I knew things were bad but I had no idea how bad. I had no idea how compromised I was. Everyone told me everything would be okay. And I believed them. I didn’t have the ability to understand just what lay ahead, and in so many ways that protected me.
I remember the first family meeting where the patient, family, doctors and team meet to make a plan for the rehabilitation journey and set goals. I didn’t say much because I couldn’t. Sentences didn’t come easy to me and I was embarrassed by my abilities. The goal was to get back to college. Even if it couldn’t be a reality, it was something to work towards. Remember, I was studying Theology in college and at this stage I didn’t even know the Hail Mary anymore. As the weeks went on, I got into a routine quickly and going to my therapies were like classes. I had amazing help and support in Dun Laoghaire. There were many nights of tears, frustrations and fear but each day they helped to piece me back together again. I was especially conscious about my speech and really struggled to communicate at times. However, working with my Speech and Language Therapist was only ever enjoyable and rewarding. The experience was made so pleasant. I remember being upset that I didn’t know lyrics to songs anymore and my Neuro Psychologist taking me into her office and getting Waterfalls by TLC up on the screen so that I could learn the words again. Talk about going above and beyond!! As I prepared to leave Dun Laoghaire, we had a final meeting with the team and my family. If I recall correctly, I did my fair share of talking this time around. When I look back on my time in Dun Laoghaire, I find it so hard to believe how much those eight weeks changed my life. Those eight weeks gave me my life back. Without the expertise of everyone there, I can’t bare to think what my life would look like now. They gave me the tools that I needed to face the world again and contribute to the world in a way that’s true to me. Those eight weeks were absolutely instrumental to the life I live now and I’m so thankful. I was discharged from the NRH on Christmas week of 2008, the same week we got a phonecall from Beaumont with an official diagnosis of Anti NMDA Receptor Encephalitis. I was the first patient the NRH worked with who had this condition and I was one of the first five or so to be diagnosed in Ireland.
I took the remainder of the year out from college. I volunteered at a local school to stay occupied but all in all it was a tough year. My confidence was shattered. I apologized for my speech so much even when it wasn’t bad but I was so self-conscious. I felt lost and soon realized that rehabilitation continues long after the NRH. I had a lot of work to do still but I had plenty of support and love around me. It always got me through.
I was now being treated for a life long autoimmune condition under the care of Mary Keoghan’s Immunology team in Beaumont as well as keeping an eye on the brain with the Neurology team. Because the condition started in my blood, my blood has to be monitored and controlled so that the antibodies can never be strong enough to attack again.
I eventually got back to college, completed my second year over two years and then continued as normal, finally getting my degree. I went straight to Mater Dei to do a Masters in Chaplaincy Studies and Pastoral Work.
I think it was about three years after when my Gran said to me, “You know, I think you are back to yourself again!” I have been working as a retreat facilitator, part time for the past 3 years, which I thoroughly enjoy.
The past few years have been some of the most trying years of my life, for both my family and me. I’m always aware that they remember all those horrible and scary times that I have no recollection of. Even though the experience broke me in so many ways, it also made me. It has very much become apart of who I am and apart of myself that I have learned to embrace. As a result, I now live with an autoimmune condition and an acquired brain injury, both of which are invisible to the eye but at times really challenge me. Fatigue still hits me hard, routine is vital in my life and many situations still overwhelm me but when I reflect back on my experience and look at the happy, fulfilled life I live now, I feel those eight weeks in Dun Laoghaire were key for me. They are absolutely instrumental to the life I live now. I’m lucky to be able to say that despite challenges, I really think I’m in the position to build my life into whatever I want. Sure, as I invested time in getting well again, some things in my life took a bit longer, but in the overall scheme of things, I’m happy that things are as they should be and grateful to be well again.