Alessia Bellino, Italy, 31yrs (2015)
The onset of the disease
I was a normal, healthy 31-year old woman, happily married, a hard worker, an anthropologist by training; I loved to run, spend free-time with my family and friends, travel and draw comics for hobby.No one could suspect what would happen to me. At the beginning of 2015, I began to feel moody and not myself. I was depressed, very tired, I often had bad headaches, and sometimes I had insomnia. I became a little misanthropic which was strange for me and for my beloved, but I thought that this was caused by work-related stress or by the flu. In addition to feeling stressed, I often panicked without a reason. It was all very confusing, and more so because of my persistent headache. Mentally, I felt overextended but physically I was stronger than ever;I do not know why. I did not stop doing anything of my normal life, just that it took me a lot more energy and fatigue, more than normal.I was taking a lot more aspirins.
March 9th, after an important work delivery, I decided to take sick leave for a few days. I spent a lot of that time in bed or on the coach, passively watching TV and feeling worse day by day, always thinking it was all because of a seasonal flu. In the morning of Thursday, March 12, I went in emergency to my dentist because I had an unbearable headache because I was convinced that there had to be something such as decaying teeth. The result of the labs however, was negative and I came back home very disappointed and worried. From that day on, there is a big memory gap in my life, because I can actually remember only that my husband Marco came back from work in the evening and after dinner, he was lying with me on the couch snoozing a little and then nothingness, for me.
On Thursday, March 12, had the first seizure of my life, for several minutes. I had never had seizures before. Marco called everyone in the neighbourhood, he was scared but very reactive, and, in a while, an ambulance arrived at our house. I was in shock, but I was able to speak and move and answer to the paramedics who rescued me. I can’t remember absolutely everything, but I picked up some of my personal stuff and they took me to the nearest hospital of the town.I stayed in the Emergency Room for some routine exams and fortunately the Neurologist who was on call that night was to bemy actual Neuro Doc. He decided to hospitalize me as soon as possible for more investigations.
The hospitalization and the treatment
The following day,Friday, March 13,I was hospitalized at New Civil Hospital S. Agostino – Estense of Baggiovara in Modena and some tests were done: electroencephalogram, blood tests and cardiological examinations. During that day, while they were testing me for everything that might cause a seizure (from allergy to tumour), I was still able to speak and write text messages to relatives and friends, trying to calm everyone down. Doctors said I needed to do a Magnetic Resonance Imaging(MRI) test for which there was a waiting list but on Saturday, March 14, in the morning, I had my 2nd grand mal seizure. Therefore, they admitted me with priority for the MRI. After this important exam, doctors excluded the possibility of other diseases, but they began to suspect an encephalitis (in 2011 in the same hospital the Neurologic medical staff had treated another case of a girl quite similar to me). I had my third seizure after the MRI. A couple of hours later, they also did alumbar puncture. Fortunately, in that moment, I had no more seizures; I was quiet and collaborative for such an important test.
The first result showed a high value of CSF (cerebral spinal fluid) that confirmed my encephalitis. Immediately they started by following the protocol for similar cases with the therapy for viral encephalitis, even if they were already suspecting an autoimmune type of the disease. My husband was beside me all the time and he can remember everything about my condition. Until Saturday, he says I was strange, but during the night, I turned into something else – not myself anymore, something alien that possessed me with a demonic force. That Sunday, March 15, I started to scream, run away from the bed, babble, cry, laugh in an exaggerate way, as if I was not myself. My husband, my parents and my brother were very scared because I didn’t respond anymore to anything or anybody in a reasonable way. The demonic version of me was unmanageable and the apex of this condition lasted for two weeks, more or less. Then I slowly deterioratedinto a catatonic state. I spent 100 days in total in that hospital, unconscious for most of the time.
On March 17, I started the therapy for autoimmune encephalitis, even though doctors had not yet received the confirmed diagnosis of the antibodies test from the Italian centre of Treviso. A few days later, the test results for viral encephalitis came back negative, so they suspected that they were on the right track.On Wednesday, March 18, I started to receive IVIG, followed by high doses of steroids. After that, on March 30 I began plasmapheresis treatments but on the 29th I had already been transferred to the Stroke Unit – a semi – intensive unit of the Neurology Ward because my vital signs were getting worse – especially related to breathing difficulties. I was fully monitored 24/7 in the Stroke Unit for one month and I was not responsive to the first line of treatments.
On March 31, three weeks after the spinal tap test, the results of the exam were received. I was positive for NMDA-receptor antibodies in my CSF. So, the clinical diagnosis was correct since the beginning and the prompt initiation of treatments that had already been done, were a lifesaver.
Because of the possible paraneoplastic origin of this autoimmune encephalitis, I had been visited by different specialists, but even with a PET scan, aparaneoplastic cause in all my body was not identified – neither a teratoma nor another type of tumour was ever identified.
On April 10, I received my first infusion of Rituximab. Throughout the month of April, I was catatonic and unconscious, I had involuntary movements, I had fever and a correlated high-risk of infections, and only occasionally was I able to say a word, without making sense, or asking about what was happening to me.
At the end of April, I started to wake up a little, giving my loved-ones hope. I was taking an anti-seizure medicine, but in the meantime, I had a violent skin rash, so doctors wanted to avoid adverse reactions to other medicines, so they decided to suspend it. Days later after the suspension of the medication, the seizures returned, from April 26 to 29th (my Doc birthday, unforgettable day for me and for him). I had 7 or 8 seizures from Saturday night to Monday. After the last seizures, I was moved to the Neuro-intensive care unit, for 3 days, then they brought me to the Stroke Unit and after a week, when I was stable again, I came back to the neurologic ward. On April 29, I started a new anti-seizure therapy.
The 2nd infusion of Rituximab was on May 6, one month after the first. I was not stable and not in very good condition, but they decided to go on and it was a partial success, because later I probably had an adverse reaction, but it was not confirmed. This bad reaction was followed by another two weeks of high doses of antibiotics, because the big problem as consequence of all my treatments was mainly the risk of secondary infections. I was immuno-suppressed, and my caregivers had to wear sterile shirts, masks and gloves to stay by me, when possible in a single room.
As a result, they decided to also suspend the Rituximab infusions,but something was going anyway to work and in mid-May I started to wake-up again. I was very agitated and unable to do any of my primary functions, such as talking, eating, drinking, walking, washing, dressing myself, staying alone and so on. With the infinite and patient love of my family and my husband, I had to relearn everything from the beginning. When I was able to walk, I wanted to run. In fact, I tried to escape from the hospital several times. I was aggressive and hostile, I kicked and almost injured many persons by my bed, including my father and a pair of nurses, who were scared of me. Clearly, I was not myself at all, because I was still hallucinating (for example, I saw animals in my bed or heard strange voices). I was moody and my behaviours unstable. They gave me some drugs and neuroleptics, as normal, which gave different results for me; sometimes good and sometimes not. My parents, my brother and my husband stayed with me forever and ever during my awakening.It was fundamental for my safety and my wellbeing.
On June 24, I was discharged from the hospital and I came back home feeling like the luckiest girl in the world. I couldn’t believe I was in my home again, with all my stuff – my wardrobe, my jewellery, my kitchen utensils, my couch, my PC, my drawing tools. I remember that I spent hours opening and closing doors, drawers, cabinets and boxes to be sure that everything was ok, in its right place. I had already learned to do a lot of things in the hospital and I thought it would be easy to go back to my normal life quickly. At that time, I was not conscious of what had really happened to me and I was simply happy to be alive.
The road to recovery started the day after, on June 25 and I can hardly believe today that it really took 2 whole years. The beginning was very hard. When you have experienced a roundtrip to and from such a dangerous and strange disease your point of view on everything changes, forever. Then, people are strange when you are sick and not everyone knows how to interact well with a person with an acquired brain injury, temporary or permanent. At last, but not least, the recovery is a difficult and a very big deal, which requires of you a tonne of energy, every single moment. You could feel frustrated when you have to remember trivial details or major commitments day by day, or to learn something new such as names, localities, foreign words or web applications. Sometimes you are tired and irritable and need a quite a long nap in spite of your desires or sometimes to nap is the only thing you can do. Some days you feel frustrated, unmotivated, misunderstood or angry at everything or everyone. If you need help, you do not have to be ashamed. Be patient, take a breath and explain what you need; those who love you will understand. Moreover, when you are too tired from talking and arguing, give a sense to your thought in another way: write, chat, draw, read books or newspapers, take pictures, play music, sing, whistle, run, meditate, pray – every single form of expression will be useful. At least, it would be a good way to explore your emotions and to connect with your feelings.After a brain injury we’re all more vulnerable and fragile than before and we need more time and rest to feel good and at peace. It took me a lot of time to learn to stay alone again with myself, without fears and tears.
The 2 years for recovery
Personally, my whole experience of recovery is positive, because I was not so young when I got my encephalitis. As an almost 32-year old woman, I was already married and we had a home of our own, I was an employee of a good work place, I was a member of a running team, I had a lot of cultural interests and I still have my family and a lot of friends in my birthplace, where I grew up and studied at university. My social network of affections has been my salvation and my landmark during these years of hard work toward recovery.
I restarted to do many of my favourite things during the summer of 2015 and,gradually, I regained all my skills, such as riding a bike, drawing my ideas, listening to music or complicated things like using the English language or knowing something about my disease. I began to read on internet about anti NMDA-r encephalitis just to better understand and slowly I have studied more and more, until I asked all my loved-ones to tell me about my 100 days of nothingness. I read books, I joined support groups, consulted websites (first of all this one!). Moreover, I drew a lot, many ideas to fix all the concepts and my experience, many sketches about me, my particular disease, my crazy hospitalisation, my hard recovery at home, at work and in society. All this material will be,one day or another, disclosed in something more organized and shareable.
Physically, I was a runner and it helped me a lot in recovering my movements, muscles, coordination, and physical abilities. As soon as I could stand and walk a little, I asked for my running shoes and I wore them with joy at the hospital. I walked for kilometres and kilometres in the aisles of the neurological ward in June and then around home in the summer, then around my town. Gradually I was able to run again, walk and run, run 5 km, run an hour until two, and then in April 2015 I ran a half marathon. Since, I have run many other distances, and probably I run faster and better and happier than ever before. With great satisfaction, I ran the London Marathon in April 2017 and the Reggio Emilia Marathon in December 2017, in 3 hrs 50 min 45 sec. My personal Best ever! Doing regular sport was a great substitute for physiotherapy or rehabilitation and helped me to socialize, in an easy way since the beginning of my recovery. And, it continues to be important right now too.
Since starting to feel better, I firmly wanted to come back to work, and I really fought for this, with my family, my doctors and my chief. In November 2015, I restarted to work, part time, only a few hours per day, because by the afternoon I felt exhausted. However, it worked as a very good new medicine, because it gave me the energy and the motivation to improve myself and to work hard for something I used to like before the hell of my encephalitis. My employers were fantastic, and they give me the possibility to come back gradually to my previous job, over a few months, until I came back to work full time as usual in April 2016. Then, one year later, in April 2017, I moved to a new office in the same workplace where I have been since 10-years, and I was promoted to a new position, that I love very much. I’m proud to be at my desk every single day and I am committed to the maximum and grateful for this great opportunity.Change, even a little, can truly be a healthy breath of fresh air.
In the autumn of 2015, Marco and I started to travel again; our true passion. According to my Doc, we took a lot of flights and trains in a few months, with my medicine bag. We have been to Berlin to visit my brother, we have visited my aunt in the south of Italy, we have been to Venice and its surroundings, and then we visited Rome, Florence, Torino, Milan, Paris and then Holland, Denmark, and so on. We used to love travelling and I’m so happy to be able to do it again, without problems or fears,like before the encephalitis.
My parents are going to be ok, just now. They were in shock during my hospitalisation, even if they didn’t miss a day beside my bed. Sometimes I didn’t recognize my mom or I had aggressive behaviour against dad, but they patiently waited for my recovery. My brother was a nice kiddo under 30, but, after my disease, I found him a man. He was grown-up in a very surprising way. And now we seem have taken the place of one another – he the bigger brother and me the little one, because he takes care of me so conscientously.
I regularly do the tumour screening as suggested by my doctors, including EEG, blood tests and whatever else is required. Now, everything is going all right. I actually take some medicines as therapy, without collateral effects, it seems. All the medical staff of the New Hospital Estense – Sant’Agostino in Baggiovara (Modena) are simply amazing. From the primary to the doctors, trainees, nurses and assistants, they were all great. They took (and take now) care of me in a special way, not only from a professional and medical point of view, but also human. I often send them email or drawings about my best experiences, my life changes or my goals.They really appreciate my enthusiasm and my affection and in return give me a lot of support and encouragement. I do love them all, really, and my thoughts of gratitude often go to them.
Out in the world, I received thousands of expressions of affection from hundreds of people, from my past and my present life. Schoolmates, teachers, professors, employers, friends, acquaintances, neighbours, relatives, colleagues and so on, everybody sent me a message, a prayer, a letter, a gift, a flower to give me the proof of their presence and nearness. It is amazing, I never felt lonely or forgiven and it was so meaningful to me and to Marco and my family. Only a few of them later were afraid of my disease or they didn’t have enough time to comprehend my condition and I have lost some fellow, but probably it has not been so bad. I gained most of what I had lost, I’m sure. And now, when I express myself in public,on social media or through photography or drawings, I receive a lot of support and encouragement, and it’s very empowering and exciting.
I started to keep in contact with associations and organizations abroad (because in Italy we don’t have something similar, until now), that helped Marco at the beginning and me later a lot. They, through CEOs, administrators, caregivers and survivors, were able to give testimonials and answers to all our doubts, fears, questions and problems. They can communicate in a very deep and sincere way, even at a distance thanks to technology, because they do know, through personal experience what you are going through, before, during and after the disease. Now, because of my positive and good recovery, I can return all the good they gave to me with my experience, by e-mails, chat, websites, social networks. I can collaborate to spread awareness too, because we need to reach all the people with correct information about this rare disease, in different ways: by promoting campaigns, events or testimonial activities. And I’m doing it as well as I can, with newspapers, magazines, TV programs, social media, websites, at the beginning in and around my hometown, but slowly I’m going to expand my activities on a national scale, I hope. I’m promoting awareness wherever I can.
Probably I’ll never be able to reconstruct the memory of what happened to me when I was sick, hallucinating, catatonic or agitated, but with a little help from my relatives and Marco, I can figure-out something real. What I can do now is try to express my feelings and my thoughts in a positive way about my recovery, which is the only thing that I can remember, manage and tell about of what happened to me. Before I restarted to talk, I first wrote and drew. I have filled 4 notebooks during my last month in hospital and then at home I often express myself with pencils, paintbrushes, colours and paper through comics and sketches. And with a pinch of humour, over everything. That is weird, but it works helping me to elaborate the tragedy and turning it into something fun. The same anagram NMDA was my first joke with the disease’s words: Never Mind Dear Alessia, as I would like to forget my illness and be well. Then it became Not My Disease Again, because I do not ever want to be sick, realizing how lucky I was in my good recovery. At least, I can have back my entire life, even more beautiful than before and I’m able to think about the future with Now My Dreams Again.
Now, I’d like to do something not so special but so sincere for those that are suffering because of anti NMDA receptor encephalitis (patients, relatives, caregivers, friend, etc.) sharing my first-person experience with my own face, thoughts and words. Nothing but my availability to answer simple questions, to give a little subjective advice and to listen a lot to whoever needs help to understand how to handle such a terrible disease. Giving hope and positivity, if possible, it’s the reason why I’m here and I want to get involved with my Patient story, because it can also give sense to what I have suffered, with my loved ones.
Sharing is fair, when you have had the lucky opportunity of being re-born to a second life – after encephalitis.