Celebrate the holidays with the story of a flourishing AE survivor

As we are in the midst of the holiday season, what better way to celebrate than with a survivor’s story. We are grateful for Brittany’s willingness to write about her illness trusting that it might give some peace (especially this time of year) to the AEA community.

MY DARK WINTER

By: Brittany DiCapua

They say that life changes fast, and I for one can attest.

Imagine a life filled with success, security, health, and genuine happiness. I was as they say ‘living the dream’ – feeling comfortable in my professional career and maintaining a vibrant social life.

Just a few weeks later, my life drastically changed. Imagine being enclosed in the psych ward- alone, with no personal belongings, and a blurred perception of your surroundings. Imagine being constantly examined, observed, and never left alone for more than 15-minutes- not by choice. Imagine not being able to distinguish the difference between an illusion and reality, and having to blunder when someone asks ‘what’s your name?’ because you simply can’t remember.

This unfortunate situation marks the start of my fight against anti-NMDA receptor encephalitis, which began in January 2015.

It was a gradual progression. It started with small and unsettling bouts of fear that shortly morphed into overwhelming feelings of doom and darkness. Depression overtook me, and I began to slowly fail at daily tasks. I would read sentences over and over, unable to actually comprehend the meaning of the words. I could not think; it was as if my mind was gridlocked.

In addition to the emotional distress I endured, I was also experiencing physical oddities. I found myself involuntarily moving and twitching my fingers and toes. I also began to perspire uncontrollably.

Eventually, my feelings of anxiety, depression, and discomfort led to full-fledged panic attacks. Constantly overwhelmed, I was unable to sit still and unable to steady my breathing. I could no longer live my life independently in Boston, so my family picked me up and brought me home in Maine. Things progressively got worse from there.

During the following nights at home I was plagued with an inability to sleep. Night after night I lay sleepless and wide-awake concocting unrealistic illusions and impractical situations of ‘forthcoming doom’ over and over again in my head. My anxiety level was so high that I refused to be left alone. I remember one night lying in bed beside my mother and my father, listening to them talk me to sleep. They talked to me about everything; silly things like what movies were playing in the theatres and also more analytical and thought provoking topics like taxes and stock options. Anything to save my mind from itself.

My first seizure happened in early February. I remember being jolted awake by the feeling of ice-cold air.  Two large, unidentifiable men were hoisting me up into the back of a truck, which I soon learned was an ambulance. I had undergone a Gran-Mal seizure.

My father, a family practitioner, later explained the scene; it was as if I was electrically shocked. I jumped out of bed in a panic, paced around the bedroom, and then instantly seized. My body stiffened and my neck cocked to one side as my teeth clenched down on my tongue. My limbs struck out in front of me, fingertips dangling, as I fell into my father’s arms. Even though this was a horrible incident, it was the key to my diagnosis.

At the time, it was determined that my seizure was a result of emotional distress and mental illness. After many doctor visits and countless theories as to what was wrong, I was eventually admitted to McLean Psychiatric hospital in Belmont, Massachusetts where I stayed for eight days. I can say with confidence that these were the hardest days of my life.

I was extremely confused. Each day I wondered why I was there, and it never really hit me the situation I was in. I was on so much medication that I lost any sense of who I was. I was just going through the motions day after day, doing what those around me prompted me to do. I could not eat, I could not communicate, and I could not even remember my own name. I had lost both cognitive and motor abilities, and even the simple task of taking a shower was not something I could do on my own.

I underwent much examination and testing, and finally on my eighth day I was discharged. As I left the Doctor explained: “Brittany, you have bi-polar disorder”. The words cut like glass.

My first reaction: “Am I like the characters in the movie Silver Linings Playbook?”

I could not believe it. I truly thought that my life was going to change. Forever.

In my time after McLean, I tried to accept my diagnosis, though I did not feel any better. I was still on a lot of medication, but yet felt the same or even worse than before my stay at the hospital. My days consisted of sitting on the couch and staring into the distance – in my case, these intense staring bouts were categorized as partial seizers. I grew disheveled in my appearance- I was pale and shrill. I did not want to talk, but yet I did not want to be alone. I could not eat, but yet I was always hungry. I could not sleep, but I was always exhausted. I was trapped within my own body and to put it bluntly my family and I were living in hell.

My family kept questioning why this happened, it did not add up to them. How did I go from completely normal to catatonic in a matter of months? My mother kept urging the doctors for more information. She would always ask, ‘What about the seizure?’

It was about three weeks after McLean when my family received a call from the family practitioner. He was going through the blood tests with my mother, and noted that I tested positive for anti-NMDA receptor encephalitis.  Not only did I test positive, but I was a ‘textbook match.’ I had no idea what this meant, and oddly when I was told the news I was upset that my diagnosis had changed. I had finally accepted that I was bi-polar, and now they were telling me I had something different.

Anti – NMDA receptor encephalitis is a disease where the body’s immune system attacks the brain. The trigger of the disease is still unclear, but studies have associated its cause from either exposure to certain bacteria or from the presence of a foreign cancer or teratoma (tumor) in the body.  The disease presents many neuro-psychiatric symptoms, and left untreated can lead to coma.

Immediately the next day I was admitted to Massachusetts General Hospital in Boston where I received five days of intravenous immunoglobulin treatment (IVIG) and had surgery to remove a teratoma on my ovary.

During this time, I felt as though I was gaining back control of my mind, but I was diminishing physically. I was unable to walk by myself, and spent most of my time in the hospital dreary or asleep.

After six days I was discharged from Mass General. The first thing I remember the doctor telling me ‘congrats’. He said I was cured, and for that I felt very fortunate. I spent the next few weeks recovering at my home in Maine, and I could feel my body regain control both physically and mentally. Mid April, I moved back into my Boston apartment and underwent cognitive occupational therapy. I started back at work part-time and eventually in early May was back at work full-time. Currently, I am still regaining physical strength, but mentally feeling stronger than ever.

I can’t tell you how many times I wanted to give up during my fight. I thought my life would never be the same and that I truly lost the 23 years I had spent building who I am. I honestly can’t say with confidence that I was ‘brave’ or ‘strong’, but – I got through it. I hope you can find parallels to your own life in my story, and see that light can be found through darkness.

Yes, I was one of the lucky ones. I successfully overcame a narrowly understood illness. I may not have a mental illness after all, but hundreds of thousands of other people do. I have a newfound respect and appreciation for their struggle, and a newfound admiration for their success. Mental illness is a little talked about issue, and my goal is to not only bring awareness to this rare disease, but also to mental illness in general.

Strength, perseverance, and courage can be difficult to maintain in times of weakness, idleness, and fear. It is crucial to remember that in dark times, things will get better. Maintaining strength in hard situations is how you grow as a person.

During my recovery, I received a card sent by an old friend from college.  On the front of the card was a hand drawn quote that resonated deeply. Dolly Parton said it best:

“Storms make trees take deeper roots.”

by spencer

• My AE Journey