The start of a New Year, New Beginnings and New Adventures, right? As 2020 has shown the world, nothing is predictable. I learned this lesson almost 6 years ago. Growing up in a small, suburban town – great parents, amazing sister, wonderful friends and an extended family all within 20 miles of us – life was seemingly perfect. My sister, Caroline, and I attended the same Catholic High School, Notre Dame Academy, followed by the same Jesuit College, Fairfield University. Caroline went on to graduate in 2013 and start her career in IT Recruitment. She was killing it. Wining and dining her clients, making good money and living in the North End with best friends. I was a senior in college, living on the beach in Fairfield, Connecticut and having the time of my life.
I will never forget waking up on January 28th, 2015 to several missed calls and text messages from my parents and a couple of Caroline’s best friends. I quickly called my dad back and he let me know that Caroline hadn’t been feeling well and had to go to the hospital. I was concerned but had been talking to Caroline all week and knew she was feeling like she had the flu and must’ve needed fluids. My dad asked me not to worry and to finish the week at school and come home that weekend if I wanted to see her. Something in my gut told me things were not good. I decided that morning to hop in my car and drive home to Hingham, MA. When I arrived, my dad looked extremely upset. He told me how Caroline had a Grand Mal Seizure and he had to give CPR to resuscitate her. My stomach dropped. I needed to see her NOW. We drove to Massachusetts General Hospital where Caroline was transported to from South Shore Hospital. They made us put on PPE from head to toe in order to go in the room and see her since at this time it was unclear what was going on. I remember seeing her there, in a deep sleep, wanting her to just wake up. The next day Caroline woke up and that’s when the mystery really began. She seemed extremely confused, had hundreds of seizures a day and the top neurology team in the world weren’t even sure what was going on. She continued like this for days. I spent my 22nd birthday with her at the hospital and my parents brought in a cake to sing to me. Her face LIT UP. Until she realized the cake was for me and not for her, then she was not a happy patient. She would sing songs that didn’t make sense and called herself “Bob Browne Band” aka “Zac Brown Band”. There were points of hallucination as well. Amid all of this – there was constant seizure activity.
I remember walking out of her hospital room and into a waiting area and really breaking down for my first time. Would I get my sister back? How could this be happening? Why can’t anyone give us answers? A life that seemed so in my control suddenly turned upside down. As the world adapts to a “New Normal” in this pandemic and faces a health crisis that is so unpredictable, it brings me back to the winter of 2015. Not knowing what the future will look like and seeing people we love suffer, is extremely hard on our mental health. My journey with anxiety began the moment my sister’s life was put in jeopardy and many are going through that same journey now with Covid-19.
Days after being on a regular neurology floor, Caroline was sent to the ICU. She was put into a medically induced coma in hopes of reducing her seizure activity. She spent 10 days in this coma, hooked up to a ventilator and every machine you could imagine. I spent my days with her holding her limp hand in one hand and rosary beads in the other praying for a miracle to happen. After a few days in the medically induced coma, her team of doctors sat my parents and I down. They told us that they were unsure of how successful the outcome of this would be and did not know what Caroline’s future would hold. Hearing this felt like a boulder being thrown at my stomach. However, we were finally given a diagnosis, Autoimmune Encephalitis.
Caroline’s immune system was attacking her brain. It could have been building up for a long time. She began to show symptoms such as forgetfulness and anxiety months before but chalked it up as being overwhelmed with work. Her body continued to attack her brain leading her to a dangerously high fever, Grand Mal Seizure and waking up extremely confused. The book “Brain on Fire” by Susannah Cahalan discusses the author’s experience with AE. It can appear that someone is losing his/her mind and is often misdiagnosed as a psychiatric disorder. It is dangerous to have this misdiagnosed because early treatment is crucial for survival. Caroline woke up after 10 days in a medically induced coma. She was agitated, confused and ready to battle. Literally. She told me to fight the nurses. Don’t worry, there were no fist fights in the ICU from me. One of the most amazing things was that here she was in this disoriented state and she told me she felt like she was held by the Blessed Mother the whole time she was in the coma. That is who my parents and I prayed to as we held on to her hand and the rosary beads.
After several more days, Caroline was able to leave the ICU and go back to a regular Neurology floor. Here she began to learn how to swallow water on her own again, use a spoon again, and eventually begin to walk again. The seizures had stopped, and things were looking up. Caroline was discharged at the end of February and sent to Spaulding Rehab in Charlestown, MA. Here she learned how to walk on her own again, participated in both cognitive and physical therapy. She even had Teddy Bruschi visit her room one day! Caroline’s transition back to the “real world” was far from easy and something she still adapts to today. She may not be the Caroline she was before Autoimmune Encephalitis but she is stronger, wiser, and a better person because of it. She now nannies in South Boston, is involved with the Boys & Girls club and sits on the Professional Council Board of Spaulding Rehab.
The winter of 2015 was a year I could do without, just as many are feeling about 2020. It changed my family forever. We all deal with our own versions of Post Traumatic Stress and anxiety from what we endured those months. I spent a long time living in fear of what may happen and being petrified of losing my sister. Anxiety would manifest in physical ways and make me feel sick. I’m now in a place where gratitude outweighs fear. I’m thankful for every challenge I’m given and know I have the strength to get through anything. I know we are extremely blessed with the outcome of Caroline’s illness and not everyone has been so lucky. I hold those people in my heart closely and hope for strength in their loved ones. 2020 is a year of a lot of tragedy and sadness, I hope our world can come together as one and become stronger and better through these awful times. Thank you, Caroline, for teaching me that life is a precious gift and there are no guarantees.