The Silent Quarter: The Story of One

By Viviane Lovato

So many suffer from it, yet so few know of it: Chronic Inflammatory Response Syndrome. Through story and investigation, one of its many sufferers shines a light on this mysterious illness.

From the earliest signs of the environmentally acquired illness called Chronic Inflammatory Response Syndrome (CIRS) to the implicatio

• Language: English
• Publisher: Viviane Lovato
• Release date: May 25, 2021
• ISBN: 9781736467817

Book preview

Chapter 1

The Beginning

Viviane Lovato

Musical Theater Performance (2007)

When did the story of my struggle with Chronic Inflammatory Response Syndrome (CIRS) begin? Some might argue that, because CIRS is brought on by a genetic susceptibility, it started from the moment I was conceived. I certainly had to fight for my life from the beginning. If it weren’t for the close watch of my mom’s doctor, I would have likely been stillborn, due to a malfunction in how I received nutrients from my mother when I was in utero, a problem likely of a genetic origin. Similar genetic issues may also have played a role in psychological and emotional issues I had starting around 6 years old. These issues continue to haunt me to this day; I carry with me a shame from these years, from the stories, and from the memories.

I remember a day in the first grade when I suddenly refused to go to school. I threw a fit, hiding under the table, creating quite a scene. These outbursts of anxiety and fear were not uncommon for me. And, eventually, they got to a point where, as a child who didn’t even understand the concept of suicide, I was threatening it by standing out in the middle of the street. I was drawing dark scribbles and images, showing them to my mother, and saying, This is how my stomach feels.

My parents did what most parents would do and brought me to a psychologist. Though the psychologist helped me to get a handle on these emotions, I continued to struggle with my emotional health throughout my childhood and adolescence. Eventually, I came to accept this as a part of who I am and labeled myself weak.

It is only recently that I’ve come to realize: I am anything but weak. Though I have no true closure on this time in my life, after hearing about PANDAS/PANS² – a condition common in children with the genetic susceptibility shared by CIRS that causes anxiety, obsessive-compulsive disorder (OCD), and other psychological symptoms – I felt a slight relief in that shame I’ve been carrying with me. I thought, Perhaps there was a medical reason for those issues I had as a child; maybe I wasn’t just a ‘demon child’ after all.

Besides this, in the early years, my childhood was pretty much what one would consider normal. I was inspired by the arts, particularly by the performances of Audrey Hepburn, and I had a flair for entertaining others. So I started musical theater when I was around 7. But when I was 9, our situation was no longer conducive to my continuing it, so my parents suggested I try ballet until we could resume musical theater. At first, being as stubborn as both my parents combined, I protested, disliking that I had to stop in the first place. But I came around to doing ballet as a means to an end. Little did I know... After my first Nutcracker performance with the ballet school, at 9 years old, I came off stage and told my mom, That was the most fun thing I’ve ever done! This is what I want to do. It was the truth; and, for the next nine years, my life revolved around ballet.

Around the time I turned 11, my mom had her first relapse of mononucleosis. Over the course of a few years, she had periods of being bedridden, some days barely able to make it out of bed to use the bathroom. By the time I was 14, her illness had gotten so bad that I began to take care of her and take on a more adult role in the family. I looked after my brothers, who were 9 and 7 at the time. I prepared their lunches, helped them with school, and mediated their arguments. I helped my dad with the housework, like washing and cleaning. And, as my brothers got older, they joined in more, making their own meals and helping with chores.

Also around this time, I began to map out my plans for the future. I had decided, beyond a shadow of a doubt, that dance was what I wanted to do. After graduation from school, I would audition to join a company and start my career. I often daydreamed of the iconic moment that happened every year when a senior graduated from the dance school. At the end of the last performance of the season, the director would call them forward and tell the audience about them, maybe tell a funny story, and say with such pride what this dancer would go on to do. Some would go on to become physical therapists, others to dance with a company, others on to a prominent college to continue their education; but I was sure I’d be one of the ones going off to join a ballet company.

While these plans continued to form, silently and slowly my susceptibility to CIRS began causing issues in both my mental and physical health. But it was 2014 when my health issues became increasingly alarming. The frequent doctor visits and the lengthy search for answers began.

I thought I was a normal 15-year-old who struggled with normal teenage issues. I had just spent the last two summers training at prestigious ballet programs in Florida and Texas, and I was on my way to accomplishing my dreams. But despite being a highly motivated student, pre-professional dancer, and having everything to look forward to, I had a lot of trouble getting up in the morning. As it got more and more difficult to get out of bed in the morning, I employed the method of putting my alarm clock across the room to get myself moving in the morning. The result was a sprained wrist when my legs gave out instead. Every month, my menstrual cycles were coupled with cramping, fatigue, body aches, and migraines. But because my mom and the women in my dad’s family all experienced similar cycles, I thought this was normal. In fact, I thought I had it good compared to other women in my family.

Toward the end of 2014, the fatigue and migraines that came with every cycle began to extend from one day of crippling fatigue, to two, to three. It began to get in the way of my studies and ballet, and it raised some red flags that maybe this was not normal. So my parents took me to the pediatrician. She examined me, tested a few things, and discovered only a vitamin D deficiency. Vitamin D deficiency can cause so many issues in the body, and it explained my symptoms, so I thought that must have been it. I got right on the vitamin D, eager to see the results. The doctor also recommended I see a neurologist for the migraines. He prescribed medication which, if I took it in time, helped manage the