I remember the hot and extremely humid Saturday afternoon in Puerto Rico when my mom and I found my sister lying on the floor of her room in fetal position, her head tilted slightly upward, staring at one of the perfectly hand-painted shocking pink walls of her room. Bubbles of drool were coming out of her mouth, and her gaze was lost and downright frightening. We’d heard her weeping like a 2-year-old whose sabanita (blankie) was lost forever, which prompted my mom to run to her rescue — a scene that had become far too familiar for our family.
But this time was different: My sister was inconsolable. She wouldn’t move, blink, or speak. We sat next to her for a few minutes … or was it hours? I’m not exactly sure, as time felt meaningless at that moment.
She was only 17.
As a writer used to editing while typing, I think and process my emotions in words. Often, I choose one word to summarize the feeling, the experience. Bizarre is the word for this day; it was — without a doubt — the most bizarre day yet of my then 15-year-old life. My big sister was acting weird, and we couldn’t do anything to help her.
The days that followed this “episode” were somber, sad, and full of silence and tears. The morning following the episode, we drove my sister to the hospital, where she remained under observation for two weeks. I remember my mom calling pretty much every psychiatrist in San Juan during that time, as well as my father, her sister, and, lastly, my grandmother, with whom she shared what she thought was going on with my sister. “She is sick. She wants to quit architecture school. I’m scared,” I overheard her say while eavesdropping.
My sister was only 16 when she was accepted to the University of Puerto Rico School of Architecture, which admitted just 30 students per year after a rigorous application process that included artwork, endless interviews, and three or four tedious exams. Of course, my always-brilliant big sister passed them all with A-pluses.
When she started at the university, she was the youngest person in the class once again. My mom — and especially my dad — always bragged about how she spoke her first words at 11 months, started at a Montessori preschool at age 2, and by first grade could read a book from cover to cover and knew all her multiplication tables by heart. When the time came for her to enroll in second grade, the teachers highly recommended that she be “jumped” to third grade right away. She was way too smart for second grade.
Here Comes the Diagnosis
We were allowed to visit my sister at the hospital only after a full week had passed. As soon as we got out of my mom’s car the day of that first visit, I felt this unbearable pressure on my chest. The sign read “Hospital San Juan Capestrano,” and it was surrounded by beautiful tropical landscaping and a few flame trees with fire-red flowers. Inside, the waiting area had soft pink and beige walls, and the staff was friendly — almost compassionate.
It was obvious that my mom hadn’t slept in 10 days. My dad was making stupid jokes to calm his nerves. This was the first time both of my parents had been in the same room since their divorce 10 years prior. My sister was waiting for us behind a glass window. We went in one by one, as requested by her on her visitor’s list. We only had two hours total, so we had to be quick and clever. Saying the wrong thing at the wrong time could be extremely detrimental to her recovery.
A team of doctors, two of them female, came to the visitors’ room after my sister was sent back to her “cocoon,” as she referred to the psychiatric ward she was in. They confirmed our suspicion: She had type 1 bipolar disorder.
My big sister, as she later jokingly referred to herself, was “certified crazy.”
Bipolar Disorder Symptoms and Diagnosis
Speculation immediately followed our visit, as we tried to figure out how to process this diagnosis and figure out what the best treatment for her would be. Lithium, the doctors all recommended. But my sister couldn’t bare the side effects of this strong medicine, despite all the studies that prove it to be the most effective in helping patients balance their mood swings.
Genetics quickly came to mind as one of the possible causes — one more unfortunate piece of my sister’s “misery team,” as we liked to call it. “Your grandfather was schizophrenic,” my mom reminded us. And my father’s dad, a veteran, was brilliant and had an impeccable sense of humor — just like my sister. One of the most discussed family stories was that he came back from Korea “crazy.”
His family had certified him as crazy.
Life After the Diagnosis
The next two decades were full of ups and downs; crises; two more hospitalizations; a few suicidal moments that luckily resulted in aborted missions, thanks to the vigilant efforts of my younger sister, my mother, and me; insomnia; stress; and more than 40 different psychiatrists.
Why Can’t I Sleep? Insomnia Explained
But even at my craziest and darkest times, I can say I have never experienced depression or mania, the two main components of bipolar disorder, in my life — at least not in the way my sister did. I consider myself blessed but don’t take my own mental health for granted for a second.
As I was writing this story, I called my mom to help me relive some of the most somber moments with my sister. I wanted to document them as they'd felt at the time. Her response was: “Please make sure whoever reads this article understands that your sister’s breast cancer diagnosis was nothing compared to her bipolar disorder diagnosis. Bipolar disorder really shaped her destiny.”
In 2007, at age 30 — right after she’d bought her first apartment by herself, finished remodeling it with the help of our father, and had been with a steady boyfriend for three years — her body joined the “misery team” her mind had successfully founded 13 years earlier.
My “certified crazy” big sister ALSO had breast cancer.
Another genetic disorder was confirmed to all of us when my sister learned that she was BRCA2 positive. (Two of our aunts have had different forms of breast cancer, which puts us at increased risk.) I have chosen to never be tested for the BRCA2 gene mutation, though, mostly because my mom couldn’t bear having another diagnosis in the family. My sister's battle — actually, to be precise, OUR battle — with cancer lasted seven long and incredibly fulfilling years.
I had moved to New York City by this point, so I flew down to Puerto Rico at least every other month to be with her and my mom, to take her to her endless chemotherapy appointments, and to be there when she woke up from each of her five invasive surgeries. We tried it all! We did what every loving family facing this tragedy does: We had her back.
Signs and Symptoms of Depression
What happened to her mind while her body was weakening over the course of those seven years is still beyond our belief. She experienced no major mental crises during this time (other than a bunch of tears and fear associated with the cancer treatment, of course), took no depression meds, and had zero visits to the psychiatrist; she didn’t need the treatments. It was almost as if her body and her mind signed an agreement to let her lead as ordinary a life as possible despite her illnesses, and the disclaimer stated: “Valid for at least seven years.”
Her mind gave her a break for the very first time.
While she was never truly in remission from her cancer, her mental state was okay. Her mood swings were under control, and she was determined to win the cancer battle — and smiled more than I could remember since her bipolar disorder diagnosis. I call this period our beauty within the tragedy.
Then May 16, 2014, happened.
My sister’s cancer had spread to her lungs, and on this day, her body succumbed to the disease. As her body shut down, her last words to me were loud and clear. So was her mind. “Take care of our baby nephew. Buy him a bunch of candy, and let him do whatever he wants. And you always be yourself and never let anyone put you in a box like they did to me. I am proud to be certified crazy, but you are not crazy.”
The Real Ana
Her name is Ana. She lived a functional life even after cancer joined her “misery team.” She had a steady job, friends who loved her and understood where she was coming from when she acted weird, a new boyfriend basically every other year, and a loving family. She was pretty and funny as hell. She collected records and movies and was capable of dismantling and remaking a computer from scratch. She was the most brilliant person I have ever met. She died at age 37. Way too young! And I choose to remember her — every day of my life — simply as my big sister. The best one I could have ever asked for.
Our favorite movie was The Intouchables. On the day that we watched it for the seventh time, Ana confessed that she loved it because the relationship between the main characters (a paraplegic and his unexpectedly nice caretaker) reminded her of ours. The caretaker never looked at his patient as a sick person but simply as a guy who needed to have fun and feel normal for a bit. That was a great day. But I wasn’t always compassionate and caring with her. It took me years to accept that my big sister was sick. To be honest, I will never fully understand why she had to suffer so much.
come forward and tell their stories of living with this disease, bipolar disorder will hopefully shed some of its stereotypes as a crazy person’s disease.
Meanwhile, I have not only bought our nephew all the candy he wants, but my younger sister and I make sure he knows his Auntie Ana is watching him from heaven and protecting his every step.
Bipolar disorder is not the enemy. The worst part of this terrible condition is the stigma it carries, as do all mental disorders. There needs to be more compassion and understanding. I strongly believe that putting a face to bipolar disorder helps humanize our “certified crazy” in the eyes of our “not certified crazy” world. Like Ana would always tell me: “I’m not the crazy one. I see what others can’t. We are just humans fighting to fit in this crazy world.”
That’s my sister.
Resource We Love
Founded by four parents with children impacted by bipolar disorder, the International Bipolar Foundation seeks to increase awareness of mental health conditions and supportive connections for people touched by bipolar disorder. Learn more about its support resources.
BPHope, the award-winning online community of BP Magazine, works to increase public knowledge about bipolar disorder and empower members of the bipolar community. Take a look at its resources for caregivers, and subscribe to its print or digital magazine.