I can very clearly remember the day something started to go wrong with my vision. I was in my college English class, sitting in the second or third row away from the board — and I was having trouble seeing. It was a sunny day, so at first I thought it was one of those things when you see the sun even after you stop looking at it. But days went by, and it got worse.
The campus doctor referred me to a eye specialist, who then referred me to a neurologist. What’s the worst this could be? I asked. Multiple Sclerosis, the neurologist said. A brain tumor. My mom flew up from Atlanta. We received several different diagnoses. My MRI was clear. My eye got better; then a year later, it came back. It cleared up; it got bad again. Finally I was referred to a specialist at Columbia Presbyterian in New York. He was finally able to agree with a prior diagnosis that I was suffering from an extremely rare eye syndrome: MEWDS (Multiple Evanescent White Dot Syndrome.)
“It’s a zebra,” he said. “But luckily, it’s the best kind of zebra.”
A few weeks ago, my status as a medical zebra changed to that of a genetic mutant. I tested positive for a BRCA2 mutation. BRCA1 and BRCA2 are known as the “breast cancer genes”. Having one of them puts you at a very high risk for breast and ovarian cancer. My grandmother died of ovarian cancer when she was 49. Now my mother and I knew why — a genetic mutation. Many people know about the mutation because Angelina Jolie is a BRCA1 carrier. She wrote about her decision to have a preventive mastectomy in The New York Times.
When my mother called me to let me know that she had tested positive I basically knew that meant I was positive too. (It is a dominant gene and so there’s a 50/50 chance with any offspring.) Testing positive was not a shock but it was deeply depressing. I kept chanting to myself, it’s better to know than not to know. Now I can be on a screening schedule. I can be vigilant about my health. This is a good thing. Knowledge is power.
But soon these positive affirmations gave way to a stark realization. I am already a person who suffers from anxiety on a fairly regular basis. I had just been given the knowledge that I was high risk for cancer and would have to be placed on a very strict screening schedule for the rest of my life. Even worse, ovarian cancer is extremely hard to detect; there is truly no adequate screening procedure for the disease. Most women opt to have their ovaries removed preventively after they are done having children, or even before, freezing their eggs and pursuing IVF.
I posted a status update on Facebook; I made about a million appointments with some of the best doctors in the world who specialize in BRCA mutations. My mood would swing from upbeat to deeply anxious — then I hit a wall.
I went out shortly after receiving the diagnosis. I was already in a highly emotional state. I had wanted to celebrate finishing what was an incredibly stressful semester for me in graduate school with my friends and my husband. Instead, I drank too much and flew into a rage. I acted like a total and utter bitch, and worst of all, I took most of my anger out on my husband, because he was closest.
The next day, I tried to make amends. I apologized to everyone. I told them about the health issues and hoped this would serve as some sort of explanation. Everyone accepted my apology; some, more than others, particularly understood how stressful managing bad health news can be.
But I was terrified. I came to realize that day that I hadn’t felt this angry in a long time. Doctors and nurses told me it was natural to feel angry and frustrated, and that most patients with a genetic mutation feel similarly. But I knew this anger. I recognized it.
When I was 13, my parents divorced. My father remarried and became a born-again Christian. Long story short: over the course of about 10 years, he became more and more fanatical, convinced that my brother and I were being controlled by our mother. His wife told my brother she hoped I would fail in New York, that I would have to move home to Georgia. They refused to contribute to my college tuition and my mother had to threaten to sue them. You get the idea.
A series of events after my first three years in New York helped me to realize there was no reason for me to keep trying to have a relationship with my father. I was exhausted. I could no longer communicate with him, and the person I knew as a child — a loving father — no longer existed. Though it’s been difficult, I believe it’s one of the best decisions I ever made.
In the last years of our relationship I became convinced that I was no longer lovable. I had difficulty making friends in New York and my interactions with men were even worse. Looking back on it, the behavior I engaged in was nothing short of dangerous. It took me years to realize I was blaming myself for what had happened between my dad and I. That blame and guilt was a disease, and the emotional havoc it wreaked on my life was very real.
There’s a stigma when it comes to cutting off contact with one’s blood relatives — people stress forgiveness and even tolerance. But when the emotional suffering is so severe I truly believe it’s more important for those who act like family to become family.
The fact of the matter is, we can’t control what happens to us. If life can be defined at all, you can only categorize it as unpredictable. I couldn’t control my father or the way he treated me. But I could control the way I reacted to it. I decided I wouldn’t let his lack of love and support destroy me.
This process didn’t happen overnight, of course. It took several years, and I have a loving partner, an awesome mom, and a sweet younger brother to thank for their strength and support during that time. Though it might sound like a stretch, I view the BRCA2 mutation in the same way. I am determined not to feel helpless or worthless because of it. Staying on top of my screenings and making difficult decisions about surgery are one part of picture. The other side is dealing with the anxiety, and not letting that define my life. But now I know the drill. And I will get through it again.