Wednesday, March 13, 2013

My AVM

Few things bring more clarity than a sobering medical diagnosis.

When I was 17 years old, I missed 14 days of school because of intense migraines. We saw my doctor and he recommended a neurologist. After several tests and an MRI, I was diagnosed with an Arteriovenous Malformation (AVM) of my right temporal lobe.



In very basic terms, it means my arteries and veins aren't connecting properly in the lobe that processes memories, language, senses, and comprehension. AVMs can cause headaches, seizures, vomiting, vertigo, memory loss, and a variety of other symptoms. In extreme cases, it can cause a stroke. Most cases of AVMs aren't diagnosed until a person's autopsy. The neurologist recommended we then meet with the top neurologist at Johns Hopkins for further consultation. Their next opening was 6 months later.

There is little I can say about the emotions I experienced. Having already been diagnosed with depression, I tried to keep my head above water and process everything through logic instead of tears. "There is no productivity in asking, "Why me?" But I can suck it up and make the best of it." Because it was 2002, there was no Wikipedia. We called our search engine 'Jeeves'. My only information came from WebMD and the pieces of paper distributed at the doctor's office. If you've ever read those pieces of paper, you know that they outline the worst case scenario followed by a quick, "but that is unlikely." What I learned is that AVMs come in a variety of forms, produce many different symptoms, are not genetic, and are rare because they are mostly diagnosed during autopsy's. If a doctor wants to operate, it can be very risky - just like any other brain surgery.

I named my AVM Daisy because it was like having an unwelcomed weed in my head. During what should have been my most memorable year of adolescence, I have very few memories as a senior in high school. I know I took the SATs but I don't remember. I know I went to Homecoming and Prom, but I can only recall the photos. I know I was the President of several clubs and put on blood drives and decorated parade floats, but I can't remember doing it. While my classmates submitted college applications and planned their senior prank, I proactively chopped off my hair, just in case I needed brain surgery. While friends partied, I withdrew from my social circles and focused on keeping busy. I had to come to terms that because the AVM was in a temporal lobe, I may need to re-learn basic motor and language skills. I continued to plan my future while having the thoughts that there was a chance I could die at any moment.

Six foggy months go by.

On May 27th 2003, my dad’s 50th birthday, we went to Johns Hopkins. The doctor met with us, went into the other room with our MRI for about ten minutes, and returned wearing a poker face. “From what I can see, this is a Cavernous Malformation (CVM). They are essentially harmless. Follow up with your neurologist in about 6 months about those headaches.”

We left the room with tears in our eyes, hugged in the hallway, and got onto the elevator to leave. I don’t remember the song that played but I remember it was a female voice from the 1970s. I was shocked. Those six months of preparing to die at any moment. My non-existent senior year of high school. The auditions I skipped.  The friends I alienated. The parties I missed.

But those “missed” 6 months didn’t make me angry – I was relieved. I had a new perspective. I had a new life. Part of me could be angry that the neurologist read the initial MRI incorrectly and caused us half a year of grief. Part of me could be scared that the Johns Hopkins doctor lied to us because a majority of doctors prefer to not operate on AVMs. Part of me could continue to withdraw from life because I could die at any moment – but that would suck. Why the hell would I waste my life with that kind of worry?

I could die of a stroke. I could die in a car crash. I could die from choking on a grape. I only know one thing about my death: it will happen. Fear is a useful thing. It’s like anger in that it is neither good nor bad. It's not that we have fear; it's what we do with it.

Malformation be damned – I was going to live my life and do things I love! A month after my CVM diagnosis, I participated in a National Theater Program and performed 3 featured roles at the Kennedy Center in Washington D.C. A week later, I moved to Texas to pursue my education in Opera. I went sky diving, I sang in the Czech Republic, I escaped from a horrible relationship, I learned guitar, I changed my major 4 times, I got depressed, I got two tattoos, I studied Spanish in Spain, I married my best friend, I earned 2 degrees, and I gave birth to a beautiful baby girl.

If I let the fear of death envelope my attitude and intensify my depression, I’d be dead by now. If I let my fear of death propel my positivity into the stratosphere, I’d be a CEO by now. I’m living in the balance and I’m okay with that.

Daisy is still an unwelcomed weed, but even weeds can be beautiful flowers. 

2 comments:

  1. Daisies are my favorite. You are my favorite.

    ReplyDelete