Susan's Story...

How Epilepsy Entered My Life

Let me tell you my story. In September 2002, I remained in intensive care for 8 days due to meningitis. I came home to a very difficult recovery. I battled daily for three months. Every day was a struggle, even a shower made me tired. I was first diagnosed with epilepsy in May of 2003, after my friends noticed me zoning out while teaching and talking! I was determined to keep going after my diagnosis. I continued to work as a technologist in a school, one hour from home, thanks to an amazing group of friends (coworkers). They drove me back and forth daily. My principal was very understanding. I was blessed. After a year of various drugs, I worked my way up to 28 pills a day and was told I needed to consider brain surgery. Yikes , me, a mother of two young boys, brain surgery? I had to have many tests to see if I was a surgical candidate. I needed to have depth electrodes implanted surgically first to make sure they were coming from the right temporal lobe. On November 11, 2004, I had surgery and initially, all went smoothly. The bad news was that during surgery, they pierced a vein in my brain and it formed a clot. So they hauled me back into my second surgery, immediately. When I came out of surgery, I remained hospitalized for 14 days. I was told I’d have to go back into surgery for a third time for the lobectomy AND ONLY when the clot was gone. This time I was knocked down, but I went home to recover with my mother and that’s how I learned to be a “patient patient.” For two months I recuperated and waited for the clot to dissipate. I COULDN'T EVEN LIFT A GALLON OF MILK! But finally in January 2005, I got the green light for the lobectomy and had the surgery. My recovery seemed like a long time—about 4 months and it included three rounds of steroids to help me recover. And…I have to say, it wasn’t exactly pleasant—my brain was so swollen I would hear swooshing. Can you imagine? It was really weird. Looking back, it was a long recovery but I have no regrets. After all, brain surgery had its privileges. I got out of chores for a long time and my brother gave me a beautiful ring the day before I had my lobectomy. He had the word PEACE engraved inside. Being the chop buster that I am, I sent my friends and family an email that had phrases no longer politically correct to say to me, like: Do you have half of a brain? Did you lose your mind? Are you in the right frame of mind (I have no right brain), I want to give you a piece of my mind… and of course the ever-popular question --Do you have a screw loose? I still don't think they know if I was kidding or not. On January 10th , 2011 I will be 6 years seizure free!! I still take meds , I always will but it is what it is. I am able to drive. I have met the most amazing people because of everything that has happened to me and I am a very strong person. The blood clot and a brain surgery caused a personality change. That was very tough to deal with. I lost some memory but I continue to make new ones and I learn how to compensate for the short term memory loss.