Don’t Let the Diagnosis Stop You

I was diagnosed with epilepsy ten years ago. I have spoken in front of hundreds of people on other topics, but this is the first time I have shared my epilepsy story publicly, or privately for that matter, although my wife has experienced it all with me. My first seizure was an aura. I was in a meeting when a sensation hit me: I could only describe it as "intense Déjà vu." I immediately walked out to the hallway to gather myself. Since it was an aura, it passed quickly. 

I dismissed it until I had multiple in one week. I went to my internist, and being uneducated on auras, I could again only describe it as "intense déjà vu." My internist didn't know what I was describing, so he referred me to a cardiologist. He thought it was restricted blood flow in my carotid artery. Those tests were negative, so he was unsure of my issue. The auras continued, and I was completely confused by what was happening. In addition, I knew something was wrong, but physicians hadn't provided any answers! 

In another meeting, I had an aura, and the next thing I remembered was an EMT asking me, "Who's the President?" Fortunately, I kept up with politics, so I knew. There were no answers at the hospital since all the tests returned negative. I asked a coworker what happened, and he said, "You gave me a blank look, and you just passed out." I didn't shake, stiffen, or do anything you might think of when describing a seizure. 

One of our neighbors is a neurologist, and he asked about my trip to the emergency room. I had never discussed my issues with him before, but I told him, "I have to go somewhere else and get this figured out!" I mentioned these "intense Déjà vu" episodes and passing out during a meeting, which baffled him, too. He said, "No need to go elsewhere because one of the most renowned neurologists is in town." I made an appointment with his referral and shared everything I had experienced with the neurologist. He said, "It sounds like epilepsy." I was infuriated and devastated when he "labeled" me. I was mad because I had a successful career and a beautiful family and was very creative and capable. The word "epilepsy" scared me. 

We tried medications, which helped for a time. However, the seizures continued. My doctor said another option is surgery. He said, "We'll make an incision like a horse-shoe on the side of your head and remove the tissue being the origination spot." Again, I was enraged and fearful. I was fearful because they planned to move a portion of my brain. I thought: how will this leave me? In a wheelchair? Unable to speak? It also enraged me for vanity reasons. I have shaved my head for many years and didn't want a visible sign of any issues. I thought, "What kind of questions will the scar raise?" I knew I couldn't keep living the way I was, though, and I didn't want it to get worse, so we scheduled the surgery. 

After the surgery, my head healed exceptionally well. Once I was back to work, no one asked about my scar, and I was operating as myself, even though I was missing a part of my brain! Now, looking back on it all, living with epilepsy doesn't bother me because I know I'm the same person, and I'm still capable of what I was pre-diagnosed. 

Education is critical for the public and the medical community. I experienced this firsthand. Auras can be so unique, and they can be challenging to explain, especially when they are new to a person or physicians who haven't dealt with many seizures, if any. 

To me, epilepsy is a diagnosis, not a disability. I've been avoiding sharing my story for too long, and I hope my story, like many others, can help someone with epilepsy or someone who knows someone with epilepsy. Don't let the diagnosis stop you from pursuing your dreams! I've had a wonderful corporate career, designed two patents, and am a Black Belt in Hapkido/Tae Kwon Do.