Seizure Star - Lee Paolella (leeleesagg)
For NEREG's September 2015 newsletter, Lee Paolella, a patient living with psychogenic non-epileptic seizures (PNES), a seizure condition often associated with PTSD and triggered by psychological stress, sat down with us to tell us about her impressive advocacy activities. Until recently, PNES was misunderstood and ignored by many health professionals and the general public, but now with a growing and empowered community, this is starting to change. Lee has been a big part of this change.
How did psychogenic non-epileptic seizures (PNES) come into your life? What has this experience been like for you?
Psychogenic Non-Epileptic Seizures (PNES) first came into my life 2 1/2 years ago. I don't know to be honest as I write this if it was a blessing or a curse. As much as having PNES has turned my world upside down it has also forced me to finally take care of myself mentally, emotionally and unconditionally. Before PNES I can easily say that on my long list of daily concerns I was definitely last and today I am number one. I know without question that my PTSD has led to my PNES. But before my PNES I didn't even know that anyone other than Veterans had PTSD. I spent over 20 years of my life before my first seizure in and out of psychologist, psychiatrist and doctor offices saying the bare minimum, taking the bare minimum and facing the bare minimum just to get through one day to another. I was always afraid to feel that pain, to face what I knew was really there but just couldn't bear to relive or truly share. I don't see my PNES as a punishment but as a new reality instead. It is now the way my body and mind relieves my stress, anxiety and overwhelming emotion. PNES is what I have, it's not who I am.
When did you start to work on PNES awareness and why?
I started to work on PNES Awareness about a year ago. As soon as I was diagnosed with PNES I jumped on the Internet and started on my research. In my travels surfing the web I saw that there was so little support, information and definitely the absolute bare amount of any graphics, colors, designs or anything really to symbolize the awareness, unity and support of what I was learning was a much bigger community than anyone could imagine. I made it a personal mission to help get the word out there by capturing people's attention with bright, colorful graphics with information, purpose and power.
What sorts of things have you been working on?
The experience of being the unofficial, graphic artist for our PNES community has been an absolutely amazing one. I never imagined that the graphics that I have made for PNES Awareness would travel as far as they have through social media and touch as many people as they have. These graphics have been shared to other countries, websites, profiles, cover photos, support groups, and to the once lost people who see a PNES graphic and know they are where they belong, like a flag on the horizon. I feel like the possibilities of bringing PNES awareness are limitless and my wheels are always in motion.
