This poem was shared by someone who has lived with PNES. Her first seizure occurred with no warning while she was at work. After an initial diagnosis of epilepsy, rounds of medicine, and realizing that medication was not stopping the seizures, she was diagnosed with PNES. A traumatic event that occurred to her decades before was the trigger for her PNES; while she thought that she had dealt with that event and its memory years earlier, when the seizures started coming, she realized that she had more work to do. She recently completed treatment for PNES (a course of prolonged exposure therapy) and is seizure-free for the longest stretch of time since her journey with PNES began. She offered to share her poem on this blog; in it, she describes the impact this initial trauma had on her and how she embarked on her search for recovery.
Oh My Goodness!!! This is so beautiful and so real. The words just came right at me as if this is ME. So creative for those with PNES for it seems like it will never go away.
The moments and time loss in our lives during PNES.
The moments and time not knowing when or if this will ever go away.
I can’t thank you enough for these words expressing how real this unknown, rare, but yes the patterns of so many of us out here feeling these symptoms and just not knowing how to cope or where to turn, , or just how to explain the symptoms for our mind, our thoughts, are frozen or delayed. We try everything to get better and function as we once were able to as we fight to stay out of darkness. We lift our head high and can make ourselves look beautiful inside and out but then those triggers; they come from nowhere and it brings us back down low again. Again I love this poem and thanks for sharing.