Several times a year, this blog invites writers who live with PNES to share their writings. This month, we have a moving poem submitted by Brittney.
My name is Brittney, I’m 30, a member of the PNES support group, and I cannot work due to multiple conditions. I wrote the poem below in July when I was in patient at a mental health hospital where I had 3 spells in 10 days. It was my first stay at such a place and was very triggering, but one of the ways I coped was by writing and sharing it with others.
This description was sent directly by Brittney to describe how PNES has touched her life.
With her usual PNES episodes, she doesn’t remember them happening, but she does get warnings so she can sit or lay down immediately. When she comes out of a non-epileptic seizure her eyes are open, her heart is beating uncontrollably, her breathing is heavy, and if she didn’t have a severe migraine already, she’s having one right after. The plan of sitting down was implemented when Brittney kept having undiagnosed non-epileptic seizures, which resulted in over a dozen concussions in the span of 2 years.
It was during the inpatient visit when she wrote her poem that she realized that the spells weren’t just about a severe concussion she had had 3 years ago, it was that and all the emotional trauma she had been throughout her life. Having PTSD diagnosed at 16 following a sexual assault, she flourished by graduating summa cum laude in undergraduate and graduate school. Only 6 months after obtaining her masters was when she had a head injury that changed her life, and not long after the PNES began.
The mourning light comes again
Forced into playing this hand
Eyes feel tired upon awake
Another pill there is to take
Water trickling down the throat
As the enemy makes its coat
Numbness in the warmest part
Pins and needles in the heart
Yet those shady looks begin
Feeling smaller setting in
Past mistakes that got let down
Forced into wearing that crown
The breeze of the wind is gone
Leaving only a deafening song
The warmth of the sun turns cold
Painfully watching life unfold
Finding need for solid ground
Wanting off this merry-go-round
The roller coaster ride behind
Hopefully no more crazy spins©