PNES Poem by Nita Dholakia
To wake up in the morning is what I wish
Waking up in the afternoon is my truth
Morning or afternoon, getting up is my win
Relaxed and peaceful sleep is now my dream
Jolts and jerks with silent grunting
Screaming from annoying pain
My new routine is not plain
Feet and Legs want to coordinate
Waist says, “stop that energy waste!”
Hands do not cooperate
Head says, “This, I can’t tolerate!”
Brain says, “I am the king”
Body says, “That’s what you think.”
When did I, in this entire commotion
Lose my Brain and Body connection?
Diamond painting and sketching
Therapy and future diary writing
All of these efforts
Are not enough as comforts
The overpowering pain is mine and here to stay
But the hurt is that my family also suffers this way
This deal of “pay for one and get more”
Is a bargain that I would not hunt for
Fatigue, lack of energy
Neurons firing and burning pain
All on top of my foggy brain
Never thought of and new for me
At least now I have the name!
Socializing and sharing fun
Those days are gone and done
Everyone asks but no one learns
Explaining over and over again is taking a toll
I am allowed no other role!
CBT and antidepressants are the approach
Better or worse are both par for the course
Unseen, unknown territory
Is my new life story
Almighty listen to my praying
This experiment is terrifying
Your children are wracked with pain
There is nothing that YOU will gain
Damage is uncontrollable
This pain chain train is unstoppable
Please make it tolerable 🙏
Nita Dholakia
Thank you for being so vulnerable and brave Nita, This hits home for me and you couldnt have written this any better. Thank you.
The PNES poem had me in tears. This poem couldn’t describe PNES anymore perfectly. My 12 year old daughter has recently been diagnosed with PNES….after a year long of missed diagnosis until I started recording her episodes. It’s taken away her/my quality of life. Missing school, work, track practice. Doctors are NO HELP! This really truly sucks for anyone going through it and their family.
This is a wonderful poem. It captures the pain and suffering of the person going through the PNES, a perspective families need to hear.