You & M.E.
Grief that remains a forever process.
Revolving door, repetitious.
The body I once took for granted.
The endless energy I once had.
Nothing good comes from resentment.
Evaluating the symptoms present.
They come and go, multisystem involvement.
I feel like a prisoner to all of it.
I used to just expect my ability.
The ease of tasks and thinking critically.
The way my mind worked instantly.
This is no longer my reality.
I know I’m lucky
I’m considered mild
But the pain of my dreams, no longer running wild.
Rearranging and finding new things to value.
It’s ongoing, never ending, processing the once was.
I accept and accept again.
But, it’s never final. I know that would just be denial.
So I sit here and think what if..
The pain of that is just too much to regret.
I’m here. I’m alive. Just not fully..
So, WE at BHC keep fighting.
Pushing the needle.
Trying to remind those I care for,
They are not alone.
People suffering and people fighting for change.
It’s a whole collective…
All important. All fighting. Some for their day. Some for others.
It’s all the same. We may have M.E. But then I’m reminded, is not just me.
It’s you and M.E., trying to change the world we see.
-TBJ
This poem was submitted as part of the Reflections of ME/CFS and FM and Long COVID Awareness Day Virtual Event on May 9th, 2023.
Lucinda Bateman, MD, is a renowned clinician, researcher, and educator. Her Johns Hopkins University Medical School training instilled an approach to care that she has employed throughout her career – the patient comes first and the unknown or unexplained does not equate to a lack of proper and compassionate care. Since starting her own practice in 2000, she has served on six boards or committees, been the principal investigator for 45 studies, authored/coauthored 40 journal articles, served as adjunct instructor and adjunct assistant professor in the University of Utah Departments of Preventative Medicine, Internal Medicine, and Anesthesiology, and lectured around the world.