Today is ME awareness day.
Soph and I have been together for 12 years. She is a speech therapist and the most extraordinary person I know. She is beautiful, darkly funny, stubborn, fiercely independent, and selfless. She loves cooking, watching the birds, poetry, flowers, dancing, eating, and countless other things. She still loves those things, she just now has to fight to just survive every second, minute, and hour, instead of living.
Because Soph has very severe ME and whole body neuropathic pain. She is currently bedbound, only managing to go to the bathroom every 2 weeks on average, and even that she does through pure stubbornness and force of will. Her pain is indescribable, but right now we watch her writhe and hear her wail as there is no respite. It is relentless. It is brutal. It is never ending. She sleeps for only one hour a night, but has nightmares about being stabbed because there is no escape from her pain. She lies in her bed 24 hours a day, in a darkened room, with sunglasses on due to her light sensitivity. She has sound and touch sensitivity. We have not kissed or hugged for several years. She is probably the poorliest person I - and most likely you reading this - will ever know or read about. And we (modern medicine and society as a whole) do not know how to treat people this severe. They get left and forgotten about. And when they’re so severe you do not hear from them, because Soph can barely use her phone due to fatigue and cognitive issues and mainly messages in emojis, only 4 or 5 times a day. It is traumatic and exhausting to try and put into words how ill she is, and I do not do it enough. This is me trying to do it more, maybe little and often will be easiest.
Loving someone with severe ME and neuropathic pain.
Seeing Soph is the worst part of my day
I have never felt closer to her emotionally
While never feeling further away from her physically
I have never had so much to talk to her about
While communication between us has never been so difficult
Her heart has never been more full with love to give
But she has never been less able to show it to the world
Soph has never been more vulnerable, poorly, and weak
While never being stronger than she is right now to survive every day
I still feel like I know her
But ME and the pain makes it harder and harder to see the glimpses of her
But when I see her eyes, or a tiny smile, seeing Soph is the best part of my day.
