Last night, Em was talking to me and said something that floored me, although I shouldn’t be surprised.
She was going on about 4 hours of sleep – she was literally awake all night Wednesday night. Didn’t fall asleep until 1 pm. 1 PM Thursday afternoon. Slept until about 5, then I made her wake up and eat.
Anyway, last night she had taken her meds and was playing on the wii until she was ready to go to sleep. She mentioned that her neck was hurting really badly and it was giving her a terrible headache. You couldn’t tell by looking at her that she was miserable but, of course, she generally is, even if she doesn’t show it.
So, she was talking about her head hurting so badly and said very matter-of-factly, ‘Like right now, it is unbearable.’ She paused for a minute as she made Mario spin on the screen, then finished, ‘but I have to bear it.’
It was like a punch in the stomach but that is the story of her life. That is what the doctors need to understand. She is bearing the unbearable, every day. The levels of pain she lives with are unbearable, but what choice does she have but to bear it? There is no cure for Ehlers Danlos Syndrome and treatments can only address the symptoms. The only option is to live with the pain and suffering.
So far she has been given relatively mild pain meds – tramadol and tylenol. They do very little to take away the pain. Maybe from a 10 to a 9 1/2. More often it just stays at a 10. The pain keeps her awake. Her joints dislocate. Her head is excruciating most of the time. Her neck is unstable and that is life threatening. She is dizzy and nauseated to the point of being unable to eat most of the time. There is nothing the doctors can do to make it go away. Nothing. There is no doctor in the world who can make her better.
And yet, she is 12 years old and very much alive. She has learned that a person can be in horrific pain and live. Live well, even.
Tonight she is going to a birthday party sleepover. I have my doubts that it is a good idea and she may end up coming home at 4 am but so be it. She deserves a life. She will pay for it tomorrow and probably for days after but she deserves a little fun tonight.
Maybe it will make bearing the unbearable a little easier.