In life, sometimes you have to bend lest you break.
My "Compromises" of late are intended to preserve a sense of freedom, while enabling me to hike, run, walk and move across the earth with freedom, and the knowledge that if I cannot speak for myself, someone will, in accordance with my wishes, and not make decisions I disagree with or have no input in.
Since EpDetect fails me, being hyperkinetic- it's movement based to catch "odd movements"- and since it goes off if I run or sneeze- to spectacular panic in trying to quickly shut the alarm off (Unzip purse, dig out phone, press the red button while the whole phone shakes unbearably and elicits a sound like you'd hear during cinematic prison escapes- I'm still searching. Movement based options may not be the best, as my seizures- especially the last episode, from which I am still feeling sore and exhausted- am catching up, but mostly am trying to be warm, rested and get the thirst at bay- I always get a lot of it post-episode, along with dragging and zombified walking/ movements- involve at least one period of time in which I will act like I'm held down---any movements, coming out, will be stiff and not of my own volition. Not to mention the bizarre head angle I end up with, from which it's tough to move my head, and causes stiffness and pain- I think it's a relic of having had an episode in the tub- I'm trying to breathe and apparently convince myself I'm drowning, thus tipping up the head so I can gulp air... still not with it, but still trying to maintain a good attitude and work on something fabulous- it's been tough enough.
I decided on joining Medic Alert, that bastion of health-care jewelry mostly known by parents and grandparents. Here I'll have a tag, and the ability to give information even if I can't speak, and a list of my directives on hand. No, Ma. I don't want nor do I need a nurse, and I'm a horrible patient and would have her leaving in days, if not hours. I'm pretty capable- and while being a sweetly dis-positioned person, I am also very human, and can't refrain from the occasional "OH, HELL NO!" moments, or little mutinies. Besides, let's face it... my trust in the medical establishment is low to naught. I will walk over this earth, get out, and not be afraid. My freedom is mine, and if I have to practice a Scottish accent, paint myself blue and face people down wearing only a kilt, I WILL!
This is only a small concession. I still will insist that I have input, that I do not fight to be understood for nothing, that painful speech therapy did have a good effect- I WILL SPEAK FOR MYSELF, and if I am certain that my wishes are not being heard, if I am being ignored, I will find a way to speak. I will protect myself, even if I am still trying to learn when a person I don't know comes at me for a hug, I probably should not put my hands up like I'm blocking a hit. My rights, my needs, my words---I will fight for those. But if I am too rigid, I can break myself. If I bend too much, I'll be stepped upon, so I have to know when to say, "WHEN!"
I will enjoy- music, literature, my butterflies, my cherry blossoms, my hobbies, my friends, my family. I WILL LIVE. And hell no, I'm not breaking, not giving in. I will not sway which way the wind blows. If this smacks of false courage, so be it- but remember that we all battle, and we all have different strengths. I may choose to be quieter in my rebellions, enjoy the quiet, be a bit fearful of the loud and angry, get angry myself if I see someone in pain- but there is no such thing as "false courage"- just courage. The type that snorts, and has steam come out its nose, the type that needs to roar and to judge- that is bravado... that I have never had, but "false courage" would never have let me live this long. I'm not going it alone- this I know. Things may change, but I have my people in my corner. And my gloves are on. I am not "giving" in, but performing a certain graceful, savage dance a boxer performs, around the opponent My opponent is not human, but I'll fight the pain my way. And dance a savage ballet while searching for my perfect target.