Leave A Better World, or Leave No Trace

When life makes me insane, or I need to get out excess energy, a wandering I go. I love the water, and the plants and animals. I do my best to leave no traces of myself, and take nothing but photos. 

I pray, in a small part, that I may leave improvements here, or no footprints where they're not needed. 

One Would Ask That We Stop Using The Royal We and Them. Please

This MUST sound odd. It's possible to like people but get bogged down easily. It's also possible to find that, when someone finds themselves in a group, they might be polite about things... My closest friends may know it's been about six months of fighting for better medical help, grief for a family member, yeah I don't recover fast, trying to sort out many different things, and generally, get me under control while I search for ways to help myself and keep my mind from tick ticking loudly while researching VNS, etc. and trying to make a dent in the antiquated treatments. They made me sicker.

Do NOT pull me aside like I am a recalcitrant five year old, shout at me, and make accusations and assumptions. Don't mock me because I'm pale... without sunblock, the sun does worse than burn me and my eyes are sensitive to light.
Do not speak for collective groups... the royal we makes YOU sound like an asshole, and WE would hope that one would learn some manners. Ew. Ok. Now. Asking politely might gain a general, polite answer. I want fresh air. I like people. I don't like loud noises and people talking over each other loudly and making nasty comments,apparently for fun.I got a new haircut. This is obvious. I like it. I'm happy. Let it go, it just strikes me the same as the guy who asked me if I could permanently straighten it. Don't like it? It's my head! Judging me and saying do this, and blah blah, and why like that, and everybody does this, especially negative things... No... that's not true. Also, my life is mine to lead as I choose. If I am quiet, I am quiet. If I am happy,let me be so.

I Want To Believe, or, Not My Circus, Not My Monkeys

I want to believe.
I want to believe that:
-Every hooker on the street has a heart of purest gold and will suddenly burst into Memories from Cats with just the right knowing look.
-Every homeless person is really an angel in disguise, even the one drenched in his wee and shouting epithets at you.

But: the world is harsher and colder, and while I detest judging people harshly, I can't afford to ignore my gut.
There are freaky, nasty people. Sometimes, they get close to families, and tend to pick on one person with both gossip and lascivious remarks that erode trust that might already be hard won and shaky.

Now:
-Responding to anything a person is happy about with negativity and gossip and phrases designed to dig at insecurity... this is not normal, or shouldn't be.
-Asking about people I'm not involved in any arguments with and speculation on if I see them in Mass. Subsection 1: Not my circus, not my monkeys. Subsection 2:if you're in church, it's not human things and battles you should focus on. There are bigger concerns in play at church, I'd think.

Let me reiterate because while asking me to go back to doctors who have hurt me, stating you'd talk for me, after years spent wearing me down and getting me to think something was wrong with the way I spoke and carried myself, and doing just that, to my detriment, you want to keep it up, want me to hurt in order to heal?

I can speak. I have not spent time healing and fighting to depend on abusive and nasty people for a basic human right.

Wearing me down and telling me "You can't" to anything, going after me ad nauseam, and treating me as ears for gossip and hurtful things has to quit. As for nasty personal friends: Not my monkeys. I respect myself too much to let nasty old men with lust and more around me in return for "help".

Back in the Habit Again

Habits. For survival reasons, I packed on a few odd ones. At the moment, I'm figuring out which don't suit my purpose anymore and which will let me survive better,faster, leaner,
... we can rebuild me, we have the technology!

Having the capability to wax sarcastic is good. Without it, I'd be driven positively mad! But it's nice to have actual conversations where, bearing in mind my usual bugbears, ambient noise, technology unknown, my pointy elf/Spock ear hitting a screen in the wrong place, funky volume control on speaker... I can be understood and can be clear as a bell and wax sarcastic without losing my lede. Not being frightened and squeaking like a little girl church mouse,  and perhaps setting up everybody for frustration is best. I know I generally have a clear directive: for speeches, index cards and figuring out the "Smile while you talk" gambit while not looking like a freak. Here and there I break past my family's habit of talking for me, which they do in good intention, but leaves me staring at people wide eyed or attempting to steer them my way. Trying to be polite in turn has screwed me up. I know better than to try anything with voice recognition... I once had to ask a medical company, in clipped tones, sounding like I was talking to Reverend Jim, or like a robot, "Can you. Help. Me. I. Have. A. Speech impediment". Mild, but there, leading me to annoyances when I have to repeat myself in endless, exhaustive loops. Sometimes, I find a way, with friends, I simply squeak- shout something mildly inappropriate like, "I said, I'm signing you up for a ceramics class!" I need to say, no, I can speak for me. To show it by being clearer... by answering the more simple questions. The more complicated, I'll leave until my eyes and face can help me.

Sleep schedules:
I've been doing phenomenally well. But being woken at 6 AM... and there is no need to comment someone sounds tired, for goodness sake. It's 6AM... has messed me up by 2 hours this week. I think I have to stay up a little later to get the averages back.

The Times, They Are A-Changin'...

Appropriate Treatment:
Sadly, medical care and its quality can still rely on how much a person has. Finding a good specialist who will deal with the Medicaid hassle is a rarity. And sadly, so many still have trouble when their job isn't simple. Are poor people inclined to be sicker? And if so, is the correlation or causation? Poverty is not a causation here, as epilepsy, like any illness, can strike at any economic level. Ah. Contributing factor. Which leads to:
1)Burned out doctors not inclined to dig below the surface, and are inclined to be judgmental, walking into gray areas of patient treatment... what is bad bedside manner and what is abuse?
2)Along with side effects that can increase or decrease an appetite, there's mood changes, nervousness, and innumerable other side effects. Prescription sheets could be made into a movie by Rob Zombie. Then there's the tendency to sap nutrients from the body, and some patients might need to go on supplements that they can barely afford. Not to be disgusting, but if the situation isn't rectified, sometimes their pee can be worth more than gold!

I've been following trials for varying "gentler" drugs. They tend never to go past the formative stages.
The classics never die, do they? Well... Depekote has shown in some tests to decrease brain size. That I caught the Email and knew, without the use of a brand name, exactly which drug was being discussed, scared me.

What's being done? Every "Living With" book I've seen indulges in prehistory, up to and including nasty treatments, and offers a small chapter on " But it's getting better, honest!"
Ok. So something needs to be done and the usual treatments are detrimental. This, besides the poverty issue, is pretty universally accepted. But I haven't seen anything saying, "We have started doing ABC...". As for the poverty issue, this too needs rectifying. Part of it begins with social services, the insurance companies. Part of it is the doctor's responsibility. The patient needs to ask questions, to say no when something is wrong and demand proper care. They should not need to draw diagrams. They should not feel shame.

Sources: Epilepsy, medical care, and poverty, 2011-Health Care Disparities in Epilepsy, 2011
CIDPUSA Epilepsy and Nutrition
Studies on Depekote and Brain Shrinkage-Epilepsy.com: Valproic Acid Reduces Brain Volume?

Emily Post Can Teach Your Grandmother to Suck Lemons

I think the time has come to bring back polite convention. "How do you do?"Can be answered most politely as follows: "How do you do?" "How do you do?"or, "How do you do?" For continental flavor, one can reply in Swedish: "hur mår du?"  Now that I sound like Emily Post upon sucking a lemon...

Conversations are already fraught with fear for me. Am I audible? Are there forces beyond my control that I have to compete with? Is someone notoriously shouty? Am I running my words together and feeling weird? Am I having an off day? Add someone who will joyfully speak for me, and think it's for my good ( Ground rule: If,  and only if I'm unable to communicate do I wish to have others say words that at aren't mine and claim them as such. It's simple, and I'm being reasonable, right?) 

Also, for the love of God, there is no call to suddenly whip out things to show and pass them swiftly in front of my face. Um, scary, much? Swiftly moving hand, ahoy! 

Let me see if I can create a simple diagram:

If someone engages me in a conversation... "Beth, do you like Where you are now? What do you do for fun?" I'm going to be very frustrated if no words can come out of my mouth in answer because someone has spoken over me. (These are the moments I'm grateful for dark sunglasses, as my expression can be slightly hidden... I hope the fact that I'm tempted to whisper something like, "My BDSM workout videos were a real hit," isn't apparent to people who've babysat me.)
The related, speaking for me... claimed as a good thing... uh, NO! I can speak! Help me, don't hurt me!
I like people, but I like to be spoken to... "My friend bought you dirty cupcake tins at a sex shop... knows your humor is a little raunchy at times" will make me smile. "She is very silly, wonderful sense of humor"- I know it's meant well, but coupled with everything, I feel like a well trained puppy and want to scratch my ear with my foot and look disgusted. 
Plus: All those years of speech therapy? Um... what use if I don't practice?

Dream a Little Dream

Everything is a work in progress. I occasionally get irritated when things follow the "One step forward, two steps back" approach,but I'm enjoying... becoming aggravated and frustrated, throwing up my hands, won't help. Sleep is precious. It lets the body heal and rebuild itself. I've always been something of a lark/ party animal hybrid. Being exhausted may mean I sit and look ready to drop but not quite. I'm working on scheduling a bedtime... and a sane time for waking up. So far, it's ensuring comfort... am I past old nightmares, have I cleared my mind.A melatonin formula with a fast release and steady release double coat helps... I see not like the idea of me on sleeping pills. A glass of milk... not hot,just your standard cold glass of milk helps. I find chicken helps, but this is probably just me. Sometimes, I'm good... very good, for weeks, then am slap happy for God knows how long, then I'm up with the farmers. The first thing I want to do is sort out my next project, go grab some nature photos, and clear my mind. I know my basics and try to remember them: 1)Remove stressful activities and their reminders from bedroom 2)Invest in good-quality sheets, blankets, etc. 3)Start eliminating caffeine around dinner time 4)Try to Dr-pressurize around that time too. Music, good books. Some meditation practice. I need to quit studying late. I want to know more,figure things out. Sometimes I wish I liked mindless romance novels, but I never can force myself. Go for a walk. I also need to just remind myself that I've got this!