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Saturday, November 29, 2014

Challenges and Goodbyes

It's time for the annual "What is needed/ what needs to go" reviews. I always love a good challenge.

At this point, I'm free from a series of partials that I am firmly of the opinion, also turned me into an obnoxious, overemotional, twat. I'm probably not quite free of giving myself a good smack. I never really believed in out of body experiences before. It's a really weird and freakish experience to wander, to sleep everywhere but your bed, to look on and ask, "Holy shit, what the hell is THIS? Who ARE you? Get out of there, that's my body, and I'm using it, thank you very much." I think I'm still doing that to an extent.
I've been jumpier than a jumping bean on acid (Yes. I know it's insect larvae in a seed pod. I like the simile.)

While the time has come to say, "No, fusker. I don't like being dragged and shoved around. I don't like the fact that I was dragged into a grocery store on the day before Thanksgiving again. Especially when last time, you actually shoved me into the candy display. I've never really been that interested in having Reece's peanut butter cups that close to my tuchus. I really hate that you shouted, "How can you be so clumsy?!" I'm aware that this year, my stepfather/ something or other of 19 years went to the great VFW Fishfry in the Sky. I neither enjoy nor appreciate being the punching bag for this nor the person who is apparently answering for Mom's will. I'd assume that is for her to follow through. And discussion should take place... with HER. I am not,  cannot be responsible for her behaving like a grownup. My responsibility is ME. And I am upset that I have had to deal with others' issues and have not been able to be appropriate or myself, forever trying to stave off criticism or a smack."

You can feasibly say: 1) I've let myself get gotten at. 2)I need to be assertive, not aggressive. I found it irritating and frustrating when a friend both told me things I already knew AND told me to give into anger. Among other confusing statements, I've become disoriented. 3)I need to get me back. The me who delights in the fact that everything is funny eventually. The me who enjoys warped humor. The me that loves freedom... to choose, to run free. To learn from, even if I don't agree.
People that make me feel uncomfortable due to inappropriate touching or needing to comment on personal choice-hair style, that I need to eat this or that, do this or that, don't understand why I'd dislike certain situations or types of touching... need to go. My eyebrows, the formation of my skeleton, if I prefer to do this or that, is really my business, and feeling uncomfortable about it is wrong.

I also need to remember that the next 4 weeks is explicitly set up to set light to the darkest part of the year and in two weeks, the week of joy is coming up. What good is it to be sad over how I'm not this, I'm not that? Sure, I hope to rectify a lot of things. To recoup from illness and injuries. But I absolutely have to set aside that which does not help me.

As for freedom, of my own... I think I need to leave NY by spring 2016, and ensure better health care, better employment, better education. A place where I have control over wall colors, myself, what I believe, what I do, where I go. I have to help BETH.

While I fully enjoy helping others, I know when I've been kept in the dark too long. I won't be accepting "Let me take care of yous" it's creepy and has some weird overtones. And I hate being in debt to anyone. I have a tendency to want to nurture; there ends up being a weird Frau Boucher style creepiness if I think, "I'm not doing enough." This has to go. Being nurtured is fine. But I think I should start with me.

Tuesday, November 18, 2014

Second-Hand Anxieties

If you have an illness of any kind, making yourself an island is a bad thing to do. There's a hierarchy of needs consisting of companionship, food, and more physical appetites.

I consider myself a piss-poor patient. I get grumbly and irritatable if I'm not able to do things for myself. Even when healthy, those who seemingly doubt that I can boil water for pasta, remember to make a cup of tea (and I have a particular ritual for that: Quality tea, a tea kettle, and long steeping times.), or indulge in solo activities. Life is a risk. You can die in a bathtub, (Having had an episode in one, I realize that this is no hollow, trite fear.), or you can die doing something worthwhile. Or, Live

If you care for an independently-minded person with any one of a number of chronic illnesses, some of which can lead to increased anxiety or depression, then your job is this:
1)Teach them NOT to fear. That you can be trusted. That they can come to you.
2)Understand that sometimes, laughter is the only thing they have at that moment. Gallows humor exists because we are meant to fight for survival, to rail against death. Do not go gently into that good night. Rail, kick, scream. Laugh.
 3)It's one thing to care. When we love others, we might worry. But casting doubt on others, giving them lists longer than their arm span is wide, of everything that can go wrong, feeding them that heaping spoonful of fear, shoulds, and despair, is a horrific thing to do.
4)If you care for someone who has not had an easy time of it, feeding their own fears, before they can face them down, will cause them to pull away. And for very good reason. People need not be reminded about:
A:What a former spouse may or may not like
B:A list of things they dealt with, with said former spouse/ other partner/ fill-in-blank-here.
C:Piling on new anxieties for fun. This may or may not cause nightmares where innocent people are transformed into monsters.
5)For God's sake: I beg of you, don't answer for people. Don't talk every way but to.

Maybe... maybe you should simply remind them, indulge, and honor them for this: "Just be you." Remind them of the things that make them wonderful. Be compassionate about episodes, about nightmares, about injuries.

Do NOT, I repeat, NOT allow the person to hear you ask "Why did you have to do that at the store? You ruined my day!" Feeding guilt and fear does nothing to help anyone. The first step is to try to unlearn that fear and help them so they can be confident. A normal conversation should not  sound like a sarcastic reiteration of "Stand By Me".
What if you're out hiking alone and have a seizure?
(What if the mountains should crumble into the sea?) 
Have the person make and show you plans, medical information for wallets, ID tags if necessary. Not often will law enforcement pay proper attention to tags, to my discomfort, but you need to be there if your diabetic needs sugar and is hassled for being drunk. The same might go for your epileptic, wandering confused, emotional, and panicked by not being able to control themselves. If they cannot speak, YOU must be calm. YOU must learn to speak for them in this instance. (The only time I'd approve of such behavior. I know how I like my cocoa/coffee/tea. I know what I'm doing. But if I am unable to function and need medical care, and have no voice, then you must use my pre-planned words.) This means planning. You all need to sit down and discuss "If X happens, then you need to do Y". All should be written down, signed and agreed to.

Remember that a smile, a nice dinner, love... can make a big difference. Sometimes, you have to say, "I understand that you weren't quite with it. I'm not mad."
I think caregivers as well as patients can benefit from seeing a counselor. Some caregivers neglect themselves. This will make frustration even more likely, and far worse than it should be. Frustration is part and parcel of the experience, but it can be too much and cause a person to react differently, to show anger they previously had no idea they felt. Toxic behavior is just that. It poisons everyone.

Thursday, November 6, 2014

A Time to be Human

It's frustrating, frightening, and horrible when you can somewhat stand outside of yourself, daring, begging, and fighting for control. For understanding. An old prayer generally associated with St. Francis asks: "... Let me seek not to be understood, but to understand." Sometimes, interests and protection need to be on a human, not saintly level. I have not done so well lately. My emotions need Depends. I cannot help others until I help and heal myself.

I have problems hearing-made worse lately with a slew of technical issues and a sinus infection that refused to die. I am, however, acutely sensitive to tears, anger, or what I think is anger. Panic does nothing for me, but send me into a spiral.
I cannot handle the pseudobulbar affect ad (for awareness) as the actors are very loud and over the top. If I am freaked out, I react very weirdly. I cannot assume others understand. I can't force them. But I MUST stand for me, and my freedom. I will be pushed and pulled, scared and shocked absolutely silly. But I have to push on. I have things to face. And I know, somewhere are walls to strip down and paint a fresh blue, stars, and life. So ... while I am unable to change the facts of a cold summer night 11 years ago, I can fight my demons now.

While I shared the ad about two posts ago, I cannot watch it. This discussion is long but done calmly.

Wednesday, October 29, 2014

People First-With Some Apologies to Emily Post and Mrs. Beaton

How do you introduce your friends?
"Oh, Janet, I'd like you to meet Jen. She is a kleptomaniac who also likes croquet and the music of Gilbert and Sullivan. Klepto-Jen, this is Janet, who once ran for the "Puppies to End World Hunger" campaign, has a rather bad habit of chewing garlic cloves whole, (Oh, have a breath mint, dearie.) and once sold herself to an electrician for $5 and a new lamp, but she does have a heart of gold and hasn't run over any old ladies in about three weeks. Well, you two should have a lot to talk about!"

Descriptive language is important and does paint a vivid picture. I can think of two children playing with a ball outside, or I can think of two sun-kissed children playing with a big, blue and white ball, in a sunny meadow.
Your friend Janet has famously foul breath. Your friend Jen needs to be frisked after a party. Some other details aren't really necessary.

How about the words we use to describe people? Jen and Janet seem more human and fleshed out. But what of Bevis, who likes to conduct music while listening to the radio, usually brandishing a large zucchini. One probably would not call Bevis "The Great Zucchini in concert!" One would probably say, "I'd like you to meet Bevis." Now, let's use "the Great Zucchini" one more time. "How is the champagne, Margaret? Oh, fabulous! Margaret, I have someone here that you'll be delighted to meet. Margaret, this is Gangrenic Bevis." (Bevis has gangrene, you see. He's a big hit at parties.)

Cocktail parties would be particularly awkward and frustrating if those with health conditions or rather interesting lifestyles were introduced and discussed rather than, or in a way that their actual fun quirks. (It's also really bad etiquette to (A)Ask someone what they think of a person, to inform them, "Oh. Really? Well, Frank doesn't seem to have a real personality, and always plays parts. Plus, he's really a liar. Haven't you noticed?" or (B) to do this while smiling in Frank's face and bathing him in empty flattery.)
So, let's say you have a friend with a medical condition.
"This is Josie. She has epilepsy."
"This is epileptic Josie. She seems to like that a lot more than 'Spazzy Josie.'."
Which of these is correct? Neither, really. One is not their medical condition. One might use certain adjectives when asking for certain accommodations, but condition-first language aids in dehumanizing ourselves. When this happens, we are left a shell of ourselves.

Here's a fantastic idea: "This is Abigail. Abigail, this is Josie. Abigail, why don't you tell Josie about your collection of pornographic post cards from the 19th century?"
Another no-no:
Person A:"Hello, Felix! How are you?"
Felix: "Hi...I..."
Person B: "Gail! Let me tell you what Robbie (Felix's older sibling) is doing! Oh, Henry too? Oh those guys." (By now, Felix is either standing stock still with a face changing between white, pink, red, and purple, or quietly going outside.) Tip: Sotto-voce insert an inappropriate comment. With luck, they'll have to recover from the shock. Don't be TOO filthy.
Gail: "Felix! How are you?"
Felix: "Gail! Hi! Well, I just started/ have been..."
Person B: inserts embarrassing details and rather well-disguised put downs.
Felix, my friend, there is no escape here. Smile and be polite. But try to say "Excuse me. But I'm Felix, I think." And you probably should have a wine. May I recommend a lovely Reisling called "Relax"?

Tuesday, October 14, 2014

The Holy Purple Pumpkin of Antioch

The yearly Purple Pumpkin Project is an effort to spread awareness about epilepsy. Epilepsy affects 1-in-200 adults, and can be caused by many factors. In this world, there's emphasis on breast cancer awareness, a worthy cause, but surrounded by charlatans and pushed to the exclusion of anything else, including dangerous mens' health issues such as prostate cancer.

This is a pink-washed world: Giant pink buckets of the Colonel's best, drill bits for fracking (Seriously, Susan G. Komen?!), scarves, hair supplies, coffee mugs and toasters. I'm holding out for a purple dildo that plays "Stand and Deliver" and says "Save the brains!" for no other reason than this:That still wouldn't be the worst or most inappropriate piece of awareness merchandise.

We really don't need a purple-wash, per se. What we need is this: a fun and fantastic way to show where our hearts are and can lead to discussions that can save lives. I've found that neurologists hold back necessary information and use scare tactics.

For news and information in fighting against epilepsy, please visit:
The Epilepsy Foundation.
For a list of more links or if you're outside of the US, please visit: Epilepsy Information Resources- I need to do some updating, and if you know of anything, please let me know!

The first step in fighting: You may already feel anxious, fearful or dehumanized by your illness and by medical professionals who NEED TO DO BETTER. Your doctors need education every bit as much as you do. You are not insane. You are fighting an illness that affects your brain. You have done NOTHING wrong. You are not alone. Keep going.
"First shalt thou take out the Holy Pin. Then shalt thou count to three, no more, no less. Three shall be the number thou shalt count, and the number of the counting shall be three. Four shalt thou not count, neither count thou two, excepting that thou then proceed to three. Five is right out. Once the number three, being the third number, be reached, then lobbest thou thy Holy Hand Grenade of Antioch towards thy foe, who, being naughty in My sight, shall snuff it"

Monday, October 6, 2014

Mea Culpas and News Updates, or, State of the Beth Part II

Everyday, I try to learn a new task, perform a new craft, improve a recipe, learn something new. Even something as odd as the mating cycle of ferrets, or as one Craigslist posting would have it, "Cat-snakes."

But today, I learned about one particular hangover of traumatic brain injuries, hereafter called TBIs.

They can cause you to be rather labile.

 I am irritated, because I was handed a diagnosis, a death sentence (I've since decided to go with the conclusion that Dr. With A Terribly Offputting Name was terrifically wrong. And I celebrate this every moment, but especially every year!), medications that, across a wide scale from broad-spectrum to targeted, I ended up being allergic to. I was told that epilepsy meant I couldn't have a family. That no man would want me. When I was pregnant, I was told to abort, when I asked what I could do, because I didn't like the side effects of AEDs on a fetus. Dr. Offputting told me in no uncertain terms to abort. I refused. After reiterating his rather dark prognosis, and not giving me anything resembling proper medical care, I left shaken. Tonight, I learned about an interesting hangover to TBIs. Namely, inappropriate reactions. Tears or laughter (When not discussing TBIs, I tend to think snark is a wonderful way to handle things, and that there is no such thing as inappropriate laughter.) I was either not told about this, although telling me that I was bad, dirty, uncooperative, too emotional, and that any pain I was in was my brain and not my body, meaning that my kidney went undiagnosed for years... until, suddenly, it couldn't. I did everything to avoid this, went to doctors, support groups for conditions I didn't have. I became far more anxious. I lost everything because I didn't have proper resources. I became resentful and distrustful of doctors who hurt and insulted me, while I counted down the time until I'd finally just give up and quit.
I never did. I can't, I won't. But being told "Well, this is what happens after a TBI, and we are going to monitor more than your nutrient levels on AEDs" would have been fantastic.
I spend a lot of time teaching on living with epilepsy. I fight that anxiety and depression are common. That talking about it, that fighting... is what is necessary. How to deal with life stuff, dating, going out in public, dealing with the cops. I never knew about inappropriate laughter, tears or anger, except in the confines of Parkison's Disease! (This really should have alerted me. Parkison's affecting the brain. Derp.) And while I was either not told about or slept through a discussion on this particular symptom... (I'm sort of betting on the former more than the latter.) I do vaguely recall a few commercials, that like most, I ignored.
And...while watching to actually catch up, I felt an urge to take a pee break. How could I ignore and not figure out that "Wait... that's... " I've called myself overly emotional, the TBI distilling certain small things and making them REALLY apparent. Oh, God, I've mimicked every crying Virgin Mary in existence. Thank God, it was in saline, not blood. That's just messy. I have a lot to learn. I also am having an inappropriate reaction to a well-meaning ad... because it's over the top, and sad people/ loud people put me on edge.


Are you still here? Good news! I am 8 months free of tonic-clonic, aka grand mal seizures. I am two months free of smaller episodes, (I am estimating, but I think I can say 8 days shy of the calendar date is an allowable estimation.)
Last month, the 7 and 1 month point marked a 4 year point - if not the 1 year point I'm reaching now. I have now gone longer without a seizure than I have for the past 4 years. I still need to learn to "find" words- I tend to know what I want to say, and end up not being able to speak, or not being able to spit out the word at the end of my tongue. I always had some problems with speech before my injury, the distillation process means that when nervous, I can't hide them as well. I turn into a malfunctioning robot far more often than I'd like.

But I am better, day by day. I will close before I somehow end up singing a 90's TV show theme song. I think, rather than recriminations, party time is what the doctor ordered. :-D
*Ask your doctor if party time is right for you!

Tuesday, September 16, 2014

State of the Beth?

*Note: I have reached 7 months free of tonic clonics, one month free of the smaller episodes.
On the whole, I'm doing fantastically in that department. *Crossing fingers!)

We all like to think that we can do it all. I enjoy that feeling of accomplishment from not having to say "Help me!" and doing first, asking questions later.
(There are those who say it's easier to apologize than ask for permission, I'd say they're right...too right. I am working very hard to stop that tendency, actually. I'll see how it goes!)
I managed to teach myself a terrible lesson, going by the cues I got from those around me. Well-meaning, but ultimately, fearful- in that I let their voices become part of my internal narrative and shook with fear at nice people who said "Oh, let me help!" (With what? I've only cooked for myself and others about a thousand times!)
Don't take over unless I ask you to.
Teach me something I can do that is useful and keeps me out of trouble.

I learned that those who went nuts insisting that I do things by myself had a point- I'd feel very good.
Then they'd ask who helped me with the project I'd worked so hard on.
Or they'd insist on "helping" me with simple tasks I'm already good at... making tea, filling a coffee pot. Look, if you see me with a 5 gallon jug of water, feel free to help. Except on spectacularly shaky days, a 12 cup carafe is not going to be too much trouble.
I hate the lists- "Ask Josie if she can help you! What do you mean you don't want to borrow milk from Jenny?" and more.
I really detest doing something, being proud, and being asked who helped me.
Or actually asking for help and getting asked why I told the person I asked anything instead of struggling. I hate that far more.

But I have had to come to the conclusion that the last 11 years since my head met a sidewalk,  did leave a mark on me:
*My hand control varies. I am nearly out of coffee cups, have gone through about 1/3 of a set of 16 drinking glasses. My white shirts are not so white anymore... I might as well give them a coffee bath or tea-dyeing, or even a tie-dye! And the gross (144) bandages I bought? Gone.
*My AEDs messed up my eye sight so that close work requires both my reading glasses and my contacts.
*I'm ultra thirsty all the time... I also have to keep both saline and fluids in balance.
*I used to make small wooden toys... jelly bean/ gumball machines, a little jigsaw puzzle... without it being tough. I'm hoping to repair a gumball machine I made at 14- clean it up, make a new plug for the hole at top that the candy is poured into. It needs a wide cap with threading for a secure seal. Take care of the signs of being packed away for years. Maybe stain it a pretty, bright color.
*Sewing is something I can do, But I've struggled at cross stitch.

I sometimes do have to acknowledge what I can't do anymore, figure out what I want back, What is feasible?

First and foremost though: I am not a rug to walk on and while being polite-even coldly polite- is fine, I need to say, without guilt, "Look, you can't do this."
I'm attempting with everything not to apologize... make it mean something, like when I say no, another word I struggled with (the opposite way) So far I'm still awkwardly replacing it with "Suck it" in conversations with friends.
But, I'm absorbing a few nutrients now. I've got a lot of fish to fry, as it were... projects, the need for escape.
I also have to stand up for me. No more letting myself be dragged, to have my happy moods changed into something else. No more letting people talk over me. It's upsetting and embarrassing, and I will have my say!
I will quit doing my malfunctioning robot: Intend something else, short circuit, head swivels around by a thread, sparks shoot out and I'm guaranteed to say something that, if not intentionally so, strikes people wrong, but can also be the words I've thought about saying while people shouted over me and told me that I had to speak this way, no that, and couldn't use my hands, (Impossible), insisted I translate all conversations with deaf people (Uh, no. That's private.) And sometimes it gets unleashed on the wrong person. Or it's entirely innocent and yet... phrased very badly. That's among my many tasks.