Imagine being stuck in a body that doesn't respond to environmental change properly. Imagine being along for the ride and there is nothing you can do but try not to grit your teeth too hard and wade through it. Imagine someone next to you making fun of you being a big baby and telling you to tough it out. Imagine finding out years later you've got a real condition that not only makes you more miserable, but impacts your quality of life in ways people who mock can't even imagine.
I've apparently had Raynaud's since childhood. Waiting for a school bus on a snowy morning had my teeth uncontrollably chattering when others' weren't. Doing chores involving cold water on a self sustaining farm included years of garden to freezer or shelf food prep. Working outside in winter to the point of not feeling hands and feet was not only expected, but very much taken for granted, even when a person couldn't feel their hands and feet again an hour after coming back into the house.
None of us knew the difference, except that I'm more of a whiner. I was the big baby, and I learned to tough it out. What I've never told anyone is that as I've gotten older, I've experienced some very scary incidences of vasoconstriction in my limbs to the point of my arms, legs, and face blanching completely white, and teeth chattering uncontrollably, not from going outside, but from simply sitting on my couch watching TV (or even sleeping) and a sudden nervous system feedback glitch tells my body I am in the arctic and I must conserve heat as much as possible, and even though the house is plenty warm, I'll chatter uncontrollably in 3 layers of bathrobe, sweater, and blanket in front of a space heater until my body can believe it really is hot and I can finally throw all that off.
I used to take hot showers, but that got dangerous, and nowadays hot water triggers a histamine response, so I look like I'm rashed out from head to toe when I take a hot shower. A hot shower would be really good for my fibromyalgia, but I don't dare go more than warm.
I live at odds with climate control. I wear sweaters all summer even when I feel warm because I'm so intolerant of air conditioning. I wear short sleeves in winter so I can layer up and down as needed at the drop of a hat because the tiny degree range from the heater going off to clicking back on is miserable.
My body cannot respond correctly to even the smallest temperature change. I avoid summer sun like the plague because I overheat so easily, even though I wear sweaters in the house and set the thermostat higher than many people do. Imagine being like this and going through hot flashes. That was fun for all.
I never wear or use fleece, because I'll suddenly need to strip at any moment or collapse from sudden heat exhaustion. I nearly always have sweaters or extra shirts hanging on chairs to grab and throw on in case I feel the least chilly. I own the temp controls in every car I sit in, and to other people I seem obsessive with fine tuning temp regulation. My family is so used to me being like this they don't even question it.
But it's a real thing. If I'm in a crowded area and overheat, I have to bolt. If I must get through a cold area for some reason, I have to deal with recovering from feeling colder much longer than I ever let on. If I'm at the back of Walmart picking up milk and eggs without a sweater on, I'll still be very cold by the time I get back to the register, and the vasoconstriction in my hands will make even swiping a debit card somewhat difficult. I've broken my eggs a number of times just getting them home because I couldn't control my hands.
This is only one of several things that affects how my hands work, but I know a lot of other people live with Raynaud's too. For some people it's fairly mild, your hand hurts holding a cold can of pop or beer. For others it's a game changer, deterring you from hanging out at stadiums for sports and concerts, or doing fun things with family and friends in weather temp extremes. It seems like a simple thing, like a no big deal kind of thing to have a weird cold hand and feet type of syndrome, but as people age, it becomes a much bigger deal. Less blood flow means less feeling and slower healing. Over time, this sometimes turned into amputations for some people.
It's hard imagining what things are like for other people, but comparing their complaints to how you feel the world isn't fair. If someone says they're cold, they really are cold and need to warm up, and even if you are hot yourself and think they're just whining, you don't know whether they might be living with a condition that will one day claim a limb.
Fast Facts About Raynaud's Phenomenon
Frequently Asked Questions - The Raynaud's Association
How Serious Is Raynaud's Phenomenon? - The New York Times
Just as Ford tells Arthur, "Always know where your towel is", I always know where my sweater and socks are. And I own an insane amount of gloves. Gloves are awesome.
~secret code stuff~
Currently (2023) my most updated blog is everlasing.
Spaz is a useful side blog for sorting other stuff out.
Thursday, December 15, 2016
Monday, November 21, 2016
causal awareness
I struggle every day with a human phenomenon known as blame, and I know others do, too, so I'm going to go through a thought process with a list. Some of the list applies to me or other people I know in real life, others I know across social medias, and still others I've read on blogs or in articles. I'll make this simple.
YOU did not cause your cancer. You might live in a body that is genetically and environmentally more prone to cancers, but your actions are not to blame for you being born in that body. There are plenty of people who never get cancers even though they do all the things that can contribute to cancers, and there are people who get cancers even though they do everything right to avoid them. We cannot see our body coding and the actual factors that actually trigger a group of cells to start skewing into madness, so how can YOU be to blame? That being said, yes, there are things we can do to limit the possibilities of aggravating cancer eruptions, and there are more things we can do to heal and restrict them. But never for a second believe that YOU caused your cancer.
YOU did not cause your arthritic condition. Choose one, there are so many kinds of inflammatory arthritic conditions on this earth. You might live in a body that responds incorrectly to information feedback, and it hurts, but you are not to blame for that pain you live with, the pain that makes everything hard, the pain that no one else understands. There are lots of people around us who can be as active as they want with their bodies and never elicit a self defeating inflammatory response. Good for them! But we cannot recode our bodies to stop responding incorrectly, so how can that be your fault? That being said, yes, there are things we can do to hold that response down, to stay functional, and to manage pain. But never for a second believe YOU caused or deserve your fibromyalgia, your achy joints, your severe spinal pain, your nasty headaches. NO ONE deserves pain like that, and you are fantastically brave living through it.
YOU did not cause your diabetes. A family could be genetically riddled with it, and one person gets skipped and can eat bags of candy without ever having a glucose spike. So hard not to be jealous of that, especially on holidays and other get togethers where people eat whatever they want without a care in the world. Logically, if we could cause our own diabetes, the entire human population would probably have died off by now, right? Our choices are not what causes an epic fail in our digestive system to process a major portion of our food. That being said, yes, you can make it worse by ignoring it, you can make it better by paying attention to it, and you can learn to live a long healthy life with it. And then there are some people who do everything right and still have a horrible time with it. NEVER feel guilty for having diabetes. Diabetes is no one's fault.
YOU did not cause your child's genetic defect. Spina bifida, cystic fibrosis, Down's, cerebral palsy, insert long list of genetic problems at birth with a variety of reasons for happening. Scientists find out why, medical experts look for ways to avoid them, but you did not bring that on your child through any fault of your own. We are innocent to the mysteries of the universe, and we do our best with who we are and what we have, and ironically, it might not even matter if you come from poverty or wealth for these things to happen. They simply happen, and we learn a great deal about ourselves learning to love and help special people with extra needs. That being said, we can now ask- Where would we be without this compassion in the world, and I daresay the extra drive to find out how our bodies function and thrive? Others who proclaim judgment being expressed are much further away from learning compassion and will take longer to understand what is missing from their lives. Simply nixing the problem has a way of backfiring, as we can see through history. People become harder and meaner when they weed out the weak, which casts long shadows on notions of spirituality. Some even suggest the weak are here for us to learn to be better. NEVER believe your child (or you, if you are an adult living with a genetic defect), is your fault.
YOU did not cause your mental illness. Brain chemicals are much more complex frontier than digestive chemicals, and neural synapses and miles of nerve pathways are more intricate than nearly anything else that is scientifically studied. This mystery of consciousness and awareness being possible on a physical plane is still so overwhelming that we still don't know what to do with it, so it's easier to make slots for behaviors, like a fishing tackle box. This goes here, that goes there, and if you don't fit a slot, then woe be to ye. We are finding out it doesn't work that way. Everyone's consciousness swims through a sea of chemical interactions, and some wade through sludges that make getting through a day very hard. Who in the world even wants that? And then the medical experiments- we haven't come that far from institutions and lobotomies, and now controversies over raising generations of medicated children. No, you didn't cause any of it. We're all swimming in this chemical sea, and so much is easily masked with drugs and alcohol in attempts to deal with something we still don't understand is happening. That being said, yes, opening our eyes to learning new cognitive concepts is the first step, and choosing to learn how to live better with our chemical imbalances is sometimes preferable to self doubt, self loathing, and self harm, but YOU didn't bring this upon yourself.
YOU did not cause the bad weather happening to you and your people. Droughts, hurricanes, earthquakes, flooding, fires, meteor hit, lightning strikes, hail damage, tornadoes, wind sheer, avalanches, and all the resulting illnesses, crop failures, transportation problems, famines, injuries, deaths- all are just part of living on this planet. You are not to blame for where you live and your behavior didn't cause a deity to mass torment everyone around you. Sooner or later one area or another will go through a massive tragedy, and that is when we find out how kind and generous the rest of the world can be. That being said, yes, we can take steps to make surviving catastrophic events more probable. We are working on early warning systems, better travel in some places, programs to help those in need of rescue, and for those who can afford it, insurance plans to hopefully make rebuilding easier. NEVER EVER *EVER* think the world is terrible for everyone because a handful of people deserve punishment, because it doesn't make sense for any God who is rooting for humans even slightly to be meaner than we are, seriously.
I could go on in many other ways. I'm not even going to touch being born into religions, political regions, skin colors, and especially orientations (which I personally think are as varied as everything else we live with in our bodies), but you can see how none of us cause our own circumstances that we are born into. There is no reason to blame ourselves for what we must live with, and no reason to hate others for what they cannot help and didn't choose. NONE OF US GOT TO CHOOSE WHO WE ARE. Anyone who thinks they can judge another from where they sit very simply just wasn't born into a different body, different family, different place on this earth.
There is this thing that happens inside of people when other people judge. We turn it into self loathing and self harm and then feel frustrated and angry back at the world for our self blame. We don't mean to make things worse, but hating ourselves and other people based on what other people say or think doesn't help ANY of us at all. Fear and sadness drive us into dark places, and allowing ourselves to be driven into ways of thinking that we abhor is super fail. We can believe what we want to.
I believe we live on a really tough planet in fragile bodies and most of us are really really scared because bad things keep happening and we feel like there's no hope sometimes. Yes, but that's only one side of the coin we call awareness. I also believe we live on the most beautiful planet in our galaxy in awesome bodies that teach us what being real heroes is all about, and WE are the hope we are looking for.
Be excellent to each other, never give up (never surrender!), and go be awesome. I love you guys.
YOU did not cause your cancer. You might live in a body that is genetically and environmentally more prone to cancers, but your actions are not to blame for you being born in that body. There are plenty of people who never get cancers even though they do all the things that can contribute to cancers, and there are people who get cancers even though they do everything right to avoid them. We cannot see our body coding and the actual factors that actually trigger a group of cells to start skewing into madness, so how can YOU be to blame? That being said, yes, there are things we can do to limit the possibilities of aggravating cancer eruptions, and there are more things we can do to heal and restrict them. But never for a second believe that YOU caused your cancer.
YOU did not cause your arthritic condition. Choose one, there are so many kinds of inflammatory arthritic conditions on this earth. You might live in a body that responds incorrectly to information feedback, and it hurts, but you are not to blame for that pain you live with, the pain that makes everything hard, the pain that no one else understands. There are lots of people around us who can be as active as they want with their bodies and never elicit a self defeating inflammatory response. Good for them! But we cannot recode our bodies to stop responding incorrectly, so how can that be your fault? That being said, yes, there are things we can do to hold that response down, to stay functional, and to manage pain. But never for a second believe YOU caused or deserve your fibromyalgia, your achy joints, your severe spinal pain, your nasty headaches. NO ONE deserves pain like that, and you are fantastically brave living through it.
YOU did not cause your diabetes. A family could be genetically riddled with it, and one person gets skipped and can eat bags of candy without ever having a glucose spike. So hard not to be jealous of that, especially on holidays and other get togethers where people eat whatever they want without a care in the world. Logically, if we could cause our own diabetes, the entire human population would probably have died off by now, right? Our choices are not what causes an epic fail in our digestive system to process a major portion of our food. That being said, yes, you can make it worse by ignoring it, you can make it better by paying attention to it, and you can learn to live a long healthy life with it. And then there are some people who do everything right and still have a horrible time with it. NEVER feel guilty for having diabetes. Diabetes is no one's fault.
YOU did not cause your child's genetic defect. Spina bifida, cystic fibrosis, Down's, cerebral palsy, insert long list of genetic problems at birth with a variety of reasons for happening. Scientists find out why, medical experts look for ways to avoid them, but you did not bring that on your child through any fault of your own. We are innocent to the mysteries of the universe, and we do our best with who we are and what we have, and ironically, it might not even matter if you come from poverty or wealth for these things to happen. They simply happen, and we learn a great deal about ourselves learning to love and help special people with extra needs. That being said, we can now ask- Where would we be without this compassion in the world, and I daresay the extra drive to find out how our bodies function and thrive? Others who proclaim judgment being expressed are much further away from learning compassion and will take longer to understand what is missing from their lives. Simply nixing the problem has a way of backfiring, as we can see through history. People become harder and meaner when they weed out the weak, which casts long shadows on notions of spirituality. Some even suggest the weak are here for us to learn to be better. NEVER believe your child (or you, if you are an adult living with a genetic defect), is your fault.
YOU did not cause your mental illness. Brain chemicals are much more complex frontier than digestive chemicals, and neural synapses and miles of nerve pathways are more intricate than nearly anything else that is scientifically studied. This mystery of consciousness and awareness being possible on a physical plane is still so overwhelming that we still don't know what to do with it, so it's easier to make slots for behaviors, like a fishing tackle box. This goes here, that goes there, and if you don't fit a slot, then woe be to ye. We are finding out it doesn't work that way. Everyone's consciousness swims through a sea of chemical interactions, and some wade through sludges that make getting through a day very hard. Who in the world even wants that? And then the medical experiments- we haven't come that far from institutions and lobotomies, and now controversies over raising generations of medicated children. No, you didn't cause any of it. We're all swimming in this chemical sea, and so much is easily masked with drugs and alcohol in attempts to deal with something we still don't understand is happening. That being said, yes, opening our eyes to learning new cognitive concepts is the first step, and choosing to learn how to live better with our chemical imbalances is sometimes preferable to self doubt, self loathing, and self harm, but YOU didn't bring this upon yourself.
YOU did not cause the bad weather happening to you and your people. Droughts, hurricanes, earthquakes, flooding, fires, meteor hit, lightning strikes, hail damage, tornadoes, wind sheer, avalanches, and all the resulting illnesses, crop failures, transportation problems, famines, injuries, deaths- all are just part of living on this planet. You are not to blame for where you live and your behavior didn't cause a deity to mass torment everyone around you. Sooner or later one area or another will go through a massive tragedy, and that is when we find out how kind and generous the rest of the world can be. That being said, yes, we can take steps to make surviving catastrophic events more probable. We are working on early warning systems, better travel in some places, programs to help those in need of rescue, and for those who can afford it, insurance plans to hopefully make rebuilding easier. NEVER EVER *EVER* think the world is terrible for everyone because a handful of people deserve punishment, because it doesn't make sense for any God who is rooting for humans even slightly to be meaner than we are, seriously.
I could go on in many other ways. I'm not even going to touch being born into religions, political regions, skin colors, and especially orientations (which I personally think are as varied as everything else we live with in our bodies), but you can see how none of us cause our own circumstances that we are born into. There is no reason to blame ourselves for what we must live with, and no reason to hate others for what they cannot help and didn't choose. NONE OF US GOT TO CHOOSE WHO WE ARE. Anyone who thinks they can judge another from where they sit very simply just wasn't born into a different body, different family, different place on this earth.
There is this thing that happens inside of people when other people judge. We turn it into self loathing and self harm and then feel frustrated and angry back at the world for our self blame. We don't mean to make things worse, but hating ourselves and other people based on what other people say or think doesn't help ANY of us at all. Fear and sadness drive us into dark places, and allowing ourselves to be driven into ways of thinking that we abhor is super fail. We can believe what we want to.
I believe we live on a really tough planet in fragile bodies and most of us are really really scared because bad things keep happening and we feel like there's no hope sometimes. Yes, but that's only one side of the coin we call awareness. I also believe we live on the most beautiful planet in our galaxy in awesome bodies that teach us what being real heroes is all about, and WE are the hope we are looking for.
Be excellent to each other, never give up (never surrender!), and go be awesome. I love you guys.
Monday, October 3, 2016
looking outward when looking inward backfires
I started this 13 days ago and then forgot about it.
I was recently asked on twitter "do you go through the 'why me' why do i have to deal with this rubbish stages?" and I replied "very rarely, bcuz it destroys me & I ruin everything". More recently than that I was part of a discussion about the whole "it's not fair" point of view about an entirely different situation. The first situation was about being trapped in crap bodies, the second was a relative deprivation kind of thing where someone else is setting the rules in your head for what life should look like.
I have so many stories about the unfairness of life, but I think the fastest way to get where I'm going today is to ask where in the world the idea of stuff being fair even comes from. I have seen absolutely nothing in my lifetime that suggests there is such a thing in human existence, and no idea more destructive to relationships, self esteem, and point blank survival.
I don't need to bring all my stuff up again, or that one of the ways I handle embracing my own stuff is by noticing others who are handling even more with good grace and modeling on them. There's really no comparison between my daily pain level and someone's face being 3/4 burned off, or a baby born with a genetic terminal illness or having very early cancer. There is no winning the suck contest between any of us, because life on this earth sucks anyway, and the only reason we drift away from that is because some of us have developed enough of a financial cushion to distract us from worse, unless our personal pain is so immediate that even that means nothing.
I don't know how other people live daily with the thought in their heads that life isn't fair and why me. Since I was a very small child I have never survived a 'poor me' day without something catastrophic happening, one of the earliest I can remember is actually overdosing as a toddler after my mother ignored me doing something else. I have never in my entire life thought 'life is wonderful' or 'I love life', but I'm very thankful to say that I have developed an "I'm so grateful I got to be here and see and learn this" attitude.
I'll never make a sales pitch for life on this planet being anything less than grueling, and that goes for every single person born here. Sooner or later, we all hit that spot where life sucks so bad in some way that we feel inconsolably sorry for ourselves. You can be any age in any socioeconomic status in any country and still feel so lost in despair and ennui that none of the rest matters. You can be top of the heap or part of the trash at the bottom and feel that exact thing, because this is an inevitable human emotion we all go through sometime or another before we die.
There is a voice I hear in my head on bad days. It comes from real life experience, from being friends with people who got me stuck in a very bad situation, and a baby was starving to death the entire time. It was 10 months old and still not sitting up, and its crying had become so weak that it was more like a faint wispy whisper. Every time I feel sorry for myself or bad for humanity, I hear that. I hear utter hopelessness with no comfort. I hear no one to save us, and no way to save ourselves. I hear the saddest thing our universe has ever produced or hosted, and if I dwell, I have a very bad day.
I don't talk much about some of the things I've seen, some of the places I've been or the people I've met. I've watched a few people wilt around me and fade away, even with help all around and people all but begging them to reach out. There is a place inside us that we don't come back from if we don't kick and fight, and we can't always do that. We might truly want help, but we become helpless to let help help us. I went there one day, and the only thing that saved me was a fading thought of please do this for me because I can't hold on any more.
~~~~~~~~~~~~
I must have gotten a phone call or something. I was about to tell you another quick story.
When I was in high school, I begged my mom to get me to a psychiatrist. I was a high IQ student failing most of my classes, avoiding people, even committing real sabotage and getting into fights my mom (and the rest of the world) never found out about. I went so deep into my head that I felt like I was watching myself, and the longer I stayed in the back of my head, the easier it was not to surface and feel anything. After a few months of that, a tiny thought got through to me that maybe this wasn't a good idea, and I started trying to push my way back out again, back to my face, back to in the moment feeling stuff, but by then it was so hard and I was so out of practice even trying that I almost had a very tiny panic attack about it- except I couldn't even feel myself having a panic attack.
I can barely even describe that moment, when you know it's time to do something and that failing to act NOW is the very big difference between two very different futures. I could not make myself care. And it wasn't just ennui or the blehs. I was so stuck in the back of my head that I realized I might never care about anything ever again, and as I realized that, I saw a picture of people feeding an unresponsive me, limp and letting food sit in my mouth, staring at nothing, and wasting away but for the service of others over a body and soul I had abandoned.
I didn't like that picture. I grew up hating hugs and any other contact, hating being told what to do, hating that no one listened to me, hating that other people got to make the rules and make my life miserable, hating that no one cared what I cared about or thought about or how I felt. The worst possible hell I could imagine was other people actually touching me, putting food in my mouth I didn't want, putting clothes on me I hated, and not being able to stop any of that because I wasn't there. As incredible as it sounds, my one last salvation in my last moments in this world before I completely shut down was HATE. But I couldn't boil up enough hate to take action. I couldn't even feel a whisper of enough hate to push back against that picture and reject it. That was the moment I knew I wouldn't experience waking up the next morning, because I'd be so deep in my head I'd never consciously know the world around me again. The reality of that moment is so real that NOW it terrifies me how close I came to letting go of being.
What could I do? I couldn't save myself. I couldn't care enough to tell anyone. I couldn't see a way out of my own hell. I watched myself keep slipping away into a nothingness until I was laying in my bed barely hanging on to staying awake as long as possible, because I believed if I let myself fall asleep I would be lost forever. As the last of my mental fingertips finally slipped off the tiny mental ledge I was barely mentally holding onto, I thought to anyone who could hear my thoughts at all, "Please hang onto me because I can't any more", and that was the last thing I remember about that night as the last of me slipped away into nothing. I don't even remember dreaming or waking up in the night.
The next morning I popped awake like no time had passed, but all the time had changed, the world had changed. I was back in my face again, right up front feeling EVERYTHING after months and months of nothing. I sat up fully awake, feeling myself breathe, looking at every little thing in my bedroom, feeling the floor on my feet. When I walked into the kitchen I heard my mother sing out "Good morning!" and smelled bacon cooking. I hadn't smelled food in months. And I said good morning back to her. I don't think I'd ever done that in my life. I was actually glad to be able to say good morning, and I enjoyed my breakfast. I remember so many details from that day- the weather, the bus ride, all the smells and noise, not being angry or meh in school, just feeling everything. Just feeling me feeling everything.
I've never shared that story anywhere before online. I brought it up with my psychologist a couple of years or so ago, and it's part of my delayed response disorder, or postponement of affect, which is part of my neurological processing to begin with because autism spectrum, but likely also a result of emotional and psychological trauma. Basically, I am really super good at dissociating.
I'm not the sort of person who automatically throws problems at God and then thanks God for whatever while I'm suffering other stuff because I'm 'supposed' to. That's dumb. Thanks to my extremely religious parents, I grew up believing I'm not worthy, I'm here to suffer in order to learn, and that suffering is good because it is later rewarded, so shut up and suffer in silence, or at least gracefully. Worse, anything psychological was seen as government invented hokey used to brainwash and control people, so you can imagine I NEVER got the help I needed as an autism spectrum child being raised by really weird parents with such tight blinders on that the holes they peeked through were like pinpricks, and they defined everything in their worlds through what they could gather from the light coming through the pinpricks.
Meanwhile, I was the kid questioning the blinders and constantly tearing them off my face and seeing horrors and atrocities that I swear are as ugly as the alt world views we were supposed to be against, and some of them were pretty immediate, and some of that was inflicted on my poor body. I've been emotionally traumatized nearly from birth and grew up so broken that a psychologist suggested that a disorder called narcissism might have been what actually saved me from the self destruction of anorexia, self medicating, self harming, and suicide. Thank God for my weird brain, huh? THANK GOD FOR MY WEIRD BRAIN. God gave me a brain that survived all that.
I believe that part of the praying process is about focusing what we need into future problem solving, and that the unconscious parts of ourselves respond to that. I'm not into faith healing, because I think that's a real chain yanker, but it actually does work for some people and I have my own stories about it myself. I don't think whether it works or not is a judgement from God about our worthiness or whatever. I do think that our brains are very powerful tools and that when we focus (keeping in mind that religions are pretty much about focusing our thoughts), we create a direction and a goal. When we consciously acknowledge and make a statement to ourselves about what we want, our brains are tools that help us solve the problems we are having. It may not always be clear or quick, but at least once we are focused, we are in the right place for positive change.
There's this thing called pyschoneuroimmunology that is a holistic approach to health of the whole being. This is NOT a will of the mind heals thing. This is seeing the whole person, physically, emotionally, spiriturally, cognitively, and how all these interrelate into how we process out our stuff. We express our stresses in so many ways, and stresses include everything. Life on this planet is stress. How we see and feel and react to and work around all our stresses affects everything we do going forward from each moment. In my own case, and many times throughout my life, I've survived a lot of really awful things because I wanted to. Even when I felt my most helpless, I was able to consciously choose to want to be aware of my moments.
Mental illness is tough, chronic illnesses suck, injuries and emotional traumas inflict us from all sides. Why do I still want to be here? I'm past child bearing, so it has nothing to do with surviving to pass on my genes. I'm in and out of various levels of misery every single day, so it has nothing to do with actually enjoying experiencing anything in this body, so that rules out personal greed and selfishness seducing me. I'm very tired a lot, but I'm still driven to share everything I can before I can't any more, and I don't want to leave until I've done what I'm here for. That's kind of vague, but I think whatever inside me thinks it's here for must know something I don't, and it might be as simple as being the person who's in the right place at the right moment for someone else having a really stupid day, and that person is meant to go on to do something really cool, who knows. We are all important.
Anyway, back to the 'why me' thing. Do I ever ask why me?, and I don't because the second I even look at the unfairness, all the crap I've survived already overwhelms me again- addictions to alcohol and medications, not being able to do things other people take for granted, days/weeks/months so full of bitterness and sadness I don't even know how I didn't really kill anyone, years of unfairness living around people who take so much for granted and shrug me off and even use me like a servant on my worst days, all the judgment inflicted on me as a child, the never feeling loved or forgiven for being born on this planet- omg, how can I even go there? If I get caught in the life isn't fair trap and actually believe it enough to feel sorry for myself, will I wind up in jail? Plowing a car off a bridge?
LIFE ISN'T FAIR BECAUSE I'M WINNING. Y'all can suck it. I have problems galore in so many directions, but my favorite one is the frickin' narcissism, and whoever has a problem with that will curl up and die out of self pity long before I do. I am NOT going down that 'why me' path because IT'S A LIE.
If you are having a very bad rotten day, you are the one with the finger that dials a phone or types on a keyboard. YOU are the one who can find your focus. What do you want? Ask yourself this every single day- What do I want? Get specific. Look at all the ways it might be possible to get what you want. Write it down somewhere, tell someone about it, or wear one of those string bracelets that reminds us of something. Think about it. NO, don't think about killing someone, that kind of stuff backfires. But if you need escape or change or help from someone, define it, own it, make it into words, and then make the words into a series of steps that turn into actions. It starts with "I want" or "I need" or "Help me".
I absolutely do not want to blow anyone off. I'm pretty sure part of my own survival is having the kind of baditude where I figure if life is going to suck anyway, may as well try doing what I want to anyway, within reasonable boundaries because I know my limitations. I don't have to feel happy or validated before I go have a kick ass time hanging around a Hallmark store admiring cool stuff, even if I can't afford it. I still *like* it. I still like seeing what other people do and create and share. I like seeing the world turn.
I may not be able to empathize well with people having 'why me' days, but that doesn't mean I haven't walked that path and beaten it with a great big stick. I really do feel bad for people who have a hard time pulling out of the low parts of the roller coaster, and I know not everyone has that fight in them to go out kicking and screaming like I do, but I will totally vouch for it being sucky hard. I think I'm just more prone to spontaneous over reacting and that terrifies me a little. Me having a 'why me' day would NOT end well. I wouldn't be on twitter letting anyone know, as it were. I know it sounds weird, but my biggest trigger is people responding to me sharing, and it's become really obvious everywhere I go that I don't encourage comments even when they are 100% positive, and THAT, guys, is why I don't ask "Why me?" I wind up blowing up the internet and stuff.
I was recently asked on twitter "do you go through the 'why me' why do i have to deal with this rubbish stages?" and I replied "very rarely, bcuz it destroys me & I ruin everything". More recently than that I was part of a discussion about the whole "it's not fair" point of view about an entirely different situation. The first situation was about being trapped in crap bodies, the second was a relative deprivation kind of thing where someone else is setting the rules in your head for what life should look like.
I have so many stories about the unfairness of life, but I think the fastest way to get where I'm going today is to ask where in the world the idea of stuff being fair even comes from. I have seen absolutely nothing in my lifetime that suggests there is such a thing in human existence, and no idea more destructive to relationships, self esteem, and point blank survival.
I don't need to bring all my stuff up again, or that one of the ways I handle embracing my own stuff is by noticing others who are handling even more with good grace and modeling on them. There's really no comparison between my daily pain level and someone's face being 3/4 burned off, or a baby born with a genetic terminal illness or having very early cancer. There is no winning the suck contest between any of us, because life on this earth sucks anyway, and the only reason we drift away from that is because some of us have developed enough of a financial cushion to distract us from worse, unless our personal pain is so immediate that even that means nothing.
I don't know how other people live daily with the thought in their heads that life isn't fair and why me. Since I was a very small child I have never survived a 'poor me' day without something catastrophic happening, one of the earliest I can remember is actually overdosing as a toddler after my mother ignored me doing something else. I have never in my entire life thought 'life is wonderful' or 'I love life', but I'm very thankful to say that I have developed an "I'm so grateful I got to be here and see and learn this" attitude.
I'll never make a sales pitch for life on this planet being anything less than grueling, and that goes for every single person born here. Sooner or later, we all hit that spot where life sucks so bad in some way that we feel inconsolably sorry for ourselves. You can be any age in any socioeconomic status in any country and still feel so lost in despair and ennui that none of the rest matters. You can be top of the heap or part of the trash at the bottom and feel that exact thing, because this is an inevitable human emotion we all go through sometime or another before we die.
There is a voice I hear in my head on bad days. It comes from real life experience, from being friends with people who got me stuck in a very bad situation, and a baby was starving to death the entire time. It was 10 months old and still not sitting up, and its crying had become so weak that it was more like a faint wispy whisper. Every time I feel sorry for myself or bad for humanity, I hear that. I hear utter hopelessness with no comfort. I hear no one to save us, and no way to save ourselves. I hear the saddest thing our universe has ever produced or hosted, and if I dwell, I have a very bad day.
I don't talk much about some of the things I've seen, some of the places I've been or the people I've met. I've watched a few people wilt around me and fade away, even with help all around and people all but begging them to reach out. There is a place inside us that we don't come back from if we don't kick and fight, and we can't always do that. We might truly want help, but we become helpless to let help help us. I went there one day, and the only thing that saved me was a fading thought of please do this for me because I can't hold on any more.
~~~~~~~~~~~~
I must have gotten a phone call or something. I was about to tell you another quick story.
When I was in high school, I begged my mom to get me to a psychiatrist. I was a high IQ student failing most of my classes, avoiding people, even committing real sabotage and getting into fights my mom (and the rest of the world) never found out about. I went so deep into my head that I felt like I was watching myself, and the longer I stayed in the back of my head, the easier it was not to surface and feel anything. After a few months of that, a tiny thought got through to me that maybe this wasn't a good idea, and I started trying to push my way back out again, back to my face, back to in the moment feeling stuff, but by then it was so hard and I was so out of practice even trying that I almost had a very tiny panic attack about it- except I couldn't even feel myself having a panic attack.
I can barely even describe that moment, when you know it's time to do something and that failing to act NOW is the very big difference between two very different futures. I could not make myself care. And it wasn't just ennui or the blehs. I was so stuck in the back of my head that I realized I might never care about anything ever again, and as I realized that, I saw a picture of people feeding an unresponsive me, limp and letting food sit in my mouth, staring at nothing, and wasting away but for the service of others over a body and soul I had abandoned.
I didn't like that picture. I grew up hating hugs and any other contact, hating being told what to do, hating that no one listened to me, hating that other people got to make the rules and make my life miserable, hating that no one cared what I cared about or thought about or how I felt. The worst possible hell I could imagine was other people actually touching me, putting food in my mouth I didn't want, putting clothes on me I hated, and not being able to stop any of that because I wasn't there. As incredible as it sounds, my one last salvation in my last moments in this world before I completely shut down was HATE. But I couldn't boil up enough hate to take action. I couldn't even feel a whisper of enough hate to push back against that picture and reject it. That was the moment I knew I wouldn't experience waking up the next morning, because I'd be so deep in my head I'd never consciously know the world around me again. The reality of that moment is so real that NOW it terrifies me how close I came to letting go of being.
What could I do? I couldn't save myself. I couldn't care enough to tell anyone. I couldn't see a way out of my own hell. I watched myself keep slipping away into a nothingness until I was laying in my bed barely hanging on to staying awake as long as possible, because I believed if I let myself fall asleep I would be lost forever. As the last of my mental fingertips finally slipped off the tiny mental ledge I was barely mentally holding onto, I thought to anyone who could hear my thoughts at all, "Please hang onto me because I can't any more", and that was the last thing I remember about that night as the last of me slipped away into nothing. I don't even remember dreaming or waking up in the night.
The next morning I popped awake like no time had passed, but all the time had changed, the world had changed. I was back in my face again, right up front feeling EVERYTHING after months and months of nothing. I sat up fully awake, feeling myself breathe, looking at every little thing in my bedroom, feeling the floor on my feet. When I walked into the kitchen I heard my mother sing out "Good morning!" and smelled bacon cooking. I hadn't smelled food in months. And I said good morning back to her. I don't think I'd ever done that in my life. I was actually glad to be able to say good morning, and I enjoyed my breakfast. I remember so many details from that day- the weather, the bus ride, all the smells and noise, not being angry or meh in school, just feeling everything. Just feeling me feeling everything.
I've never shared that story anywhere before online. I brought it up with my psychologist a couple of years or so ago, and it's part of my delayed response disorder, or postponement of affect, which is part of my neurological processing to begin with because autism spectrum, but likely also a result of emotional and psychological trauma. Basically, I am really super good at dissociating.
I'm not the sort of person who automatically throws problems at God and then thanks God for whatever while I'm suffering other stuff because I'm 'supposed' to. That's dumb. Thanks to my extremely religious parents, I grew up believing I'm not worthy, I'm here to suffer in order to learn, and that suffering is good because it is later rewarded, so shut up and suffer in silence, or at least gracefully. Worse, anything psychological was seen as government invented hokey used to brainwash and control people, so you can imagine I NEVER got the help I needed as an autism spectrum child being raised by really weird parents with such tight blinders on that the holes they peeked through were like pinpricks, and they defined everything in their worlds through what they could gather from the light coming through the pinpricks.
Meanwhile, I was the kid questioning the blinders and constantly tearing them off my face and seeing horrors and atrocities that I swear are as ugly as the alt world views we were supposed to be against, and some of them were pretty immediate, and some of that was inflicted on my poor body. I've been emotionally traumatized nearly from birth and grew up so broken that a psychologist suggested that a disorder called narcissism might have been what actually saved me from the self destruction of anorexia, self medicating, self harming, and suicide. Thank God for my weird brain, huh? THANK GOD FOR MY WEIRD BRAIN. God gave me a brain that survived all that.
I believe that part of the praying process is about focusing what we need into future problem solving, and that the unconscious parts of ourselves respond to that. I'm not into faith healing, because I think that's a real chain yanker, but it actually does work for some people and I have my own stories about it myself. I don't think whether it works or not is a judgement from God about our worthiness or whatever. I do think that our brains are very powerful tools and that when we focus (keeping in mind that religions are pretty much about focusing our thoughts), we create a direction and a goal. When we consciously acknowledge and make a statement to ourselves about what we want, our brains are tools that help us solve the problems we are having. It may not always be clear or quick, but at least once we are focused, we are in the right place for positive change.
There's this thing called pyschoneuroimmunology that is a holistic approach to health of the whole being. This is NOT a will of the mind heals thing. This is seeing the whole person, physically, emotionally, spiriturally, cognitively, and how all these interrelate into how we process out our stuff. We express our stresses in so many ways, and stresses include everything. Life on this planet is stress. How we see and feel and react to and work around all our stresses affects everything we do going forward from each moment. In my own case, and many times throughout my life, I've survived a lot of really awful things because I wanted to. Even when I felt my most helpless, I was able to consciously choose to want to be aware of my moments.
Mental illness is tough, chronic illnesses suck, injuries and emotional traumas inflict us from all sides. Why do I still want to be here? I'm past child bearing, so it has nothing to do with surviving to pass on my genes. I'm in and out of various levels of misery every single day, so it has nothing to do with actually enjoying experiencing anything in this body, so that rules out personal greed and selfishness seducing me. I'm very tired a lot, but I'm still driven to share everything I can before I can't any more, and I don't want to leave until I've done what I'm here for. That's kind of vague, but I think whatever inside me thinks it's here for must know something I don't, and it might be as simple as being the person who's in the right place at the right moment for someone else having a really stupid day, and that person is meant to go on to do something really cool, who knows. We are all important.
Anyway, back to the 'why me' thing. Do I ever ask why me?, and I don't because the second I even look at the unfairness, all the crap I've survived already overwhelms me again- addictions to alcohol and medications, not being able to do things other people take for granted, days/weeks/months so full of bitterness and sadness I don't even know how I didn't really kill anyone, years of unfairness living around people who take so much for granted and shrug me off and even use me like a servant on my worst days, all the judgment inflicted on me as a child, the never feeling loved or forgiven for being born on this planet- omg, how can I even go there? If I get caught in the life isn't fair trap and actually believe it enough to feel sorry for myself, will I wind up in jail? Plowing a car off a bridge?
LIFE ISN'T FAIR BECAUSE I'M WINNING. Y'all can suck it. I have problems galore in so many directions, but my favorite one is the frickin' narcissism, and whoever has a problem with that will curl up and die out of self pity long before I do. I am NOT going down that 'why me' path because IT'S A LIE.
If you are having a very bad rotten day, you are the one with the finger that dials a phone or types on a keyboard. YOU are the one who can find your focus. What do you want? Ask yourself this every single day- What do I want? Get specific. Look at all the ways it might be possible to get what you want. Write it down somewhere, tell someone about it, or wear one of those string bracelets that reminds us of something. Think about it. NO, don't think about killing someone, that kind of stuff backfires. But if you need escape or change or help from someone, define it, own it, make it into words, and then make the words into a series of steps that turn into actions. It starts with "I want" or "I need" or "Help me".
I absolutely do not want to blow anyone off. I'm pretty sure part of my own survival is having the kind of baditude where I figure if life is going to suck anyway, may as well try doing what I want to anyway, within reasonable boundaries because I know my limitations. I don't have to feel happy or validated before I go have a kick ass time hanging around a Hallmark store admiring cool stuff, even if I can't afford it. I still *like* it. I still like seeing what other people do and create and share. I like seeing the world turn.
I may not be able to empathize well with people having 'why me' days, but that doesn't mean I haven't walked that path and beaten it with a great big stick. I really do feel bad for people who have a hard time pulling out of the low parts of the roller coaster, and I know not everyone has that fight in them to go out kicking and screaming like I do, but I will totally vouch for it being sucky hard. I think I'm just more prone to spontaneous over reacting and that terrifies me a little. Me having a 'why me' day would NOT end well. I wouldn't be on twitter letting anyone know, as it were. I know it sounds weird, but my biggest trigger is people responding to me sharing, and it's become really obvious everywhere I go that I don't encourage comments even when they are 100% positive, and THAT, guys, is why I don't ask "Why me?" I wind up blowing up the internet and stuff.
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