Take It Or Leave It

I’m not one to give unsolicited advice, mostly because I hate receiving it. Yet so many people insist on doling it out as if they’re on a mission commissioned by the Almighty Himself to do so. It’s their personal goal in life to tell the rest of us what we should be doing, why we need to do it and how we should be doing it.

Nowadays we call those people narcissists. We used to just call them annoying busybody assholes.

So I try not to be one, because I don’t like them. It can be difficult though, the older you get and the more life experience you acquire, not to share helpful tips with others even when they didn’t ask for it. Aka give unsolicited advice. I find myself stopping myself more and more from doing it so I’m not annoying my son or other younger people who have yet to figure some things out through trial and error, like I did. Like we all do. Like we all should.

Still, it’s great to come across good advice even if you aren’t looking for it, like this article I found over at the NYTimes. Here’s just the section on Life Advice:

The first kind of counsel for your consideration: words of wisdom for almost any life situation.

  • You’ve never seen a cat skeleton in a tree, have you?” When Alexandra Aulisi’s cat couldn’t get down from a tree, her grandmother reassured her with those words, predicting (correctly) that the cat would come down on his own. “This advice made me realize that, sometimes, you need to shift your perception of a problem to see a solution,” Ms. Aulisi noted.
  • “Don’t pickle things.” That line, brought to you by reader Sam Singer’s mother, means: If you have something special, use it now. “Serve daily meals on your good china. Wash your hands with the luxurious soap you received as a housewarming gift. Drink that bottle of amazing wine right away. Don’t save things for future use — because who knows what the future looks like?”
  • “Exercise adds 20 degrees.” For example, “if it’s 28 degrees out and it seems too cold to go running,” Rory Evans wrote, “once you get moving, it’ll feel like it’s 48 degrees. And that, you can handle.”
  • “Touch it once.” According to Christine H., this household hint involves putting something away the first time you pick it up. That way, “you don’t have to waste energy looking at it (and feeling guilty), or letting it get dusty so you have to clean it before putting it away.”
  • “Sleep on his side of the bed.” Mattie Scott heard this advice at her husband’s funeral. “It’s truly the best piece of advice I’ve ever gotten,” she notes. “The effect was profoundly comforting, and it greatly lessened the ache of missing his physical presence.”
  • “Things don’t have to be perfect to be wonderful.” Gail Dekker first heard her friend, a wedding coordinator, offer these words to young couples whose emotions were running high. But it works in all kinds of situations, including Ms. Dekker’s house hunt. “My initial reaction was that there was something wrong with every condo I saw. My friend reminded me: A place didn’t have to be perfect to be wonderful. She was right.”
  • “Take a breath.” Melissa Fanning heard this from a yoga teacher (“at a corporate retreat about which I remember nothing else”). It wasn’t a yoga instruction; it was a suggestion to pause at stressful moments, to avoid saying or doing something regrettable. “I use this advice every day,” Ms. Fanning wrote. “It has preserved peace, calmed me, and made me appear smarter than I am.”
  • “You can’t control other people’s actions, but you can control your reaction to them.” Kim Radich uses this advice daily. “For example, when a family member reacted negatively to a situation, I remembered I can’t control their behavior, and I let it roll off my back.”
  • “Just be a gentleman.” Harry Kelly admits that this advice “may sound corny.” But that guidance came from his mother at a heightened emotional moment: as she dropped him off at college shortly after his father had died. “It means not taking advantage of other people and trying to adhere to your moral values,” he wrote. “Her advice has kept me from doing some bad things and encouraged me to do what is right. Best advice ever.”

There’s more, and some of it’s really good! It’s a collection of best advice ever given to the readers.

Some of the best advice, though, comes from our inner voice that we all like to ignore. If we listen closely it’s telling us what we should and shouldn’t be doing, when we’re right or wrong, and everything in between. It’s our compass if we can learn to tune out the other voice that pops up and drowns it out.

You know the one that repeats all the negative things your mother ever said to you? Yeah, we have more than one inner voice. The one that’s trying to guide us in a positive way is the one we want to tune into, though, because it really does have our best interest at heart even if it seems like a killjoy.

And it’s more of an intuition or a feeling than an actual voice. The naysayer is usually the loud one we hear chattering away while this one, well it’s somewhere deeper, and nudges us from a quiet place hidden within the recesses of our soul itself. Perhaps it’s our “higher self” even, who knows, all I know is when I listen to it I have pretty good outcomes compared to when I ignore it and try to go at life doing things my own way (which sounds weird I know because that voice IS part of me and no, I’m not schizophrenic, it’s perfectly normal to have internal dialogue(s)).

Don’t let anyone make you feel crazy or weird just because you have internal dialogues or monologues. It really is normal. It only becomes a problem when the voices take on nefarious tones and tell you to do bad things. Or if you begin talking to your toaster. Then you might want to get some help.

Oops, it looks like I just went against my own personal vow not to offer unsolicited advice. Oh well, it’s too late now. Take it or leave it. 😋

Another Case Study in Trauma Driven Genius: Dave Matthews

I don’t think I love any artist more than I do Dave. Like many fans, I didn’t really get into his music until much later. Not that I didn’t know who he (or they) were, I knew a few songs and thought it was okay but not the greatest thing out there. Plus there was a bit of a stereotype of early DMB fans, and I preferred metal anyway.

Until I found their cover of All Along the Watchtower, which blew my mind and made me dig more into their live stuff…

Which is how I learned that they are one of the most talented jam bands to ever grace a stage!! I spent days watching live show after live show, completely in awe at the raw talent. Not just Dave but everyone he plays with. We’ve been huge fans ever since and we’ve been to see them in the Gorge many times, so it’s fair to say we love Dave and co.

Still, it’s hard to not notice that he, too, seems to be one of those creative geniuses who had a really traumatic childhood. He grew up during apartheid in South Africa, his sister was murdered, his father died when he was young, and he struggled over the years with his mental health but seems to have not only come out of it but has developed an interesting life view because of it perhaps.

In an interview with Rolling Stone he says:

Death is often a major focal point of your songwriting, partly because so many people close to you — your father, your sister, childhood friends — have had untimely deaths.
I find it much more surprising that death is not part of the conversation at all. I guess as a culture we’ve grown to admire youth and the naive wonder of youth as somehow better than the wrinkles and wisdom that come with age, and that somehow there’s a fault in accepting mortality. That is fucking stupid. Not to say that death isn’t shocking, but if there wasn’t death, life would be fucking useless. We’d be bored to tears. Mortality makes it so much more spectacular. That’s the thing we should talk about more than the delusions of grandeur that come along in the afterlife. What an utter waste of time. But I guess it’s more comforting if you think there’s this Santa Claus in the sky who’s waiting to make us happy, or if we haven’t been good, he’s not going to give us any presents. God has no plan. It’s simpler to think that we’ll go to heaven or hell when we die. To me, that seems like a way to avoid living.

At what point in your life did you formulate your ideas about death?
If anything, I think of the times I contemplated suicide.

When was that?
It comes and goes. I don’t know that it will ever end. When things inside your head get kind of crazy, and you go, “OK, let’s go through the list of options.” And suicide was one of them. I’ve never indulged in it where I was sitting, snot pouring out of my nose, tears pouring down my face, saying, “This is it. Fuck it. I’m gone.”

What’s the closest you ever came?
Just thinking about ways, which I don’t think is uncommon. But I’ve had a few doctors tell me that it’s not necessarily that common.

Did you come up with a method?
The idea of throwing yourself off a bridge, but I’m afraid of heights. I thought about a gunshot, but it’s so violent and messy. Gassing oneself is kind of peaceful.

When was this?
In my late teens, early twenties. What turned me away was something a friend of mine said, someone I used to wait tables with. Her name was Carter, and she was a wonderful girl. She told me that my death was done the minute I was born. It’s the only guarantee, the only thing that you know is gonna happen. What’s the point in hastening it? Why not stick around, if for nothing else than for curiosity?

It can be shocking to read one of your favorite artists talk so casually about death and offing themselves and even detail how they thought of doing it but it’s also comforting to know we are really just all the same at the end of the day. Dave has just mastered channeling his trauma into his creative arts and like Till Lindemann, who I posted about in my last post, he also paints and acts and does a lot of performance art. He’s so much more than just the leader of DMB.

He’s pretty inspirational but again, you know what they say about meeting your heroes. It’s easy to read a few lines or watch a concert and see a movie clip where Dave’s being silly and goofy and it’s another thing to realize that like so many artists, he probably has his darker moments too and I bet he slips into places he’d rather not go to just like the rest of us while assuring the world that everything is fine and dandy.

You just never know. Yet there’s something genuine feeling about Dave and I do hope he truly has conquered his demons, which are some of the same ones we all fight in life. Of course he has millions of dollars and millions of adoring fans plus a lot of close friends and family to help keep him going. I do think that helps. 😄

Till Lindemann, A Case Study in Trauma Driven Genius

I am one of those people that overanalyze everything and I’ve always seen things with a scientific mind because that’s just how my mind works. I love to know how everything works, especially the human psyche, and one subject in particular who has been a favorite to try and dissect is Till Lindemann, the lead singer of Rammstein.

I’ve been a fan for a long time, and I even learned quite a bit of German because of them, but I still haven’t wrapped my head around the complex character that is Herr Lindemann. He has a solo project, which is quite different than Rammstein’s heavy, industrial metal, and it’s not bad at all, it’s just…

Well, it’s a lot more perverted and violent, that’s for sure. 😄

Till has a reputation for being someone who loves to push boundaries and he uses this solo career as an outlet for that, as well as his poetry books, which gives someone like me plenty of material to pour over as I try to figure him out.

Not that R+’s lyrics aren’t darkly perverse, because they are, but in a Grimm’s fairy tale sort of way. I can handle them. In fact, I love them. Lindemann takes things to a whole different level that isn’t everyone’s cup of tea, even for ardent Rammstein fans. He has a very dark sense of humor and is brilliant at this, um, art he’s making, but it is pretty extreme.

Here’s a good, somewhat tamer example of his work that is a sort of “rapist’s tango” when you translate and dissect the lyrics. The video is brilliant because as he’s describing how great he is in his ability to “seduce” all the ladies, he’s getting his ass kicked in a Russian prison and it’s actually quite funny.

What’s funny to me is seeing Rammstein fans assume that Till is being abused by the director here, who he’s worked with before, or that he’s in some sort of middle aged, spiraling-out-of-control phase now that he’s older, but I don’t really know what to think. I do know he’s a performance artist above all and this entire thing could be one giant performance art piece.

After all, he is a Berliner and they are known for their weird art.

It’s also intriguing as hell knowing that Till Lindemann grew up behind the Berlin wall, and surely had plenty of traumatic experiences. It’s well known among fans that he’s a cutter and his arms bear the deep scars to prove it. He pours his soul into his work, all of his work, and he’s really quite a popular entertainer in Germany and around the world.

Yet when it comes down to it, him and the other members of the band were all born prisoners of war. They are literally the bastard children of WW2. We can’t fathom what that’s like, nor do we probably want to, but we can empathize with them, especially if we, too, came from challenging childhoods.

Trauma affects us all differently, of course, but the members of Rammstein have all found a way to channel their childhood experiences into their music and it seems to have worked for them. After almost 30 years they are still together, all six of the original band members, and they are selling out stadium after stadium right now as we speak. In fact, they are more popular now than they’ve ever been, which is unheard of for a heavy metal band who have been around since the early 90s. Most bands peak and are playing Indian Casinos if they’re lucky about now.

Or, they never survived to see 30 years in the industry. So many of them never got over their demons and their own childhood trauma got the better of them and we lost them young. Too young at times. It’s mind boggling how many overdosed or committed suicide and left us with nothing but sadness and amazing catalogues of music that keep the rest of us hanging on.

Music, no matter what the type, can be so healing or therapeutic but when you get too attached to the artists themselves, you risk being pulled down into dark rabbit holes with them because as we all know, creativity is often driven by madness.

So perhaps we shouldn’t allow ourselves to get too emotionally attached to the creator, just the creation. Or, we allow ourselves to feel a human bond with our favorite musical geniuses because they, too, are just humans having a human experience, trying to stay afloat in the river of life.

We just can’t let them pull us down with them if that’s where they end up.

Why the name?

I named this blog “Scattered Among the Leaves” because it’s the working title I have for a book I keep starting and then stopping. I figure this will get me at least motivated to pick it back up and maybe, you know, actually finish it.

I love fall, too, and I love the autumn leaves and how it feels to walk among them as they blow about on a warm afternoon. It’s one of those things I can recall fondly from childhood, so I cling to it because to be honest, there aren’t many good memories for me from that period in my life. I struggled to find happiness for years after I left the nest, too, and only now do I feel content and whole.

Less scattered, if that makes sense.

I do like to share how I got from there to here and sometimes I wonder myself. Often when I’m out on the dog sled, in the middle of the quiet winter magic, I feel like there has to be a cosmic hand at play here. How did I come through it all to find myself living a life I couldn’t have even dreamed for myself?

There was a time when I didn’t believe I deserved anything good in life let alone that I’d even live to be the age I am now. Yet here I am, and I’m so very happy to have made it to the other side.

The Gift of Staying Present

I honestly don’t know how the young people today grow up without mental health issues. It boggles my mind when people see the statistics getting worse with each generation and scratch their heads, wondering why everyone seems to be slowly going mad, but I guess it’s easier to do that than to face reality. We live in a crazy, effed up world. Humans have been and still are the most vile creatures on the planet, if they so choose to be and the natural world itself wants to kill us at every turn.

You have to be extremely resilient and strong willed to not let it at least get you mildly anxious or depressed.

Of course some people are wired differently and seem to sail through anything unscathed, a smile on their face and a spring in their step. You almost feel embarrassed when they’re around because it just shows how much you can’t handle life since this person over here has been through just as much adversity, if not more, yet still finds happiness and contentment.

Or do they?

Every so often we’ll read of the suicide that no one saw coming. They were always happy-go-lucky and had a charmed life. You know, then that whole ‘you can’t read a book by its cover’ thing gets thrown around and we all realize that none of us are immune. None.

It’s like we’re in a game of who can survive the longest without giving up, and so far I feel like I’m doing pretty well. When old habits kick back in or even just negative thoughts linger a bit too long, I throw myself back into my work. Which for me is being a full time husky wrangler and part time blogger.

I’m making videos for my husband’s YouTube channels now, and that’s rewarding not to mention time consuming. Not to mention attention consuming, which is good to keep your mind wandering back in time to relive things you want to forget and can’t change anyway.

Healing from abuse means rewiring how your brain works because we can get stuck in a loop, always worrying about the past and afraid for the future things to come. Being in the moment is a gift we can give ourselves but it takes practice. I still haven’t mastered it, but I do pretty well these days.

Something else I did to help myself was EMDR but I did it at home, online during the lockdowns. There are a few videos out there you can find, but you have to really put the work in. It does help, though.

Corruptors of Youth

Some of us don’t have a chance for normalcy. I was given my first line of meth by my brother and my first hit on a crack pipe by my best friend’s mom when I was thirteen and as an adult looking back now, it blows my mind and pisses me off when I look back to my early teen years and realize just how many grown people were involved in corrupting the youth back then! Particularly me!

Not just people in their 20s; you expect them to still want to hang out with teenagers, the male ones at least. I’m talking people in their thirties, forties and beyond. Wayyy too old to want to be “friends” with obviously damaged, highly vulnerable fifteen year old girls and boys, you know? And they were always around, supplying the goods or giving a ride to a concert or providing a safe house for us to go party. It seemed like a sport in the 80s to cross boundaries and the adults I knew all seemed completely fixated on themselves and getting either high, drunk or both.

Meth was really taking hold at that time and you could smell it cooking as you walked the streets and neighborhoods of Manteca. The odor was very distinct and I knew it well as I had smelled it up close, having been exposed to drug dealers, manufacturers and all manner of petty and not-so-petty criminals. As a freshman in high school I would walk to school and on the way I could smell at least two or three meth labs.

Our high school was a magnet for all of these middle aged corrupters of youth and usually one would spot me and offer a ride along the way, which I happily took. Hell, my oldest sister was still hitchhiking from town to town like the wannabe hippy she still was even though by the mid 80s we kinda knew that made you a target for a serial killer (and California was breeding as many of those as perverted narcissists it seemed).

We literally didn’t care. All five of us kids had a death wish of sorts, it seemed, we just sought it in slightly different ways. She liked to hook up with as many random strangers as she could because sex was her drug of choice. Meth and weed were mine, just like my older brother who I practically worshiped despite him being one of my worst abusers.

It was easy to overlook the abuse when the convenience of getting your fix meant your drug dealer lived in the same house as you, slept two doors down the hall and didn’t always notice when my sticky fingers dipped into his stash when he wasn’t around. I always tried to get in and out of his bedroom though because it was the scariest corner of the cave to me. His walls were covered in naked people doing all sorts of weird things, his collection of knives and bullets and brass knuckles and all manner of weapons of mass destruction scared me even more, but the smell made it feel like going into a gas chamber. I can still smell it if I try.

The smell was so strong, especially if he had skunk weed, that I knew when he was home regardless of the time of day or night because the moment he cracked the seal to that door, the entire house reeked of weed and teenage boy. This was on top of the overwhelming odor of cigarettes and cat shit which already made our cave smell so pungent!

Still, in a weird way I loved him even though it was just like having Sid from Toy Story as an older brother. Out of the entire clan he was the only one I had fond feelings for, but that was probably because he took me places and hooked me up with lots of drugs. He also had hot friends I enjoyed the company of and a reputation for being a bad ass that I benefited from as his little sister. He wasn’t my only brother, but he was the only one who seemed to enjoy my company as long as I was bringing my friends over to buy dimebags and quarters from him, so I did my best to tolerate his personality “quirks” when they were aimed at me.

Though there was that one unfortunate incident when I had to pull a butcher knife on him after he knocked his pit bull out cold in front of me and then turned and came after me in a fit of rage, but eventually we got past that. Plus, he wasn’t the only one corrupting me whenever he had the chance. My oldest sister, the free-love loving hippy wannabe was also into that, but she didn’t use drugs. Unless you count sex as a drug.

All of them were or should have been old enough to know better. At the age of thirteen, I didn’t realize it was wrong of them but by the time I was an older teen, especially by the time I was married and having my first child just before my 20th birthday, I KNEW what they had done was wrong and I was already determined not to be like them or to tolerate any adults around me wanting to corrupt the youth.

No Hard Feelings?

I can’t remember an interaction with anyone as a child, outside of school or with polite strangers out in public, that didn’t end in some kind of negativity.

Sometimes they could get through a conversation without it devolving into a screaming match or worse, but not often enough. Sometimes they’d wait until whoever they were being fake nice to at the moment left the room or even just turned their attention away enough for an eyeroll to go by undetected,but I noticed and took notes and mimicked them because it was all I knew as the youngest in the tribe.

As unbelievable as it sounds, my parents and siblings and aunts and uncles and cousins and everyone we knew seemed to have the same narcissistic bent to them. It seemed to me then, and still does looking back, that central California isn’t just growing vast quantities of America’s food but also millions of narcissists ripe for the harvest every year. I say this because I’m sure it didn’t magically end when we left back in the early nineties.

Narcissism seems to just run through the culture and for someone who is highly sensitive, wants to just be grounded and down-to-earth and have genuine relationships with other people based on respect, civility and – dare I say – love, it’s toxic as hell to be around them. It feels like you are trying to have a relaxing swim in your pool but someone swapped the warm water out for acetone.

I had no idea that this particular personality disorder existed but I did know when I mimicked the behaviors I grew up witnessing I felt AWFUL. I hated myself, I hated everyone else and I hated the world. In fact, I hated life itself back then and was like a big ball of negative energy. A lifetime of watching people backstab and beat each other down (literally) had taken its toll on me before I really ever formed my core personality and it makes me sad now, looking back at the lost potential.

Hard feelings flooded through my veins because I was tapped into the dark, ugly current of it that ran through the San Joaquin valley. It watered the crops of narcissists that grew there, including my own clan and the only way I could survive was to cut off all contact with as many of them as possible and find a place where I could heal and hopefully thrive one day.

If you had told thirteen year old me way back then, as I was climbing out of my bedroom window at midnight to go run the streets and party all night with dozens of other kids just like me that one day I’d be sitting here on my little homestead, completely contented with life with the Tetons over my shoulder and my sled dogs sleeping peacefully in a semi-circle all around me, writing about surviving the madness happening in that house so long ago on Hacienda Avenue, I think she would have told you you were full of shit and laughed in your face.

Surviving Narcissism

One of my favorite channels is Dr. Les Carter’s Surviving Narcissism. He has helped me come to terms with my early childhood more than anyone else ever has and I owe him my debt of gratitude. Just the name of his channel is fitting because it really is survival of the fittest out there when you live with narcissists.

The damage they do mentally, physically, emotionally, spiritually and psychologically is hard to quantify but I have a feeling that most mental illness, suicide, drug addiction and general failure in life can be traced back to narcissistic abuse. I know that sounds extreme, but it comes from my own narrow lens on life because it’s how I grew up.

I lived in a viper’s nest of them. I don’t say that jokingly, either, because that’s how it felt as a child. I remember my earliest years were spent hiding – a lot – and trying to stay still, quiet and preferably unseen because out of sight meant out of mind in my clan of narcs.

Once you popped into view, one of them would take notice and unless they were already preoccupied with torturing someone else, then all gloves were off and they would hone in on you like a hunter with a laser scope. It didn’t matter who it was, if one of them had the urge, and they all often did, some sort of abusive behavior would follow and the only way to avoid it was to hide.

When you’re half the size of everyone else your age, you find all kinds of places to hide, too. Long after I should have been able to, I could slip into the space between the couch and the wall easily enough that there was room to drag all sorts of things with me. Mostly every spare blanket I could find because that was also where the cats liked to go to do their thing because doing it out in the open on the carpet meant risking a boot to the ribs, so they figured out early on, too, that hiding to sleep, shit and wait out the chaos until the next round meant survival.

This also meant that no one cleaned up the piles of cat shit that gathered behind the couch because that was far too much effort. Just like cleaning it out of the potted plants that somehow managed to survive in that hellhole. The stench was so bad I often used dryer sheets to cover my face with and would take them with me to my secret spot behind the couch to endure being so close to it. Even with blankets separating me from the smell, and even though my sinuses were always incredibly inflamed to the point I could barely breathe through my nose, it was still intolerable at times, especially if it was fresh that day.

Still, I managed to make it work because hiding anywhere else was too dangerous. There were no other truly safe spaces for me with so many kids in the house and us having to share bedrooms. Under my bed was another favorite place but it was often so jam packed with stuff that it was impossible to get under there, so the couch worked for me and the cats, too.

All those cats. Ugh.

Of course we all had to come out of hiding to eat, the cats and I, but my parents didn’t seem to notice if I barely poked at my food before slinking away back to my hideaway and the world I’d created for myself there that took me a million miles away from reality.

Luckily I had a vivid imagination and was above average intelligence for my age. I squirreled away books and paper and pencils in my hiding places so I’d spend hours reading and writing. I even wrote my first book inside the closet I shared with my older sister later. She was in seventh and I was in second grade, and it was all about a little girl who was being abused.

No surprise there, heh.

I made a cover and used the gigantic hole punch my dad brought home from the Navy to make it into a “real” book and everything. I drew the illustration on the front and tied the pages together carefully with red ribbon I’d snatched from my mom’s sewing stuff and I was SO VERY PROUD.

I would have given it to one of my parents as a gift, but they’d have just acted indifferent and tossed it on to the pile of crap already overflowing on the coffee table or dining room table or wherever. I knew even then they had no interest in what I did or thought or if I even really existed at all so I just didn’t bother and kept everything to myself. I had zero allies in that house and I knew it from the very beginning it seems.

Anyway, I am pretty sure in my first novel, which must have been all of five pages or so, all neatly tied together with bright, red ribbons that were carefully cut to the same length by eight year old me, ended up in one of those many piles of trash that grew like swamp monsters in my childhood home eventually anyway.

I remember bits and pieces of the story still, how my character was beaten with a fire poker and made to live outside in the tree house with the cat. I wish I still had it but, like everything from my childhood including school pictures (when they bothered to get them for me) disappeared long before I left home.

I can imagine it in my mind’s eye, even though it’s not a real memory, though, in my childhood home, lying there in the dark with all that smoke in the air and the yellow, nicotine stained walls, somewhere lost among all the pieces of junk mail and empty cigarette packs and overflowing ashtrays and dirty dishes and dirty socks and toenail clippings and dog hair and odds and ends and crumbs and coffee stained papers and whatever else found its way to the pile before the cats decided to climb on top and take quick naps when no one was looking, pushing and piling things onto the floor and adding to the never ending chaos that usually accompanies a narcissistic household.

I can close my eyes and I’m back there in an instant, my heart racing, struggling to breathe freely, looking for a place to hide. Which is why I try not to go there. That’s the key, though, I can control when and if I go there, how long I stay and when I can leave again. Mostly thanks to Dr. C.

Fractured, Not Broken

There was a time when I believed I was irreparably broken but that was just another lie the human experience throws up as a test to see if you’re stupid enough to fall for it. I did, but looking back it’s easy to see why I felt that way.

It took four decades of searching for answers to understand what was wrong with me and it was nearly too late when I did finally get my diagnosis. I was almost completely bedridden, right at a time when my young adult children were starting their lives and needed me to help them make the transition. I could barely transition myself from the bed to the bathroom and back.

I wasn’t the first one in the family to become bedridden early in life. My grandmother on my dad’s side spent the last twenty years of her life in bed, mostly, and my brother spent the last decade or so of his bedridden as well before he finally died after years of absolute hell.

Neither had a definitive diagnosis for what ailed them, either. I saw myself heading into their fate and had all but given up hope when I landed in the office of my local immunologist. He didn’t just listen, he really seemed engrossed in my tale of woe and despair and seemed to understand why I had also developed a strong, almost pathological fear of doctors over the years. I couldn’t help it, I had been to so many and my first memories were of them trying to hold me down in an MRI to get a brain scan because my seizures were so bad they needed to see what might be causing them.

In between, I was given every test imaginable and injected, drugged, poked, you name it in an attempt to treat me with no answers as to why I was so sick in so many different systems in such random ways. My symptoms kept mutating, too, as I got older, and by the time I landed at the clinic twenty miles from my house, I was almost as equally allergic as I was inflamed. The allergy symptoms had escalated after three wasp stings within a year, each one worse than the last until I thought I was dying the last time.

The anaphylaxis was new, but the painful inflammation from head to toe wasn’t and it was getting worse. Like my older brother, I went from fit and somewhat healthy to crippled almost overnight and my mental health spiraled out of control, too. I secretly hoped one time I would anaphylax so bad, maybe in the hot shower since I had become “allergic” to that, too, and just fucking die already.

I had already given up everything by that point so why not? I was allergic to heat, pollen, most foods, stress, altitudes, sunlight, most every chemical fragrance, prescription drugs (mostly the fillers and additives in the pills), You name it. Socks too tight? Hives on my calves so bad I’d scratch until my skin bled. Pillow case too scratchy? I’d wake up covered in big, itchy welts on my face.

Worse, it was getting worse and more and more things were triggering me as the years passed. I felt doomed to die like so many, completely hopeless, alone and misunderstood. Even I had a hard time believing it was true and wondered if I was actually somehow “thinking myself sick” or faking it like so many people were saying.

Either way, I was saved that fateful day by Dr. P, as a last minute thought as I was heading out the door, defeated yet again after my latest round of tests which came back “normal”.

“Have you ever been tested for mast cell disease?” he asked.

Of course I had no idea because my childhood medical records were somewhere in the Naval archives and I hadn’t been inclined to go through the process to get them, but as far as I knew, no. I had never heard of a mast cell and probably would have remembered discussing it with a doctor at some point.

To make a long story short, it changed my life and I am now 80% better than I was when I left his office that day, although I do have some bad reactions still and am functionally disabled when it comes to keeping a job. Still, I am able to maintain a life and a very good one despite it having to be a very disciplined life that demands I stick to a strict diet and use mast cell stabilizing medicines religiously.

Once I stabilized my symptoms, which were many, and got the inflammation especially under control, I could think clearly and get a handle on my out of control emotions so I could focus on healing from my childhood trauma, which again, if you haven’t read about that please check out my last post on ACEs testing and see where I rank (hint: I scored a 9 out of 10).

It sounds unbelievable, but for me getting a handle on my health problems allowed me to see that I wasn’t broken at all. I simply was fractured and needed some repairs. In my case, very specific ones since I have a very specific disease (MCAS).

And the reality is, I’m not cured. I am literally one or two doses of meds away from being right back in mast cell hell, which is nowhere anyone wants to be!

Which reminds me. I bought the domain mastcellhell.com and might start blogging there just about living with mast cell disease. I kind of miss my old website which I had to give up when COVID struck, and I do need a place to vent specifically about that without cluttering up this blog. I like to keep specific topics separate, like the blog I started to keep just for mushing and the other one I do keep up for homesteading/prepping. Different audiences need different blogs, right?

I think so.

So I’ll consider that and in the meantime, I am taking my pack of sled doggies for a nice long run this afternoon. We can all use the fresh air. 🙂

Validate Yourself

I didn’t learn about the ACEs test until a couple of years ago but it helped put some of the final pieces of the puzzle into place for me. I’d been through therapy, tried all the medications, failed miserably at “getting better” and had all but resigned myself to a life of misery and bitterness and regret when I came across an obscure study linking immune system dysregulation with adverse childhood experiences.

The Adverse Childhood Experiences, or “ACEs,” quiz asks a series of 10 questions (see below) about common traumatic experiences that occur in early life. Since higher numbers of ACEs often correlate to challenges later in life, including higher risk of certain health problems, the quiz is intended as an indicator of how likely a person might be to face these challenges.

Hell, I have health problems (boy do I!) and I am the poster child for an adverse childhood! Or so I thought. Until I actually took the ACEs test I wasn’t 100% sure that I could trust my interpretation of the past but I did know I felt broken after all I’d been through and now I was practically “allergic to the world” with my MCAS having gotten worse over the decades.

Here are the questions:

For each “yes” answer, add 1. The total number at the end is your cumulative number of ACEs.
Before your 18th birthday:

  1. Did a parent or other adult in the household often or very often… Swear at you, insult you, put you down, or humiliate you? or Act in a way that made you afraid that you might be physically hurt?
  2. Did a parent or other adult in the household often or very often… Push, grab, slap, or throw something at you? or Ever hit you so hard that you had marks or were injured?
  3. Did an adult or person at least 5 years older than you ever… Touch or fondle you or have you touch their body in a sexual way? or Attempt or actually have oral, anal, or vaginal intercourse with you?
  4. Did you often or very often feel that … No one in your family loved you or thought you were important or special? or Your family didn’t look out for each other, feel close to each other, or support each other?
  5. Did you often or very often feel that … You didn’t have enough to eat, had to wear dirty clothes, and had no one to protect you? or Your parents were too drunk or high to take care of you or take you to the doctor if you needed it?
  6. Were your parents ever separated or divorced?
  7. Was your mother or stepmother:
    Often or very often pushed, grabbed, slapped, or had something thrown at her? or Sometimes, often, or very often kicked, bitten, hit with a fist, or hit with something hard? or Ever repeatedly hit over at least a few minutes or threatened with a gun or knife?
  8. Did you live with anyone who was a problem drinker or alcoholic, or who used street drugs?
  9. Was a household member depressed or mentally ill, or did a household member attempt suicide?
  10. Did a household member go to prison?

Unsurprisingly, as I went through each question, I found myself marking them “yes” one by one, all save one. Well two, but number 7 applied, it was just that my dad was the one who was chased down and burned by cigarettes and had his things broken in front of us kids by my mom rather than him beating on her. The last one, though, did not apply. No one in my close family had went to prison, but that one was a technicality.

Should some of them have went to prison? That’s a big yes! In all honesty, at one point in time, I should have, too, but it seems in all the madness my family had some sort of magic spell cast over it that gave us protection from some of the repercussions that befell everyone else who came into contact with us or lived the way we did so none of us went to prison and none of us died tragically.

Well, almost none of us. There’s always that symbolic firstborn-son-demanded-as-a-sacrifice thing, but that’s a different story for a different day.

So the ACEs test served two purposes for me. It gave me some final closure to my past and it also opened the door to the possibilities that my MCAS (mast cell activation syndrome, an immune system disorder) is actually intricately connected to, if not directly caused by, my childhood. It probably started before I ever left my mother’s womb and then was exacerbated once I arrived on the scene, the youngest of five in what I can only describe as my own personal house of horrors.

Which leaves me questioning whether or not generational trauma can also lay the foundation for diseases like mine to begin being passed down to the next in line even if the abuse stops? Has our very DNA been adversely affected by not only our own but our parent’s and grandparent’s adverse life experiences and have we inadvertently “cursed” our progeny with chronic illnesses like mine?

It’s a very real possibility and one I was just diving into with my wildly popular website on mast cell disease when COVID struck and my world completely spun out of control.

Also another story for another day.

Anyway, I highly recommend taking the ACEs test if you need some validation that you really did, indeed, have a shitty childhood. Sometimes we can’t trust ourselves to make these sorts of judgments so it’s nice to have the experts help validate us. 🙂