"Fourteen Years Later"

I awoke to the sounds of my father yelling. Groggy, confused, hungover, and bleary eyed, I glared over at the alarm clock to see what time it was. What the fuck? It wasn't even 10 am – then still considered a “quiet” part of the day, in a house full of night owls and partying teens at various stages in life. As the oldest of the three girls, I was really the primary partier in the household at the time, but everyone except my Mom had a tendency to sleep late unless work, school, or some other responsibility deemed otherwise. Little did my family suspect that we would all wind up living in this house together again several years down the line - this time as adults recovering from the crashing economy in 2007, all but myself married, and my two sisters both pregnant. Three couples and one stubbornly single person sharing a small house, it was crazy and awful and marvelous all at the same time. Funny how life works. None of us would have willingly chosen that lifestyle. But, when the boys were born, there was a village around to help out. There was almost always an adult around to help with my sisters with the newborns, who may as well be brothers since they are barely a month apart. You have no idea how hard it is to shower or take a shit when you have a baby and no one to keep an eye on it for that five minutes. And I don't even have kids of my own. Knocks on wood. Don't get me wrong, I like kids. I just prefer handing them back.

No, this was still 2001. Long before my baby sisters would be married and have children. A year, that for me, had marked testing out of high school early, because I was so fucking bored with the William S. Hart School District I was barely able to keep bringing myself to class. So rather than graduate late, or not at all, I took advantage of a program offered by the state of California, The California High School Proficiency Exam, or CHSPE for short, designed exactly for people like me. Thank Goddess. Otherwise, I would have been up and daydreaming away at my desk at Canyon High during this pivotal moment in history, instead of sleeping in as late as possible before my first college course of the day. My experience would have been drastically different had I been in class like most people my age. I think it would have been more traumatic, much harder on me, more dragged out. You now how awful high school is to begin with. I imagine classes around the world, huddled up around TV screens, watching together in horror at the scene unfolding before them, crying and consoling each other and the teacher trying to act a like a solid rock upon which the students could find support. As far as I understand it, many classes around the country shut down early that day.

I was totally clueless of the facts as I sleepily rolled over and pulled a pillow over my head, trying to catch a few more much needed Zzz's before heading off to community college. But to no avail. My Dad's exclamations only continued growing louder. I thought he was watching a Nascar race, the way he was carrying on in the next room. He is not really a sports guy, but boy does he love racing, especially Nascar. I am sure his lack of interest in sports involving inflatable balls confuses his fellow Mexican-Americans, but he was purposely whitewashed by his parents so he would acclimate better, and did wrestling in high school. He has no connection to football, or futbal, and I am so grateful for that. I find those sports boring, time consuming, and the fathers of the world who get into them to be generally less engaging with their kids. We went hiking on Sundays, or to the beach. We weren't enslaved to year around game schedules and stats.

But as my father's exclamations of “WOAH!”, “NO WAY!”, and “HOLY SHIT!” echoed down the hall from the living room, and through the poorly insulated french doors to my office-turned-bedroom, I felt no appreciation for his tastes or preferences. At that moment, all I wanted was sleep. Precious sleep. I was constantly sleep deprived and hungover from approximately 1998 to 2006.

Aggravated as only a moody teen can be, I pulled on a big t-shirt and some shorts, flung open one of the doors to my room, and stomped down the hall. My Dad's voice grew in volume and intensity as I approached. I had words of retribution burning on my tongue, Jesus Christ man, can't you be respectable and watch the race later, or at least be quiet while I'm still sleeping?!?

Then, I realized my Dad wasn't the only one in the room, and he was exclaiming in horror, not shouting enthusiastically. All eyes were riveted to the old school style tube television in our living room, California sunshine streaming in behind it, creating an eerie contrast to the feed coming in on the screen. All thought, all previous anger and feelings I'd had, evaporated like morning dew in the hot desert sun.

I didn't know what I was looking at. I was so confused. Instead of cars driving in circles, the screen was focused in on some skyscrapers in a city. I didn't know which one it was, but I could tell from the skyline that it wasn't L.A. I wish I could remember more details about this moment, who else was there or exactly what was said. But my memory of the details are very poor. I want to say my whole family was there, but I don't think that is accurate. I feel like one or two of us were elsewhere. I will have to ask around and find out.

As the sleepy fog rapidly cleared from my head and I focused in on the TV better, I noticed that the camera was zoomed in on a specific set of skyscrapers, and that one of them had smoke billowing out of it from an upper floor. “What the...?” Came out of my mouth. It felt dry and my body felt numb. I can't remember who told me what was going on, I think it was my Dad. What do you mean, a plane hit one of the Twin Towers? Was it a horrible accident or something? No one really knew what was happening or why, and I felt even more confused. I sat down on the couch next to him. And then the second plan hit the tower. It was so surreal. I felt like I was watching a movie. There's no way this can actually be happening right now in our own New York City! But it was. The reality of the situation hit full force when we saw tiny figures throwing themselves from the Towers to escape the flames and destruction. Holy shit, those are people! People who got up and went to work, just like anyone else. Plugging away at their computers, making phone calls, worrying about getting that TPS report done on time. The last fucking thing you'd be thinking about is if some crazy assholes are going to be flying 747's into your building and you'd be faced with death in a most brutal form.

We didn't know what to say. My Dad grew silent. We just sat there and watched 9/11 unfold, like the rest of the nation. Horrified, shocked, surprised, confused. Why would this happen? How could it happen?

14 years later, and we are still struggling to answer these questions. There are too many layers to it for anyone to fully unravel. Violence and destruction are never excusable, no one should ever have to worry about dieing a fiery death on the job, unless you're a firefighter or something like that. Certainly not as a Paper Pusher.

But have we learned anything? Did anything change? Or did we just react, respond, get lost in a sea of justified anger and patriotism, and carry on with the Military Industrial Complex as usual? Did we try to figure out why people would feel compelled to do what they did on that day, to perform such great acts of horror? To what were they trying to draw our attention, and did we stop to notice? How much longer will America “walk softly and carry a big stick”? When will we realize we don't walk softly at all, that our steps make massive impacts on the rest of the globe? That in order for us to be able to live the American way, to buy cheap electronics and clothes and shoes and sheets and towels and diamonds and medications and everything else we consume, that countless people suffer for it?

Think about it. Where are your clothes and shoes that you're wearing right now made? How were the raw materials used to produce those goods harvested and processed? Don't you wonder why more products aren't made in the USA by US citizens? Don't you wonder why we have military bases in practically every country on the planet?

I will never, ever, suggest that the horrors of 9/11 were justified.

I just wish we would learn to respond more and react less. I think that, slowly, people are starting to question our insatiable need for war and cheap, imported goods. The internet is making all sorts of progress and revolutions possible.

But I still wonder how much we have actually learned. When you listen to the delegates for the upcoming presidential election speak, it is easy to lose faith. They sound like the worst batch of talking heads ever produced by the electoral process, on all sides. I'm considering burning my ballot this year. I seriously think that would be a better use of time, energy, and paper, than voting in any of the fucks running for office. Thankfully, Bernie is holding his own pretty well. He's a bit socialist for me, but he's probably gonna get my vote. Who knows.

How different would things be had we heeded Eisenhower's ominous warning back in '61?

Regardless, I remain a cautious optimist. I think we are waking up. Although I feel it cannot happen fast enough. I long for progress to happen more quickly, and trickle up to the bureaucracies asap.

Those are always the last to be effected by growth, change, and progress, and yet hold the most power.

If I could, I would scrap the entire House and Senate, and start fresh with people under the age of 45.

It's time for the old ways of Military and Corporate control of America to end.

Before another 9/11 happens, and/or we destroy the fragile ecosystem of this planet any further.

May those who were affected by this travesty find love, peace, and serenity. <3 <3 <3

New Poem - "Insatiable"

Fresh out the current "Black Book" - which actually has a pink/gold plaid pattern on the cover hehe - I present this piece to you, just written yesterday :)
Hope you enjoy!

“Insatiable”

Your words still burn

like poison in my ears

How do I rid myself

of your ill intent?

Hell bent on destruction

Misery loves broken down company

Fuck 'em

Fuck you

and all the rest

of the Haters

trying to put me down at my best

You are like fire

I won't get too near you again

out of concern you'll burn

Consume

a hunger that never ends

You don't see

so long as you only

Take, and never Give

You will remain Insatiable

for as long as you live...

R.C.H.

Thanks so much for reading!!! Poetry and free writing are such great ways for me to process some of the heavier things in life and get stuff off my chest :)

Don't let the Haters get you down. Keep on keepin' on with yo' bad self <3 <3 <3

*Love & Light*
Renata Carmen

Staying Sane in the Midst of a Flare - Keep Pain/Suffering In Context

Been in a pretty rough spot the last few weeks or so due to a flare in my Fibro. Been having major problems with my arms. Had issues with them in the past, but not to this degree. The muscles, tendons, and joints hurt, ache, burn and my whole arms are very weak and shaky.  To the point where I can barely lift my can of seltzer water (*note to self - get straws*).

It's terrifying and frustrating when you've been doing better for a while and then you get debilitated again. And having to manage the pain is the hardest part, not so much the physical side of it, yes that is a huge challenge, but the drugs sure help ("I don't like the drugs, but the drugs like me."). Although they don't really make me very functional, just take away the urge to have my arms cut off in hopes of alleviating the pain.

The harder part, for me anyway, is the mental side of pain. Of waking up in Level 10 pain for weeks straight, being too debilitated to do even little things like vacuum, or type (*other note to self, play with voice to text software I was given last year and never messed with* - The creative process just doesn't work the same when my hands aren't involved). Forget about wrenching. All projects are on hold. Yes, I could ask for help, but it's not as satisfying if I don't do the restorations myself. You could say I'm a bit stubborn, yes. If things don't straighten out in the next month I will break down and get some help on my projects. Because up here in Vermont, Winter is Coming! I know it's Midsummer, but we only get so many months to wrench before it gets too cold for major work. Unless you have a heated garage (#goals).

Not only does being miserable from chronic pain/illness/disability make you feel worse, it makes those around you feel awful too. Don't get me wrong, it's pertinent to express one's grief in a healthy manner, but then one must move on. Otherwise we end up a bitter mess that no one wants to be around. And being alone/feeling isolated is another amplifier of disease progression/symptom levels.

I've spoken before about how much Eastern Philosophy helps me manage the mental side of being chronically ill. Today I want to highlight a specific lecture that has been especially helpful to me over the last week as I've struggled with the latest digression in my symptoms.

It's a lecture Alan Watts gave on KQED Public Television in either 1959 or 1960 about Pain/Suffering, and how to manage it mentally using concepts from the East. I hope you find it helpful as well. It's about 30 minutes total, split up into two parts. Below the video clips are a few quotes that stood out to me.





"There is nothing that is so much the very essence of suffering, as the fear of suffering itself."

"The first proposition of the Buddha...is that life as we live it is fundamentally...a kind of chronic frustration, and man's effort is always to get rid of this ["Duhka" - suffering, pain], and go to that ["Suhka" - bliss, happiness]. But the basic idea of the Buddha was that if you have this [suffering], you must have this [bliss] because these two contrast with each other. You don't experience [suffering] unless you experience [bliss], and you don't experience [bliss] unless you experience [suffering]...And therefore, the idea of the Buddha's doctrine was not to get rid of pain and put pleasure in its place, but to go to something else which stands as it were transcending these two opposites, above and beyond them. Which in Sanskrit is called "Ananda" [English equivilant is "ecstasy" - rapture; transport; an overwhelming emotion; a state of sudden, intense feeling]."

"Now how is it that through a profound going into suffering, that is to say, a profound acceptance of it, there can come out of it some sort of bliss? This is the problem we have to understand."

"We find that our feelings depend for their evaluation, as to whether they be positive or negative, very much as to the context in which they occur."

"Therefore, the idea of the Buddha was to become delivered from suffering, not by running away from it, but from looking at the actual concrete reality of what we feel, and forgetting the context." 

Hope you found this to be as helpful as I do! What did you get out of this video?

Should you get any benefit from Mr. Watt's work, please consider supporting his legacy by purchasing some of his original works.

And if you find any value from this blog, please consider making a donation to the PayPal link at the top right of the page. I don't create these posts expecting anything but to help/entertain others, but I am a disabled mechanic/artist who is not currently receiving SSI/SSDI and when I'm flared up it's hard if not impossible for me to get my hustle on. I'm also working on adding Bitcoin here! :) 

Many thanks for your continued support!
*Love & Light*
Renata Carmen

Staying Positive While Living With a Chronic Illness - Comedy & Humor

Journal Entry from earlier this morning:

"Rough start so far, but determined to turn things around. Emo and in pain from ovulation. Didn't sleep as long/deeply as needed and am exhausted and ready to go back to bed even though I just got up. Also stiff, sore, nauseous. Woke up sad/angry about my life circumstances - about feeling rejected/misunderstood by both sides of my family, about money, independence, my health and stamina and sun sensitivity, disability. My brain started going down fast. Started crying, feeling overwhelmed, wanted to break down and start destroying furniture and shit. But this energy does nothing positive or constructive for me at all, and I know everything I'm feeling is valid, but I must channel the river of my emotions accordingly so as not to get swept away in a path of irreversible destruction. 

This day is mine, I claim it, to do with it as I please. I will focus on my blessings, all that I do have, and I will work my ass off to the best of my ability to get as much done as I can, and whatever my best is today, that's okay. It's okay to feel what I feel. It's not okay to wallow, to waste this precious gift of a day by crying and feeling sorry for myself, by focusing on what I lack. This days is mine, I claim and own it, here and now. I can make it into whatever I want it to be, whatever I choose to focus on. 

And I choose love and light and magick and art and creativity and laughter and adventure and service. 

This I choose. And so it shall be. 

Praise Jah!"

Living with Fibromyalgia means that I wake up pretty much every day already struggling before I even get out of bed. With either physical pain and other symptoms like nausea, vertigo, and arthritis, or mental/emotional pain due to chronic illness and disability, like anxiety and depression. Waking up feeling awful makes not only turning your day (and anyone's who happens to wake up next to you) around incredibly difficult, being overwhelmed by emotion can sap one of energy and deplete your immune system, which is already quite taxed for us "spoonies" of the world.

So, how do I turn shitty mornings, or anytime of day, around into something positive and productive, despite the fact that I live with a debilitating, life altering and life long illness?
In my previous post in this series, I discussed the benefits I receive from daily studies of psychology and philosophy. Today I'll be discussing the next cornerstones in my drug-free symptom management tool kit - Comedy and Humor. As I was writing the previously quoted journal entry earlier today, I put my favorite comedy bits on and you can see how it helped turn my mood from dark, stormy, destruction into one of determination and positive focus.

Simply Google "the benefits of laughter" and countless medical resources come up with articles detailing how laughter, like creativity, aids blood pressure and vascular flow, reduces stress hormones like cortisol and adrenaline, helps the pituitary gland produce endogenous opiates thus naturally reducing pain, increase memory and learning, bond partners/groups and the two halves of the brain, and workout the diaphragm, abdominal, respiratory, leg, and back muscles. Working out while laughing? What a fun extra side effect! I'll take all the extra exercise I can, since my stamina is still pretty low and I'm not able to be as active as I'd like. And as for the strengthening bonds thing, I can tell you firsthand that humor is one of the biggest saviors of my long-term relationship, which started shortly before the onset of my illness and has seen some serious tests over the 4 plus years we've been together now.

Check out this quote from Dr. William Fry of Stanford University on http://www.care2.com:

"Humor and creativity work in similar ways – by creating relationships between two disconnected items, you engage the whole brain. Humor works quickly. Less than a half-second after exposure to something funny, and electrical wave moves through the higher brain functions of the cerebral cortex. The left hemisphere analyzes the words and structures of the joke; the right hemisphere “gets” the joke; the visual sensory area of the occipital lobe creates images; the limbic (emotional) system makes you happier; and the motor sections make you smile or laugh.

So let’s laugh."

Word, homie! Let's laugh indeed, even in the face of seemingly overwhelming circumstances. 
One of my favorite ways to get my daily dose of comedy is through podcasts. Podcasts have become one of my favorite media sources because they are usually free, instantly accessible, and have very little advertising - which not only means less commercials to skip through, but more freedom to the podcasters to express themselves without censoring their beliefs or language.

Some of my favorite podcasts for comedy are: The Joe Rogan Experience (he also has very interesting guests on there, so you learn while you laugh), Bill Burr's Monday Morning Podcast, and The Duncan Trussell Family Hour (he also has interesting guests in addition to being very funny, and a few years ago overcame cancer in one of his balls and the loss of his mother - whom he had on as a guest not longer before she passed and it was one of the most beautiful things I've ever witnessed).

Here's some of my favorite comedy bits (all of which I've watched this morning). 
Hope you enjoy them as much as I do! 

I love this bit and have watched it probably dozens of times. This is my go-to when I feel especially down and have no interest in anything goofy or silly. But it perks me up everytime! 


The Stages of Grief by Robot Chicken. I find it to be a perfect metaphor for chronic illness/disability especially. Fucking hilarious!


Maybe you have to be sorta fucked up or have crazy family to truly appreciate "Billiam", but I love this man. He is probably one of my favorite comedians. 


Haha yes, at 30 years old, this is my life right now!


Fucked up thoughts, we all have 'em. Bill's just happens to be really funny. Maybe partly why I love this man so much is he makes me feel sane ;) 


One last Bill Burr bit. For recovering Christians like myself. I laughed so hard the first time I saw this one I teared up :)

More Robot Chicken, some of their Star Wars Parodies (some of my faves, go Seth Green!)

I could list dozens more of my favorite comedy bits, but I think I've given you enough to mull over here for now. 

What are some of your favorite ways to laugh, or do you have any favorite comedians or podcasts?

Thanks for reading!
*Love & Light*
Renata Carmen

Please, if you find any value from this blog, please consider making a donation to the PayPal link at the top right of the page. I don't create these posts expecting anything but to help/entertain others, but I am a disabled mechanic/artist who is not currently receiving SSI/SSDI and when I'm flared up it's hard if not impossible for me to get my hustle on. I'm also working on adding Bitcoin here! :) 

"The Cosmic Dance" - Poetry

Well good morning, beautiful piece of poetry I don't remember writing last night :)
I'm diggin' the word play and theme of this one. Enjoy! 

feeling sick
but unbroken
these words are spoken
by a warrior with Yaqui provokin'
the fight in my veins
yeah
you thought you killed us all off
well, guess again
we're too damned stubborn and strong
to ever be kept down for long
you see
we've still got the Earth Mother connection
Father Sky looking down, sending us lessons
so easily missed by those all amiss
lost and confused, like you're in a deep mist
but with my Yoeme eyes I can see
the inner workings and harmonies
of this world, this universe, how ever many may be
my culture claims Five
but could be indefinitely
ongoing, ever flowing
outward and in
like a fractal
eternal, infinite
look deep within
and you'll find you're part of it too
the entire universe is also in you
and out at the same time
reality is a mindfuck
but it's fine, more than fine
it's amazing, divine
join in the Cosmic Dance
don't worry about keeping time, or score
just enjoy the present score of music
the Great Party
the dancer's decor
a feast for the senses
but only if your tenses
are focused on the present moment
with no pretenses
own it, be relentless
in your pursuit of happiness and contentment
many naysayers will say it can't be done
but only of their own resentments, my son
so chase down your folly
life's too short otherwise
may you be ever jolly no matter the size
of any battles you might wager this day
remember, you're strong as Yoeme
or whatever Ancestor blood runs through your veins
pay tribute to them by being strong despite the pain
know to experience, to be alive, is to truly be blessed
even when you're stressing or not feeling your best
if life's a play, then let me play my role well
seems my Persona's deemed to guide others up out of Hell
oh well, so be it
I can't think of anyone better
considering my wings have been scorched
but I still have my feathers
I've weathered many storms
Please, give me strength for the next
until this role is no longer needed
then at last I shall rest
when the Persona exits Stage Left
and I move on to whatever Cosmic Play is next...

Sometimes the words come out kinda crazy like

Thanks for reading!
*Love & Light*
Renata Carmen

Please, if you find any value from this blog, please consider making a donation to the PayPal link at the top right of the page. I don't create these posts expecting anything but to help/entertain others, but I am a disabled mechanic/artist who is not currently receiving SSI/SSDI and when I'm flared up it's hard if not impossible for me to get my hustle on. I'm also working on adding Bitcoin here! :) 

Staying Positive While Living With A Chronic Illness - How I Use Philosophy & Psychology to Manage My Perspective

Oh so very flared up today and the last several days. Have been battling vertigo and brain fog pretty bad. Please pardon any typos or poorly constructed sentences as a result :)

Spring is rough on my Fibromyalgia due to fluctuations in barometric pressure. Just gotta ride out a few more weeks. Then the weather should stop fluctuating from Winter to Summer, and finally settle into the warm glories of Summer in Vermont. Besides the ticks, mosquitoes, and poison oak, this place is heaven during the warmer months. Heaven all year really, if you're into the four seasons thing. Which I totally am. But I digress.

I'm not here to talk to you about nature or the seasons or Vermont. Not today, anyhow.
Today I want to share something very important to me, and maybe it will help someone else too.

Living with a disabling chronic illness can be a total mindfuck. There's a reason medical professionals tend to automatically dole out anti-depressants when a patient is diagnosed with something like Fibro. Your entire quality of life is altered in ways you can't comprehend unless you've been through something similar yourself. The difference between gnosis and simple book knowledge, I suppose. The entire experience could break a person's will and mind if not managed properly.

I'll save the discussion of my favorite plants and chemicals for managing my Fibro and the stresses of living with it for a time when I don't feel like I'm stuck on the Disneyland "Teacups" ride for several days straight.

Not so fun when you're unable to get off the ride

For now I'd like to focus on drug-free ways of feeling good even when living with something as challenging as chronic pain and illness. Drug-free methods are awesome because you don't have to worry about safety or tolerance, they're legal everywhere, and they give empowerment to the patient. Either used alone or in combination with your favorite chemical cocktail, these methods have and continue to prove to be invaluable to me in my day to day life.

I know what it's like to wake up feeling like death, either due to an illness, or depression, or some other life circumstance. Waking up exhausted, in unimaginable pain, and struggling to get out of bed. I woke up like that yesterday, and today, and probably will tomorrow. The joys of illness.

How do you keep from going mad when faced with such a grim Groundhog's day existence?

Finding humor within the madness

For me, it's all about perspective. Our perspective molds our realities, fuels our creativity, drives our immune systems. Instead of starting my days off with the news or social media, I start off listening to something that will fuel me rather than bog me down. As a "spoonie" with limited energy, this is pertinent to being able to maximize my use of each day.

The beauty of living in the Information Age is we have access to pretty much any piece of data ever recorded, for free or very close to that. You can learn about anything you want. You can choose which forms of media you will consume, which communities you'll interact with. You can filter your online reality into the ultimate educational/inspirational machine. Or you can turn it into a nightmarish collage of death and destruction and despair. You decide. It's your reality, after all.

My favorite topics are Personal Development, Comedy, and Philosophy/Psychology, specifically Eastern Philosophy. I'd tried studying Zen and integrating meditation into my life in the past, but as a Westerner and recovering Lutheran I found the concepts so foreign I wasn't able to properly grasp them, got frustrated, and gave them up.

Then I discovered the work of Alan Watts. He was a brilliant Comparative Philosopher who helped popularize mainstream interest in Eastern Religions during the 50's and  60's. By lecturing in an entertaining way on the similarities and differences between the West and East, he helped the United States to understand both cultures and their religions/philosophies with greater clarity and insight.



I find his words to be very helpful in my day to day struggles. They continually help me to keep my perspective positive, by reminding me how little we understand, and how beautiful the mystery is. A mystery of which you and are also apart.

It helps that his voice is so soothing you don't care what he's discussing, like listening to a waterfall.

I also love the work of Psychologists Carl Jung and Robert Anton Wilson. Studying the mind helps me to understand and manage my mental battles with more skill and strategy.



Honorable mention goes out to Ann Shulgin, who has worked as a Lay-Psychotherapist, and shared her experiences in the brilliant and taboo shattering books she co-wrote with her husband - the late, great Chemist, Alex "Shasha" Shulgin (RIP Sasha. Thank you for your tireless and fearless dedication to studying consciousness!). Even if you have no interest in chemistry or pharmacology, there's a damned good tale of love, hope, and adventure interwoven in those pages.

Some of the greatest explorers you've probably never heard of

I hope by sharing with you here that you too may find peace and serenity from the many works of these great souls, or if not, the inspiration to seek out your own favorite "mind fuel" to help give you the strength and inspiration to overcome whatever mountain you're struggling to climb.

Next post I'll discuss my favorite comedians and how laughter effects our health, immune system, and pain levels.

What are your favorite drug-free methods to manage stress, anxiety, and/or depression?  

Thanks for reading! 
*Love & Light*
Renata Carmen

*Please, if you find any value from this blog, please consider making a donation to the PayPal link at the top right of the page. I don't create these posts expecting anything but to help/entertain others, but I am a disabled mechanic/artist who is not currently receiving SSI/SSDI and when I'm flared up it's hard if not impossible for me to get my hustle on. I'm also working on adding Bitcoin here! :) 

Accepting a "New Normal" - My Struggle with Reintegration

Old Zen Saying: 

“Before enlightenment, carry water, chop wood. After enlightenment, carry water, chop wood.”

“Where the hell have you been, Renata?”

It’s been several months since I’ve updated this blog, or been a regular on Facebook, or responded to emails in a timely manner. A lot of people in my life have been wondering what happened to me, and I’ve been stuck in my own little world, struggling to reconnect and carry on with my life.

In fact, ever since I was officially diagnosed with Fibromyalgia in February, I’ve found I’ve had to force myself to interact with others. Every aspect of my life, especially my social and personal life, has been flipped completely upside-down, especially when I first started getting sick.  I was so taken by surprise and overwhelmed and heartbroken by the deterioration in my health, it was all I could do to keep up with each day. I was riddled with grief, bitterness, anger, and despair over the perceived betrayal of my body and mind as my condition continued to get worse, despite my best efforts and countless labs and tests to try and figure things out. But at least then I was still trying to reach out to others. When my illness became so bad I was completely homebound, I found myself consumed with depression, and felt hideous stabs of heart-wrenching envy towards others in better health. Like a poison it seeped into every pore and warped my perception of reality. Suddenly my Facebook feed was filled with negative comments, petty complaints, and self-absorbed pictures. Conversations with most people seemed to revolve around things that no longer matter to me, like what commercials were funny last night, what the major headlines were, or who won American Idol. It grossed me out, shocked and confused me, had become something I could no longer identify with.

In short, I felt as though I had been completely removed from society. Like a homeless person pressed up against a restaurant window, drooling over all the marvelous dishes being served inside, imagining what it tastes like, smells like, feels like, to be one of those lucky diners on the other side of the glass. Hungering for the shared experience but having no idea how to become integrated, and despairing over the loss. Despairing because you feel like you will never, ever get to be apart of the greater whole ever again.

Not my art, but yeah this is a good visual of my struggle

After three long years of desperately seeking some sort of official diagnoses and finally getting it earlier this year, you’d think that would make it easier to reintegrate. To pick up the pieces of my life and fit them back together. Or at least I thought that’s what would happen. Instead, I find myself still desperately struggling to become apart of the fabric of society again. Not only to help others in any way I can, especially those who suffer from chronic illness or pain, a calling I feel deep in my soul and cannot ignore, but for my own sanity as well. Human beings are social creatures, we need intimacy and interaction to be healthy, whole people. I used to be an incredibly social person, always keeping up on the affairs of those I care about, organizing and attending events of all kinds, but that has all changed over the last couple years. Mostly it has to do with my chronic fatigue, compromised mental capacities, and UV sensitivity. I just don’t have the energy to do what I used to, and my “brain fog” affects my memory and communication skills, which makes me self-conscious in ways I never was before 2011. And the light sensitivity is just downright fucking inconvenient and odd. I always get the “This bitch is crazy!” look from others when it’s brought up in conversation or they notice me shunning sunshine and fluorescent lights like some kind of non-sparkly vampire. (Just to be clear, my favorite vampires remain those conjured by Anne Rice, which do not sparkle under any circumstances.)

But I find what inhibits my socialization and activity the most is my perspective, more so than the physical or mental limitations I’ve become so self-conscious of. Thankfully, the bitterness, anger, and resentment have mostly faded away. I still catch myself mourning all the losses I’ve experienced: relocating from the friends, music, and culture of Boulder, Colorado, to this sleepy Southern Vermont village more than 3 hours from any major city; having to leave my blossoming career with Whole Foods (the greatest company I ever worked for and one I could have actually pictured staying with for more than a couple years before getting burnt out and bored) because I can no longer physically or mentally keep up, and not being able to work in general; managing all the scary and bizarre symptoms associated with Fibromyalgia...but I suppose that is why grief is called a “process”...We never fully get over these deep losses, but the pain gets a little better every day. Eastern Philosophy and altered states of consciousness sure help to speed up these travails!

Alan Watts, one of the greatest men you've never heard of and a major part of my Sanity Regiment

What hasn’t changed and makes my reintegration so damned difficult is this feeling of being an “outsider”. I’ve undergone, and am still undergoing, a massive change as a person. I feel like a caterpillar that is becoming a butterfly. I’m being “tempered” by my struggles, by my near-death experiences, by my assumptions and beliefs being completely flipped on me. I, like the majority of people it seems, took certain things for granted, things that seemed like “givens” in life, things that were uncompromisable, unshakable, like the Law of Gravity. Things like being physically and mentally able to work or do chores, having the stamina to go about your day without needing to rest after 4 to 5 hours of activity, being able to stand in sunlight or under fluorescents. But I’ve come to realize that these are not experiences to be taken for granted. Every nerve that tingles, every pore that breathes, every sensation experienced, every moment you have in this body on this planet at this time, is a massive blessing and not to be taken lightly.

Yet it’s so easy to forget, isn’t it? As we go about our days, absorbed in the stress of the “Real World”, of our commutes and families and bills and Reality TV and Fantasy Football and politics and major headlines, we completely forget who we are, and all that we have. Until something is taken away, goes amiss, breaks down, we tend to not notice it’s even there. Like toilets. You take yours for granted, until it stops working and you have to wait for the plumber to come out and fix it. 

But what happens if the plumber doesn’t know what’s wrong with the toilet? And you see a bunch of different kinds of plumbers who do all kinds of tests and they still can’t figure it out? I guess plumbing isn’t as big a deal as the body, if your pipes or toilet are that messed up you can pull it all out and start over. It’s messy and expensive and a huge PITA, but it’s not like when there’s something wrong with your body and the doctors can’t figure it out. You can’t scrap your body and start over fresh with a new one when something goes terribly wrong. I used to believe that doctors knew everything about the body and how to fix it. But after the last couple years of bouncing from specialist to surgeon, lab to lab, shitting and pissing in cups and drawing more blood than a transfusion patient, I’ve learned that’s not the case at all. There’s a lot we don’t know about the body or why it goes wrong or how to fix it, more than most medical professionals will admit. Especially when it comes to the Central Nervous and Immune Systems going haywire. They seem to understand that about as well as Homer Simpson understands Quantum Mechanics. 

Come to think of it, this is how most medical professionals treat me when I'm telling them my full medical history

And that will shake up your little world, too. I thought I could trust the professionals, but their methods of treatment for diseases like Fibro are about as advanced as using leeches or cutting to drain the demons out of your blood when you’re sick with the flu. 

   What can you trust in this world when The Unshakables you’ve built your foundation upon fall apart? Like the functionings of your body or mind? How does one find stability in a seemingly chaotic and cold universe? How do you make the most out of a bad hand dealt to you by the luck of the draw? How can you go back to living life like you did before? Be the person you were when your friends met you? Will they still like me, accept me, now that I’m so different from who I was? How in the hell do I even have conversations now? Why is it so fucking hard for me to come out of this hermetic place, to come down from this lonely mountain top and be amongst the masses again? Is it because I see from up here we are all playing roles in this life, wearing masks, masks we call personas, but most of us have forgotten we’re playing a game and take it far too seriously for my liking? So seriously, in fact, that we kill and rape and pillage and gossip and war over it?

You shouldn’t have to go through hell like I have to understand this, but it seems that is the only way to see The Human Game with clarity. It seems this is why older, “more primitive” societies have Shamans, Witch Doctors, Monks, Hermits, Zen Masters. They help society stay balanced by providing an outside perspective. Maybe this is what I’m supposed to do. People ask me why I don’t watch or read mainstream news, radio, or television. It’s the same reason I’ve had a hard time getting back on Facebook. Our input drives our creativity, shapes our reality, molds what we believe is possible. There is such a huge amount of negativity on social and mainstream media I find it dizzying. If I allowed the inputs of mainstream society to shape my decisions, habits, and beliefs, I’d be taking pills to “manage” my illness, still be eating like shit, and bitching about my health/life in the progress. I wouldn’t be doing anything proactive about it. I never would have developed the gall to self-experiment with herbs, neurotransmitters, diet, and lifestyle, seeking my own solutions and listening to my own body rather than relying on the dogma of others. 

Has absolutely nothing to do with what I'm talking about, I just love the movie Dogma and Buddy Christ

Because we’re told over and over again, through magazines, newspapers, television, radio, and advertising, that we’re not good enough. That we’re incapable of empowerment or creativity or self-sufficiency. That you need a middle-man to help you manage your health, your money, your consciousness, your spirituality, your life. And that your persona is not a game, but very much real and to be taken deadly serious. Because otherwise you aren’t producing and consuming and that makes you a bad citizen in a Consumerist Based Society. 

Well, if my role is to be the Outsider Looking In, then maybe I should embrace it and be the best damn Hermit I can be. But I can only be useful if I come down off this summit and reintegrate. What’s the point of this journey, of my personal struggles and accomplishments, if I’m not giving anything back, if I’m the only one aware of them? Maybe my experiences could help ease the suffering of others, which I feel a strong urge, almost compulsion, to do in any way I can. No one should ever suffer needlessly, should ever have to walk this road alone, be denied the many options available to them for healing strictly because of outdated taboos and propaganda. 

And maybe I can use this as my “Why Power” (mad props to Darren Hardy!!) to overcome my withdrawal from society. Understanding Human Folly shouldn’t cause me to condemn or repel from it. 

It’s just part of The Game that we all play, whether we’re aware of it or not. Being aware of it doesn’t make anyone better or separate from others, it just enables one to play and learn more efficiently. To see life for the drama, the great dance that it is, and to enjoy the act of dancing rather than losing out on the present moment by obsessing over a destination, worrying over what tomorrow will bring, focusing on what we don’t have instead of realizing the vast abundance that constantly surrounds us, if only we would open ourselves up to it and embrace it. Not to pull away and close ourselves off from the immense beauty and magic happening. Happening Right Now. At This Very Moment. And this one. And this one too.

Let’s get off our apathetic asses and go experience as much as we can handle, relishing the Present Moment in all its glory, with an attitude of gratitude. Even if all I can do today is the most bare-bones of basics, if I can only handle being out of bed for short periods of time because I’m so fucking wiped out from fatigue and malaise and stomach issues that have me running to the toilet every couple minutes, I can still revel in the fact that I’m alive, that I have my perspective to contribute, that I can see and hear and feel and talk and think and dream. 

That I am one unique expression of the energy that comprises this glorious and mysterious Universe, and that is more than enough, and I am content.

And you are too!  We can all learn from each other, from the different perspectives we hold, if only we can develop the courage and strength to reach out to others, to share our vulnerabilities rather than hide from them. To come down from this damned lonely mountain top. The first step is always the hardest... Baby steps. I’ll start making small changes today to get me back on course.

‘Cuz holy shit, am I “ronery”! I miss you, world.

Is your glass half empty, or half full? What will you do to seize this day?  

*Love & Light* 

Renata “The Chronic Badass” Carmen

Please, if you find any value from this blog, please consider making a donation to the PayPal link at the top right of the page. I don't create these posts expecting anything but to help/entertain others, but I am a disabled mechanic/artist who is not currently receiving SSI/SSDI and when I'm flared up it's hard if not impossible for me to get my hustle on. I'm also working on adding Bitcoin here! :) 

A Quick Note Concerning Relationships and Chronic Illness - How Changing Your Mindset Can Change Your World

I have been deep in the grip of a flare-up in inflammation, which has put my Health Tips for the Holidays Series on hold. I will be getting back into that shortly.

In the meantime, I wanted to post something to keep this blog alive and kicking, but I'm in a ton of pain and have the worst brain fog and fatigue so it makes writing very difficult.

Thus, this will be short, and probably full of silly technical errors. Please forgive any that do appear.

In the going on 3 years now that I have been chronically ill, I have done a ton of research related to the matter. Some of my favorite sources are forums, where one can read the experiences of other patients.
Not only do these stories provide unique and invaluable medical insights, and help me maneuver the complex health system more efficiently, they also validate my feelings. To know one is not alone when you feel desperately so is like giving water to someone wasting away in the desert. It could save a life.

That is probably the most tragic common theme amongst the chronically ill. The tendency for loneliness is powerful beyond description. Over the last few years, I have felt so lonely and scared I was afraid I would go mad with grief and despair. That is why I got my cat, who turned out to be badass because she is a Norwegian Forest Cat - which means she is smart and can climb down trees frontwards and likes water (and all kinds of other fun facts I won't bore you with now)! I strongly suggest a companion animal if you are homebound and/or disabled, especially one that is smart and will get tuned into your moods and needs. Freya kitty knows when I'm not feeling well and gives me snuggles when I need it, she also knows when I'm sleeping too much and will harass me til I get out of bed and play with her.

My gloriously fluffy Forest Cat (Skogkatt) and Companion "Freya"

Anywhoos, enough babbling about my super awesome kitty friend.

Back to the serious stuff.

Its damn near impossible to understand someone who is sick unless you have been there yourself.

My research has shown that those suffering from the onset of "invisible diseases" like Lupus, MS, RA, Fibromyalgia, and other immune mediated illness, are grossly misunderstood. The odds are stacked against us; we have a 50% chance of having a doctor give up on us (I've had a few), an equally high chance of being misdiagnosed with a mental illness (I've had a doctor try to shove Zoloft down my throat, even after a Psychologist announced my symptoms were not psychosomatic), and we have a 75% chance of losing our partner/spouse in the time it will take to get diagnosed, which is an average of 7-10 long years.

These statistics blew my mind when I first came across them last year (Or maybe it was the year before? And of course I can't find my source now. Dang brain fog! I'll find it again and post it when I do).
But I can attest to the challenges that the onset of a debilitating illness can create in your personal life, especially with the one you love.

My boyfriend and I had just moved in together a few months before I started getting really sick. Within 6 months I was on an extended medical leave of absence from my blossoming career, which I wound up having to walk away from just a few months after that. As money and health problems continued to build up, we found ourselves being overwhelmed by the situation. Its like being caught in a rip tide and no matter what you do to get out you keep getting sucked back in. We were starting to argue. I was so stressed out about my deteriorating health I couldn't focus on anything else, any of the "real world" stuff. This left my boyfriend to carry the burden of acting as head of household, my caregiver, and my boyfriend. The stress started to create cracks and rifts in our relationship, and we were headed for destruction. We would have crashed and burned had we stayed that course.

But instead of becoming just another statistic, we were able to make our situation better.

To an outside observer, it would appear that nothing's changed.
We are still broke. I'm still sick. I'm still sensitive to all forms of UV light. I'm still unable to work. We still have a host of challenges to overcome.

So how have we come so far together, and learned to smile despite the pain?

When you find yourself in a situation you're unable to change, "don't wish it were easier, wish you were better." We delved into personal development and psychology and all kinds of studies. I will list specific titles and so forth that we have found especially helpful in a future post.

Change your mindset and you can change your universe.

Learn to be truly grateful and you will realize you already have everything you need.

During times of great struggle, love should bring you together, not push you apart.

Keep laughing, always!

I could keep spitting similar anecdotes, but I will finish this with a music video I recently saw for the first time. It does an absolute perfect job of illustrating what I'm trying to say, and after watching it I knew I wanted to include it in a post. The couple makes me think of my boyfriend and I; their situation is a beautiful metaphor for how changing our perspective has changed our world. Its so good, it makes me cry my eyes out.

I hope it touches you also.



What are some of your favorite methods for overcoming challenging situations?

*Love & Light*
-Renata Carmen

Please, if you find any value from this blog, please consider making a donation to the PayPal link at the top right of the page. I don't create these posts expecting anything but to help/entertain others, but I am a disabled mechanic/artist who is not currently receiving SSI/SSDI and when I'm flared up it's hard if not impossible for me to get my hustle on. I'm also working on adding Bitcoin here! :)