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

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! :)