Trusting Myself to Build Healthy Relationships After Surviving Narcissistic Abuse

Into the Fire

Sometimes, mental illness makes me overly reactive. Other times, as I’m “coming back,” I retain that “edge” needed to take constructive action towards the situations that actually needed it, all the tiny things that simmered low on my priority list because I had more important fires to tend. But even though fire burns, I remain grateful for its role in purification.

“Pre-menstrually we tap into our firepower — our ability to rage and destroy. … The greatest gift of our moon time is in learning to clear space and enter the darkness, in order to be reborn as fertile, creative beings once more. We learn that this letting go, this cocooning in the darkness, is integral to our health. Again and again we must learn to be comfortable in the formlessness of transformation, and rest in the mystery.”

— from Burning Woman, by Lucy H. Pearce

In the past, this edge had sometimes been the only thing connecting me to my power, the only thing to show me that the things I was upset about actually had merit and deserved greater attention. Lucy also paraphrases this very astutely in her other book, “Moon Time”:

“I use the sword of my intolerance to cut deep and true. I keep hold of my vision and manifest it.”

I can think of no better metaphor than this. Allowing the innate wisdom of our frustrations to guide us to their roots, the one place from which we can actually enact change, because we’re finally courageous enough to look at why these seeds have sprouted in the first place. So maybe…

Maybe I should pay more attention when people breeze past painful details I’ve chosen to privately share with them, because that’s a clear sign they lack empathy.

Maybe I shouldn’t keep any digital platform that worsens my mental health, especially just to stay in touch with people who have lots of other ways to stay in contact with me, if they wanted.

Maybe it’s okay if I don’t want to be the only one who tries to keep in touch, 100% of the time.

Maybe I shouldn’t give privileged access to my life to those who only want to be spectators, or to those who only want to get involved in the fun parts. Maybe it’s okay to not be okay with that.

Maybe I should remind everyone that you are not entitled to anyone’s personal information just because you ask kindly, because kindness should not be a manipulation tactic.

Maybe I should remind everyone that my “no” demands as much respect as my “yes,” and that I will not be coerced into feeling a sense of obligation to perfect strangers.

Maybe it’s okay to trust my intuition when things don’t add up and I feel someone isn’t being honest with me.

And maybe I’ll try appreciating myself more for carefully selecting the people with whom I’d like to build long-lasting friendships from here on out, instead of chastising myself for being cautious.

Because I want and need to get back to offering myself to this world, and maybe it’s finally safe for me to believe I CAN manage my new mental and physical limits, and get back to living within them on my own terms, instead of constantly apologizing for not being able to meet everyone else’s.

Responsibility

For the longest time I’ve been trying to find the right way to interact with others, as a survivor of all types of abuse. For example I used to think it was normal to build a relationship with someone emotionally unavailable, because in my formative years it was very dangerous to have my own needs, emotional or otherwise. What better way to emulate not having your needs acknowledged than to pursue someone who would never acknowledge them?

I think that’s another reason me being unable to be there for anyone during my recent downward spiral, affected me so drastically. It’s no secret I live with obsessive compulsive disorder, which constantly tells you that you’re an awful creature who’s going to end up hurting everyone and then tries to convince you secretly like hurting people. (Oh, did you think OCD was just hand washing?) So while all my mental illnesses were jacked up on steroids, OCD really latched onto the idea that by taking time for myself to heal, I was the abuser, now. It makes no rational sense, but such is disorder. Anyway.

Narcissistic types are drawn to people like this, and those struggling with codependency: people-pleasers with an addiction to approval and/or relationships, who feel their only value lies in being who or what someone else wants. I’ve been a recovered codependent for years now after at least ten years of treatment, but I still attract narcissists because they are also drawn to compassionate, empathetic people who enjoy listening to and validating others; you know, people who will give them their “supply” of attention.

Sometimes it’s still hard to trust myself about this, initially. When I start to like a person I immediately think, “What if I only like them because subconsciously they’re exhibiting behaviors that mimic those of the pathological human beings I grew up with, and this is just another quick dead end?” That does happen to me quite a bit, but that’s the chance any of us take in attempting a new relationship. Now, I can spot the red flags relatively quickly and be on my merry way, instead of wasting years in unfulfilling one-sided relationships that I unfortunately tolerated.

When things aren’t working out in your relationships, you have to ask yourself: Which patterns do I keep repeating, and what is my role in it? What are you putting up with that you probably shouldn’t? What do you need yet aren’t actually requiring of anyone? To put it bluntly, what aren’t you requiring of yourself?

It’s uncomfortable being around those who don’t have empathy, but if I see the red flags and still keep them in my life, I’m just as much responsibile as they are, for the pain that comes from being around them. You know the Maya Angelou quote by now: “When people show you who they are, believe them, the first time.”

It’s painful when others don’t want to keep in touch with you unless you’re the one bridging the gap, but if you’re always the one meeting everyone else on their terms, you will eventually discover some friendships existed ONLY because you were meeting them on their terms.

And it’s jarring when people pop back into your life out of no where feigning interest in your well-being, only to disappear into the background again if you happen to be in a rough patch. But I’m the one who has to look that dead in the face and decide either “Yes, I’m okay with this person only being in my life in this superficial way,” or “No, I’m absolutely NOT okay with opening my life up to people who only show interest in being spectators, not friends.”

In other words, my dears, there comes a point in your healing from abuse where you understand you are no longer a passive victim but an active participant in the way your life and relationships are unfolding. When you know better you do better, etc. Victims don’t have any responsibility for their situation; that’s why they are a victim. This means they don’t have any power, either. That’s also why they are a victim. We may have been made victims in the past by predators of all varieties, but now, we are transitioning to survivors, which means we not only get to take responsibility for our healing, but we also have the privilege of taking responsibility for whatever new relationships we build along the way. We’ll make lots of mistakes, but don’t worry: Mistakes are just a natural part of burning through toxic bridges and outdated ways of existing, so that the fresh new ground underneath–fertile, healthy foundation–can finally be revealed.

Strength

I am a creature of many strengths, but I must regularly take inventory that I haven’t surrounded myself with people incapable of showing love. I have to remember that with my gifts of knowing how to make people feel heard, accepted, and appreciated, comes the extra need to protect those gifts from those who just want to take advantage.

I finally trust myself now to not be afraid of my own boundaries or the reactions of others once I set them. I finally see that it’s not my fault I attract predators, that boundaries are okay, and FOR ONCE–even if it’s only this very moment that I type this–I DO NOT FEEL GUILTY. It’s one thing to think these things and live by them just on their virtue, but now I actually FEEL this truth; the gentle power and mutual respect that lies within every human’s right to set healthy emotional boundaries.

The fact that anyone gets confronted with another’s healthy boundary and then runs away, is just a tell-tale sign they don’t like being told “no.” And I’ve realized that if someone is too weak to hear my “no,” they will never be able to handle my “yes.” They will never be able to handle me, at all. I am a force to be reckoned with, and I need to start surrounding myself with other strong, loving people who can handle everything I am. Sure I have difficult patches, but everyone does, and OCD be damned, that doesn’t make me a monster. I need more people in my life who know their worth, who recognize their resilience, who can hold their own, and who see boundaries as a sign of another healthy individual.

You see, narcissists can’t handle being around strong people. That’s why the moment you show them you have a backbone–that you can say “no,” that you aren’t afraid to speak up for your needs–they find another target or lash out, because they know if you’re not looking for others’ approval they don’t have a leg to stand on when it comes to trying to manipulate you. You can’t be controlled by fear, obligation, guilt, or them playing the victim by being offended. There’s certainly a large gradient between “immature” to “narcissist” and then further down the line to “psychopath,” but I am DONE surrounding myself with these types. Any of them. All of them. I’ve had enough to last me twelve incarnations. For all I know it’s already BEEN twelve incarnations of me trying to do exactly what I’m doing right now: Learning day by day, month by month, year by year how to keep energetic vampires out of my life.

Recovery

I learned I do have multiple sclerosis. More specifically, the official diagnosis as of right now is “Clinically Isolated Syndrome,” one of the MS disease courses, which can present with or without optic neuritis; mine presented with, hence those particular symptoms. There’s less than a 15% chance I won’t have another attack, and a 95% chance this IS caused by my untreated neuroborreliosis (Lyme disease). This isn’t my first attack, or even my first documented attack, but since the last one (that they found by accident while I was hospitalized) was attributed to “post-infectious demyelination” or “atypical MS,” and most doctors hold the belief that neuroborreliosis and multiple sclerosis are not related, the “official” diagnosis–clinically isolated syndrome, atypical MS, relapse-remitting MS, neuroborreliosis–will change depending on which doctor I see and their level of understanding my history.

I am now mostly recovered from this most recent attack, and my ophthalmologist confirmed last week there has been NO permanent damage to my optic nerves! Also over the last couple of months, I’ve successfully been able to manage my problem of becoming too easily overstimulated, and I’ve been learning to identify the tiny things that precipitate a shutdown. For example I’m able now to share with people that I need to retreat, before I need to retreat, before I feel forced to disappear without any warning at all.

I’m also significantly better cognitively, after a short course of antibiotics for some random infection back in March. Maybe Lyme or Mycoplasma is playing a role, or it’s the PANS/PANDAS–an autoimmune disease that first presents in childhood which causes my body to attack my own brain when I’m battling any infection–or it could be related to the MS and its own inflammatory process in my nervous system. Or some combination of all of it, who knows. But! What I do know, is that I knew I knew I KNEW this wasn’t just something I was doing to avoid life!!

After finally coming out of my extended mental and physical relapse, after seeing the results of my lumbar puncture, after getting the diagnoses from my neurologist and ophthalmologists, and feeling my profound improvement after antibiotics, I feel… It’s as if I can trust myself again, because it gave me solid proof that my brain really was significantly altered, and it had very little to do with me “choosing” to isolate. I isolated because my brain was trying to process trauma, while being inflamed by lots of extra immune cells, while trying to prevent neurodegeneration and/or blindness, while fighting pathogens literally designed to spiral into my brain tissue, AND I have an autoimmune disease that makes these processes not only cause new mental illness but exacerbate all the preexisting ones. It makes perfect sense why I was unable to function normally or converse at any length.

I spent months rationalizing everything to the end point that I must just be inherently careless and awful. And I had started to believe it. Now I know better.

And if it happens again, instead of being terrified that I’ll lose everyone I love, I will know what steps to take to attempt treating the symptoms, AND feel more confident that I can share with whomever happens to be present that this is literally a symptom of disease, not just maladaptive behavior of my personal choosing. Between that and having unlearned the unproductive coping mechanisms I tried along the way, I have so much more faith that I will be able to deal with whatever happens…WITHOUT believing the guilt.

As I think my writing showed, I was making a lot of progress, and finding significant healing, until the flood happened… I feel back on track now.

Burning Women

Thank you Lucy, for teaching me and millions of other women that the energy in I’ve Had Enough doesn’t automatically have to be feared, especially for those of us who’d never seen it used correctly:

“In the heroine’s journey we realise that the dragon lies not in a far-off land, but curled within. And so we are called inwards. Into the dark cave of our unconscious. …

“This power is mine. I have come to claim it.” Repeating it until you, and the dragon, know it for truth. …

And suddenly the danger is gone. No fight necessary. That dragon had sat on your power for so long it had come to believe it was its own. You had spent so many years listening to the myths of the dragon, hearing him growl within, you got so scared of these stories, that you never thought to come and meet him for yourself. The dragon never was your enemy. The treasure never was his. It’s yours. It always was. All he was doing was waiting for you to claim it, protecting it from those who would steal or misuse it. He knew his job was to protect it until you were able to care for it as fiercely as he. Until you knew yourself as its rightful owner. Until this great wealth would be used wisely, not to do damage to yourself or others. Until you were learned enough in the ways of the world not to squander it or give it away. That was his sacred role, as your greatest ally and protector. …

[W]e are brought up to hand over our power, to let others take care of it, and ourselves, in exchange for us taking care of them, emotionally, physically and spiritually. It is a heavy burden, one usually done unconsciously, and yet expected culturally. A woman who is not willing to engage in this exchange is usually shamed as selfish and immature. But it is an exchange. So as Burning Women we make a new deal: I take back my power, and I learn to take responsibility for myself…and you in return take responsibility for yourself. We may share ourselves and our lives, experience deep love, care, intimacy and connection, but we are each the keeper of our own power. This is the move from co-dependency — the model engendered by our culture — into independence. Intimacy, penetration and sharing through choice, and consent, not obligation.”

Burning Woman

Thank you Marianne Williamson for also shining the Light on this topic with one of my favourite quotes from you:

“Your playing small does not serve the world. There is nothing enlightened about shrinking so that other people won’t feel insecure around you.”

A Return to Love: Reflections on the Principles of “A Course in Miracles”

And thank you Roshi Joan Halifax, for eloquently explaining the value of anger–again, especially for those of us who’d never seen that used correctly, either–when you spoke these words:

“I think one has to understand anger in perspective. Anger, for one thing, has within it the seed of wisdom associated with clarity, with discernment. If you cut the value of anger out of your experience, in a way you’re taking some of the structure that allows us to see clearly into things as they are. So the seed of wisdom in anger is discernment. That’s the first thing. The second thing is, our anger toward the experience of disempowerment that is going on… We should be angry. And that sense of moral outrage, in other words the violation of equity. . .gives us the arousal level necessary to mobilize ourselves into action.

“And it’s essential that we act. We can’t just sit there, gaze at our navel, and say it’s all love.

“Love does not mean that we are passive in the face of harm. I think Martin Luther King was clear about the relationship between love and justice. Anything that stands in the way of love is unjust. The absence of justice points to the absence of love. So I don’t separate love and justice in this regard. I see them as intimately intertwined.”

— Be Here Now Network: Mindrolling Ep. 183 – “The Integration of Justice and Love”

Until next time,

Kit


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Facing My Worst Fears On Social Media: Am I Really So Terrible?

“You own everything that happened to you. Tell your stories. If people wanted you to write warmly about them, they should have behaved better.” ― Anne Lamott, Bird by Bird: Some Instructions on Writing and Life

Short answer: No. No I’m not.

Reasons I almost didn’t write this:

Because of a pathological and unwanted sense of obligation to protect others’ public image, especially if it involved abusive and/or shameful behaviour, even more so if it was directed specifically at me. Because of decades of being made to feel that it was never their behaviour that was shameful but rather my speaking about it that was the problem. Because of decades of spiritual abuse that, also, mostly condemned those who spoke about wrongdoings instead of the wrong behaviours themselves. Because I was programmed to have emotional loyalty to people no matter how they acted or treated me. Because old habits die hard.

Reasons I absolutely AM writing this:

Because the very act of publishing this is an act of healing. Because the God I actually believe in supports those who speak the truth, not accuses them of being “unspiritual” if their truths make others uncomfortable. And because I can assure myself that no names or identifying characteristics will be mentioned, nor are they even remotely likely to ever read this.

So here’s something I’m actually excited to write about… Last month, or maybe the month before, I’m not sure but right before I returned to social media because I had healed enough to start responding to messages and e-mails once again… Some time ago, I faced my very worst fears in social media and relationships:

Someone not only misunderstood me, but thought the very worst of me, used my benign actions to justify their irrational belief that I was of ‘bad character,’ insinuated that I was being selfish with my time, and looked at things I’d written or shared on social media with an authentic energy and interpreted it instead as directly passive aggressive or malicious against them. Then they said what they thought they needed to say (I’m being generous, here), and blocked me everywhere, before getting to see the physical proof that they were actually 10000% wrong in their assumptions. Not a single conversation about what had been bothering them. Just accusation, character assassination, gone.

They took some of my worst fears, (1) that someone would use my words against me, (2) that I should never speak because people will just misinterpret it to mean something completely different and probably malevolent, (3) that someone would stalk things I did or said on social media to concoct a narrative in which they assume the worst of me, (4) that someone would guilt-trip me over the time I needed for self-care and (5) respond to it with accusations of selfishness and/or view it as an ill-conceived personal attack on them, and (6) that any or all of it would be used to justify abuse, character assassination, and/or emotional abandonment, and rolled it alllll into one. big. grand. gesture.

And guess what. I immediately recognized that it was completely unjustified.

I refused to accept blame for things I hadn’t done, because I knew none of it was true.

I didn’t go into hours, weeks, or months of self-abuse thinking I possibly deserved any of it.

And I survived.

Not only did I survive, but I even assertively stood up for myself (before they bailed, at least).

And, as a bonus, I didn’t move to contempt. Hurt over being thought of in such a way by someone I’d started to trust, yes; anger at being mistreated (a good sign for someone who’d always been punished for expressing anger), yes; disappointment and confusion, yes. But not contempt, not hatred, not a sudden need for self-protection by going on the offense, and no thoughts of “what a terrible person you are for doing all this.” They’re not. I know why they did what they did even if they don’t understand it, themselves. I’ve been a version of them in my past, believe it or not, when I didn’t know the true depths of my mental illness. And because I have compassion for the situations in my life that caused me to behave irrationally with others, I can have compassion for the situations in their life which caused them to do this. (Plus I lived with an infection for 7 years that reliably turned my brain chemistry upside down every 5-6 days. But anyway.)

As Elizabeth Gilbert wrote in Big Magic, about a woman who’d read her book and imagined a narrative within it that wasn’t actually written: “Their reaction doesn’t belong to you.” I’m only responsible for what I put out, not how it passes through others’ personal filters, for better or worse. I know now that I don’t have to allow those “worst fears” to have power over me anymore, because I know I will not only survive should it happen again, but that I have healed so much in at least this area, that I won’t be sent into a spiral of self-loathing, automatically assuming I deserved it. I can’t even explain the pit “old me” would’ve had to crawl out of in the past, the way it would’ve stirred up abandonment depression and sincere beliefs of “maybe I am everything they think.”

I’m making tremendous progress this year.

This isn’t even counting what happened at the beginning of the year, when I warned people about someone who had copied and posted my work but changed the words around to reflect their own story and history. Instead of any “thanks for letting us know,” and despite me sending them the link to my piece, I was met mostly with people incredulously claiming it wasn’t mine, and how dare I say such things. Ha! So part of my path this year seems to be learning to not be affected by blame or praise. But especially the blame.

“How equanimous are you when people express their views of liking or not liking what you do? Do you take it personally or understand they are simply expressing their own bias? Does praise or blame disturb your balance?”¹ “As the Buddha said, pleasure and pain, gain and loss, praise and blame, fame and disrepute constantly arise and pass away, beyond our control.” He said, “There is always blame in this world. If you say too much, some people will blame you. If you say a little bit, some people will blame you. If you say nothing at all, some people will blame you.”²

I think I’m doing pretty good so far. Don’t you think?

On second thought, don’t respond to that.


I cannot live my life letting fear of what someone might misinterpret decide what I do or don’t do, what I say or don’t say, what I share or don’t share. I’ve lived most of my life walking on eggshells for everyone else, and I’ll be damned if I’m going to spend the remainder of my life doing it, too.

Even now as I write and edit, I feel fear over what others will think about this. Maybe that won’t ever go away. But it doesn’t have to: I’m going to write, speak, share, and live, regardless.

I’m happy about all the progress I’ve made, even if it took something painful to help me realize it.


Takeaways for others, I hope:

  • I didn’t include this part of things, but make sure you’re not accusing someone of something that may actually be partly or entirely due to a technological glitch.
  • Don’t take your thoughts so seriously. Some meditation practices help us contemplate situations from the perspective of, “Do I really know this is what’s happening?” Much of the time, we truly don’t. This can help us find that place of spaciousness from which we can choose to respond instead of react out of past hurts or abuse.
  • If you have mental illness, try to remember your sick brain may colour your perspective of what’s going on. Although not everyone has the luxury of being able to find that spaciousness, not even myself, at all times; the key word is “try.”
  • Likewise, remember if someone has a disease affecting their brain, there’s very little chance it won’t also affect their thoughts, as well as the way they process information. Have compassion.

Above all, remember everyone is doing the best they can with what they have to work with, and for goodness sake, try to think the best of each other.

"To love somebody is to let them be who they are and do what they have to do."

a rainbow at night


1. Focused and Fearless: A Meditator’s Guide to States of Deep Joy, Calm, and Clarity, by Shaila Catherine, 2002
2. http://www.dharmanet.org/samples/bv4a.htm

A Very Special Way of Life

© a rainbow at night

I’m not used to living this kind of life. It’s so different from what I was supposed to have.

I barely see anyone. I barely go anywhere. I have no local friends and I think I’ve permanently lost my ability to drive. Disease puts me in bed an average of 23 hours per day, or at least to somewhere I can lean back and my legs are propped up to ensure proper circulation. When you tell people these things, they immediately pity you and interpret it as a bad kind of life, or a sad kind of life. “Oh you poor thing…” But I feel neither sad nor pitiful. And if you knew how much worse things actually could have been, you’d understand that only 23 hours in bed is a fucking miracle.

What I actually feel is peace, and I’m content and I’m happy and this fact truly boggles my mind.

This isn’t complacency. I know intimately the “lurking dangers” of this life and never have my head in the clouds–it’s not my style. Just last month I tried an herb that had once helped me for seven years; it failed. The month before I temporarily stopped a medicine I was on to see if it really makes a difference; it does. Two weeks ago I upped another med because one of my symptoms has worsened. And I’m only narrowly avoiding having to start a new neuropathy medication. Meanwhile, with much help I’ve planted spider lilies and a peach tree as investments in the future, bought a chaise lounge for my back porch so I can be outside more, have written and advocated a lot (obviously), put new wind-chimes directly outside my bedroom window, made reservations for a four-day beach vacation with my family next month before it gets too hot, because four days means at least one of those days I’ll be able to actually see the beach…

And I also have neurologist, immunologist, pain management, primary care, and endocrinologist appointments, although I struggle immensely with getting to them. As well as four semi-important blood tests to do that will probably never actually get done because I’m sorry, it is just not possible that someone as ill as myself can awaken and get up four hours earlier than usual without any caffeine, any pain medication, or any food, while having autonomic neuropathy, suicide-levels of pain, and pre-diabetes thanks to polycystic ovarian syndrome…

No, I’m not complacent.

There’s no wool over my eyes so that I can smile in the opposite direction. I’ve spent enough of my time in emergency rooms and hospitals and grieving the deaths of others from my same diseases that a bubble of blind optimism offers me no protection. Nor have I given my resignation to life, although I know I’ve exhausted my treatment options. Even if this was as good as it ever got, I’ve done enough living for many lifetimes, I think. And when the theatre season picks up next month I do have plans to go and to see. There’s a choir, another chamber orchestra, another beach, another ballet, all evenly spaced so that I’ll have time to rest then go then rest again to ensure my attendance at the next.

But for the past four months I’ve been what can only be described as a recluse, and I am so perfectly fine with it, that my peaceful surrender actually gave me pause. I had to stop and make sure nothing was wrong with me, that I wasn’t secretly anxious or scared or complacent or depressed or suffering a lack of motivation, because in my naiveté I thought those were the only reasons anyone could be in their own company for as long as I have and not crave “more.” As it turns out, my definition of “more” has changed dramatically, and being peaceful this consistently just isn’t something I’m used to, so I’ll sit with it for a while until I understand it fully, like Buddha under the Bodhi tree.

Most of my life has been spent in some form of chaos. Even growing up, I had no idea what it meant to relax, although ironically I never put it together that such a hellish environment was the very definition of stress, because that fact was so vehemently denied by the chaos-makers in favor of the illusion of happiness. It occurred to me later in life that this may be why I only accept authenticity and facing life head-on: I know what it feels like to be surrounded by fake emotions and others’ delusions instead of reality, and I never, ever want to live that way again. Life is much less frightening when you face it, trust me. There is safety in the truth.

Even though this is the kind of life that most would consider boring–especially my fellow Americans–I am so happy, and my quiet existence fills me with such joy. After living chaotically for such a long time, there’s now a sweet comfort in my predictable routines, an intense pleasure to be found in what most call mundane. The paradox is that I’m faced with allowing myself this happiness.

Confronted with better alternatives to old toxic patterns, there’s a bridge I must cross every time solutions seem too easy, too good to be true. I used to feel guilty for feeling calm amongst awful situations that were tearing other people apart, situations that in fact used to tear me apart, also. You think I just woke up like this one day? Oh, definitely not.

I still remember where I was the first time I noticed everyone around me was crumbling under a crisis, yet I, instead, was overcome with internal peace, finally aware that I could still not only feel calm, but I could actually be the calm, even as I acknowledged the situation’s dark potential. The difficult part was no longer finding that quiet internal space, but allowing myself to be as okay as I sincerely felt, and understanding it didn’t mean I was any less concerned than everyone else. Unfortunately, that’s how everyone else interpreted it even as I openly expressed otherwise, but you can’t please everyone.

I’m learning to be okay with this type of stability.

People do everything they do because they want to be happy, feel safe, have an impact on the world around them, and live in harmony. I used to think there was only one way for me to get there.

Thank goodness I was wrong.

a rainbow at night


See also:

“Of Course It’s Easy For YOU” Syndrome

© a rainbow at night

“Education is an admirable thing, but it is well to remember from time to time that nothing that is worth knowing can be taught.” (Oscar Wilde)

So how do you respond when someone looks at something you’ve worked your ass off for and thinks you only got it because the odds just fell into your favor? How do you process this inherent invalidation of all your struggles, and what does it mean about the person who said it?

When I look back at all that I’ve done over the past year, it really blows my mind. And I did it all because I first made the choice to live and enjoy within the confines of my circumstances, just like I did last year. I set in my mind what I wanted, made whatever arrangements I could on my own to help them manifest, and let the Universe work out the rest based on what I needed to experience.

If I wasn’t supposed to have something yet (or at all), well it wouldn’t have been from my lack of trying.

None of it would have happened if I just blindly accepted the identity of “sick person” that most family members and even doctors wanted to give me; that for too many years I gave to myself, as well. With this identity comes the belief that you must wait until you’re better before you can enjoy your life, whereas nothing could be further from the truth, especially when it comes to long-term or chronic illness.

But in general people don’t want to hear that. Some don’t even want to hear about all that I was able to experience (although I’ve already written about my past endeavors-while-sick), and that’s okay. I know the things I lived, I don’t need further documentation. And because it involved a lot of travel, I don’t imagine they’d be all that interesting to anyone else, anyway, in the same way slide shows of your vacations need to be ambushed upon unsuspecting house guests if you plan to share them.

I might be a little biased on this next part, due to people continuously asking my advice on how to get something I have (emotional freedom and the like, usually), yet being very unwilling to actually do anything that’s even mildly uncomfortable in order to get it. Then they turn around and play this card:

They wish something in their life was as “easy” as I “seem to have it.”

More than a few people have said that to me within a week’s time, and I couldn’t help but laugh.

Because nothing–absolutely nothing–has come easy for me. No one comes to acquire the traits that make life’s difficulties seem “easy,” because life actually WAS easy. No, they arise from having had so much hardship that you eventually learned coping mechanisms to deal with them. Even still, what one might perceive as my ease of living is actually my choice to experience it as such, and I’ve crossed over mountains to get to this place from where I was, because I was not raised to be peaceful. (Please read that. Okay?)

But people only hear what they want to hear, and until they’re ready to change, they resort to, Of course YOU did it, you [insert excuse for why it’s easier for everyone else besides them]. Or else they want to be spoon-fed the exact steps they need to take, as to (1) only do and invest as much work as is necessary and (2) eliminate the natural consequence of following less-strictly-defined steps: fear and anxiety.

This “Of Course It’s Easy For You” Syndrome is also troubling because it’s an unconscious confession of (more fear) self-sabotage. This is inventing excuses for why you can’t have what someone else has, to convince yourself not to even try. It’s giving yourself an “out” based on an external factor out of your control, or something internal you perceive yourself not to have but which someone else does, helping substantiate your belief that the situation is out of your hands.

But if you want things to be easier, it doesn’t start with changing your circumstances, because you can only manipulate your circumstances to the extent that you realize what is really yours to control.

And that all starts with manipulating you.

Society tells us from the day we step outside that your life is supposed to be about getting from point A to point B, and to pass your days filling in the rest with your to-do list of how to accomplish that. But that’s incorrect. Our lives aren’t defined by only the big decisions, goals, and occurrences. However much impact they have on the rest of our days, those major game-changers are few and far between.

Life is mostly made up of all the little moments you encounter between those perceived checkpoints. It’s all the smaller things you do day in, and day out, that make up the most of your life and help determine your happiness. You can have a radically different life without changing a single external circumstance, because the only common denominator in your entire existence, is You. In other words:

When it comes to enjoying your life and finding peace, it has nothing to do with someone else having something you don’t.

And I guess that’s why it doesn’t matter too much to me anymore to explain all that I’ve been able to do, even while sick. Although reaching those goals was inexplicably amazing, it’s the process of living and thinking that helped me manifest them at all, which holds the most value in the long run. And that’s the part I really want to share with this blog.

a rainbow at night

There’s This Friend I Have…

National AIDS Memorial Grove in San Francisco © a rainbow at night

Update: This post has been featured on ProHealth: Thank you, Julie and Rich!


I make sure they take their medicine on time and I’ve helped them figure out what’s actually helpful so they won’t have to take any more than necessary. I’ve helped them find interesting pill cases to take off the mental stress of staring at a dozen pill bottles always by their bed, which I know they have to reach for multiple times a day. I listen to the extensive list of doctors everyone wants them to see, and help them figure out which appointments are really important and suggest they prioritize those above the rest. I’ve called and written for them so they can get any procedure possible done from home, so they won’t have to deal with the physical exhaustion of leaving the house “just” for uncomfortable treatments, or the mental burden of being surrounded by a medical establishment that has traumatized them over the years.

I’ve helped them find clothes that were of soft fabric to help with neuropathy; helped strategize their budget to find money for important purchases that make their life easier, like an overbed desk, a smartphone to stay connected to friends that only exist outside their city, and a stereo that uses bluetooth so they can listen to anything instantly using their phone as the remote. I’ve introduced them to mindfulness and stressed how important it is to take care of their inner world, almost more so than their outer body, because they can’t always control their circumstances, their disease, or natural physical changes, but they can always decide how to think about them.

I’ve helped them make extremely difficult decisions about their treatment and supported them endlessly in whatever they had to choose, trusting that only they know what’s right for them, and that no matter what, it will be the best for them and subsequently everyone around them, including me. I’ve shared with them any and all of my collective wisdom to help make their travels on this earth a little easier, hopefully none more difficult than they must be. And I’ve done all this and more because I love them and want their life to be the best possible. I’m already so proud of them, for things sometimes I wonder if they even realize.

I’m proud of them for getting out of bed whenever they have the option. I’m proud of them for not giving up on life after it turned out so drastically different from their plans. I’m proud of them for continuing to try new things whenever they have the capacity, and for acknowledging, accepting, and loving themselves whenever they DON’T have it. I’m proud of them for taking care of their body even though that can be a full-time job in itself, and they’re disabled. I’m proud of them for continuing to do the things they love, even though they had to learn to participate in new ways; I think that’s so amazing. I’m proud of them for reaching out to others even when not many reached out to them. And I’m very proud of them for letting go of the ones who never reached out to them, because I’ve seen that it left them more energy to spend on the people who truly cherish them. I’m proud of them for not settling for anything less than authenticity.

And once the time comes–because it will–for them to move forward to the next phase of their existence? Don’t be fooled by the media or even friends and family: They’re not losing any battle against disease. They’ll simply be finished here.

To paraphrase Eckhart Tolle: You don’t “have” a life, you ARE life. They are Life. I am Life. You are Life Itself, and you cannot lose something that you are. And the friend I mentioned, is myself.

a rainbow at night

Freedom to write…just not on Twitter.

After spending a week considering a one month break from Twitter (and other social media outlets), I “stumbled across” something I wrote two years ago on my personal blog when I first tried this. (I say “I stumbled upon,” but I do not believe in coincidence.) Almost exactly like now, I had just relapsed (the one that necessitated I stop treatment) and found myself needing to prioritize my energy in order to adapt to my new normal. I’m posting it here partially as a testament to my growth, partially to explain my current social media absence using words I’ve already written (no spoons!), and partially that others might identify with any of the struggles I had back then. But trust me, this is NOT an anti-technology rant!


Tuesday, 18th December, 2012

I feel a need to be more free in my writing and not always have it dictated by a clear “purpose.” I mean, obviously there is always an intent, but this All or Nothing mindset that has still somehow managed to stick onto my creative expressions is getting me no where.

I fear having a bunch of unfinished projects because in my brain I’ve associated that with something “bad.” It’s “bad” to not finish things, and it’s “bad” to start something new before you finish what you’ve already begun. And perhaps for many things, even most things, that’s true. How will you see what you can do if you don’t see anything through? But this isn’t a major life decision–it’s expression. The All or Nothing mindset was drilled into me since I was a child, but it’s time to evaluate why I think the way I think. Do I really feel that way, or do I think that because someone taught it to me and I never stopped to question it, question them? No, I get to choose which rules I live by, which ones will serve me, and my common sense says there are exceptions to everything.

If there is an option between writing nothing because you cannot write everything, or writing a little even if it might take a while to make sense… I don’t want my brain to implode from a lack of expression.

On that thread, I really am more focused and thinking in more complete thoughts since being off of Twitter. I didn’t tell many about that experiment and I wasn’t blogging again yet, so I’ll recap. I read this blog article–“I quit Twitter for a month and it completely changed my thinking about mostly everything“–and it struck me because of this section:

“I used to believe that time was the most important thing I have, but I’ve come to believe differently. The single most valuable resource I have is uninterrupted thought.
“I’ve realized how Twitter has made me break up my thoughts into tiny, incomplete, pieces-lots of hanging ideas, lots of incomplete relationships, punctuated by all manner of hanging threads and half-forked paths. I am perfectly fine with unfinished work-in fact, I doubt I’ll ever be a better finisher than I am a starter. But I’ve found that my greatest joy, deepest peace, and most valuable contributions come from intentionally choosing where to let my focus rest.”

After reading the potential for this social networking site to do that to one’s psyche, combined with the fact that I’d recently been putting thought into what purpose Twitter served me (something I feel is important to do from time to time; weed out what doesn’t bring you where you want to go), I had to try it for myself.

It’s barely been two weeks since I told everyone on Twitter I’d be leaving until the new year, and I haven’t tweeted since…save the automated ones that post from my health blog. I have logged in occasionally to see if there were any mentions or replies, but no. Is that unusual for someone with almost 200 followers that are otherwise pretty chatty?

One major part of Adam’s Twitter ramble was how much he CARED, and how the site was draining him emotionally because he couldn’t really do anything about the bits of information that were posted. I can thoroughly relate to this because my main use of Twitter was participating in the support system us “spoonies” formed. There are lots of tweets about suffering. (It was easier to release the thought there, where people at least understood, instead of “bothering” friends or making Facebook posts.) So sure, he wanted to do something for people, but–much like myself–he liked to show sincere care and do something real to help, and how can you do that for the hundreds of little tidbits posted? Truly, they leave more questions than anything. “Twitter is outsourced schizophrenia.”

And one major facet of people like us, the “carers,” is that.. we care a whole hell of a lot more than most, meaning we get close to people and form connections with them easier than most. This is never clearer to me than when I leave behind any social networking platform I’ve ever used: I want to take people with me, but they don’t care where I go. I want to keep in communication with those I’ve formed bonds with so I leave e-mail addresses or new account locations, but they never contact me again.

And it is what it is, truly. I realize people are meant to come in and out of others’ lives. But the fact is I end up caring about others far more than they care about me, which–in Twitterland, especially–means I extend energy toward irreconcilable situations and incomplete relationships. This is not something that is conducive to what I want, need, and am entitled to as a human being. (Maybe, too, I’m just from a different time, before the internet when people called and wrote and relationships weren’t so throw-away.)

And my thoughts, it’s like they all had their potential to become something, but the goal really did become fitting them into character limits instead of expanding them. It filled the temporary niche for an expressed thought, but then it died there. Did I explore any introspection or make blog posts when I was on Twitter? No. (Of course there were other reasons I haven’t been blogging on this account, but.) It’s honestly kind of amazing, when you think about it.

I do miss Twitter, though, for when I REALLY DO have tiny incomplete thoughts. I must have been using it wrong, something it wasn’t designed for, at least not for people like me who are creatures of many words. So I call this experiment a success! More useful knowledge to bring with me into the new year. I was never a Twitter addict, but when I return to it next year, I will not be checking it as much, I will know my limits when I start to become irrationally emotionally invested, and I will be more mindful to use it in a way that adds to my life.

I thought I had been doing that, but when I started to delete people, I felt like I was doing something wrong. I felt guilty pruning through the lists of users to leave only the ones that inspired me to be greater–a thought that, when I type it, seems absurd! As Adam wrote,

“Ultimately, I still *like* a lot of those people and like much of what they have to say. I don’t believe that restricting the people I follow to only the ones I agree with 1000% of the time is healthy.”

But if I cannot find a way to keep balance with it, it has to go until I can do so. As I always say, if you’re not going to use social media for what you want out of it, why is it in your life?

I knew the Universe had something to show me when it brought that article to me right when I was contemplating my relationship with Twitter. As Oprah would say it, I have learned to listen to the whispers before the bricks start flying!


I remember how well that one month break ultimately worked for me the last time, and reading this old post solidified my decision to do it again. I laughed at how, even in my old entry, I mentioned Adam’s post appearing right as I was contemplating a break. This time, my own old post came to me! The Universe always sends us what we need, if we pay attention. With my newly-limited energy, I need to focus. I don’t have spare energy to do it all anymore. The situation has changed, and I must change with it.

If it’s not bringing you where you want to be, let it go. “Let go or be dragged.”

a rainbow at night

Coping with Chronic Illness: Your Life Is Not Over.

[ estimated reading time: 4 mins 39 secs ]
Update: This post has been featured on The Mighty: Thank you guys!


I received a message asking for advice from a person who was new to chronic illness, having just found out they had late stage Lyme disease. In construing a reply, I came up with a bunch of things I wished someone had told me. For a good book to accompany you on this road, I once again recommend How To Be Sick.

The first thing I believe most people want to know when they get sick, is that their life isn’t over. You’re scared, and you think your life cannot possibly continue unless it continues on the path you were already on before the illness arrived. I offer you my compassion.

Things are going to change, but I assure you, your life isn’t over. I ask you to consider that it never even paused at all. Your plans might have changed, but life is still happening, which I’m sure is evident as you watch others continue their own plans while you are forced to reconsider yours. Reconstruct, don’t abandon. The ultimate goal of everything we do in life is happiness for ourselves and others, so that we can enjoy ourselves and our time with loved ones, and if you’re still here, your ability to do this has changed but isn’t gone.

In the documentary film Wake Up, the wonderful mystic Llewellyn Vaughan-Lee said to the struggling man who sought his help,

“I just see the divine within you struggling to make itself known to you, and taking you on a journey IT wants to go on…which may be not the journey YOU wanted to go on, your ego-self had in mind, but is the divine journey in you beginning to manifest.”

This really, really spoke to me on a core level, even though the film is not at all about illness. I don’t necessarily wholeheartedly believe that disease is predestined for a learning opportunity–illness and death are natural processes and not punishments–but I do believe the Universe can guide us through any situation so that it works out for our benefit. I think my spirit wants to get the most out of this hand it’s been dealt, and you might consider that yours does, as well. “What has awoken in you is not a passing phase.”

It’s okay to grieve the direction your life is no longer going. Just know there is more out there, and grieving is a part of joy. I repeat: Grieving is a part of joy. Don’t try to force yourself or your loved ones through the stages of grief faster than any of you can handle, and remember the process doesn’t follow a straight line.

You are going to be okay.

At first, you may be entirely focused on cure cure cure. You may seek validation that your symptoms are real and try to prove it to others through research, because the people in your life may not believe you, especially if your illness is invisible. If you eventually find a cure to be unavailable, you may spend long periods of time–weeks, months, or longer–trying to find a treatment to slow down your disease; your loved ones might go through this, as well. If that doesn’t work out, still, your life is not over.

Buy yourself nice things. Don’t let anyone tell you that you don’t deserve nice things just because you’re sick or have to go on disability; this is the only life you have. Don’t wait to begin your life again “when [this or that] happens” because your life is already happening right now. Remember that the future is made from nothing more than present moments like these, and

“If the present moment has peace and joy and happiness, then the future will have it also.” (Thich Nhat Hanh)

Don’t let your surroundings be drab; make sure they make you feel good, mentally and emotionally. Get comfortable clothes. You probably spend more time in bed than anyone you know, so that needs to be comfortable, too. Invest in a pill organizer that doesn’t psychologically drain you. Make pain management a priority because uncontrolled pain is its own disease.

Learn to gracefully allow people to leave your life, but don’t close your heart when they go: You’ll need that open space for better people to walk into.

Be compassionate with people who don’t believe you. Remind yourself that if they truly knew how much you were really suffering, they would never treat you that way.

It’s okay to not treat your disease, because many advanced cases are incurable. It’s okay to treat your disease by any means necessary, also. If you choose one at one point, it’s okay to change your mind. It’s okay to treat some aspects of your illness and not others. You may not have any control over the disease, but don’t let anyone–not even yourself–convince you that you’re not in control of which treatments happen to your body.

There are different groups in what many call the “spoonie” community, and you’re going to find where you belong. You’ll also probably change roles many times. There are the advocates; the emotional caregivers; the writers and bloggers; the medical advisers, some of whom are actual physicians; the philosophers…

For the people who continue to advocate and fight for advancements in how to help us, including medically, thank you, for you play a part in us being heard. For those who spend their energy enhancing their mental and/or spiritual growth, thank you, for you teach us how to live day-to-day. For those who help us navigate the scientific waters and avoid snake oil salesman, thank you, for you help us use our time and money wisely in a world where physicians may not even exist to help, yet. We are all in this together.

a rainbow at night


Relevant posts from this article:

How Did It Get Like This? I Was Not Raised to Be Peaceful.

© a rainbow at night

I had an unexpected moment of crying earlier, after realizing I had gone back to some old, unhelpful habits, but what actually brought me to tears wasn’t the slip-up. It was the sudden, immense gratitude I felt over having become this person I am today, who now not only has the tools to change and live better, but even the awareness to notice when they’ve regressed. We’re talking about me, this woman who was raised with a psychological and spiritual toolbox that could only ever bring about mental and emotional distress, whose relationship with almost everything and everyone was accompanied by intense suffering… Simply put: I was not raised to be peaceful.

I was raised to judge, be cynical, feel vengeful, hold grudges, be elitist, a perfectionist, and to never relax. No one wants to suffer like this, but we can only do what we know at that time. I am a completely different human being, now, although like anyone, I can slide back into old thoughts, habits, and behaviors when something or someone triggers my protective defenses, when I react instead of respond. But now I have enough awareness to pause, realize when I’m not happy, and decide what I can do about it. I now sit with the knowledge that I am worth my own happiness; that I’m worth investing in myself and my healing in all ways; that it’s okay not to be like everyone else around you; and it’s okay to be the first to change.

Unfortunately, what often happens when you’re the first to make positive change within your circle–whether it’s your friends, family, or family of origin–is the very people you thought would be happiest for you actually ostracize you the most. Their egos feel threatened by you trying to become more or become better, because it makes them feel worse about the damaging behaviors in which they engage in their lives. They lash out and try to stop you from being true to yourself so they don’t have to deal with their own feelings of inadequacy. It’s heartbreaking.


I remember when this path first started, for me. Don’t laugh, but my internet broke for two full weeks, at a time when I had a craving for knowledge, for “something.” So I watched two weeks worth of spiritual programming on my television–perusing channels I didn’t even know I was paying for–and found all sorts of things. I had the realization that there were many other paths to peace than the one I inherited from birth, Southern Baptist Christianity, which teaches we’re inherently sinful from the moment of conception and that only Jesus can “save” us from their god’s eternal wrath. Meanwhile, Buddhists believe in original goodness, not original sin.

The next big step was ordering the Toni Bernhard’s book, How To Be Sick: A Buddhist-Inspired Guide for the Chronically Ill and Their Caregivers. Like Mara trying to mislead the Buddha, I could practically hear the voices of my family in my head as I tried to deprogram my former brainwashing:

Who are you to think you can do this? Who are you to think you have what it takes to find your own peace? Who are you to investigate what YOU want to know instead of trusting what you were taught? Who are you to take enlightenment into your own hands? Who are you to think you are even worth it?

The book gave me an introduction to meditation in the form of mindfulness, which was the perfect outlet for me, personally. I don’t enjoy visualization, and I don’t enjoy posing in awkward, painful positions just because they’re supposed to “take me higher.” But I did enjoy learning how to pause and pay attention to my life and what is happening RIGHT NOW, without a need to judge it. I desperately needed to learn how to do this. My life up until then was passing me by because I was never taught to find gratitude in the present moment; I was only taught to get to the next one, and almost all of my actions AND thoughts revolved around using time efficiently.

Underneath it all was the assumption that using time efficiently would equate to a life well lived, but all it actually did was equate to a life that I couldn’t remember living.

Why? Because if you’re always living for the instant gratification and self-congratulation of “efficiently” using the moments that follow, what happens to ones you’re already in? They’re ignored. Instead of living in your actual life, you’re living in your head about what you think could be happening next. How is the brain supposed to make memories out of your life if you only ever give awareness to what’s going on in your own mind? There was so much happening around me, but I was going through life asleep.

The-Time-Is-Now

There’s a saying, if you take care of the Now, the future will take care of itself, because the future is made up of nothing but present moments. Here’s an example, for those who don’t quite get how living in the next moment leads to a life forgotten. You could be reading this half-heartedly, picking up the remote or cellphone every few minutes, distracted, wondering what you have to do tomorrow, what you need to plan in order to make that happen… But is the time to plan for later, when you’re already doing something? You can pause, and realize what you’re doing right now. You may be lying down, or sitting. Your attention is on these words and how they might apply to your life. You may be sipping a drink, cool or warm. You may be comfortable, or uncomfortable. You might enjoy the colors on this page. You might take notice of your breath and realize it’s too quick and shallow with anxiety, and relax your body. Now what are you doing? You’re on the internet–connected to a system that is literally going to outer space and back to provide you with this very moment in time–reading an article. Who knew there was so much peace to be found right here? How has your experience changed since you began this paragraph?

Ironically, while writing this, I heard my mindfulness bell chime. It’s an app you can download for your mobile device (for Android or iOS) that you can set to periodically chime throughout the day, helping you remember to pause, breathe, and focus on what you’re doing in that moment. Toni Bernhard’s describes a method in here book of taking ten comfortable breaths while you focus on one sense at a time: What do you see? What do you currently smell? What do you currently feel in your body? What do you hear?

Is there a Mara in your life, or in your head, telling you that you don’t have what it takes to live a better, more present, enjoyable, peaceful life? Asking you, Who are you to think you can do this?

I leave you with the ever-beautiful words of Ralph Marston yet again, which gave me the courage to even write this blog entry:

“Start where you are, and do what you can. Make use of what you have, in the time available to you, and there’s much you can get done.

Don’t waste your time waiting for conditions to be perfect, for they will never be. Go ahead, with things as they are, and begin making real progress.

The place to aim is as high as you can imagine. Yet the place to start is right where you are.

Let go of any concerns about not having enough time, or money, resources or anything else. Focus instead on the great value and potential of what you do have and of what you can do right now.

See the real treasure that exists in your opportunity and ability to make good, effective use of this moment. Claim that treasure by going ahead and putting forth your very best effort.

Today is your day to achieve and to make your world a better place. Start where you are, and get yourself solidly on the way to wherever you wish to be.”

a rainbow at night

Creativity and the Fear of Being Forgotten

a piece I only previously attached to the bottom of one of my posts. quote by David Bate.

It was about seven months ago that I made a post begging the question, What all could you do if you just changed your expectations of how to do it? And I affirmed that I was bringing out my art supplies again, because I could still paint if I relaxed the restrictive expectations I put on myself of how it needed to be done.

And thus, over the course of two months, I made this watercolour painting.

Then last month, I had a major epiphany.

It started as a sort of existential crisis, seeing a different butterfly on Instagram which I immediately wanted to paint…until I thought about the actual process of doing so. Then I became very drained, and I couldn’t tell if I just didn’t like painting anymore, or maybe I was just really overwhelmed by all the work it would take. Those seemed the most probable reasons.

And yet the entire week prior, I’d been schooled by the Universe from every corner on the differences between who we once were and who we become. How we progress into completely different people, if we’re doing it right. Even the “us” of several years ago, we appear the same, but–to pull from an episode of How I Met Your Mother–it’s as if we are our own doppelgänger, after having changed so much.

I mulled over my mysterious lack of artistic enthusiasm all day, a bit thrown off at the idea that someone with so much talent might not want to “art” anymore. Do people really just stop being artists? How was it that I identified such a need to paint, yet all I felt was frustration? How was that even possible?

Then something happened that knocked me off my metaphorical feet.

There was a PBS special airing the ballet documentary Dancing at Jacob’s Pillow: Never Stand Still, and at the moment I caught it, they said something really profound about one of the men in the business.

Ted Shawn, toward the end of his life, wrote,

“It is a paradox that I, who have a strong desire for what will endure, and will be permanent, should have chosen the art form which leaves nothing but memories. And yet I am satisfied this is my medium, and my destiny.”

It was exactly what I needed to hear to tie together all my pondering of the past several days. The Universe had been preparing me to let go of who I was trying to force myself to be just because it’s who I’d always been, and embrace all that I was now. And in the moment I turned on the television, I was receiving a wake-up call.

Hearing that segment helped me recognize I wasn’t so much being an artist as I was clinging to the idea of being an artist, to escape a common human emotion.

I realized that I wanted to paint and produce art, not out of a genuine desire and love of the process, but out of fear of not leaving something behind more than memories.

That was a difficult pill to swallow, but finally everything made sense. I was frustrated because the act of painting, in that moment, was no longer about expressing joy, but controlling anxiety.

And maybe I’m not as much of an artist as I used to be, but I am multifaceted, as are we all. Since relieving myself of that burden and seeing things as they are instead of how I want them to be–or otherwise through the lens of fear–I also realized that over the years I’ve slowly made the transition from Artist to Writer. And I say transition because in the past I’ve always been an artist first and a writer second, but now, my creative spirit flows much more effortlessly through the medium of words. I also enjoy being an amateur photographer; the key word being enjoy.

I have the desire to create, and I still very much enjoy painting, and photography, and writing. And this time, I know better than to jump from one label to the next with the implications that it will save me from the fear of being forgotten.

a piece I did a few days ago, out of the blue, for fun, with random inspiration
a piece I did a few days ago, out of the blue, for fun, with random inspiration

a rainbow at night

Advance Directives and Treatment Planning, Part 2 of 2: It’s YOUR Body and These Are YOUR Choices

[ estimated reading time: 3 mins 29 sec ]
What made me even more motivated to do all of this is a situation I’m in with my pain management doctor. Words can’t express how thankful I am for his help, but the office is crowded, and sometimes they are more interested in swiftness than quality time. You’d think adequate communication was fairly important when discussing things such as burning away your nerves as a type of “treatment”?

The conversation has always been, We’ll try to numb the nerve, then if it works, we’ll burn it. Never once was I asked how I’d feel about this, or if I wanted to do it. So much so, that I nearly forgot to contemplate it, myself!

Because of the side effects I got just from the “trial” shot, doing something semi-permanent like radiofrequency ablation–or radio frequency nerve lesioning as it’s also called–would probably result in the same bizarre side effects, only forever: Never being able to recognize myself in the mirror, and never being able to keep my balance even with my eyes OPEN.

Does that sound AT ALL how I want to spend what could be my last stretch of life able to truly function? NO. I still don’t know why those odd side-effects accompanied my injection, but that’s what happened.

They were very willing to work with me when I discussed how I absolutely cannot have the steroids that usually accompany the nerve block/make it last longer, but I’ve still had a lot of anxiety about discussing how I don’t want to obliterate one of my nerves in an attempt at “relief.” That’s the exact opposite of what I view as self-care and treating my body kindly. But I don’t want to seem like I’m not wanting to help myself, something everyone with chronic illness has been accused of at least once but more likely a dozen times.

I also don’t want to come across as just wanting pills and nothing else, and get some unwanted reputation as a pill-seeker. As much as pain management advocacy groups make it sound like everyone has the right to pain control, I’m sorry, but being mislabeled still happens. A lot. Part of the reason it took me so long to seek pain management in the first place is because in the past I was always denied at the ER: They didn’t believe me and unjustly assumed I was only there for drugs because my conditions (Fibromyalgia, at the time) were so poorly understood. I know my anxiety has stemmed from all this, because what if my current doctors also don’t understand? But I’m at the point now where I’m too frustrated with the fact that my opinion over what I want to do with my body was never even requested, so they will either understand, or I’ll have to find a new clinic.  We have to talk about how I do not want to do that to my body.


My point in this two-part entry, is this:

You don’t have to do what’s “expected” of you, when it comes to your health. Whether that concerns end of life care, medical treatments, or prescription options: If you want them, and you think they’re worth the risk–and they all have risks–then try to get them. But don’t feel pressured to get them just because someone else thinks it’s right, because your doctor thinks it’s right, or because other people wish they could have it, if it’s not really what YOU want for YOUR body and YOUR life.

For a long time I even felt guilt over turning down my Lyme etc. treatment because there are people who want to get treatment, that can’t… But that doesn’t do anyone any good at all. It doesn’t make sense to kill myself with antibiotics just because someone else wishes they had any antibiotics at all.

And don’t forget to consider what it means for you in the long run. Many people want to stay around for as long as possible, no matter what the cost; for their children, spouse, best friend, others who need them, without stopping to think of how those emotionally-charged decisions are actually going to affect their life. It’s worth the extra thought.

Are they still getting “you” if your attempts to stay alive rob you of your body and mind? Is it in the best interest of your values and morals? And are your morals and values in your best interest?

Cellphone photo #10
“I will live. we all one day will. but where’s the difference between life and living?” (Photo and text credit: Leni Tuchsen)

At what point is prolonging your being alive with the aid of modern medicine only going to promote your suffering?

a rainbow at night

The Choice of Someone With Progressive Disease to Stop Treatment, Part 2 of 2: The Call to Start Living

[ estimated reading time: 5 mins 9 secs ]
Since making my decision, I’ve continued to be pulled in this direction, even when it scares me to think of where it might ultimately lead. So much has showed up in my life to gently guide my realization into, “It’s okay,” and I’m entering a place where I truly believe that. Otherwise, there’s no way I could have any peace at all with what I’m doing.

My family supports me, as do my closest friends. Others are unable to talk about it, which I understand for now. The latest recurrent theme popping up in my life (we’ll call them, Intuitive Affirmations from the Universe) is how much better a lot of people do after their decision to live life instead of treat disease. My most recent encounter was with a woman buying something from me. Out of no where she mentioned her father and uncle who both had cancer, and how her father only made it a year after choosing to attempt treatment, while her uncle made it two and a half after he chose to not.

And of COURSE that’s not always how it works, and people are allowed to choose whatever they think will bring them the best life and most happiness. And yet this is the story the universe brought to me, and it’s been doing that a lot, lately. I’ve also been confronted repeatedly with people in our spoonie community who have passed on, not from their disease, but from their attempts to cure it. Every time, I feel the calling in my soul that this is not how I want to go. I’ve said repeatedly that I do not want to be one of those “die trying” people. That still holds true.

All this helps reaffirm to me that I really am going to face the best outcome by doing things this way. That this way, I will have some enjoyment in life and get the most out of what life has to offer.


I mentioned before that my darkest hour was when I felt like I had to make the decision the Universe approved of, lest I be abandoned by all things good (brainwashed much?), but perhaps that wasn’t entirely accurate. I did think about suicide a lot.

It was worrisome because I’d only ever thought of it when I first got myalgic encephalomyelitis. But I don’t want to harm myself in any way! I love myself and I love my body even if it struggles to be a fully functioning body. After much introspection, it came down to me actually just wanting to be relinquished from the decision of what to do, so I wouldn’t have to feel the agony of “what if I screw up.” Again, in hindsight, I can see why I thought that. If, in that state of mind, my options were to make a decision that would leave me miserable (treating disease again), or choose what I felt to be right but which I was also convinced would leave me abandoned (not treating) … It’s in these moments I have compassion for myself having had to sort through all that.

And I did make it through.


Toward the end of it, I sat and wondered if I would regret my choice to not go into “treatment mode,” having knowledge these genetic polymorphisms exist, and having knowledge of what untreated systemic infections can and will do. Would I blame myself in the future, for not taking action right now to “fix” it? There’s only a tiny possibility it could make things better, temporarily, but it’s just another way to prolong the inevitable.

The loss of life that I would experience trying to keep up with everything involved in “fixing” this, is not worth any benefit I might gain in health, later on.

I do not want that for myself anymore.

My body has a lot of disease, and I cannot devote my precious resources into planning doctor visits; going to doctor visits; finding more doctors based on test results; researching what supplements to take and how to take them; or having to be a part-time researcher in general just to validate what my doctors tell me, because I’m sorry, they just haven’t proven themselves to be competent at all and their ignorance was almost the death of me on more than one occasion, if I hadn’t trusted my gut…

In a personal post I wrote the other day, I described this as using all my energy to prolong my life, just so I could continue on with the task of prolonging my life. Where is the actual living? I wouldn’t have time or energy to do both, and I cannot, cannot, cannot put my life on hold anymore.

Some people would be driven mad if they didn’t go into treatment mode. I was like that for, what, almost thirteen years? Now, I would be driven mad if I did. Enough is enough. A season for all things, and whatnot. (All seasons are beautiful and necessary…)


These are the most personal words I’ve ever written, the most personal things I’ve ever shared. And I share them in hopes that someone out there will benefit from it. I don’t personally know of anyone else choosing this path in response to my particular “set” of diseases, so if you happen to know of someone, please send them in my direction.

As I often do, I leave you with a quote from Ralph Marston:

“You have nothing to prove and everything to be. What matters is the truth of who you are, not the way you appear to others.

Give the honest truth of yourself, and you have no reason to strive or worry about making a good impression. Give the authentic truth of yourself, for it is the most loving, compassionate, uplifting and enabling thing you can do.

You do not have to strive against your own thoughts of limitation. Allow your unique beauty to continually unfold, and experience the power of how good and right it feels.

You do not have to be held captive by the thoughts or actions of others, or even by your perceptions of those thoughts and actions. You can allow yourself to be, positive and whole and fulfilled, now and always.

You have everything to be. Feel the miracle of your existence, and fill the world with joy.”

a rainbow at night

 

The Choice of Someone With Progressive Disease to Stop Treatment, Part 1 of 2: Wrestling With the Universe

the-choice-of-someone-with-progressive-disease-to-stop-treatment
[ estimated reading time: 4 mins 20 secs ]
I did not arrive at my decision lightly. I experienced… Ah, I experienced a lot. The Caring Connections organization put together a great example list of the emotions involved in living with serious illness:

Emotional changes that you may experience include:

  • Fear – about what will happen as your illness progresses, or about the future for your loved ones
  • Anger – about past treatment choices, about the change in diagnosis
  • Grief – about the losses that you have had and those to come
  • Anxiety – about making new decisions and facing new realities
  • Disbelief – about the changes that will be taking place
  • Relief – about ending difficult treatments and setting new goals for care”

They also have a list of various myths, truths, and things to remember, such as:

Myth: Accepting that this illness cannot be cured means that “nothing more can be done.”
Truth: When the focus shifts from cure to care, a great deal can be done to relieve physical pain and emotional suffering, and to ensure a good quality of life.
Remember: Have conversations with your loved ones about what you do and do not want. Designate a healthcare agent to speak for you in the event that you can no longer speak for yourself.”

I can talk about this more clearly and rationally now, after several weeks of living with my decision, but like I wrote earlier: It was anything but easy. (This entire post is quite embarrassing to write, actually.) I experienced extreme guilt for not wanting to get treatment.

Since I don’t believe in coincidence, it was difficult to figure out whether I’d learnt of the MTHFR gene mutation to get it treated so I could get back on Lyme treatment (but I thought of this more out of habit than any true desire or intuition), or to just be more aware of how I could help my body… I was living too much in the trying to find the Lesson and not enough in the living the Experience (which ultimately gives you the lesson). I heard something like that during Oprah’s Super Soul Sunday several weeks ago.

I knew I’d lose my mind if I tried to do “the Lyme fight” again.

I’m 99% sure I’d lose my mind if I fought my own body at all, at this point, to be honest.

So I didn’t know what I was “supposed” to do. I knew what I wanted, but I felt guilty for wanting it. Probably as a remnant from my more religious upbringing, I actually felt like God would be angry with me for my decision. I automatically felt like choosing to live without fighting disease, would be choosing to die, so how could The Universe possibly support me in that? I felt like I couldn’t trust myself anymore.

But that same day, the guest on Super Soul Sunday started talking about God’s Love, and it really brought me back to my core beliefs… The Universe bringing me back to Itself, surely.

It reminded me that I am not being judged. That God–whether a He, She, It, The Universe, whatever that Source may be–does NOT hold anger or negativity toward me for my decisions, that those feelings come from my interpretation and not reality. It reminded me that I could NEVER be a disappointment, and the most important of all: That there is nothing but Love and Acceptance for me; Love and Acceptance for What Is; Love and Acceptance for what I decide…

As a recovering codependent, I had to realize The God Force I believe in is not like so many humans I have known, who bestow their version of love based upon how much what I do agrees with their opinion.

Probably the craziest part of it, was that in my darkest, anxiety-ridden moment, I felt like if I made the “wrong” decision then all my suffering would be my fault and I would deserve to be punished and abandoned, for not being in alignment with “God’s will.”

Oh, thank you, gene abnormality, for helping me bring all of this to the surface and release it. Those old brainwashed ways of thinking are NOT who I am!

I was so focused on What if I make the wrong decision? that I wasn’t able to stop panicking long enough to figure out from where my suffering was arising. And I was so absorbed in assuming my thoughts were a form of escapism–I must be running from my fear of going to a new doctor, I must be terrified of the new treatments not working, I must be running from the reality of another health problem…right?–that I completely neglected the idea that turned out to be the real problem:

I was actually running from the fear of not treating, and what would happen when I did that.

Treating felt too wrong to possibly be right. But choosing to forego it is something I’ve never done. I can see now, in hindsight, this discovery WAS the lesson in itself. It wasn’t a lesson in what to do. It was a lesson in how to Not do, something I’ve never known how to.. well, do.

I had no idea how much courage it takes to let go. To be continued…

a rainbow at night

 

What all could you do if you just changed your expectations of how to do it?

My art supplies have been in the largest cabinet of my six-foot-tall dresser since I moved into this house, and even in the old house, they were put away because I was too sick to do anything except extremely sporadic artwork. And I don’t believe in putting a bunch of “supposed to finish” projects out and about; I think it leads to stress. I didn’t need to stare at things that were impossible at the time, reminding me of what I couldn’t do because of the effects of being in treatment, and the limitations imposed by disease. I think the things you need to put in your immediate vision, around your workspace, are the things you’re actually going to work on.

And now it’s time to bring them out.

I am going to paint. I am going to convert my desk–which up until now has been used for normal desk activities–into a place for my art supplies. My white writing desk is going in the living room, and I’m bringing in my larger, flatter one to better serve my purposes. And a lamp. And a printer. But I digress…

Most won’t understand the significance of me, someone with OCD, converting their perfectly markless desk into an art station, where it will most certainly become covered in…everything.

Luna got me more watercolours.
Melissa got me more charcoal.
I just re-found my ink.

Things are not going to stay clean.

I can’t do art like I used to do. (Or perhaps I could, just once, but having my arms take two months to recover from such an unwise activity is just..dumb.) And you know what? That’s okay. Now I can do different things, perhaps better things. I’ve only recently begun to see the thrill of painting, and I can learn more. I just can no longer expect myself to sit down and complete a project all in one go, like I used to…

And it wasn’t bad that I did things like that. It was what I was capable of at the time. If I had a random hour of being able to sit up then I had to use it wisely and do whatever I could in that hour, because it could be months before I got that chance again. My usual daily limit of being upright was less than 30 minutes per day, which I usually needed to eat and bathe.

Long before that, I would draw for hours at a time, relax with music and my pencils and everything else faded away…

But some days I still may be able to paint for hours, like the day I made this poster for my niece, combining some ideas I saw online:

For my niece, so she will have something to remind her that someone thought she was amazing and wonderful.

Other days–probably most days–I can go back and forth between desk and bed, whether it’s a physical desk or my overbed desk, sitting up and painting for short stretches of time and lying back down while I wait for the paper to dry between layers. That works out, doesn’t it? And I’m okay with having to do that.

I’m not going to stop doing things just because I can’t do them the way I used to, or the way I want. The end result is still possible, I just have to achieve it in a different way.

 

What do you think you could still do if you just changed your expectations of how it “needed” to be done?

a rainbow at night

Let’s talk about my New Year’s resolutions.

There are lots of things I’ve wanted to do, but chose not to in the interest of preserving spoons for a perceived “better time,” which I imagined occurring after treatment when I would feel better/not need to devote my energy solely to physical healing. Buuuuuuuut with the failure of all those treatments and my subsequent new-found sense of Now… Let’s talk about my New Year’s resolutions.


I’m going to listen to one audiobook per month since I can finally afford an Audible subscription.

Truly, “serendipity” doesn’t even begin to describe what the Universe has effortlessly brought into my life since The Big Relapse began. Everything I’ve needed to get through each stage has practically been placed into my hands with a loving, “Here you are, my dear.”

So it shouldn’t have come as too much an additional surprise when my friend Barbara posted about this book, A Year to Live: How to Live This Year as If It Were Your Last, by Stephen Levine.

Click to read more on Amazon.com

Even before I saw it, I had the mindset that I was going to take 2013 by the horns and embrace all of it as if this could be “it,” even if it wasn’t. Turns out, there’s an entire book dedicated to this very thing! And Barbara is reading it! And now I am, too, as my first audiobook. (Downloading the Audible app onto my smartphone made this especially accessible, and the Philips SHE3580 series earbuds make it very comfortable for someone sensitive to pain to listen whilst lying down.)

Another thing that I just found–or that just found me, perhaps I should say–is The Big C, one of those shows you’re interested in but it just doesn’t feel like the right time to watch it. Until you finally do, and realize it could have never impacted you more than it was right then. ♥ I’m excited for the finale this Spring! (I’m excited at the prospect of being alive in Spring, aha!)

Speaking of which, on to my next resolution.

 

Many may have seen what I’m calling “the Joy Jar.” The idea is to write good things that happen to you during the year on pieces of paper, and put them into a jar. At the end of the year, you will have a fine opportunity to get a papercut a collection of events that made you happy to reflect upon, and it can help people focus on the positive side of life when it’s so much easier to focus on what you lack, or what you perceive to be wrong. But I thought I’d augment the idea into something I can actually see myself doing.

journal
Several years ago a friend gave me this journal that I didn’t get to write in very much before illness worsened.
Every day, I am going to write one good thing/something for which I am thankful. And I’m going to continue my goal to attain fluency, so I will be writing it all in French.

 

One of the most unexpected things I realized at the end of last year, was that I am so very tired of only leaving my house for doctors. It usually takes at least two days of carefully organizing spoons, one day of rest, and several stabilizing medications, to get me out of the house in a semi-functional capacity…and arrive at an appointment. Why? Because it’s critical for my physical health. So what made me think that my emotional health was any less important? I’m such an advocate for taking care of your mind, and yet I completely surpassed the notion of that care applying to something like this, too.

So I’m getting out more, to do things that don’t involve anything medical.

I fought for years to be able to breathe again and walk again and I’d like to do things–important things, fun things, memorable things!–while I’m still able. I shall go to the theatre more–performing arts and movies, visit more with friends, and dine at one new restaurant per month with my family.

English: The 14th Dalai Lama, Tenzin Gyatso in...
The 14th Dalai Lama, Tenzin Gyatso in Antwerpen, Belgium 2006
And I have plans to see His Holiness the 14th Dalai Lama this year!

Such an event is also on a friend’s bucket list, so we’ve decided to go together. I’ve already gone to the park this month, and in a few weeks I am going to the zoo. (I love the zoo; I used to go every year.) Other things I have planned for the near future are going to see a local chamber orchestra, going to a dance performance (with seats in the front row balcony), and taking my niece to see Jurassic Park in 3D… I may think of more, who knows!

 

Finally, I’ve vowed to follow through with my artistic urges, wherever they lead.

I’m going to express myself through whatever creative means are natural to me. I’m going to write uninhibitedly, because

“Those who matter don’t mind, and those who mind don’t matter.” (Bernard Baruch)

I’m going to use those watercolours, the GOOD paints and the NEW brushes and the SPECIAL paper I’d been saving for “important” projects. And I’m going to take those pictures, I’m going to record more memories with my gorgeous new Samsung WB100 digital camera with HD video, 16.2 MP resolution, and 26X optical zoom.

“If you bring forth what is within you, what you bring forth will save you. If you do not bring forth what is within you, what you do not bring forth will destroy you.” (as attributed to Jesus in The Gospel of Thomas)
I’m going to live my life this year, and no longer put things on hold.

Did you make any resolutions this year? Do you believe in making them, or are you the type to make a decision whenever you feel ready for it, New Year or not?

a rainbow at night

What do you really want your good health for, anyway? (Don’t wait.)

It probably shows in my recent posts that I’ve gone through a lot of changes in the past few months, physically and mentally.

When you’re in treatment for an illness like chronic Lyme disease, ideally you have to put off certain goals or extra activities because letting your body heal is the priority. And when you have something like myalgic encephalomyelitis, you shouldn’t push yourself too much because abstaining from chronic over-exertion will give you the best long-term prognosis; repeated self-induced “crashes” will harm you.

But faced with two relapses, the possibility of another gradual decline, and the complete mental and emotional exhaustion that arises after four consecutive years of fighting for your life, I came to some big conclusions in early December:

This is the only life I have, it’s okay to make whatever decisions I think are necessary to live it, and I cannot put anything on hold anymore.

There is no longer a “things I’ll do when I get better” category in my brain. And it’s not that I don’t believe I can get better–I believe anything is a possibility.  (And how I love that word. “Possibility.” Almost as much as I love the word “indefinitely.” Indefinite possibility means, at once, what is uncertain is also limitless.) But like I said a few posts ago, even looking forward positively is still not living in the moment. You can’t get caught up in all the things you’re looking forward to having or being or doing, because you’ll miss the opportunities of the only life you actually have–the life you’re currently living.

Besides, what do you really want your good health for, anyway? I realized that many of the things I wanted to do were still possible if I just went about them a different way and stopped waiting for that imagined “better time” in the future… A future I’m not even guaranteed to get.

Would you live your dreams? Well, find some that are still achievable, and get started. If there aren’t any, create new ones.

Would you spend more time with your family? You can still prioritize that, you just have to do it differently than when you were “healthy.”

Would you be a better spouse/parent/friend? Don’t wait to unveil that version of yourself you’ve always imagined. They’re in there, and you can get closer to being that person moment-by-moment.

Another thing I learned is that I can’t expect people to understand where I am with this, if they haven’t been here.

My blog is (for my expression, but) less for people who are just now starting their fight than it is for people who have went a few rounds with their disease until they had to just Let It Be. I’ve had people think me delusional for their lack of understanding, just as I probably would have thought of someone like The Current Me, back when I was just starting out. And that’s okay. I hope they find this place gracefully if they also end up navigating it.

So with that in mind, I made some resolutions for this year. To be continued…

a rainbow at night

The Darker Side of Relating Christianity to Chronic Illness

church edit
Photo © a rainbow at night

My experience is not uncommon and yet no one is talking about it. Christianity never helped me deal with being sick. It told me–or maybe it was just the people involved–to “hold on to God’s promise” and if I “just believed hard enough,” God would restore my health. Yet what I actually found was just how threatening the reality that is chronic illness can be to people with deeply held religious beliefs.

While reading a few days ago, I realized I’m still so angry at the people who hurt me that I instantly recoil at the mere mention of Christianity. However, much of what the religion has become today is a mockery of what Jesus actually stood for, and I owe it to myself and others to focus more on the type of person Jesus was and less on what people have done with him. I need to stop judging Christianity by the actions of people calling themselves Christians. This anger arising in me is a healthy response to having been wronged, but it is also a message and warning that something needs to change. I of course cannot change what has already happened, but I can work toward forgiveness before it turns into a lifelong bitterness that I blindly accept instead of rightfully question.

Forgiveness for the brainwashing, when I was at my most vulnerable;
Forgiveness for the innumerable times I was told in a manner of words,”If you’re sick, it’s your own fault for not believing in God strongly enough“;
Forgiveness for the years wasted on false promises, year that could have been used to help me find real meaning.

“Father, forgive them; for they do not know what they are doing.”

In our context, “forgiveness is letting go of the hope that the past could have been any different,” and “in order for forgiveness to happen, something must die.” So I understand I need to stop clinging to what I wish would’ve happened and move forward…after I properly grieve.

Most Christians I was exposed to back then felt they had to protect their image of god through bizarre logic, such as:

  • If you believe in Him, you will be protected from anything “bad” ever happening to you;
  • If something bad does happen, it’s because you weren’t doing something you were told to do; and
  • Bad things will continue to happen until you get rid of all the “evil” in your life allowing the bad things to happen.
  • In other words: Everything is your fault.

The Christians I encountered literally blamed me for this disease. They told me I must have been doing something wrong in my life for this to be happening, and said God was “allowing satan to punish [me]” for it.

During my first few years of illness, some of their suggestions about this “evil” were:

“Stop drawing dragons; they’re symbols of the devil!”
“Someone in your household has been watching pornography!”
“Get rid of that gargoyle; it has a ~bad energy~!”
“This is a generational curse because of your parents’ sins!”

It was all about other people telling me what I needed to do in order to earn their god’s love, nevermind that being “perfect” is completely unattainable; was that the catch? Trying to appease “The Church” in order to be loved by their god will only leave you struggling in self-hatred. But apparently, then and only then would their god take away this “curse” of illness, a plight bestowed upon my physical form because I literally wasn’t good enough to receive his mercy.

Does this mean Tammy Faye Bakker died from cancer because she didn’t pray the right way, was tainted by original sin, didn’t repent enough, or had a generational curse?*

From what I’ve seen, things like this are the main reasons people stop believing in any religion, especially Christianity. They are led to believe that God hates them for being a lowly human, that God is punishing them for “original sin,” and they can’t wrap their minds around anything “allowing” so much suffering in this world. (Side note? Buddhists believe in original goodness.) But a belief in Something Greater is not your opt-out of experiencing anything painful.

Disease is a not some freakish anomaly that shouldn’t exist. Anything with a body can and likely will get diseased at some point, and it’s not a punishment from either the underworld or spited gods. There will also come the morning where you will see your last sunrise, and you will die. Yet instead of being one of our greatest, most revered teachers, Christianity describes death as our “last enemy.”

I have a different view on how spirituality and illness intertwine. Is it not true that disease is one of the main conditions drawing people to religion in the first place?

Within the many boxes and ellipses of spirituality and religion, I mostly fit within Buddhist Unitarian Universalism. I believe there are infinite ways to connect to the divine, and anything claiming to have a monopoly on that force should be approached with caution and skepticism.

In Buddhist practices, there’s a common misconception that “life is suffering.” But as Thich Nhat Hanh elaborates in his book, “The Heart of the Buddha’s Teaching“:

If we are not careful in the way we practice, we may have the tendency to make the words of our teacher into a doctrine or an ideology. Since the Buddha said that the First Noble Truth is suffering, many good students of the Buddha have used their skills to prove that everything on Earth is suffering. … But in other parts of the same sutras, the Buddha says that he only wants us to recognize suffering when it is present and to recognize joy when suffering is absent. . . . We need to say, ‘The basis for this suffering is such and such an affliction,’ and then call it by its true name.”

I believe, before we incarnated, we all agreed to the conditions of this earth and the existence of suffering, illness included. I don’t believe God/the Universe/whatever-your-preferred-title controls our actions. This Source Energy might want to pull us toward Love, toward our connection to this Source, but cannot stop us from hurting ourselves or others. We are all beings in our own right, not puppets, and free will exists. “Bad” things do happen to “good” people. Natural disasters happen. Terrible diseases happen. People abuse each other in unthinkable ways. And from those situations emerge some of the strongest people on this earth.

To admire strength but then deny that this is how strength is actually born, is to ignore that steel results from setting fire to iron. As Viktor Frankl famously said, “What is to give light must endure burning.”

Wonderful things can come from having experienced illness, and its’ timing in our lives–truly the timing of everything in our lives–is absolutely essential. Most are stopped in their tracks and have a chance to ponder how they arrived there. Near-death experiences invariably bring people closer to, if not the divine, then what they consider divine in their own lives. What’s really important to them? And what’s really important to the people closest to them, who often obtain a second-hand awakening by osmosis?

If someone can look at me and say that God, however you define It/Him/Her, has not healed me and transmuted my life, they’re not looking closely enough. I was a horribly angry person, swarmed by negative emotions, spiritually and psychologically fractured. Like so many others, I thought chasing The American Dream would give me happiness. Nothing could have ever given me pause like the experience of disease. I can say in all honesty that I wouldn’t change a thing, because no other turn of events in my own life could have possibly created the person I am today.

In a perhaps ironic twist, I actually do believe my soul helped decide this life. Not all the specifics, but I do believe we help choose our time of birth, our place of birth, our body, even the parents to whom we incarnate, and have decided beforehand which main lesson we wish to tackle this round of life. Reincarnation is a given, although I don’t yet see any evidence to support we were once ants, trees, or tigers; the energy of other types of life operates on a different vibration than we do, I think.

But am I enacting the same blame upon the sick as the Christians I rejected, by saying our soul chose to experience disease?

I don’t think so. Saying our souls choose a specific outlet for the powerful alchemy of suffering in order to grow, is not the same as saying you are inherently bad, that some omnipotent being is punishing you and you must appease it to make the pain stop, or it will continue to berate you with suffering until you “love” it enough. As a survivor of many types of abuse, I can say with some authority that sounds no different than being under the control of an abuser.

The people trying to tackle my experience of disease through Christianity didn’t know they were hurting me. They didn’t realize they were blaming me for my disease because of their own desire to protect their personal understanding of god; their inability to reconcile the version of Him in their head with the thought of Him “allowing” illness to happen; and because they saw illness as a curse to be delivered from, not a fact of life with which all must cope.

They didn’t know it all ultimately came from their fear of not being in control. 

Those people should not have turned this devastating illness into my responsibility to “pray away,” but inside I’d like to think that if they knew any better way, they would have done so. Even if I am still working on my forgiveness, I am glad I have not become that which has hurt me, so I will not hurt others in the same way. And may it be so.

a rainbow at night

Updated October 2015
* Of course not–don’t send me hate-mail.

See also:

“All is well, and has been, and will be.”

[ estimated reading time: 6 minutes 26 seconds ]
This year I learned that looking forward is still looking away from the present.

Even looking forward positively, is still not living in the moment, not looking at Now. You can’t get caught up in all the things you’re looking forward to having or being, because you’ll miss the opportunities of the only life you have: The one you’re already living. It’s good to have goals! But, for some things, it is not the end result that is most important.

I’ve been noticing that now it no longer serves me to see this “attack on Lyme” as a battle to be won, where anything other than eliminating the bugs is a failure. That cannot be my focus anymore. It’s not my focus in dealing with M.E., and it cannot be my focus for dealing with neuroborreliosis, either.

I used to be okay with waking up every morning knowing I had a war to fight. Because for a while, it really was a war–beat the bartonella, do whatever I had to in order to get it under control, or it would very quickly be the end of me. And like a patient recovering from chemo and radiation, my body paid the price of all the medications needed to do that. But at least I’m still alive. I did it! I just can’t “win the war” against the Lyme that way…

I’ve had to stare reality in the face for the past several months and recognize that I may not “win the war” at all, at least not in normal standards. I have to redefine what “winning” means to me.

 

This is not a disease I can conquer forever with a few rounds of treatment. With my immunodeficiencies, very neurologically-oriented six-years untreated strain of infection, ten-year history of M.E., and twelve-year history of just trying to stay stable every single day, my body has been through a lot. So, to be perfectly honest, I may never get rid of Lyme disease. But that doesn’t mean I’m going to just let it take over.

I just can’t look at it like my goal is to “win,” where winning means nothing short of slowly eradicating the infection, because truly, why would I do that to myself? Why would I invest all my energy and focus into something that, for all intents and purposes, probably isn’t even possible anymore? Why would I do that, when there is another way, a way that brings me peace and also allows me to treat my disease?

Because that’s what I have left–I have a treatment, not a cure.

I used to think it could be a cure, because for most everyone, it is. Even if they find it late in the game, many will just have a longer battle to fight, but they can “win.” They can get IV antibiotics if their case is in their CNS, or they can at least take loads of oral antibiotics to make sure it dies and stays dead. That is possible, even for many with coinfections. But me?

Even if I could get IV antibiotics, they would probably kill me in the process; even oral antibiotics are almost impossible. (Almost.)

Maybe if Life had shown me the infection earlier, we could have cured it, even with all my additional factors. But that didn’t happen. I’m only thankful It brought information my way when It did. I am glad bartonella and mycoplasma happened, to alert me that I had something else going on that was about to irreversibly damage my body. I’m glad I am someone who pays attentions to those things, or I wouldn’t be here right now. But that’s the thing: I am still here, and I still have a life to live…even if it’s not the one I imagined!

 

I naively thought that when you go through something like this once (getting diagnosed with M.E.), twice (getting diagnosed with Lyme disease), it might be over, the whole “massive illnesses that alter the course of the rest of your life” thing…

But that wasn’t true, either. It took me almost a year to come to terms with the Lyme disease diagnosis, because inside I knew if someone like me had it, it’d probably be with me for life. I didn’t want to accept that. Then once I started getting better for a while I thought, okay, it’s not too late for me, there is still hope! And back then there was hope because it’d only gone untreated three years! And even now, I haven’t given up… But like I said, looking forward is still not looking at what you already have.

Someone shared with me a Žižek quote that pretty much sums up everything:

“Our desires are artificial, we have to be taught to desire.”

I was taught to desire an eradication and to accept nothing less. I was taught that if I did certain things, then things would work out, go the way I wanted. I fixed my focus on “I can get better again if…” and put in my head a bunch of things that could happen, should happen, that would allow me to have the life I wanted. And I went after them, like anyone would…

  • “If I eradicate the bartonella…” I did, and my reward is Life.
  • “Then I can get the Lyme disease under control…” But I cannot handle the treatments anymore.
  • “Because a lot of people with M.E. experience another remission after about ten years.” But I relapsed, instead. Twice.

 

Things didn’t go how I planned, how my doctor planned, how my friends and family planned. But my life is not over. I just have to come to terms with my new reality–a life with Myalgic encephalomyelitis, and a life with chronic relapse-remitting Lyme disease. I may eventually get a diagnosis of multiple sclerosis at this rate, but at the very least, that disease does not face the same mockery by the medical establishments (or insurance companies).

I have fought well and hard for the health I do have, and I will continue to fight to keep it, but I will not, cannot, see this as a “daily battle to win the war,” anymore. It is not. Now, it is better for me to wake up and think about my other goals, and have “treating Lyme” as just another part of my daily regimen, a part of my life that will never change just like having M.E. will never change. I cannot give away all of my spoons to treating a disease that will still be around after the fact.

“You are here, in this moment, able to do so much that’s worthwhile and fulfilling.

“Your life has real purpose, and when you let go of the superficial concerns, you can feel and know and follow that purpose. Life is beautiful, and by taking the time to look closely, you can see the beauty everywhere.

“All is well, and has been, and will be. The genuine goodness within you refuses to be compromised by any of the world’s ups and downs.”

“Go ahead, step forward, and live with total, solid confidence. Let every thought and action be filled with positive purpose and the knowledge that ultimately, you cannot fail.” (Ralph Marston)

My disclaimer: If you’re a fellow patient of Lyme, I beg of you not to take my own need for expression and use it to convince yourself that there’s no hope for you. You and your doctor can only figure out what’s best for you after a careful analysis of your individual situation. I’m not even saying there isn’t hope for me, but I’m fully aware of how some people think and thus how everything here might come across… It actually stops me from writing sometimes, but I don’t want that anymore.

Expect to see more of my uncensored thoughts in 2013, and stay strong, no matter what decisions you get to make. :)

a rainbow at night

Unpopular Opinion? The Taboo of Gratitude Within Chronic Illness Communities

[ estimated reading time: 5 minutes 23 seconds ]
I don’t know why this is an unpopular opinion, but it is:

I feel blessed to live in a country where I can obtain so many accomodations to offset the effects of my disease.

If I were in many other places, or a third world country, I would have died within a few months of getting sick; there would have been no chance for me. Obviously that wasn’t the journey I was meant to take, it would not have given me the lessons I was meant to learn, so here I am.

Things are not perfect, but it is a wonderful thing that we do have support systems in place for people in my situation, regardless of how many politicians call us malingerers or how many bitter people try to loop everyone on social security/welfare into one big “something for nothing” group.

All these things–social security, medications, things like laptops that help us connect to others in a housebound state, and things like wheelchairs and adjustable beds and home IV therapy–give us a chance at life that many before us never had. (Hell, when I was growing up we had to endure illness without the invention of the internet! Can you imagine? Haha.)

This thinking I’m doing comes from a frame of mind that doesn’t expect other people to owe us anything. It comes from pondering Buddhist philosophies which seek to be realistic, accept What Is, and not live life in a constant state of wanting. Because that’s certainly not the mindframe of most here in the West. It comes from thinking that we are worthy of love and joy and peace simply because we exist, but hey, suffering also exists: as a fact of life, not a punishment.

Yes I am upset at the discrimination of the now-infamous “47%”; yes I think it’s our responsibility as human beings to try and care for one another and get help to those who need it; yes I think it’s our responsibility to speak out against injustice, when we have so many means to help people, and those in places of power are not cooperating. I’m not suggesting we simply turn up our noses, say “it is what it is” and not try to change it.

But while you’re waiting for things to change, you have to accept the way things currently are; you have to become aware of what you already have, and realize how fortunate you are to even have that.

It is amazing that you have methods to help manage your illness: Medicine to help ease your pain; soft beds to lie in; the right food to eat; indoor temperature control, which is an often overlooked accomodation. Many in developed countries, I think, forget that the majority of the world does not have these things to the exceeding surplus that we do. If you have something that the majority of the world does not, you are blessed.

I cannot forget that if I were somewhere else without these accommodations, I would perish. My daily life makes that uncomfortably apparent.

Of course it is disappointing when there exists external items to help you even further, that were created for the purpose of helping–like money, certain foods, medical treatments–and for whatever reason, you don’t have access to them. All the time, I see people with myalgic encephalomyelitis with no hope of getting better because research for our disease is not being funded (though the FDA did recently vow to find medications to treat both CFS and M.E.–not “ME/CFS,” but both separate, distinct conditions). All the time I see people with chronic Lyme disease and its related co-infections trying to raise their own funds for their treatment and cure, because our government does not currently believe we even exist and getting the proper medications can be impossible. And I see people who are disabled and who should be able to receive benefits to live on so that they won’t become homeless, but who are not getting them due to flaws in the system. Things are not perfect.

But what about what you do have? What about the things that help you face the day, without which you’d have been gone long ago? Does it truly not matter that those things have helped you stay alive up until this point?

Sometimes when I am grieving the things I’m “lacking” but “should” have, at some point I try to practice gratitude for those that do have them. I.e. I try to be happy for those whose test results and various means of funding enabled them to get the PICC lines and ports and hyperbaric oxygen therapy and infusions. And somewhere out there is a person who cannot get any antibiotics, who wishes they had the medication I do; a person who wishes they had a doctor who believed them, like I have; who wishes they had adequate pain management; had funding to get daily living accommodations; friends who were there for them; family who supported them…

I’m still going to be extremely disgruntled when my head feels like it’d be better off removed than attached to me.

I’m still going to feel like crying when I hear another child with M.E. has been forced into a mental asylum because their doctors do not understand the harm they’re inflicting.

I’m still going to be bothered by the fact that I will never be able to get IV antibiotics with my test results, just because my immune system functions too poorly to make those tests show enough positive antibodies.

Again, I am not saying we are to be emotionless zombies without a reaction to anything. I was honestly scared to post this. I feel like, if absorbed in the wrong way, it will seem like I’m saying, “You’re lucky to get what you get, so shut up,” and that is not my intention. I also don’t want to type this and make it seem like I live in a fantasy world where nothing bothers me. I’m trying my best to improve my state of being through whatever means available, just like the next person, even if often my body cannot cooperate yet.

I just find it better to guide our thoughts into gratitude instead of dedicating our limited, precious time and precious energy to all the things we don’t have; self-compassion is better than self-pity.

I find it better to realize that having anything to help us through disease is a miracle, because we are not, in fact, entitled to it, but blessed that we got sick in a place where anything at all could be done for us.

I just find it better to live in gratitude.

a rainbow at night

(Postscript: I know I’m not entirely responsible for how people perceive my writing, but I do hope I’ve framed this enough in the way of, “You are lucky to get what you get, and I think it’s best to focus on that while you try to get whatever else you need.”)

“‘Just try harder’: The Health Bootstraps” (via this ain’t livin’)

People who don’t complain and try harder are rewarded, says the messaging, while other people deserve their situations because they don’t appreciate what they have or aren’t willing to cooperate with the people who are just trying to help them.

“Health is a highly variable thing. … Two people with asthma, for instance, can have radically different experiences. One of them might respond extremely well to medications, could experience some benefits with dietary changes, and might find that the asthma is very controllable. … This is the good asthma patient, the one who tried harder and succeeded and is doing well and is a model for other patients.

“The other asthma patient tries a series of inhalers that don’t work very well. … The patient tries complementary medicine to see if it will be effective, but it’s not, really. This patient is constantly relying on a rescue inhaler, wheezes on short walks up the stairs, has poorly controlled asthma. …

“Yet, this patient is trying, and is following all the directives. This patient is taking medications and considering other options and meeting regularly with a care provider. The patient’s asthma just isn’t very responsive to treatment, which means there’s going to be a lifetime of struggle with hospitalizations, endless switches between medications, and other problems. Not because the patient is a bad person unwilling to bootstrap out of chronic illness, but because the patient’s particular manifestation of illness is refractory.

“Illness is not uniform. …

Anyone who does’t [sic] ‘try harder’ is thrown away like so much garbage and deemed unworthy of assistance, and the mectric [sic] used to determine if someone is trying hard enough is always based on the views of an outsider. (Emphasis added.) Read more

via this ain’t livin’

I am not my body.

digital painting by a rainbow at night, based off the original photography of Heather Bybee

And yet, I am.

I am not my body because I am not the sickness, the weakness, the pain, or systemic dysfunction that prevents me from doing what I attempt on any given day. I am not my body’s shortcomings. I am not what my disease does, whether physical or mental, and I will not feel guilty because my body is sick. It is not my fault that it cannot function like that of the next able-bodied individual.

But I am my body because this is the vessel through which Life is expressing itself, and we have one very important thing in common:

No matter what is going on, it always functions to the best of its ability. Each and every moment it aims to support and accommodate me in all that I–and disease–attempt to do. You’re never going to wake up one morning and have it go, “No, don’t feel like giving my all today, sorry.” It may feel like it sometimes, but it never slacks off. It’s always calculating priorities and options and will always do everything within its power to run as smoothly as is possible for the situation.

“Your body didn’t betray you. It just compensated and compensated until it couldn’t anymore.” *

Have truer words been spoken?

This morning I woke up with a rash on my neck; it’s always been a telltale sign that my immune system is strained. My first instinct was to berate my immune system for not working properly–don’t I go through enough?–but wait a minute…

Did it purposely fail me? Did it not try hard enough to function properly? Did it just get lazy and decide to rash me up? No, not at all. It’s actually trying its best to support me.

Sometimes what our body is able to do isn’t enough to give us the outcome we desire. Sometimes it might even attack itself out of confusion, causing us more suffering. But our body–like you and I–will always do what’s perceived to be right, will constantly accommodate changing circumstances, and always aims to do the very best.

Repeat after me:

My body is doing the best it can to support me.
My body is doing what it thinks is right.
My body is not my enemy.

:)

a rainbow at night

* This profound statement was shared by the doctor of one of our fellow Lymies.