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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New month, new progress, new test results

Spider Web, Rockefeller Forest, Humboldt Redwoods State Park © a rainbow at night

I’m pleased to be writing that I’ve made many great strides in getting my life back on track over the last three weeks. I logged back into my Twitter account and began using it on a daily basis; participated in two “spoonie” meet-ups online, #SpoonieChat and #SCTweetFlix; am replying to some messages when my brain has readily-available thoughts on the topic; and have joined a sort-of spoonie/artist/support group/project, even if I only participate sporadically.

Other things haven’t changed so much. I have yet to open any e-mails, or even log-in to my account for that matter. And I’m still staying far away from the M.E. community and the Lyme disease community, i.e. anything to do with that style of advocacy or activism. I momentarily tried to look at how the Lyme community was fairing, but immediately saw memorial posts concerning a young woman’s suicide. I’m not psychologically prepared for that constant exposure again, as I think I’ve made very clear. I stepped into the M.E. community to test the waters, also, but that was equally a mistake.

Mostly, I’ve gained back a lot of personal power that I didn’t even realize I’d given away. I’m on a journey here, and no one has the right to tell me how far along, or at what point on their map, I should be at. I don’t even have the right to talk to myself that way. I’m also under somewhat less stress now that I’m no longer shouldering my family members through their own recoveries. I still have a lot of trouble communicating, particularly in person, but since being on antibiotics for two weeks, that has temporarily improved. In hindsight I wonder if all my temporary improvements in brain function were due to the antibiotics, or just this time.

Now that I’ve moved into the part of grieving where you can look back and see why you handled things the way you did, I realize that I didn’t do much honouring of the choices I made, even the unconscious ones. But I now have the opportunity to re-frame and integrate the experience, so I’m going to take it.

I honour the parts of myself that knew not make my drama everyone else’s responsibility. I honour the parts of myself that recognized I had to heal a little bit more first, or all my interactions would be coloured by distortions too thick to see through. I honour the parts of myself that knew I needed merciful stillness, not ruthless force, and I honour that which gave me permission to listen.

Whereas part of me assumed I’d be swallowed by deep regret over the time lost, friendships lost, and God knows what else once I finally got free, I very surprisingly feel gratitude. 

I’m grateful for even having had the opportunity to take that “time off” to recover. I’m grateful for all the fights I didn’t provoke out of my own pain, had I forced myself to socialize. (Although, in the state I was in, I can’t imagine I’d have been able to find the words for any argument, honestly.) I’m grateful for me being able to realize I was the one who was overburdened with grief, and that it wasn’t anyone else’s job to revolve their life around me to fix that. (Not that I would even do that, but I recently witnessed someone who was blaming an entire community for their own emotional suffering, to the point that they thought the community had to change to make them happy. It did make me think, “Damn, I may have trouble being around certain groups, but at least I realize this is a personal issue, and that no one owes me an apology for living their own life the way they’re entitled to do.”)

I’m still terrified that the day will come when I’ll wake up and everything will have changed without me knowing why, that I won’t be able to tolerate anything again, or another severe trigger or actual lived trauma will set me back months or years. Just as I fear that the next bad headache will be the start of another relapse. Just as someone with depression fears that that one day of sadness will turn into six months of crushing despair. The difference now is.. well, probably something neurological, as the antibiotics have shown me. But I’m no longer allowing that fear to stop me from participating in whatever ways I can choose to, while I’m able.

Thanks to meditation, I have long since found the place in myself that knows It’s not the feelings, nor the thoughts, but the One who is experiencing those things. That place in me is always still, no matter what. To be simplistic, that’s what we call “the lion’s roar” in Buddhism, the ultimate truth within us that causes all other noise to fall away, like beings from all four directions bow away from the sound of the mighty lion’s roar claiming its territory.

From my current perspective, I have two options. I can listen to the survivor’s guilt, the irrational shame, and ruin my life (or at least this stretch of it). Definitely allowed, but not recommended, and clearly unbeneficial. Or, while I’m healing, I can remember that the end point of treatment will be to eventually FEEL that those thoughts are untrue, as well as know that. But the way I see it, there’s zero reason for me to wait until I FEEL those things aren’t true before I start living better. I know the chaos is full of lies, regardless. I know they’re lies now, and I’ll know they’re lies after recovery. Why do I have to wait for my ever-so-fickle feelings to catch up with what I already know, when I can just start living that way, right now? Yes, I’ll still have the thoughts, and they’ll still feel true for the time being, but I know they’re not, and I’d rather have the thoughts while I’m attempting to put my life back together, than have the thoughts while I’m holed up in my house for months.

I can’t give away my power to change the things I can. Because this is how I gave away my strength, by forgetting the immensity of power lying within all the tiny, monotonous choices that actually make or break your life. When I saw myself writing in my last post that I’d started to self-perpetuate my suffering, I knew I had to change that, or it was not going to end well. It also gave me a little hope, because I finally saw a piece of this that was within my control. If there was something I was doing to make this worse, then that also meant there was something I could do to make it better, simply by making a different choice. So I did, and here I am, three weeks later, continuing the momentum that sprung from me publishing that last post after six months of complete silence. That post took me three months. This one took me three weeks. That should say enough.

I don’t doubt I’ll still have “good days” and “bad days.” I’m trying to mitigate the chance of another “disappearance” a bit by taking Sundays offline, in hopes that, like so many other symptoms, if I just rest for a bit regardless of how I feel, I may be able to prevent whatever it is that builds up and make me cognitively shut down. I’m not sure if it’ll work, as I still have no idea what causes that, but I’m trying, damn it.


My latest tests results are equal parts disturbing and fantastic. Good news first?

My last homocysteine level before this one–which, in conjunction with a methylmalonic acid bloodtest, helps determines the rate of your folate metabolism, as well as suggest your risk of stroke and blood clots–was almost 30 (29.4). It’s supposed to be under 10.4 at the maximum, which means it was literally three times as high as it should ever be. Not great! Before my folate deficiency really kicked into gear, it was a lovely 7.2 umol/L. Well as of March, it’s all the way down to 15.8, which is basically only 5-points-above-normal. I’m almost cured of my folate deficiency!

Similarly, when I began treating these methylation problems, I could only tolerate a meager 100 mCg of methylfolate every 3 days. Now, I can tolerate a wonderful *500 mCg* every 3 days, and I’ll probably be able to increase that, soon. (As well as B12, of course, but I need more methylfolate than B12 at this point. I’ve found the hydroxo-cobalamin works much, much, much better than any other type, for me. So heads up: If you have the MTHFR C677TT homozygous polymorphisms, in addition to being homozygous–that is, having both/two copies–of COMT V158M, COMT H62H, *and* MAO-A R297R, like myself, you definitely want to take the hydroxocobalamin form of B12 and just save yourself the money and suffering of trying the other forms. Yes, it works even better than methyl-cobalamin.)

My cholesterol levels are also fantastic and I don’t know if I mentioned here yet, but I’m no longer pre-diabetic after a lot of dietery changes to help treat PCOS. No relapses, there, either!

Now the bad news, even though I don’t know how significant this is yet because I don’t see my neurologist until next week. First, I haven’t found the results of my intracranial pressure reading, or else they aren’t putting it on my online chart, so I don’t know what’s going on, there. I did however get the results of my spinal fluid analysis, and while my glucose is normal (I think?), my protein is normal (I think?), and my white blood cells appear normal (pretty sure?), there were two things that were present that were absolutely not supposed to be: Lots and lots of neutrophils, and blood. I know this could point to meningitis, but I’d like to think if that were the case, my doctor would have called, because that’s serious? So I hope there’s some other explanation. I refuse to Google anything and scare the hell out of myself over what could be going on. I’ll find out soon enough.

Also, while I know the results of my MRI must be in by now, they, too, have not yet posted to my online chart, so I don’t know the results. And honestly, with the wave of fear that overtook me while reading the CSF results, maybe that’s a good thing, in the event it does reveal something troubling.


The spinal tap itself went great, but the recovery was peculiar, and combined with missing my IVIG for two additional weeks, I was feeling beyond terrible. The most bizarre symptom was that I could not stand more than two minutes without severe shaking, all over; the kind of trembling that makes even your teeth chatter together. But I wasn’t cold! Luckily it resolved as soon as I lied back down, but that definitely wasn’t in the “this could happen afterwards” care sheet.

About a week after the lumbar puncture/several days after my eventual IVIG infusion, I had all the symptoms of fighting some type of infection, but without a fever. It was enough to make the room tilt and spin whenever I moved, have hot and cold sweats, cause ringing in my ears, and ultimately a severe headache toward the end, but no fever? Then I remembered, I rarely ever get a fever, no matter what is happening. So after several days of that hell, I said “screw it” and started my antibiotics. I immediately began feeling better, as quickly as the next day. I spoke with my immunologist and was given more antibiotics, and I moved my appointment up by two weeks so we can discuss why my immune system isn’t able to stop all these bizarre infections from happening these last six months, even with the IVIG. I’ll also ask about mold exposure, because that’s a real possibility that I haven’t forgotten about.

During all of that mess I spent most of my time tweeting to pass the hours, and in the process befriended some great people. I tend to feel like an outcast on Twitter the longer I’m on there, so we’ll see how long I last on there this time.

Until next time,

 

Kit

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

This one is for you.

[ estimated reading time: 4 minutes 27 seconds ] © a rainbow at night
Dear reader,

As you may have discerned by now if you’ve been witness to the longest unintentional hiatus this blog has ever undergone, my creative expression has been paralyzed lately. Not only due to the sheer mass of change, but the rate at which it’s taken place. That’s not the only reason by a long-shot, but it’s the quickest explanation I can give.

For the past several years, my posts have mostly read as a chronological account of everything I’ve experienced and how I’ve felt about it, generally accounted for as it happened. Up until recently, I didn’t realize the latter was actually a luxury, and one I could lose. Again, I’m circumventing a lot, but after a certain point that way of writing became impossible, because to write anything new first required procuring necessary back story; that itself became impossible, because I’ve been coping with unprecedented difficulties concerning processing and integration. How could I summarize for others what I was unable to decipher for myself?

There was also guilt involved. One post in particular I made last year was about finally experiencing an extended period of emotional stability after killing off the bartonella (infections). Yet fast forward and what came next were some of the most daunting and powerful months I’ve ever experienced, and they were anything but serene, anything but peaceful, with no stability, save for that quiet place inside my soul. I didn’t know how to magically jump from what I wrote before, to that, without any explanation in between. It was inconceivable. I was afraid my inability to appropriately narrate the explanation would make it seem like I’d just been avoiding my emotions until I could no longer keep up the denial and hit a brick wall. Which was not/is not true at all. Continue reading “This one is for you.”

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

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

I’m No Longer at War with My Body

© a rainbow at night

Today marks the 11th year of my getting the virus that triggered M.E. — 13 years total of living with chronic illness.

And I feel really good right now, emotionally. Like I’m doing everything possible to ensure my body will function its best for as long as it can. I sleep enough, eat well, get proper nutrition with lots of what I need and still have things I enjoy, like ice cream. I drink a lot of water, supplement for my genetic things and muscle dysfunction with the appropriate foods and pills, but have medicine to reduce the inflammation. I also take what I need to help out my neurotransmitters, and manage severe pain. My feet get massage to slow the neuropathy. I get whatever exercise I can without causing disease progression. I do tai chi to balance my energy and improve my strength, balance, and muscle tone. (ETA: It took me a long, long time to realize, but this was a bad idea. I thought it was gentle enough to not cause relapse, but after the THIRD time I found myself worsened for weeks or months after a week of very, very gentle tai chi, I figured out it was the tai chi.) I do stretches, and walk, and a very small amount of yoga (just the poses I enjoy). Spiritual fulfillment is number one in my life and sets the stage for everything else.

I like taking care of myself. My eyes, my teeth, my skin. It can be a chore on some days–and during some seasons, most days–but I enjoy it.

So many years were spent in a battle against my own body, trying to take care of it even as I pumped my blood full of toxic medications to fight the infections that were trying to survive within me. And because of that, I’m still here. Ironically, they’re still here, too.

But that season of my life has passed, and now, it feels so good to just take care of me, to really take care of me, and know that everything I put into my body and do for it is going to help it do its best for me (which in turn, is the best for others, also). Because that’s all I have left. I love the amount of self-compassion I’ve been able to cultivate and harvest, not just in the past few years in general but since being off of Lyme disease treatment in particular. There’s something about not having to focus on pathogen elimination that’s very conducive to self-love. Even as any or all of my diseases advance, I’m not “losing the fight” in any way.

It’s amazing after all these years, even with all of my symptoms, to finally not be at war with my body.

What do you do for your body that makes you feel good about taking care of it, so that it can take care of you to the best of its ability? How do you help it along?

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

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.

Having Determination Does Not Always Equal Curing a Disease

© a rainbow at night
© a rainbow at night

I don’t think some people are prepared to hear that determination alone is not enough to beat a disease. You can do everything right and still get worse, and it’s not your fault.

You can’t say being motivated and refusing your circumstances–“I got better because I wouldn’t settle for anything less!”–is going to get everyone well, because it gives those who aren’t so lucky the delusion that they’re somehow responsible.

This post is for you.

The people who stay sick still matter. The people who die from their disease still matter. It is not your fault.

No one talks about these things out of fear of being attacked for it… I guess it’s a lesson to be learned by those who have that journey. As Oscar Wilde said, “Nothing that is worth knowing can be taught.”

a rainbow at night

Guest Writer: “It is healthy to talk about what you are going through.”

[ estimated reading time: 2 minutes 24 seconds ]

I’m here to make another installment to my Life Lessons section, but this time, with the words of a guest blogger:

I’m really tired of “not talking about your illness” equaling “being a stronger person.”  No.  It is healthy to talk about what you are going through. 

Illness is not something to be shoved away and ignored like it is dirty and shameful.  No.  Illness, disability, old age, and dying are a part of life.  It is natural.  It has been with us forever.

Every single human being that has ever lived has dealt with it in some fashion.  Every single human being has died, or will die.  If they live long enough, those still among us will will watch a loved one die.  They will get older.  They will encounter disability in themselves or others.  They or somebody they love will get sick.

For me, it would be unhealthy not to talk about something so inevitable and universal.

I talk about my illness.  I am sure it makes some people uncomfortable and has driven some people away.  But it affects nearly all of my life right now, and I see no reason to pretend like it does not.

— the author of Black Cat Saturdays

No one should be made to feel like they have to deny a part of themselves or a crucial part of their life in order to win the affection and/or acceptance of another. As with anything in life, it’s all about balance. We have to find a middle ground between talking about what we are going through, honestly, and yet not being consumed by it.

I know people on both extremes–those who never talk about it, and those who talk about absolutely nothing else. It is detrimental either way.

The person who never talks about it–perhaps to keep people around, not make others uncomfortable, or stay in denial about their own circumstances–ends up feeling cheated, abandoned, and can lose self-respect.

The person who talks about nothing else, forgets who they are entirely, and sees themselves only as “the person with such-and-such disease.”

But we are more than sick, or disabled, or terminally ill. We still exist, and we still have purpose and love to share. But in order to get to that place, we have to realize–and hopefully be accompanied by people who realize this, too–that we are also people who have to grieve in a healthy manner, who have to express ourselves as we go through this part of life, and it’s not our job to make sure everyone else stays comfortable while we do it.

As written above, we will all go through these things at some point. It’s just that we who are already going through it, simply don’t have the time or extra energy to spend worrying about someone else’s opinion of how much we’re “allowed” to share before they feel inconvenienced…

a rainbow at night & black cat saturdays


I feel the need to share again “The Silence of the Dying” by the late Sara Douglas.

Letting Go of Society’s Expectations (…and Bartonella)

Despite the fact that my brain has been functioning a lot better recently, I haven’t much felt like updating; completely the opposite of several weeks back, when I couldn’t think to save my soul but desperately had things to say! I’m learning a new language, so most of my spare brain energy has been going into that. This minor study will also help me decide if I may be able to attempt finishing my degree come next August. If I cannot, however, I think I’d be okay with just letting it go. After all, I do have at least one degree–even if it’s not what I set out for–and my health is too precious to waste on going to university to finish a degree I may never be able to use, and which may worsen me irreversibly trying to obtain.

I have fought too hard to get to this point, and I don’t want what society says I should be doing to dictate what would actually be best for me. I reject the idea that my only purpose in getting well should be to immediately resume the life I once had, or try to get it as close as possible. If I do reach the point where I am finally stable, I would love to try and finish and become a researcher. Or at the very least, a counselor. But that would take a lot of trust in the fact that I’d still be stable and healthy enough to actually do those things after completing my degree. One of the main reasons I’m disabled is that my symptoms vary so dramatically: I cannot reliably plan even a week in advance, much less years. So if I never again become well enough and well long enough for that, wouldn’t it be better to attempt some type of small job with the degree I already have, than to use up every bit of health I’ve finally gained, in pursuit of something that won’t do me any good? And even doing that would require much more health than just enough to make sure I don’t starve on my own, which at this point is all I can realistically expect, if anything. If I only ever improve enough to take care of my basic needs, I will be thankful.

Illness has taught me my worth is not defined by what I can do, how much money I make, what level of degree I have, or what job I have, if any, if ever. I am worthy because I am here, because I exist.


Okay, let’s see. From the 16th-23rd I was having a typical Lyme flare… How is it possible that this pattern hasn’t changed, practically since the time I got it? Is it really THAT predictable? But yes, severe headache and neuropathy issues, and I also recall being more cognitively impaired during then, as well as thirsty–again, all typical.

I felt it’d be okay to restart my stretching routine a couple weeks ago, so every other day I get some “exercise”! No relapse, yet. I’ve been able to cook a lot lately, also, which is encouraging. It’s still difficult and frustrating because my muscles fail the day after using them, but hopefully that will improve more, soon. If the muscle weakness got worse when I got these infections, surely it will improve as I continue to treat them.

Dare I say that the bartonella eradication is going as planned? The Bactrim is amazing, and I think the bartonella is.. well, it might be gone, or at least, finally beat into submission?! The protocol is to continue treatment two months past the cessation of symptoms. I talk to my Lyme specialist next month, so we’ll see what he says! Then I can start Tindamax to finally treat the Lyme disease! The antibiotics I’m on now do treat it, but only minimally: just enough to keep it from taking over. I’ll be stopping the Rifampin since I can’t take it with Tindamax, but I may stay on a maintenance dose of the Bactrim since bartonella has a crazy-high rate of relapse, and I do not want to go through this again. I feel I’m probably being unrealistic that I should never face it again, with the way my immune system is, but… For now I’d really like to enjoy my improvement.

 

Til next time,

a rainbow at night

Tips on Managing the “Bad Days” of Chronic Illness

Bad Day Ice Cream

How do I deal with a bad day? I thought I’d share a bit, being somewhat of a chronic illness veteran at this point. 

Step one: Recognize it’s a bad day.

You wake up and find that you’re weak without even having done anything. Sitting up leaves you out of breath. Any attempt at movement is met with pain from every involved muscle and joint. You’re probably having a “bad day”!

  • Do NOT succumb to the temptation of, “I feel bad today so of course I’m going to feel this bad tomorrow and the next day and…” because most of the time, that’s just not true.
  • Do NOT start complaining about how inconvenient this is. Your body doesn’t care about convenience, it cares about survival, and your consequence for indulging such thoughts will be the release of stress hormones that will only make you feel worse.
  • Do NOT decide to force your way through the day until your body succumbs to your almighty will. It won’t, and chances are you’re going to damage something or another, pass out, or any number of unfortunate things.
  • But DO remember that bad days happen with any illness, and we can learn to let them come and go.

Step two: Groom *appropriately.*

You’re not exactly going out for a night on the town, but it’s not like you’re never going to see the light of day again, either! At some point you may gain enough energy to sit up and brush your teeth. But while you’re in there, why stop at that? Run a brush through your hair if you can bear it, maybe even use some hairspray, gel, or dry shampoo to fluff things up. You probably won’t be getting a bath that day (and science is constantly telling us we actually bathe too much, anyway), but if you’re missing the scent of your favourite soap, top things off with a quick spritz of a lightly-scented body spray, perfume, or cologne. For most people, little pick-me-ups can help with self-esteem, even if no one else is going to see you.

  • Do NOT feel bad if you can’t even make it to brush your teeth; no spoonie likes to admit it, but let’s face it: It happens. Your teeth won’t fall out, I promise. (My extra sympathies to those living with trigeminal neuralgia or other nerve-related head and facial pain.)
  • But DO at least one small thing to help your self-esteem, whether it’s your hair, changing into your favourite pajamas, painting your nails, wearing your favourite socks, or…even wear a scarf or hat indoors! It’s your “bad day,” you’ll do what you want!

Step three: Plan to do activities that require little-to-no effort.

Sometimes the main goal is distraction. Yes, it is tempting to lie there and try to block out the world, and meditation can be nice, but other times your thoughts can get the best of you and actually intensify your discomfort. All you feel is sickness sickness sickness, and the silence does nothing to help deal with it. So what can you do when you’re too sick to handle any social interaction, but also too sick to lie still without any distraction? Let’s find some ideas.

  • Music. If you need something angry, there’s aggressive music; if you need something to calm down, there are soothing melodies and vocals; if you’re slipping into a sudden downward spiral, there is music to remind you of hope. There’s also the radio. Sometimes music can hurt your ears, but that doesn’t always have to stop you: The usual culprit of this is the frequency of the sound, so by adding a dulling effect using a combination of your music device’s sound settings and and some (soft!) earplugs, you may still be able to listen and enjoy the benefits without causing harm to your overstimulated nervous system. There are even noise-canceling headphones that can help!
  • Online galleries like InstagramPinterest, or Flickr
  • Twitter has a huge community for people living with #chronicillness, all communicating in brainfog-friendly 140 characters or less.
  • Huffington Post, FlipboardIssuuBuzzFeed, etc. Maybe you even got lost on BuzzFeed already, reading that shower link.
  • YouTube, NetflixAmazon Instant Video, Fandor, etc.
  • It takes very few muscles to maneuver a computer mouse, but even fewer to work a touchscreen. Can’t use a tablet, or can’t afford one? Try a smaller, cheap smartphone, and just use your home wireless network to connect to the internet! You are not required to buy or use a cellphone network plan when using a smartphone.
  • Online games. Sites like Pogo.com let you play popular games online like Yahtzee, Hearts, Monopoly, etc, single player or with others in the community. They have dozens of multiplayer games so your friends can even join the site and meet you in the game rooms.
  • Audiobooks via Audible.com
  • Digital books via Amazon KindleYou don’t need a Kindle to read them!
  • Television. Unless you have DVR service, I would personally recommend sticking to programs that are short, have commercials, and have comedy. The shortness of the show means you’re more likely to actually follow what’s going on, the commercials will allow your brain a break every seven or so minutes, and comedy.. well, that’s should be a no-brainer! The newest thing I did was upgrade to a Smart TV, which allows you to connect to your favourite video services (like the ones mentioned above) straight from your television, with no additional hardware or hassle. If they’re both Samsung devices, you can even control it with your smartphone.
  • Do NOT get upset at your brain’s inability to read, comprehend, remember, handle sound/light, or whathaveyou. If a certain ability is beyond your capabilities on that particular day, move on, to something you CAN do. Nourishing negative thoughts about things you cannot control will only bring you further into poor health, and you especially don’t need that on a bad day.
  • But DO practice “switching,” which is the art of moving from activity to activity, interchangeable with each other and with rest, to prevent exacerbating your symptoms. It’s impossible to predict what will or will not get you ill at any given time, so the very best you can do is learn to go with the flow.

Eventually, even with accommodation, any and all activity will get me ill for one reason or another. The worst days are those when I cannot do any of these. It breaks my heart to think that there are many sufferers who spend every day of their life in that state, and it’s even scarier to think that without warning, I could become one of them. I doubt there’d be many of those individuals who would be able to read my blog, but if a carer happens upon this entry, I’d suggest this site, Surviving Severe ME, which has many more tips and suggestions for helping someone with extremely severe myalgic encephalomyelitis get the most out of life and “bad days.” It also has suggestions that may be beneficial for those not so exceedingly ill, but who are still wheelchair and/or bedbound.

a rainbow at night

October 2015: Updated!

Media Portrayals of Resilience in Disability and Illness

[ estimated reading time: 3 minutes ]
A friend and I were having a brief discussion about people with disabilities and how we are portrayed by the media. You’ve all heard the stories: Despite their disability, so and so did ________.  However, how often do hear about the people who are severely disabled to the point that they can’t do ________? (And please don’t mistake me for being bitter, because I’m not. I’ve been there, when “despite having fibromyalgia, I made it to college.”)

This sends the message that disabled people are okay to be around only if their disability still means they can be somewhat-able, if they can still inspire people (i.e. “inspiration porn”), but not if it crosses a line into stopping them from “being productive” (of which unrelenting sickness is an example). 

I feel this is just too scary a concept for most people to acknowledge. Imagine, having to find meaning in yourself and your life when you can’t always be “doing something”! As my friend mentioned, “People don’t know how to place value on someone who can’t work.”

You’re somehow not near as much a hero as those who “don’t let it stop them,” even if you have no choice but to be stopped. We don’t make good news stories, this lot. However, I’m here to affirm that I am no less of a survivor and a warrior just because I am too ill to be inspiration porn for the news stations.

And pity is absolutely out of the question. Don’t pity me, because chances are I may actually have more strength than most people you meet, due to what I’ve been through. Don’t value me based on whether I can lift the gallon of milk that day, or how many university classes I can still take “in spite of being disabled.” Value me because I’ve accumulated wisdom, compassion, because I’m a good person.

An article printed in U.S. News & World Report:

“It is a primary example of what I have been calling the myth of the ‘superkid,’ who walks between raindrops, confronts any challenge and emerges unscarred and unscathed, never experiences a moment’s pain,” says Washington, D.C., psychologist Sybil Wolin…

“The notion we try to put forth is that resilience embodies a paradox,” she says. “We’re talking about the capacity to rebound from experience, mixed with all the damage and problems that adversity can cause. It’s not an either/or thing. And this ‘media resilience’ does kids who are struggling no good, does professionals no good in understanding them, has downright dangerous policy implications, and frankly, gives resilience…a bad name.

I get so tired of observing film and writing where the characters going through these awful situations–illness, abuse, tragedy, or other trauma–are made to appear completely unharmed and “resilient” to the point of pure fantasy. Tuesdays with Morrie, however incredible it may be, immediately springs to mind. It usually goes something to the effect of, “Every day of his life was misery, but he never complained about it,” or, “Despite the haunting memories of her past, she put it all aside and went forth without hesitation.”

NO ONE DOES THAT. It’s wildly inauthentic and really bothers me.

Yes, he may be resilient and strong and continue to value life despite his situation but of course he complained. No, she may not let her past hold her back and yes, she chooses to move forward but of course it was on her mind every step of the way, and of course she hesitated.

Resilience is not some fantastical application of optimism to the point where you cannot see anything else. Resilience is seeing everything very, very clearly and yet moving on in spite of it!

“The greatest human achievement is not success, but facing an unchangeable fate with great courage.” (Viktor Frankl, psychiatrist, author, holocaust survivor)

a rainbow at night