Here’s Looking At You, Kit

© a rainbow at night

This will not be a lighthearted post, but it has been a long time coming, as many of you have probably already suspected. The ole “I’m leaving this blog behind” announcement that’s been a couple years in the making, but of which I’ve only been certain I needed to make within the past six months or so.

For years, everyone has watched me say things like, I’ll post in this way, or that new way, or I’ll try this… But even though I have dozens of half-finished blurbs in my personal writing app (31 to be exact), most of what I’ve scribbled will never make it to the public eye. And I’m okay with that.

I imagined when I got back to a place where I wasn’t trapped in an isolated hell of cognitive confusion and anxiety, I would naturally gravitate back here, to the writing outlet and the people and the support groups that used to keep me going. Then I thought, maybe if I just quelled the desire to explain so much of my thought process, things might flow more easily to the page, while also being more digestible for my readers. Turns out, no, and furthermore, I love explaining my thought processes, and trying to make the breadth of my worldview smaller for some perceived idea of what my “audience” might be able to tolerate, is just another example of how I chronically shrink all that I am and all that I feel so as not to disturb the state of others.

When it comes down to it, as far as I can tell, I really have said everything I needed to say here. It is simply time to close this chapter.

Besides, the ultimate goal of any supportive community is that the members are supported so earnestly and wholly that they cease to require that facet of the community at all. It leaves room for those who still do, and makes room for those who will soon join.

Surely my own aging has a lot to do with things, too. The generation of people with myalgic encephalomyelitis who came before me are now slowly dying out, if not mostly already gone. And my own generation of people with M.E. are becoming less and less well-known; soon we’ll be entering into the years of early deaths, ourselves. Maybe no one will remember that we existed. Maybe no one will have learned from our plight or remember how hard we fought to help each other and society at large stay aware of the truth, believing wholeheartedly that to cure a disease you have to know which damned disease you’re actually studying. Maybe we will never get the help that we have always deserved from those with the most ability to give it, especially as the waters encompassing the ever-changing categorization of “chronic fatigue syndrome” become murkier year-by-year; especially as the knowledge of which disease M.E. actually is fades into history along with us. Because let’s face it:

There’s a reason people with myalgic encephalomyelitis die 25-30 years earlier than the rest of society, even if medicine doesn’t (or claims not to) understand why that is. People labeled with CFS probably do, too, because they cease to ever get diagnosed with whichever disease they actually had. And don’t even get me started on all the terminal diseases untreated Lyme bacteria will morph into! But my point is: For people like me, even if they cured this tomorrow, it would not undo decades of living with systemic disease. And a cure certainly would not save those who are already on their deathbeds.

But aging affects us all, and even as I aim to become more whole in spirit and healed in soul, it is the natural course of things for bodies to gradually lose functioning, and for bodies with diseases to lose it faster. It becomes more and more obvious each and every year that I am blessed to have, with each new diagnosis I acquire, that is not my job nor is it natural for me to keep going at the same pace I did when I first fell ill. Especially, especially at the expense of living this life that I fought like hell to still have. Most of you have no idea just how much, but read on to find out.

Combined with this realization is the trust I now have that the generations following us will make use of the information we’ve painstakingly provided for them, just as we made use of what our M.E. veterans left for us. I have more trust that the invention of social media has done something I could’ve never imagined when I first got sick, which is bring together all the people that the CDC and similar government agencies worldwide tried to silence, and give them a connected voice with which to Act Up during the years they are able. You can muddy the waters and call it whatever you want, but the fact remains that many people are going to get M.E. in the future, and many more are going to be put in the category of CFS or “ME/CFS.” And those people are going to talk, and demand to be studied.

To me, it’s simply a statistical improbability that the invention of the internet, the relative success of social media, and the tenacity of today’s youth should prevent the truth of things from ever becoming known, or prevent that cure. It might be too late for us but it will not be too late for those who follow, as long as those who are called to fight, answer that call. I answered that call when it was my time, and I need to look back at that and feel proud of what I’ve done and how much I contributed, instead of feeling I haven’t done enough.

I used to think there was something wrong with me for wanting to let this go. I used to look at those still holding on to the hopelessness and the anger and the dissatisfaction, and wonder why I wasn’t joining them, if I purported to care as much as I professed. It sounds ridiculous now, when I type it. And I used to respond to the guilt, when others claimed that because my writing was “so good” (even when it harmed me to produce it), or because I still had some cognitive ability intact (even when it wasn’t), or because my knowledge of our history was so extensive (because it was so much easier for people to expect me to do the learning and regurgitation of our info so others, usually others far more able-minded than myself, wouldn’t have to put forth the effort), that it was my main responsibility–in my own life!–to be their soldier. Of course this only refers to the extremists, which are present in all activism communities, but they were telling me and others like me, in so many words: We want what you’ve got, so do our bidding; Don’t deviate from the herd; You’re good at this, so you should be good at it for our sake; Continue on this way at any expense, because think of those who can’t continue at all; Tell our story, not yours.

Now I realize I may have gotten it backwards. They may still be caught in that place because they haven’t found a way to move forward, and I may be leaving because, I finally have.

I suppose there’s really nothing you can do or say in any situation like this, when anyone places their expectations on you to do something that isn’t actually your job, whether it’s an abusive family scapegoating you into taking responsibility for everyone’s problems so they don’t have to face their own shortcomings, or the social justice warriors bullying citizens into feeling personally responsible for the fate of millions while ignoring the larger role top-tier executives and businesses play, or the minorities of society being made to feel like their every action needs to speak for the whole, while society forgets they are just human beings like everyone else, with the same limits and the same needs.

Yes, as it happens more often than I’d wish to recall, I start out thinking I’m the oddball only to realize years later that I was actually responding in a very healthy and reasonable manner. Of course in the past, I’ve made those same mistakes from the other side of the fence, as a younger, more immature advocate. Don’t get me wrong; I’m not any better than anyone else. I just know different things now, and I have different strengths (and weaknesses), and my actual job, is to put that knowledge to use in my everyday life.

Here’s my question for you: What things are you doing, what are you still participating in that you might have actually outgrown?

Are there things you’re doing just because a lot of others in your community do them, but that don’t really resonate with you?

Are there people you tolerate because “the group” likes them, even when you see right through them AND the harm they cause?

Have you outgrown your community, but stay, remaining stifled because you don’t know what’s next for you, because at least where you are right now, you know the rules?

What are you doing in a particular way just because it’s always been done that way by others?

What are you doing just because it’s expected of you, when it goes against everything you think your life should be?

Stop participating in activities that stifle you. Don’t follow the herd when they jump off a cliff. Stop tolerating those people. Leave the places you’ve outgrown. Don’t stay in a situation that harms you just because someone expects you to play the supporting role to their center stage. Stop letting domineering personalities make you believe your most significant worth is how well your actions maintain their happiness. Know that it’s okay to move on, and know that you’re the one who gets to decide when.

It is my wish that every pair of eyes reading this right now will discover the full extent of their personal power to make any and all of those things happen.

In what I guess is my “send off” message, I encourage the same theme I’ve had going here for the past five or so years: If something in this post has prompted you to consider your life, let yourself consider it. More than anything, I want to help people see there are ways to do and to be what they want, and that maybe by witnessing someone do or become whatever those things are, that they find their own courage to do or be it, too. I feel very blessed that I’ve been able to do that with this particular blog over the past decade, and I plan on continuing to use my writing to empower.

Because I’m going to continue being who I am. I’m always going to be the advocate, I am always going to be the one who fights for those who can’t speak up and I am always going to be the one who speaks the truth, no matter which sphere I’m a part of at any given time, no matter which illness or injustice or imbalance I have to stand against. I will always be a little “too much” for some people and “not enough” of something for others. And I will always fight so ferociously for myself and others because of the depth of my love for us all.


Brace yourself for this next part if you’ve known me for a while, as it may come as a shock, and may also be triggering to those with PTSD, particularly Complex PTSD.

To state the bare facts: I have been traumatized and abused extensively in my lifetime, both in childhood and well into adulthood by sociopathic narcissists in my “family” of origin. I moved from here long ago, but was forced to move back to physically survive after I contracted several infections at once and became so ill that I was just barely evading organ failure at the worst of it. (Your organs start shutting down after your oxygen concentration dips below 80%, and mine was, well, exactly eighty percent.) But the only sane, truly loving, authentically compassionate person in my family died while I was still undergoing treatments. After that, my day-to-day existence became dependent upon “help” from these extremely abusive people.

Accepting help from a “narcopath” is the same as signing a contract with them ensuring they get full rights to abuse you in any way they want, with the hidden clause that you are not allowed to protest or they’ll systemically and immediately take all of that assistance away, usually in the order of most-critical-first so as to have the most impact.

I vividly remember the first time I fought back against being abused after my last loving family member had passed away. What followed became a clear message of what lengths they’d go to show me just who had the power now, and that it was no longer me. I wanted to call the police, but I knew that drawing that much outside attention to what I was experiencing would only guarantee even worse verbal, emotional, financial, psychological, and indirect physical abuse in the short-term AND long-term, as punishment. As it turns out, I experienced more and more of all those things, anyway, as the years went on. Abuse doesn’t get better, only worse. If you can identify with any of this, start planning your leave.

Indirect physical abuse is a type of physical abuse where the abuser intends to cause you physical harm, while stopping short of actually hitting you because that would leave proof which could get them arrested. For example, stranding a wheelchair-bound person somewhere without their wheelchair, or purposefully triggering someone’s PTSD (or any other illness) with the intention of causing them visible anguish. There are those in my extended family who have even been thrown into comas when their psychopathic partners intentionally triggered them into violent asthma attacks in order to watch them suffer. These incidents are usually followed by short-lived “honeymoon” periods to prevent the victim from catching on and trying to leave, but the cycle of abuse wheel will always keep turning.

There is a massive element of psychological abuse inherent in indirect physical abuse, because the perpetrator can usually gaslight the victim and even witnesses, including legal authorities, into believing that the victim “did it all to themselves,” since there is no physical mark left behind to help prove the origin of the harm was the abuser. Even though they can spend years learning the victim’s triggers and weaknesses so as to use them as weapons later on, it is much more difficult to prove malicious intent, and the abuser is usually very careful to only show this side of themselves to their victim. It is the reason “house of horrors” regularly show up on the news with neighbors claiming the perpetrators appeared good as gold to the outside world. Because these types know what is right and what is wrong, and which facade they have to apply, and when, and in front of whom, in order to continue hiding in plain sight.

There are innumerable reasons why I was forced to stay in that situation for so many years, and I’ll just have to trust that my readers will take into consideration my intelligence and my ability to make sane decisions, even when choosing the lesser of two evils. They treated me this way, for as long as they did, because they knew they could get away with it given the circumstances. When the circumstances changed and I became stronger, both physically and mentally, the abuse worsened in an attempt to keep me subdued. They should all be in jail for the things they’ve done to me and others, and in fact some of them actually are, for different abuses. But I have finally escaped from them, all of them, and I have a new roof over my head in a much safer location (unfortunately I don’t own this one, but). I have money with which to eat and survive, and no one knows where I now live.

© a rainbow at night

I haven’t escaped unscathed, but in general, I am much more sound of mind than I probably should be, given my experiences. I wish I knew definitively why that is, but from my perspective, I think I owe this in part to:

  • Looking at things for what they are, even when those things are horrible, something not everyone can do;
  • Spiritual practices, including prayer, meditation, an unshakable belief in some sort of Universal Higher Power, mindfulness, and my understanding of the bigger picture (i.e. I am not my body but the divine spirit within this body);
  • Learning everything I can about narcissistic abuse and toxic family dynamics to remind myself it’s not “just me,” especially when I begin to falter and make excuses for them; and even
  • My near-death experiences, which helped remind me of the beauty and preciousness of life, and that abusers are only a small part of this world who can never override all the wonder and joy to be had here for those who are looking. Try as they might to control the reality of others, inflict purposeful harm, and prevent their victims from experiencing or showing happiness, they cannot override the dominant, divine forces of this planet.

And who knows what else. Of course this has come with a ridiculous amount of survivor’s guilt about being able to see through the madness and escape while others still believe in and suffer from the abusers’ alternate versions of reality… Which is probably why the survivor’s guilt related to other things–surviving hurricanes, floods, and the same diseases that have killed so many friends–has affected me so severely: it’s cumulative.

If I’ve gained anything from this situation, it’s that I have found and intimately know the real inner me, that still, small voice that is my Highest Self, and I know this part of me is always, always, always okay, no matter what. I’ve talked to people who don’t even know that place inside them exists, and yet it is the only reason I have been able to survive my life. I have, however, exhausted the limits of what I can handle on my own, and now it’s time to get help. I need treatment, and because I don’t have to be around the very people who are the reason I need that treatment in the first place, I can finally go get it.

I get to build a new life that fosters even more healing from all I’ve had to endure, including the life-altering disease that is PTSD. And I know I can do that, because I’m not afraid of facing harsh truths, and throughout my life I have always taken whatever anyone intended for my harm and transmuted it into knowledge that helped me become more loving, more joyful, more compassionate, and more resilient. I see my beauty for their ashes, and I want to use this next phase of my life to help others find theirs.

“But I’ve got a job to do, too. Where I’m going, you can’t follow. What I’ve got to do, you can’t be any part of. …I’m no good at being noble, but it doesn’t take much to see that the problems of three little people don’t amount to a hill of beans in this crazy world. Someday you’ll understand that. … Here’s looking at you, kid.”

Casablanca (1942)

 

Well, guys… I’ll see you around.

— 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:

Reflections on a Year Lived with Illness

Welcome to 2014. May all beings be peaceful.∞May all beings be happy.∞May all beings be well.∞May all beings be safe.∞May all beings be free from suffering.

I had all sorts of things planned following the end of my treatment. It delivered me a burst of energy, alongside my new-found awareness that if there was anything I wanted to do, I needed to do it now. And I had so much on my heart to do, experience, and visit. And I did them all! But I think it led me to believe there might be something wrong with me, now, for not wanting to do so much. The truth–which I just realized after starting a documentary called Raw Faith–is there simply isn’t anything calling to me right now. In perfect honesty, I feel I’m being called to let go of so much, now. And maybe that is okay! If every season is beautiful, and nature is perfect, then maybe I’m right where I’m supposed to be, and what I’m supposed to be doing right now, is just this. I’ve spent a lot of brain cells wondering if I had unintentionally turned off my intuition in the wake of so much loss from the past few months. Until today, it never occurred to me I could still be right “on track,” even in my assumed inactivity.

Last year was a whirlwind, but mindfully so. I wanted to visit close friends, revisit old friends, make new friends and visit with them, too; visit with family I’d never seen, or rarely saw; I did all of this. And I wanted to get out more because I was so tired of only ever getting out for doctors… And did I!

I spent three weekends in a row in the French Quarter, and for my birthday I stayed there for a week. I went to orchestras, ballets, aquariums, zoos, beaches, coffee houses, new restaurants, tea rooms, historic landmarks, stayed in the ritzy hotels with ocean views and two-room suites, swam in water fountain pools, saw the Dalai Lama, learned more French, took up Tai Chi, redecorated my room, sold my car for a newer one, “read” a new audiobook every month, dressed up for every holiday, spent my birthday with my best friend, fell in love, bought tons of flowers, ate tons of amazing food, took tons of amazing pictures, listened to tons of amazing music, and saw tons of amazing films, in theatre instead of at home.

I also slowly but surely upgraded my technology (even my bed) to better suit my ever-changing needs, from a bluetooth speaker that negates the need to get up and change CDs, to a television that’s now mounted on my bedroom wall with a resolution I can actually see and the colors of which I feel are a spiritual experience. These things made being in bed in between all of those excursions–with however much pain and relapse–much more easy to bear. I only went to the ER twice.

There was also heartache. When you begin to change, either your circle of friends changes along with you, or the Universe asks that you let them go. Not everyone is meant to stay in your life forever; most aren’t, actually. One friend and I parted ways early in the year, but it was safe to find closure, so we did. Another had patterns of making it unsafe to share my feelings, so it didn’t end with the closure I’d hoped, but I ultimately had to let them go, too; at least I learned self-care from it. Another simply didn’t wish to find closure, and left. Two did that, actually. I had a girlfriend for several months, but due to dishonesty it ended badly, even though I am thankful for the lessons it brought, including a profound awareness of my own commitment to authenticity, something I am entirely unwilling to sacrifice for anyone or anything. Little did I know, I had already met the woman I would fall deeply for, afterward… ;) She and my best friend for the past thirteen years, join me in 2014.

© a rainbow at night

I don’t expect this year to be like the former. I guess for a while I expected to have a similar desire for activity, but I don’t, and I’m okay with that now. My fatigue is so much more prominent, though my pain levels have stabilized for now. In March, a good friend and I shall attempt to drive to California to see the Redwood Forest and San Francisco. That’s my big plan for this year, but even if we only end up driving aimlessly, instead, it will be wonderful to adventure with someone who shares my appreciation of nature.

You may have heard the quote, it doesn’t matter what you do as much as who you’re being while you do it. 

Who do you want to be for the next 334 days?

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

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

 

“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

For right now, this needs to stop.

As far as my relapse conundrum, I could not continue treatment, after all. I just.. stopped. I am still so emotionally drained, and my body is at wits’ end. I’ve been off antibiotics for a month, now, and I’m flaring at the moment because of the usual beginning-of-the-month bug-flare that happens… Only this time I am not protected, so it’s scary to think of what they’re doing in there! How can one feel this close to having the flu and not actually have influenza?

On Samhain I ultimately decided to take another two weeks off and just restore my body as much as I can, with only the necessary things and as few medications as possible. I don’t think I have any yeast problems from the long-term antibiotics, but I’m going to take a few doses of candidiasis treatment, just in case. And then I’ll talk to my LLMD and see where we can go from here.

I can’t thank you all enough for the responses to my last post. At any given moment, I am ready to reach out for help, or curl into a ball and never speak again. It’s a constant back and forth. I want to say, “the disease is what makes me want to retreat,” but it’s not even that. It’s my response to it. It’s knowing that I do have some control here, I do have a choice, and I’m terrified of making the wrong decision. Continue this grueling treatment regimen and make myself worse, an inevitable decline, or forego treatment completely and still begin an inevitable decline. But I’ll tell you what.

My intuition says to stop.

And I always, always listen to it. It says I need this break. It says I could use it to heal my body as much as I can, and in two weeks I may know clearly again what next step to take. I can’t believe in God as much as I do, and ask Him to guide me, and then not follow what I feel is the right course of action, even though I can’t explain it.

That became even more apparent today when I really wanted to take my antibiotics again, because the thought that these infections are inside me running amuck and I have nothing to stop them, is very frightening. It was then that I noticed how strong my conviction was to not resume my treatment…

Anyone think I’m crazy, yet?

I can’t help but notice that the idea of treatment helping me, which has always been my motivator in the past, has not even crossed my mind. It’s as if somewhere inside I know that to continue with it at this point in time would do me harm. Logically speaking, I think that not treating is also pretty bad, but somehow, not as bad as taking these medications; at least not right now.

So that’s where I’m at.


I also had a visit with my new neurologist, and it wasn’t as productive as I thought it’d be. Part of that is my body’s fault because I only got to ask him half of what I wanted–I was so bad-off that morning I almost passed out in their waiting room.

In response to my relapse he said, “There will be good weeks and bad weeks, good months and bad months.” And apparently when you tell someone you have myalgic encephalomyelitis they don’t think twice about you having severe daily headaches and eye pain (i.e., “I guess you do have headaches”). But he’s a good doctor who at least didn’t outright call me a hypochondriac. I’ve noticed with having this lesion on my brain, people tend not to think you’re “just exaggerating” quite as much. He said it was post-infectious demyelination, but it wasn’t changing in size so he didn’t feel I needed a repeat MRI for right now. My various damaged nerves are healing up, so that’s a good thing! So much so, that he didn’t  think I ever had facial palsy…! Luckily that’s in my notes from my last neurologist. :\

He also thinks all my movement disorder problems are Tourette’s… Which is wildly inaccurate, but because he thinks Tourette’s Syndrome is just a “group” of movement disorders rather than its own thing, and that it should be diagnosed only after the other movement disorders have been ruled out, it would make sense for him to say that. I can always see that movement disorder specialist should things progress even further, so. (I know it’s not Tourette’s because, while my TS does act up when I get new infections, it acts up completely differently than the problems I’m currently having.)

He said do NOT take any triptans for my migraines (the main reason I went to see him, actually), and gave me Cambia powder to try for my next attack. Which my insurance won’t cover, of course, so I’ll rely on samples, like the other three medications I can’t afford. He diagnosed me with complicated migraine and said I really should be on a preventative medication with this type of diagnosis, but I mentioned that not ALL my migraines do the whole “Hey I Look Like I’m Having A Stroke” thing. I’ve had them fifteen years (or at least that’s when I was finally diagnosed), so it makes sense they’d eventually progress, but I only get “those” maybe once a month or every two months…which is probably not very good, but good lord I just can’t handle another medication right now, especially when my options for preventative medications are very limited! I think he actually ran out of ideas for me since Topamax is practically my only choice and it lowers my intracranial pressure. :\ But at least Migraine is a well-studied disease and, should I live long enough, they will probably come out with something new, soon.


The best news I have is: (1) I got to visit a friend (actually, I returned to the scene of the crime of where I caught Lyme disease), and I recovered pretty easily from it with all the careful planning and tailored resting schedules. And (2) I invested in a tilting overbed table. I don’t think I have words to describe how useful it is. How have I never thought of this before? Person who is in bed most of the time, desks that go over the bed… Regardless, this thing is amazing. What I really love is the little mini-desk on the side that always stays flat so you can put stuff on it!

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.”)

How I Forgave the Doctors That Called Me “Crazy”

jagged leaf shaped like a heart rests upon wooden boards on the ground
© a rainbow at night

This year I feel I’ve really evolved as a human being. A lot of my focus has been to get rid of the anger I’ve felt. One major thing I finally let go this year, actually, was the resentment aimed at those who got to enjoy things I may never get to do, ever. Sure, I couldn’t be angry at friends or family, that was easy enough, but put me in the room with a stranger who’s telling me about how they’re going to a party that night with all their friends, and… You get the idea.

I owe that in huge part to reading Toni Bernhard’s How to Be Sick: A Buddhist-Inspired Guide for the Chronically Ill and Their Caregivers, for actually giving me the tools to know how to do that: How to acknowledge those emotions without feeling I was a bad person for even having them, and focus on how much more wonderful it was that they did get to do those things, than it was that I could not.

But I honestly don’t have any explanation for how I came upon the realization I’m about to share in this post, besides that my brain has apparently developed some kinder, more mature, more well-rounded ways of viewing things I’ve thought a thousand times before.


Probably close to 95% of people who have either Late Stage Lyme Disease or Myalgic Encephalomyelitis–or, if you’re like me, both–did not arrive at that diagnosis very easily. (As those are the main two diseases I have, they’re my focus, but feel free to apply this to similar illnesses.) No, it probably went something more like:

  1. Go to the doctor expecting a quick fix for unusually-persistent symptoms
  2. End up getting passed around to every specialist known to medicine because primary care physician has no idea what’s wrong with you
  3. Get called crazy by every single one of them when the tests either come back negative or don’t show anything significant enough to explain why you feel like you’re dying
  4. Possibly get prescribed the most strongly contraindicated “treatment” for your disease because no one knows what you actually have, yet, which makes you immeasurably worse
  5. Get called crazy a few more times, and thus end up being evaluated by numerous psychiatrists who don’t find anything wrong with your mental state, or who
  6. Blame everything on a mental disorder that doesn’t actually cause anything you’re experiencing
  7. Finally get the correct diagnosis years later, through what seem like the most random series of events that ever played out in your life

Am I right?

All in all, the stage of acceptance known as “anger” doesn’t really ~just go away~ like some of the others.

The resentment and anger at all the doctors who could have helped you sooner had any one of them just not been so determined to say it was “all in your head”; the anger at those who said there was nothing wrong with you, when you actually had a progressive disease; the resentment at those who thought you were faking just because the tests were negative; the anger you experience all over again at remembering any and all of the horrible doctor visits where you were pleading for them to do something, anything, only to be told you just needed to get out more, and probably see another psychiatrist.

Trust me, I’ve been there. So when this sort-of-epiphany hit me, it was like a ten-year burden had been lifted off of me:

Did I truly, honestly think, that any one of those doctors who called me crazy, had any idea that I was actually suffering from a progressive neurological disease? Did I really believe that those people, those fellow human beings, somewhere inside knew that I was dying, and just decided to recommend exercise and antidepressants for the sheer fun of it?

If they had known that what a terrible disease the original “chronic fatigue syndrome” was–that it was actually myalgic encephalomyelitis, that it was made worse by exercise, that it was progressive in 25% of cases and fatal in roughly 1 of 20–would they have just told me to “get out more,” or “exercise more,” or “get back to work, you’ll be fine”?

If they had known that chronic Lyme disease (or bartonella or mycoplasma) exists where I live–that it would lead to multiple sclerosis, that the tests are often negative even if you do have it, that I still needed long-term antibiotics based strictly on the clinical presentation–would they have told me there was no way I could have it, that it was harmless even if I did have it, or that it was “only fatal in people with AIDS” and that there was “no reason to treat”?

Absolutely not. What kind of monsters did I think these people were?

No one in their right mind, especially a doctor who has sworn to Do No Harm, would know the truth of a disease so destructive and still call their patient crazy.

If someone was suspected of having MS, or HIV, or cancer, or a neurodegenerative disease, these physicians would have done everything they could to identify and fix the problem. If they had known what I was up against and the right approach to treatment, they would have done it.

But they didn’t know. And that wasn’t entirely their fault. Sure, there are always some doctors who go in it for the money and don’t care that much one way or the other, but they are few and far between. And sure, a doctor who keeps up to date on the latest research and alternative therapies is going to be more open-minded when it comes to a rare case. But when it comes down to it, there is a whole cluster of reasons why most of the specialists we saw were completely incapable of giving us an accurate diagnosis, the biggest of which is lack of information.

The reason we patients advocate so much is because in our hearts, we know that if someone else has the information we didn’t, they might not have to wait so long and suffer so much before getting accurately diagnosed and treated.

We also can’t forget that it’s not 100% the doctor’s responsibility to figure out what’s wrong with us based on absolutely nothing: We have to be honest and not afraid to be our own advocates. My LLMD says: The passive patient never gets better.

Now, there are some exceptions. There are doctors who know the facts and, because of legal reasons and public position, choose to turn and look away whenever one of “us” come their way. But that is also very, very rare. Most all of the dozens upon dozens of specialists had no idea what was wrong with me, what was wrong with you, and could only give us the best advice they knew, based upon what they thought was happening. In hindsight I really do understand how someone could think I needed psychological intervention, if they had no clue that my disease really did do all the things I was reporting.

You don’t throw a paralyzed child into a swimming pool–as happened to one internationally-recognized M.E. patient–to try to “snap them out of faking ill,” if you honestly believe they are sick. You do it if you honestly believe they are faking ill, because you have no knowledge of what M.E. actually does. If there is anyone to be upset with, it’s those in charge of spreading facts about these crippling diseases, and who don’t do it; not the doctors who have been armed with information they believe to be true, who just so happen to be completely misinformed about what we have.

So I finally just stopped being angry at them for not doing what they weren’t even capable of in the first place.

You may have heard before that, Forgiveness is letting go of the hope that the past could have been any different, a quote popularized by Oprah although she’s not who originally spoke it. And in my realization, I also let go of the thoughts that any of the doctors who had mistreated me out of their ignorance, could have ever treated me any differently based upon what they knew. If they knew better, they would have done better.

I am now going to instead focus on how blessed I am to finally have my diagnoses, and be glad that I am one of the lucky ones who still had time left to begin treatment. I hope this can help some of my readers move past their anger, also, perhaps just a little more quickly than they would have, otherwise.

Be blessed in the New Year, and always!

a rainbow at night

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

Fireflies, Coyote Arias and Friendships Adrift (via My CFS Life)

I’ve been struggling a lot again lately with feeling marooned. In my spirituality, I am increasingly aware that I am intended to live differently, and that it is both grace and blessing. That doesn’t make it easy – this feeling of being left behind.

As I stand here at the edge of my world, on my shore, friendships drift into the distance. Caught by other currents, destined for other ways of life and sailing for distant lands I can barely remember exist; they embrace lives I cannot have and for which I often ache. Ever greater expanses separate us and though their signal flares can sometimes yet be seen, I cannot quell all pangs of sadness as I stand with my feet planted in the shifting sands of my shore.

I look over my shoulder at this place where I stand, there is great beauty here and much to be discovered, but it comes at a price and I get so weary of paying. Sometimes supply ships come to my shore, my happiness to be among them mixed with challenge to my peace. They bring things I need and also tales of larger life that can be hard to hear, fanning the ember of longing into dangerous flame. One ship’s crew, a frequent visitor in the past, asked me how I manage here and when I said “I pray and God helps me” they left with laughter. Oh well, they asked and what was I to do, lie? I did not preach, only answered a simple truth.

Some of the ships arrive less and less frequently, more fulfilled at busier ports of call. Some, I suspect, will not return, and though difficult to accept – it may be for the best. I can do nothing to change it anyway. Read More

via My CFS Life

Self-Respect and Friendships: Standing Up for Yourself While Chronically Ill

black and blue butterfly temporarily caught in spider's web
[ estimated reading time: 5 minutes 51 seconds ]
If you live with chronic illness, you may put more thought into not making people angry than the average person. You don’t want to risk rocking the boat because you’ve learned that “friends” leave you quickly enough as it is, even when you’re being perfectly kind. Not in obvious ways, no, but by “losing contact,” “being busy,” or just choosing not to say anything. You feel scared to say what you really feel, at the risk of actually making people angry, because the ones who have been wanting an “out” use this as their excuse to finally leave. Others might think these things don’t really happen, and surely we thought at first that it would never happen to us–we have the “good” friends, don’t we?–but it does.

“After a while, and only a relatively short while, people grow bored with you not getting any better and just drift off. Phone calls stop. Visits stop. Emails stop. People drop you off their Facebook news feed. Eyes glaze when you say you are still not feeling well. Who needs perpetual bad news?

“This is an all too often common experience. The end result is, of course, that the sick simply stop telling people how bad they feel. They repress all their physical and emotional pain, because they’ve got the message loud and clear.”

Well, I’m here to reaffirm that I don’t care if I make anyone angry anymore.

Last year, my health took its second drastic turn for the worst that landed me here today. I experienced a lot of actual abandonment, even from my good friends, the ones I absolutely expected to be have been there. In my most crucial moments–when I needed someone to bring me to a doctor, when I needed help in packing up the house I’d become forced to leave–everyone from friends, to family, to friends of family, decided there were more important things to do. They just. weren’t. there. Even my landlord, who had treated me like I was her own for three years, bringing me dinner and checking on me when no one had seen me outside for days, abruptly ignored that I was losing my fight with life itself and turned on me over the last $175 of my rent (which I did pay her). These events severely damaged my trust and belief in a supportive community that took care of their own.

One of my M.E. support group members just died because there was no one there to help during her time of need. These things do matter.

And it’s so heartbreaking that we’ve been brainwashed by society and past abuses into thinking that it doesn’t matter, into thinking we’re really not worth the time and bravery it takes to care for another human being… Because we are worth it.

It’s still a struggle for me to find a balance between forgiving them for not realizing how much they hurt me, and not letting it happen again. I know people aren’t perfect and I know I will accidentally hurt others just the same. It happens. But I’ve recently started to backslide. I wanted to “settle” and let people back into my life who haven’t been there, and.. for what? Out of Guilt? No sense of worth? Fear of being alone?

But what purpose could you possibly have in my life if you’re only willing to be a friend when I can come to you, when I can be your idea of fun, or when I can help you?

What purpose could you possibly have in my life if I’m in a hospital, or feel like I should be in a hospital, and you can’t even be bothered to call, check in, or heaven forbid even send a text or e-mail?

What purpose could you possibly have in my life if, when I’m unable to be the person I was prior to illness, you jump ship, deceptively referring to it as “giving [me] space” and decide that we’ll talk “when [I’m] better”?

No.

If you leave a person when they’re down, if you don’t think they’re worth staying in contact with just because they’ve gotten a disease that makes you uncomfortable, don’t be surprised when they don’t want anything to do with you, whether they get better or not.

As the adage goes, “If you can’t handle me at my worst, then you sure as hell don’t deserve me at my best.” And that I’d personally even think of becoming friends again with someone who left me–so that when I succumb to disease in the future, they can leave again?–only shows me where I still have work to do.

I don’t want to be that person I used to be, who let destructive trespasses slide by without saying anything, who allowed others to neglect their side of the relationship but still come to me when they were having a bad day. I need to feel appreciated just like everyone else.

I am so much more than any disease, and if you can’t see that, then save us both the hassle of pretending we’re “friends” and just get lost. I’m tired of placing my worth and value in the hands of people who don’t think I’m worth it.

My ultimate decision was to stop trying to “keep” everyone and instead use my very precious energy on those who are there for me. Everyone else, I just let them go. And oh, it hurt to figure out which ones didn’t think I was worth the effort, who weren’t strong enough to deal with this extra challenge with me. It hurt even more to have assumed someone was one of the “good” friends, only to find out otherwise. That was the worst.

But in the end, what remained was only true friendship, because instead of wasting time catering to others’ needs who didn’t give a second thought to mine, my energy could be devoted to those who would actually return the love and consideration and support when it really counted. If a relationship doesn’t meet those standards, it isn’t truly a friendship at all. 

It does matter to have people around you who are mature enough to handle what Real Life entails. At this point in my life, I don’t have energy for anything less.

“I am sick of this tawdry game. I am sick to death of comforting people when all I want is to be comforted. I am sick of being abandoned by people for months on end only to be told eventually that ‘I knew they were thinking of me, right?’. . . I am tired of the discomfort that surrounds the chronically and terminally ill. I am tired of the abandonment. I am tired of having to lie to people about how I am feeling just so I keep them around.”

Source: “The Silence of the Dying” by the late Sara Douglas

a rainbow at night

“The times weren’t right, and I couldn’t talk about…” needing a wheelchair.

There are many people who get a wheelchair before it becomes a full-time necessity.

They get it as an optional disability accommodation; an option enabling them to more easily access places they otherwise couldn’t without great difficulty; an option saving them energy during long trips; an option helping them keep up with able-bodied people when they otherwise could not; an option improving their potentially-impaired quality of life. This is a very smart thing to do, I think.

I am not one of those people.

I’m in the other group, of people so stubborn-to-a-fault, so full of unintentional, internalized ableism we won’t even think about using an accommodation unless it becomes impossible to deny. Because this is, at its core, a fight with and denial of reality.

After noticing how much further my umbrella cane helped me walk, I was fine with learning to rely on a cane. And in the past, I did entertain the idea of a wheelchair because I thought it’d be a shame to miss out on things just because of an inability to walk and/or stand for very long. Then the reality that is myalgic encephalomyelitis caught up with me, and how disastrous the consequences would be for using my arms to propel myself. And who was I to decide that my family or friends were going to have to push me, just because I physically couldn’t, just because a wheelchair would have made things “easier”? It’s one thing if there isn’t a choice, but I couldn’t allow my mere “preferences” to involve other people to that extent. To avoid deconditioning, I felt if I could still walk at all then I needed to do it whenever possible, but without causing relapse. So you see, it’s not really having a wheelchair for occasional use that disturbs me, nor is it even needing one when I go out, like to doctors. It’s being wheelchair bound that scares me, which is what would need to happen before I ever broke down and got one.

Well.

It was a month ago today that I realized I had entered into a new level of disability. I’ve become unable to write (by hand) more than a few sentences, when I used to be able to write a letter or card. I cannot chat on instant messengers but a few times per month, when they used to be a vital part of my keeping connected with friends. My blog entries now take several hours, even days to type. My muscles have started to give out way more easily and more frequently than they ever have. All activities in general are much more limited.

It’s not that I purposely avoid these things to better my chance of feeling well later, like so many psychologists would have the world think about ME patients. No, it’s that even if I wanted to do them and just “pay the consequences later,” more often than not I simply couldn’t.

There are several disability scales out there, including some specific to the effects of particular diseases. For instance, I wouldn’t be able to accurately rate myself on a scale intended for MS patients. The easiest one for me to use is the Hummingbird Foundation’s M.E. Ability and Severity Scale. As of where I’m at right now–with 100% being fully recovered–I would be at 5% physical ability, 20% mental ability (thanks to olive leaf extract), and 10% for severity of overall symptoms. Of course I have days where I am worse than this, and thank God I still have days where I am better than this, but in general, that is where I’m at. And it’s all happened so quickly… I knew I would return to this point and then some, without treatment for these infections, but…

So perhaps it shouldn’t have come as so much of a surprise, when my mother and I had The Wheelchair Talk, today. For some with progressive diseases, as I mentioned earlier, getting a wheelchair to help you get around on bad days and outings isn’t too difficult to wrap your head around, especially if having more accommodations enhances your quality of life. But again, I’m not that person. I’m the one who refuses to buy into a convenience before it becomes necessity because damn it, if there’s any ability I have left, I. am going. to use it. and no disease is going to force me into a decision before I’ve decided it’s time to deal with it… Right?

It’s much easier to accept a mobility aid, or any accommodation, if you can still technically function without it, even at a reduced level. Then it isn’t so much I am being forced into this against my will as it is I’m doing the smart thing and using all available resources to manage my disability. Especially when the decision to accept the accommodation means forfeiting independence and becoming even more dependent on others. It took me six years before I could even say the words “I’m disabled” instead of “I’m on disability.”

But I’m at that point in any progressing illness where, even if you realize using mobility aids will allow you more accessibility, you still battle with yourself, for any number of reasons. In my case the reason is, this step just reaffirms how bad things have gotten.

I’m exhausting my treatment options one-by-one, nothing is working, I’m going downhill fast, and it’s just a very scary situation. Which I do plan to deal with gracefully, I hope, but dealing with something doesn’t take away the harsh facts, or the possibility of worse things to come. Even though I cannot stand for more than a few minutes, effectively restricting my trips out to places with available scooters or wheelchairs, the ones I’ve been needing to use for the past few months thus I’m effectively already wheelchair-bound…in my head, I don’t really have to identify with this level of illness until I decide to buy one. I might be bedbound because I have to lie down 95% of the time just to maintain stability, but I can still stand up for a few minutes, and those few minutes mean so much to me because I’m well aware there’s no guarantee I’ll always be able to do it. Honestly, it’s not like “I never thought this could happen to me,” but… Now it is.

The conversation with my mother happened after I wanted to go to the store a block up the road. I’ve been wanting to go for quite some time, but had been waiting until I thought I could somehow do it on my own… And that time came. But then I walked the 80 feet/24 metres to go tell her I was going to attempt getting dressed and such, and instead had to lie down. Silent tears soon followed. I couldn’t help but feel overwhelmed, because I knew this was it. If I wanted to at least savor my ability to sit up, we were going to have to go through with it. To my surprise, she must have been reading my mind, and was the first to bring it up:

Mother: …Why don’t we see about getting you a wheelchair?
Me: …Yeah.
Mother: No, really…
Me: I know. *smiles weakly* It’s just… When did this happen, you know?
Mother: Yeah… *sighs and looks away* Yeah.

And so, here we are. I suppose the next doctor visit I have, we’ll ask how to go about getting a wheelchair covered by my insurance. If they don’t, I might can get one on my own with my credit card, such as this modestly-priced one from Invacare. (The free shipping option is nice, and it also comes in red!) God will provide me with whatever I need, I know this much by now. I have the cane, the oxygen, the hospital bed, and so if it’s time for a wheelchair, too, then so be it. I know I’ll come to accept things, even if it’s not this exact moment.

I have no idea what’s going to happen next, if we’ll find a treatment breakthrough and I’ll start to get better, or if things will get worse, or maybe things will get worse but then get better… I don’t think I’m supposed to know. Whatever happens, this blog is my testimony, of someone living with severe M.E., an illness which on its own can disable or kill a person. And Lyme disease, and bartonellosis, they too can be disabling or fatal under the right circumstances. And yet somehow I keep on going… Honestly, with all that I have within me, I think it’s a bit of a miracle that I keep going at all, that I’m even still here to tell everyone about it. Perhaps in the future, I can look back on this entry and realize that I made it, that I improved. But even if I don’t, is that okay?

“And I’m praying that we will see
something there in between
then and there, that exceeds all we can dream”

a rainbow at night

[Edit: Five years later, and I am, indeed, able to look back on this entry and realize that I made it.
Lyrics by Flyleaf.]

When You Do Everything Right But You Only Get Sicker

[estimated reading time: 4 min 3 sec ]
The past several days, I’ve encountered more suffering and symptoms than is typical, including more Postural Orthostatic Tachycardia Syndrome (POTS), and losing a fairly decent chunk of time (read as: Tuesday), which hasn’t happened in a while. Today was the first respite I’ve had from this mild progression. I had a few things I was going to write about, like what it’s like during “A Day of Bartonella,” which was raging on the 28th/29th of November, and a small rant I had in my head for a couple days about.. something I can’t remember anymore, but. I can see now that’s just not going to happen. So I’m going to just let it go. Which is a small triumph in and of itself, really!

Basically, starting my herbs did not work out. I herxed, flared terribly, and got cardiac irregularity after just a couple days, so I wasn’t able to continue them during the final week of my Sporanox like my doctor had wanted me to. I’m not pleased with this, but what can you do? I am doing everything possible to beat this, and if it’s not enough, it’s not enough. I really have to stop feeling personally responsible every time my body fails me, and get rid of the idea that it’s somehow the other way around.

Anyone with chronic illness is usually surrounded by one or many people who are convinced if only the “sick person” did things their way, all would work out. You’ve spent the past decade with your illness, know it inside and out, but still, there are those who think a quick “What do you have to lose?” and “It can’t hurt to try, right?” are sufficient evidence for you to trial-run whatever happens to be circulating on Google or daytime talkshows.

The truth is, we’ve learned the hard way–either through personal experience or shared horror stories–that what you don’t know can hurt you. So it’s frustrating, to say the least, hearing someone willing to take a gamble on your delicate health just because they haven’t yet learned to deal with their own feelings of helplessness. So of course if you didn’t do it their way, if you didn’t give their ideas a shot and you got worse, it must be your fault, right? Didn’t they “tell you so”? Wrong.

My family is one that is lost to the mechanics of all these diseases I live with, and often they don’t understand all I must actually do to try and get well. I do try to explain how things work when I’m able, but I can only expend so much energy on it. Having moderate-to-severe cognitive dysfunction at any given moment means The Art of Explanation isn’t always on my ability list, and if it is, it’s usually not at a time when anyone is around to listen. So they are understandly confused when all these things that were supposed to work for me, don’t.

I tell them, I know what I’m doing… And the truth is, I do know what I’m doing. I could write a book on these illnesses by now. But I guess somewhere along the line I’ve equated “knowing what I’m doing” with “I’ll get better if I do this.” So when things aren’t getting better–like now–I feel as if somehow I’ve let down my friends and family, as well as myself…  But I’m finally starting to realize that is false. You can do everything right, and it still not work. I think that warrants repetition, even.

You can do everything right, and it still not work.

Funny thing is, I’ve known this for a long while. Nothing quite says, “It doesn’t matter what you do, I’m going to act however I feel like,” as much as having a completely unpredictable illness about which little is truly known. But I think this is the first time it’s really settled in, become integrated. I’ve gone through constant trial and error over the past nine months, in which things that should have conquered my treatment complications long ago, simply haven’t. And I think, if there’s anything to be gained from this situation, I appreciate the life lesson. I appreciate it being driven into my psyche that no matter what any doctor, family member, friend, or inner nagging voice says, if I’m doing all I can and things don’t go the way they’re “supposed to,” that’s all right, because it’s not my fault.

I can have all the knowledge in the world–and I put what I have to use every day–as well as all the tools to work with, and I still will not have complete control over how my body responds.

I can only thank God that I do know as much as I do, because without that knowledge, I’d be much worse off, and going downhill at a much quicker rate.

God, grant us the
Serenity to accept things we cannot change,
Courage to change the things we can, and the
Wisdom to know the difference
Patience for the things that take time
Appreciation for all that we have, and
Tolerance for those with different struggles
Freedom to live beyond the limitations of our past ways, the
Ability to feel your love for us and our love for each other and the
Strength to get up and try again even when we feel it is hopeless.

a rainbow at night

For a 2012 edition to this entry, see my newer post: Having determination does not always equal curing a disease.