The Path of Least Disruption

“You don’t have time for perfect,” reminds Elizabeth Gilbert in her book, Big Magic.

I’m still alive. And one of the reasons I haven’t been around is because I knew when I returned, I’d inevitably hear about all the people who were not. That might sound a bit crazy, but, even when I’ve taken a month long break, anywhere from 3-6 people in our community will have died. With the winter stretch of the year always being the worst, I can only imagine who we’ve lost, now.

I don’t know how anyone is supposed to be okay with this. No one can possibly be okay when the only people they can truly connect with are those with similar diseases, and then to continually, year after year, watch all those people keep dying. Or otherwise become unable to communicate in a sort of living death, something that happens all too often in my communities. How do you not develop some type of complex around this? How do you deal with the constant stress of knowing that any time you go to make contact, there’s a 50/50 chance you’ll be knocked out by grief for weeks by the death of yet another friend? If anyone knows (and most do) what it’s like to live with a loved one as they’re dying, it’s the same fear you feel that the next time you enter the room, they will have already passed. That’s been my reality for years now, and I feel backlogged with grief. This can’t be healthy for anyone.

I’m 100% out of the loop with everyone. It’s as if I ran off to meditate in the remote forests of India for six months without telling anyone, and just got back. I haven’t been in a position to be anyone’s friend, as cold as that might sound. Or maybe it just sounds honest. There’s a family that needs me here; to coax them away from their fears by being their voice of reason, which is really just their own voice that they haven’t yet given themselves permission to hear; to nudge them towards seeking help, seeking God, and taking care of themselves; to fight for and protect the needs of the children, who might otherwise be overlooked; to show them the possibilities of loving life even when nothing goes the way they expect, or desire; and most importantly, to lead by example that you can face life exactly as it is; it might not feel great, and you will probably feel overwhelmed for large stretches of time, but it’s possible. The pain of facing the hardship of life is far, far, less than the destruction of a lifetime that comes from trying to avoid or ignore it. I’m so glad I’m able to be this person, still, for those in my immediate vicinity. But with the condition I’m in otherwise, it’s both the least and the most I can do. My cup is always full, and any spare “spoon” I pick up I try to use doing something I enjoy so I still want to keep living. So far so good.

"If you can sit quietly after difficult news; if in financial downturns you remain perfectly calm; if you can see your neighbors travel to fantastic places without a twinge of jealousy; if you can happily eat whatever is put on your plate; if you can fall asleep after a day of running around without a drink or a pill; if you can always find contentment just where you are: you are probably a dog." Jack Kornfield, A Lamp in the Darkness: Illuminating the Path Through Difficult Times (2011).

Of course, when I do feel happiness–which happens more often than my serious, direct style of writing here belies–I’m immediately courted by survivor’s guilt. I’ve come to accept those intrusive thoughts for what they are–mental lies–and try not to take them too seriously. I know they’re a sign I need help, which I plan to get, somehow. As I keep saying: I won’t abandon myself. I just wish it didn’t feel like I had to abandon so many others to get through my own life, at the moment. I might be pouring too much thought into that, but that’s just part of who I am.

Lately, most of my attempts at self-compassion immediately detour to shame and guilt. Only after meditation did I even notice this had been happening. One moment I was feeling gratitude that I was able to wake up and listen to music for an hour and meditate, the next I was thinking of children in war zones who can’t do that, and people with illness so severe they can’t listen to music, and my brain’s idea of logic was that somehow me being able to do those things makes me “bad”… Because of course, me feeling guilty over the things I enjoy will help other people feel better, you see. Sigh.

My succinct, “life lessons style of writing” was never something I planned to do, but the extremes of my life birthed it. What I’m going to try to do now, is to take my site back to old school journaling. If you like to read that type of thing, read it. If not, don’t. I’m still non-existent on e-mail and social media for right now. There are “good days” and “bad days,” good stretches and bad stretches.

“Needing to isolate has to do with us, the sufferers. Pushing you out of [life is a] way to have some control over what is going on… We can’t handle the shit going on with us when people are always present, adding little things to the swarm going on in our heads. Sometimes it’s just too much and having people around, especially the ones we really love, it adds to overload. We get feelings of insecurity, worthlessness, and don’t want to put that on others. Being in a relationship with someone with PTSD means understanding a sufferers need to isolate, and all the other shit that comes along with it.”

via user “silver.” on MyPTSD support forum

With a few exceptions, this level of distance from others has been the case for me basically all of 2016 and thus far this year, after a period of extreme acute stress in late 2015; the straw that broke the camel’s back and turned my solitude into survival. When I read that bit above, it’s spot-on about how the presence of people, even people we like, somehow adds “little things to the swarm” of mental overload. Just asking me a question can cause my thought process to short-circuit, but it’s impossible to describe why. I know how I feel inside, and what I think inside, but getting that across is another thing entirely. It reminds me of a certain interview with Whitney Dafoe before he became 100% bedbound, where he said he wished sometimes he could just be around his loved ones without them talking to him, if they could just let him be around them without actually interacting, he’d enjoy that very much. I enjoy that immensely, as well, but it’s nearly impossible to experience unless you’re with another Buddhist or on a silent retreat somewhere.

Last Spring I got to thinking I was just in a rut, so while having a good spurt, decided to force myself to socialize in the event it might help. But while I enjoyed myself at the time, it backfired spectacularly. Even that which I actually want to do, accumulates into a ticking time-bomb of how long I last before I need weeks of isolation to counteract it. This has been worsening for years, and after the flood… I just don’t know.

Louisiana Flood Damage Debris Pile, Before Pick-Up © a rainbow at night, 2016

It’s taken me years to realize that what I’m doing is a response to something else that’s happening internally, that I’m not just choosing to do this because I feel like being alone. I do enjoy being alone, and I will always make the best of things even if I can only tolerate my own company. As I read somewhere and found quite truthful, sometimes the fight to fit in becomes worse than the illness. But enjoying solitude is not the same as wanting to socialize and engage with your community, and care for the friendships you’ve cultivated, and in fact even knowing you need to socialize because isolation begets all sorts of awful things, but then being completely cognitively stunned by the first response you’re required to generate. I don’t know what’s happened, I don’t know why this is so much more difficult than other mental tasks or why it affects me so profoundly, but whatever this is, it is very clear to me now that it isn’t just some preference. And I have to stop beating myself up about it. I can’t be the only person who goes through this. In fact, I know I’m not.

The gist of it is: Sometimes interacting makes me worse, but sometimes I can handle it, and there is unfortunately zero difference in how it feels to me at the time, so absolutely no warning I can give if a disappearance is about to happen. It’s like trying to predict when my OCD or stuttering will suddenly worsen. Or like asking someone with RA or Lupus or MS when their next flare-up is due. It just doesn’t work that way.

Because of this, I’ve noticed it’s started to become self-perpetuated, also. There have been times when I wanted to finally reach out, only to then stop myself because I feared so much being unable to continue the momentum; that I’d just end up disappearing again. It’s my way of trying to minimize the damage of suddenly disappearing around people I thought I could keep contact with. I don’t want to hurt anyone, but this is all so unpredictable, so that feels inevitable. As one person said, “Who the hell wants to be around a touchy individual who tends to disappear off the map for reasons most people cannot fathom?”

© a rainbow at night

When I write this, and really look at it, I find compassion for myself in dealing with multiple, multiple diseases–of brain, of body, of thought–that make isolation my current reality. Being in stillness was, and can be, very therapeutic. I can find acceptance for where I am, and others tell me I’m some sort of inspiration for finding a way to enjoy life despite all of this, but I still end up thinking about my inability to be what others want, or need, or deserve. On top of it all, maybe I’m also grieving yet again for the loss of my former self, this time the person I used to be just a few years ago, who was able to engage with the world. Everyone I met, even strangers, would tell me that they could somehow feel my love for life when they were around me. And now…

More to say about my brain, so switching gears. Sort of.

Opportunistic infections are something I’ve been dealing with constantly since the flood. Skin infections, fungal infections, follicle infections, eye infections, repeated ear infections, repeated sinus infections, gastrointestinal infection from probiotics because I accidentally ate yogurt more than once… Then my seasonal winter relapse, followed immediately by a major health discovery that I’ll have to talk about on a different day.

Right now, I’m being worked up for multiple sclerosis, and/or increased intracranial pressure (aka intracranial hypertension), or both, or who knows what. Two doctors have confirmed my optic nerves are very pale and not getting adequate blood flow (suspected papilledema). My neurologist thinks this is because the pressure around my brain is.. well, pressing on things, and causing a significant amount of my symptoms. Yesterday I got a shit ton of bloodwork to make sure my kidneys can handle upcoming tests, then I’ll be getting another MRI with contrast, and an infrared-assisted lumbar puncture (spinal tap), both next week.

Much of the time I can literally feel a pressure in my eyes. Then with my ever-present headaches, the vision problems, worsening dizziness, tinnitus, and photosensitivity, alongside my significant changes in personality and cognitive decline, intracranial hypertension seems a given at this point. If confirmed, it will then boil down to why is it happening. There are endless suspects. I wonder if the IVIG may have either initiated this, or worsened something already in progress, because a lot of the changes I’ve experienced started immediately after that. Not that I’m complaining, because even if it did contribute to this, without the IVIG I would not have beaten the bartonellosis, or even be here to talk about this. I also wonder if the Lyme disease has any role, because while I haven’t had the symptoms I used to associate with it, these things currently happening are pretty much exactly what happens in late stage neuroborreliosis, which still, no ones knows whether or not is curable. You’d think it’d be as easy as checking for bacteria in my cerebrospinal fluid, but system-wide, borrelia prefer body tissue to hanging around in fluids where they’re more vulnerable. It’s almost impossible to tell what’s caused what, at this stage. And who knows, it may be something entirely new.

"I am scared. I'm scared that I don't know how many more good days I'll have. I'm scared of what this illness means, and I'm scared of what I know it can do to my life and my body. I'm scared that I'm not spending enough time with my family, I'm scared that I'm not telling the people that I love what I have to say and what they need to hear. I'm scared that I'm not living my life to its full potential. I'm scared that at any given moment my health could take a drastic turn in any direction that it wants to, and that it's out of my control. But no matter what happens to me, I know that my fears are because I care, my fears are because I still have good things in my life. I'm scared because things matter, so maybe it's not so bad after all." By @mrswelches

As for multiple sclerosis, I already meet all criteria for it, alongside a significant predisposition to developing it, so an official diagnosis could be imminent… But again I wonder how one would differentiate that from everything I already have going on? We shall see. But until the results are in, my IVIG infusions are on hold, because the possibility that an immune response to the blood product or a reaction to the intravenous fluids could worsen the pressure in my skull is too risky, not to mention getting others’ antibodies infused into me could alter my own test results. And “you have to do another spinal tap” is not something I ever want to hear.

I’m not going to say I’ll keep posting, because I’m not sure that I will, even if I want to. I won’t say I’ll try to get back to replying to comments and emails, because even though I want to, I’m not sure that will happen. I just know that I’m here, I’m posting right now after a huge effort to accomplish this, and despite 1000% evidence to the contrary, I still expect good things to happen in the future. Until next time…

Kit

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My house was part of the Louisiana Flooding Disaster.

Hi everyone, 

Just a super quick update from my phone for anyone who doesn’t follow my Twitter: My house was part of the current flooding disaster taking place in Louisiana. Between 4-8 feet of water quickly enveloped our area early Saturday morning, August 13th, depending on the height of the ground. Despite getting multiple alerts sent to my phone in the previous days for other rivers, there were surprisingly zero alerts for my area. My neighbor woke us up just in time to save our outside dog from drowning, move the cars probably minutes before they went under, and get out before having to be part of the 30,000 people who needed rescued by boat and air. My house was highest up, so “only” 4-6 inches got in, but it was enough to cause major problems with my foundation, air vents, flooring, etc. My steps are gone.

For someone in my condition I know it is extremely important to avoid mold exposure. I’m currently in a hotel and will be for some time, perhaps a month while things are repaired. I will not be available for any online activity except for the short amount of time I spend updating Twitter, so consider this site (and most all forms of my online communication) on hiatus until further notice. 

I am extremely, extremely lucky to have anything at all to return to: 40,000 homes were damaged or destroyed (so far), and in some parishes up to 75% of all homes suffered this fate. Only 15% of people affected had flood insurance because so much of this has happened outside of flood zones and despite what the news is telling people, flood insurance is cost prohibitive here due to what most consider price gouging.

I also didn’t lose much inside that I absolutely need, like my medical grade bed, refrigerator, etc. Most people affected by this disaster are in a shelter and have absolutely nothing to their name except the clothes they were rescued in, but will hopefully be moving to temporary housing soon while insurance and FEMA help them get back on their feet (like they’re doing for me and some of my family). It’s a real mess, a true disaster zone down here. No one is going to be talking about the flood of ’83 anymore. They’re going to be talking about this one.

If you want to help, please donate to the Red Cross. They are amazing, and can be trusted to put your funds to the best use possible.

In the past decade alone I’ve had to evacuate and stay for weeks/months in hotels at least four different times; at least one time, I lost my house. I’m really growing weary of southern Louisiana. I don’t think I want to do this any more, here.

Until next time.

Kit / a rainbow at night

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

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

Short answer: No. No I’m not.

Reasons I almost didn’t write this:

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

Reasons I absolutely AM writing this:

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

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

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

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

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

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

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

And I survived.

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

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

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

I’m making tremendous progress this year.

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

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

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

On second thought, don’t respond to that.


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

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

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


Takeaways for others, I hope:

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

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

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

a rainbow at night


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

This one is for you.

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

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

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

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

“When conditions are sufficient, things manifest.”

© a rainbow at night

Here are some of the changes I’ve made within the last.. wow, has all this really only happened within the last two months?

  • Exchanged everything I use on my body for an eco-friendly, recyclable, sustainable, chemical-free and usually organic version. (With the help of Amazon Prime, if you’re wondering.) That’s organic and chemical-free shampoo, conditioner, body lotion, deodorant, powder, lip balm, sunscreen, toothpaste, facial wash, and soaps.
  • Exchanged household items for eco-friendly, recyclable, sustainable, chemical-free versions, that don’t harm the environment. Like dish washing materials, laundry detergent, fabric softener, household cleaners, paper towels, bathroom tissue, facial tissue, drain cleaning, and even tape.
  • Sent everything I had to get rid of to TerraCycle, which offers free recycling programs “for previously non-recyclable, or difficult-to-recycle, waste.” This includes unwanted beauty products, foil-lined granola wrappers, water filters, even cigarette butts and ashes; i.e. lots of things you can’t put in your recycle bin. And they even pay you to ship it to them! Continue reading ““When conditions are sufficient, things manifest.””

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:

My Tonsil Got Me Potentially-Life-Altering IVIG Therapy.

And here’s how.

Intravenous immunoglobulin (IVIG) is a human blood product produced by filtering the antibodies out of thousands of plasma donations–usually over 10,000 per dose–and supplying them intravenously for the treatment of immunodeficiency, immune-mediated neurological disease, and dozens of other serious illnesses.


I guess the story starts several months ago, when I began contemplating seeing my immunologist again to have my immune function retested. Not that long after, I began getting spots on my tonsils, which, after having some lymph node pain in my neck with ear pain, I figured was the result of an ear infection trying to push its way through; the tonsils are lymph nodes, after all.

After my ear improved with tea tree oil drops for three days, the tonsil spots proceeded to go away…and then come back worse. There I was thinking my immune system had won against something, but no! Accompanying this, my neck and face felt like they were on fire, and I had stabbing lymph node pain from my face to my right arm all day. It seemed to irritate the previous nerve damage in my face. (And mind you, I’m already on ibuprofen and percocet daily–the pain was going through them.) I wondered if I hadn’t gotten some type of stubborn virus, began to worry, and decided I needed to make that appointment because I couldn’t handle this one on my own anymore. And getting that appointment went something like this:

Mentally pair my current problem with having wanted to get my immune system checked, anyway.

Decide that’s perfect, I can do two in one; have a great feeling about that.

Call to make an appointment and find out my usual immunologist left, so made appointment with new woman in the office. Suddenly start to feel uneasy that I made that decision while distracted by two people in my car.

Call back to inquire about which immunologist in that office likes complicated cases, because I am one. Receptionist says she doesn’t know, but the one I just made an appointment with was available more (in town more often), so that might be something I could consider; I say okay and hang up.

Still feel uneasy and have nagging intuition that I should call back AGAIN and take the cancellation they’d offered for The Other doctor, even though it was two days later than the one I’d just made and I was really hurting.

Try to find an explanation for this intuition (because I just like to have explanation for things, if I can); begin doing research. Find out the Other Doctor loves complicated cases, AND he has thirty years experience, AND he’s the same doctor I saw twelve years ago at the onset of the M.E. (who helped me even without realizing it by giving me a steroid to slow down the initial inflammation).

Immediately called back for a third time that day to take the cancellation/the appointment with this Other Doctor.

Finally feel at ease.

I felt utterly ridiculous calling back so many times to change appointment dates and doctors, but: Intuition over feeling silly for a few seconds. The strange thing was that when I called to change the appointment–which I’d scheduled with the reason of having tonsil trouble and needing to recheck my immune system function–they asked me, “and you’re beginning IVIG?” I said, “…No? No one has ever offered me that!” and she said, “Hmm, that’s weird! Someone wrote down that you were starting it!” Hmmm…

I’d almost canceled my appointment before ever going to see him (“Other Doctor”), because between making the appointment while in severe pain and the days before the appointment actually arrived, my herbal rinse helped my tonsil to the point of there being no spots left. “Luckily” I didn’t cancel. (By the time I arrived, he actually said it was fine!)

Long story short, my current doctor, the “Other Doctor,” who shall henceforth be referred to as My Immunologist, is wonderful. He doesn’t know fully what myalgic encephalomyelitis (M.E.) is, but understands that it inflames my brain and causes progressive muscle weakness. He was knowledgeable that once you get certain infections there’s a possibility of them going chronic, so we didn’t have to argue over that. And for some reason, in his chart as well, was written that I was there to start IVIG! I told him the same thing I told the receptionist, that I’d never mentioned IVIG to anyone, and no one had ever offered it to me. (If you’re not aware, there’s only a certain supply of IVIG, it’s extremely expensive, and they don’t just give it to anyone.) And so, staring at my page-long medical history, and at a loss of how to help me, he offered it to me!

Thus, because of this tonsil and the other dozen quirky things that got me to that appointment at that time with that doctor, I have now gone through the system and gotten approved for immunoglobulin replacement therapy with the help of test results showing that my immune system is still.. well, my immune system, and both doesn’t have enough of things or produce adequate antibodies, and am starting my first infusion tomorrow, Monday, October 6th, at 9am at an infusion center. 

This will do either one of two things: Help me, or affirmatively rule out that this is never going to be one of my options so I can finally lay it to rest. But I’m obviously banking on it helping!

Of course, my tonsil has done what it’s been doing for literally months now, and the spots have returned and even popped up on both sides of my mouth. We’ve at least ruled out strep, though. He immediately called me in an appointment to the local office to do a culture with his associate, the lady doctor, upon hearing the spots abruptly came back over the weekend after the appointment, and spread. Neither one of them is sure why this is suddenly happening, but she thinks those and my other lymph node pains have been the result of an overburdened lymphatic system and weakened immune system, because nothing else has changed besides my relapse back in June. Basically my body is probably just overwhelmed. I liken it to a skin infection I get on my neck only when my immune system is overwhelmed. This could lead to tonsil stones if it doesn’t clear up, but he’s hoping the IVIG will help that, too (and at least this helped document my need to the insurance companies). Frankly, since the severe pain has subsided, I’m content to let it work itself out, now.

My favourite part about this, besides the actual IVIG, is that I get fluids after each all-day infusion because of my chronic dehydration and MTHFR polymorphisms, the latter of which make me extra susceptible to blood clots. So I get to do this once a month. Which means I get fluids once a month.

I hadn’t written about it here yet, but I’ve returned to needing fluids in the ER every few months. Some friends helped me discover coconut water in June and that did help a lot–now I can usually “save myself” when things get close to an emergency–but it’s still a daily battle. So if the IVIG goes well, I can continue getting monthly fluids as well, and dehydration will be one less thing on my balancing plate.

Another thing my bloodwork revealed was a high eosinophil count, which for me means the bartonella and/or mycoplasma are active–no kidding!–as that was one of their first presentations. They’re not as high as they were before when things were progressing really quickly, though, so that’s comforting–maybe this IVIG can help subdue them!? I’m very eager to see what will happen when I can actually make antibodies! :D

I’ve joined the Immunodeficiency Foundation, so if you’re on there, look out for me, or let me know your username. My thoughts about primary immunodeficiency usually take the back-burner in comparison to everything else I must balance, but when I think about it, living with it really does add a layer to my life that people with full-functioning immune systems just don’t have to worry about. I’m looking forward to being part of the support community.


As of this month, it’s now been two years since the big relapse (before this one) that made me stop all treatment in favor of, um, living… Now I get to try this! I’m thinking surely it will do something, for all of these factors to have led me to this point? I don’t believe in coincidence! I’ve been visited by multiple types of owls in my backyard almost every night since this whole tonsil thing started, despite maybe only hearing a wild owl three times in my entire life before this. Owls are symbolic of intuition, wisdom, the ability to see what others do not, and their presence announces a symbolic death, major life transition and upcoming change. 

Last night the Great Horned Owl visited me again.

a rainbow at night

Sisterhood of the World Bloggers Award

Thank you A Figment of Fitness for the nomination! I had no idea you were following me and wouldn’t have known had I not checked my Referrers sections–what a pleasant surprise!

sisterhoodoftheworldbloggersaward

Rules:
(01) Thank the blogger who nominated you and link back to their site.
(02) Put the award logo on your site.
(03) Answer the questions the tagger has given you.
(04) Nominate ten people, and
(05) Make up ten new questions for those people to answer.

My Questions

(1) What made your today most special? There are a thousand special moments in my day. When I take my first steps; when I drink organic fair trade coffee and think of all the people who harvested it for me to enjoy in that moment; when I drink it out of the cup I bought in San Francisco, an impossible yet fulfilled dream; when I take my pain management medication and know that I’ll soon have enough relief to actually live another day; when my dog, Muffin, and I see each other for the first time; when I hear the birds outside chirping; when I turn on my music and can forget that I’m sick; when I turn on my phone and see text messages from loved ones; et cetera. What made today even more special was being able to work on this website, at my leisure, without much suffering to distract me, and create a new blog post. Lately all of my energy has been spent toward coping with new challenges, and it hasn’t left me with anything remaining to actually do things I WANT to do.

(2) Why do you blog? What a wonderful question. This blog started because I felt I was talking too much about health problems on my personal journal. I needed to write it down somewhere, but the way I was doing it made it seem like that’s all I was: Someone with health problems. So I made this separate blog to keep up with my symptoms, treatment, and developing issues. I made it public, and a few friends followed, but I didn’t think many people would actually read it–now, every month people from over 45 countries visit my site, to my utter astonishment. Somewhere along the line I realized my way of thinking and writing was helping people, so now I feel like I have to keep that in the forefront of my focus, because with that also comes a responsibility to make your intentions clearly known, and not use words carelessly. Luckily, this is also a main part of being Buddhist, so they both teach me to be mindful. Now my blog is less about every new health development as it is how I feel about living with them and what I’m doing to continue enjoying life.

(3) What is one thing that you wish people understood about you? Maybe I used too many brain spoons on the first two questions, but, I don’t know…!

(4) What is on your desk right now? If you’re not at a desk, describe your surroundings. I’m using my overbed desk and all it has on it right now is the remote to this adjustable bed and my cellphone (face down, because no distraction). Oh, and the laptop!

(5) What is your favorite season? Describe how it makes you feel. AUTUMN!!!!! The weather makes me feel my best, symptom-wise, which is a major perk. Since it’s started, I’ve been able to drop 400mg off of my daily ibuprofen dosage and 3.25 off my percocet. I love the cool air; being able to keep my windows open even at night, and listening to the frogs and crickets; making a pallet on my porch to sit outside with my dog, a cup of coffee, and read, or listen to audiobooks, or draw zentangles, or just watch the leaves fall and enjoy the fresh air. Fall has always felt like the real beginning of the new year, to me. Plus, it is THE BEST season for theatre! The best dance performances, orchestras, and singers come to town.

(6) What do you do when it is o’dark-thirty and you are stressing so much you can’t sleep? I don’t. There’s no point in berating your body for not being able to fall asleep, or cursing the moment for not being what you want. It is what it is and your body will fall asleep when it’s able. Audiobooks almost always put me to sleep at some point, or at least help me enjoy that time.

(7) What is your obsession? Nothing really comes to mind! There’s a lot I’m passionate about and/or really enjoy–music, learning, reading, documentaries, dance (watching), but I can’t think of any one thing I’d call an obsession.

(8) When you are walking down the street, do you pick the street side or the building side of the sidewalk? …What?

(9) What is the town you live in like? It’s the halfway point between a large city and small town, part of a metropolis. Not enough people to drive you crazy, not small enough that major necessities like hospitals and doctors are missing. Outside friends who visit have told me that the people here are nice, but I’ve been around nicer, aha!

(10) What is your favorite quote? Oh, lord. I’ll just put a few that I like, because I have tons.

“When there is no enemy within, the enemies outside cannot hurt you.” (African Proverb)

“What would you be like if there was nobody else in the world. Who would you be if the only opinion that mattered was yours. Because if you want to be truly happy, you must be that person.” (An Englishman in New York)

“When a tiger, a powerful creature, forgets who he is, he will allow himself to be intimidated by a whip and a chair.” (Iyanla Vanzant)

“Never pretend to a love which you do not actually feel, for love is not ours to command.” (Alan Watts)

“Science is how God thinks.” (Deepak Chopra)


The Nominees


Your Questions:

(Just going to say this, now: I’m stealing some of the original questions–my brain is exhausted!)

  1. What made today special for you?
  2. Why do you blog?
  3. What is one thing you wish people understood about you?
  4. Which place that you’ve visited is your favourite?
  5. Do you have a phrase, mantra, or quote that gets you through those exceptionally-difficult days?
  6. What are you most proud of/feeling personally accomplished about?
  7. Do you have any creative outlets aside from writing?
  8. What are you doing/have you done to leave this world a better place?
  9. Do you enjoy documentaries?
  10. Is there a life tip you’d like to share?

a rainbow at night

A Relapse Within a Relapse

Avenue of the Giants, Humboldt Redwoods State Park © a rainbow at night

First, I can’t thank anyone enough for the response on my last post; it was quite unexpected. I’m glad to have touched the hearts of so many and to have received such a beautiful outpouring of love and support in the comments and e-mails that followed. It really helped me feel less alone, and you should all stop to think of how amazing you are for reaching out to a practical stranger. Thank you.

Right now the biggest thing on my mind is, a friend of mine who I wrote about several months ago, Brooke, is in the very final stages of myalgic encephalomyelitis. There were recently several weeks when insurance troubles denied her hospice care, during which she deteriorated very quickly. I do know she is getting at least some pain relief, and that is a blessing, and recent complications hint that it might not be too long…which is probably a blessing, too, if you ask me. She worked extremely hard to produce this post and a subsequent one to cover any confusion about her decision to deny “life saving” measures (questionable terminology) such as feeding tubes, which would only work to extend her suffering past her natural end. Her family will be delivering any updates as they occur.

[ETA: As of writing this, she’s managed to produce one more post clarifying that her amazing doctor convinced hospice to accept her for another 60 days. And amazingly, her bravery has led to being a part of an upcoming documentary about the severity of true myalgic encephalomyelitis, one that might chronicle her passing from this world in an effort that will accomplish her original goal of Documenting M.E. and all that it entails, to help spread the truth for us all.]


Also, I’m in the midst of a further relapse. My health has been in a state of decline since June, and additional stressor after additional stressor pushed my body over the edge. Or at least that’s what I assume happened, because I can’t pinpoint one particular thing that did it. I do know the emotionally draining act of writing a goodbye letter to my friend–because life happens–sent me into incapacitating illness for a straight week, during which I was struggling to remain conscious every single day. It was quite scary, but I’ve since become able to stay awake more easily…

It actually took me a while to realize I had relapsed. When I first felt the decline, I expected to recover in a few days, as my health is highly sporadic and changes every day, every hour, every ten minutes some days… And I even expected this recovery might be more extended because of the seemingly continuous stream of triggers… But while I was knocked out last week, it occurred to me that my waiting to improve back to my previous levels of energy had spanned about 8-9 weeks already.

I may write further posts on this and other topics, soon, but right now it’s easier for me to do other things that only require small periods of focus. I’m updating my website behind the scenes, mostly.

Please continue to send your prayers, metta, and positive thoughts to our dear Brooke, her husband, and the rest of her friends and family. Also, to everyone who has recently subscribed here, thank you, and rest assured I will continue to write. (The Life Lessons section has a collection of my favourite posts, in the mean time.) My girlfriend might even be helping write a few sections and/or articles. If you want to contribute either with writing or links that you’ve found particularly helpful, don’t be shy about getting in touch! This site is for my expression, but the information I stand behind should be for the benefit of all.

I shall be focused on finding stability in this relapse.

a rainbow at night

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

How Wrong I Was: My One-Year Anniversary Without Treatment

Working on my latest piece; if this doesn’t say “artist’s desk” I’m not sure what does…

I had an experience while having coffee with the squirrels the other day. Well, sitting on the back porch, but same difference.

I was watching all of the animals, listening to the birds, and feeling the gentle breeze. A chickadee–my favourite–was chirping in the midst. Any other day this would’ve been a normal backyard, but at that moment, it was a sanctuary.

There was so much out there: I counted at least ten species of animal within twenty minutes. And as everything just went along with its life, I was suddenly very overwhelmed with the knowledge that life always goes on. It’s humbling and frightening and comforting all at once.

When I opened the door to step outside, everything had paused to look at me. I sat down quietly and started sipping my coffee. Everything went back to its business of finding dinner and fluttering about. Their acceptance reminded me that I was also part of it all—I belonged there.

I glanced over at my house and the walls that separated my quarters from their quarters. Theirs, a tree; mine, a room and bed made from the tree. There were walls to “separate” me from the outside air and ground, protect me from danger and the harsher elements just like any other creature, but all that really separated me from those squirrels and birds and butterflies were four inches of material that the earth provided me in the first place. The stars are always above us even if all we see is a ceiling. We are part of everything. And the earth made room for me to exist, right here.

A few nights earlier, I did that thing where you open your closet to get something and end up distracted by everything else you find. I snatched the sweaters and shoes I bought earlier in the year, for Autumn. Put on a hat. All layered on top of the dress I wore that day. Looking into my full-length mirror, witnessing how perfectly it all went together, I had another “moment.”

I was overcome by how blessed I felt to be experiencing all of this; all of this. Feeling okay with life, even if it is scary; sharing my days with the love of my life; being together during our favourite season; being close to my remaining family; miraculously having funds to take care of everything I need AND want; and being able to wear clothes that represented me, that I picked out instead of clothes discarded from others’ closets.

It happened in a flash of thought, but looking at my reflection, it was as if the clothes were symbolic of all the pieces of my life I’d changed and chosen over this year, hoping they’d eventually, somehow come together in the future; and the perfect way the scattered items “fit,” a reminder of how my life has worked out. All my preparation–in wardrobe choices and life choices–had proved to be more perfect than I could have ever imagined. I had a distinct sense of “I made it.”

My legs do give out more and more lately, but considering how quickly things progressed the previous times treatment failed, I honestly didn’t know if I’d even be walking at all, much less this well, after a year. I didn’t think any of this would have been possible… How wrong I was.

How wrong I was.


Today marks the first anniversary of my relapse in 2012, and the day I stopped treatment. Things aren’t going how I thought they would.

I did not experience remission from M.E. after ten years of living with it, like many do. I did not cure the bartonellosis. My pain continues to expand instead of resolve. I still have mycoplasmosis and I’m not “beating Lyme disease” and I won’t be going into any other treatment programs with the motive of being 100% cured, of any disease.

But I look at who I am now and who I am still becoming, and the people in my life, and the way I experience life, and I wonder if things could possible be any better for someone in this situation. I really don’t think they could.

a rainbow at night

My year so far, after choosing to truly Live.

Thoughtful

I’d like to start out this post with a bit of astrology, because I think it perfectly describes how my year has been thus far. (Bear with me!)

“Get ready to dig deeply in 2013, Leo. You’re going into a phase of complete and total metamorphosis. This will require considerable self-analysis and probing into your past patterns, but all the work will be more than worth it. You’re on the verge of discovering just how powerful, strong and resilient you are at your very core. If you have ever doubted your strength, after 2013 you’ll never question your resourcefulness again. Saturn, the great karmic lord of trials and tribulations, will be camping out at the base of your horoscope until 2015, so you’ll have plenty of time to delve into the depths. Family issues and psychological patterns inherited from your parents will come to the surface this year, making your more aware of — and able to avoid — negative patterns. Wake up, Leo! Get ready for a major rebirth.

Lucky Jupiter will continue to bring good fortune to your social sector and help you dream big until June. You’ve been so blessed with the amazing people you’ve met over the past year who have helped you reach your goals. The second half of the year, you may want to pull back when Jupiter enters your retreat zone. This is a time of dreaming and scheming before launching into the next chapter of your life in 2014. So the first half of the year will continue to be incredibly social, but give yourself permission to come back to a more internal and creative space during the latter part of 2013.

The eclipse patterns of 2013 will shake up both home and career sectors, so get ready for rapid advance and decline in both arenas. Don’t get too attached to any of the gains or losses in either of these life departments, as they will constantly be in flux until you reach a healthy middle ground — and you will!”

I was expecting such a popular site to conform to mainstream and just dish out stereotypical messages, but that right there sums up everything I’ve felt about this year, all the way down to the little details! In June, I even talked to my friend about finally becoming settled and just resting starting in July–after the busy first half of the year, it’s what I want, now–and even THAT is in there! Incredible. I encourage you to click and see if yours applies as much as mine does!

Lion representing the Leo sign in astrology. (...

So, if you’ve been following my journey through the year so far, you’ll know I stopped treatment for late stage Lyme disease in October of 2012. After several months of grieving, I decided I was going to truly live, because I don’t have time to wait anymore for a better day when I might feel better. I also have Myalgic encephalomyelitis, for which there is no cure, and bartonellosis, which was once cured but now has crept back out of remission. I’ve been focusing on symptom management and taking care of myself as best I can with food and whatever “exercise” I’m able to handle. Because of the incredible planning skills I’ve accumulated over the past thirteen years of chronic illness, but most importantly, proper pain management, I’ve been able to put all my spoons in one basket each month, and have incredible adventures. I attempted them even at the risk of symptom progression because realistically speaking, there will be no better time than right now. The past six months have been my surge of energy that comes from stopping toxic treatments, and I used it well.

Life is a precious gift. Don't waste it being ...
Life is a precious gift. Don’t waste it being unhappy, dissatisfied, or anything else you can be (Photo credit: @Doug88888)

In January, I met my extended family for the first time (yep). February was pretty rough and scary, after having to be on antibiotics for a week to get my teeth cleaned, finding out I had a new genetic diagnosis, the passing of a friend, and the one year anniversary of the passing of my Dad. So most of it was spent in recovery. But I did celebrate Valentine’s, Mardi gras, and a friend’s birthday to the best of my ability. In March, a good friend came to stay with me for a month, and we had innumerable outings to parks, new restaurants, coffee shops, and a beautiful experience at the orchestra. In April I went to see a world renown ballet group (my first trip to such an event in at least twelve years), sitting front row balcony because a wonderful family miraculously had a spare seat; they turned out to be the same family who was sitting behind me the night I went to see the orchestra in March! I also met two amazing local friends with whom I had several lovely visits.

In May, I went with a friend from Florida to see the Dalai Lama, and as if that weren’t enough, perused my favourite city on a vibrant Saturday night, admiring the culture and appreciating everything; I watched the sun set from the top of a seventeen-story building. My family hosted a garage sale for me and I got rid of 90% of my stuff. I went to the aquarium for the first time in seven years, with friends I haven’t seen in eight years, and some new friends. In June I went BACK to the aquarium with my family, which, if you knew how rare it was for all of us to be free at the same time, you’d understand to be something of a miracle. Then my best friend came from across the country to visit with me for a week; several times we stayed up til 5am giggling at nonsense like we were teenagers. I witnessed the historic removal of DOMA and Prop 8 from our country’s legislation. I planted sunflowers. I received a message from my all-time favourite musician via Twitter. And I rediscovered my love of electronic music.

As I said, in July I began resting, but something incredible happened, still. The love of my life, the best friend who stayed with me in June, told me she loved me, and since I’ve also been in love with her for the past year, we became a couple. ❤

Even still, each month I successfully set out to watch one new movie in theatres, “read” one new audiobook, and eat at one new restaurant. For now, I take a much-needed break, as my body tries to hold itself together after all that activity. But in August I’m going back to the heart of New Orleans for a week for my birthday, to stay with another friend who is also coming cross-country. And in September I get to spend more time with my girlfriend as we arrange another, longer visit. After that, who knows…

But I’ve been divinely assisted in everything I’ve set out to do, and whether this year turns out to be my last truly being able to function, or just a temporary rut (however doubtful that seems), I can go forward knowing I gave it my all while I still had the chance. I know without a shadow of a doubt that I made the right decision to stop treatment and focus on having a life.

I have more to say, how symptoms are going, what happened with the doctor who wanted to erradicate some of my nerve endings… But that’s for another post. To be continued…?

a rainbow at night

“These are a few of my favourite things…”

English: Sunflowers in Fargo, North Dakota. Es...
Sunflowers in Fargo, North Dakota

I have definitely been doing a lot of LIVING the past several months. I’d call all of my New Year resolution goals a success so far, with the exception of writing in my daily journal which I did for a month then found redundant, so I let it go. I’ve been enjoying a monthly audiobook, I’ve continued my studies in French, I’ve been leaving the house with NO intentions of anything health-related–movies, performances, cafés–and delved into my art, photography, writing…

“Venture out, jump in, and be a part of this great and fascinating universe in which you find yourself.”

“On this day, in this place, as you are, with what you have, let go of the fears, worries and doubts, and richly, joyfully live.”

Ralph Marston

You know in those fiction novels, or even some movies, where the character randomly starts naming all these things they like, usually as an attempt to describe who they are…? Or sometimes, depending on the level of the story, it’s about personal reflection. Well I’ve been doing that, lately. In “real life.”

“There are many amazing things you will discover, and their only value is whatever is realized in the moment you find them.”

Matt Kahn

Like, I think sunflowers are amazing. And I really like jellyfish. And leafy seadragons. And cake, and chickadee songs, and floral prints and vanilla-flavoured beverages…

It feels kind of invigorating, to think that even now, I’m still.. becoming something. I’m still becoming.

a rainbow at night

A Dose of Reality: Flare-ups, Symptoms, and Emergency Rooms

First off, a huge thank you to those who have expressed their support and gratitude of my recent writing… I was not expecting it. I have read your words and I want to reply as soon as I can. Right now I feel an update of sorts is in order. Forgive me while I use my spoons for expression, but know that I am actively awaiting the right words to respond to the support you have offered in my direction. :) You help me feel less alone, and on weekends like this one, I really need that…

At the beginning of May I wanted a mini-celebration of the fact that I’ve been off treatment six months and I am still walking okay. So what better a way to affirm my functioning feet than with new shoes!

K9 by Rocket Dog® Odetta Floral-Print Ankle-Strap Pumps, $30
K9 by Rocket Dog® Odetta Floral-Print Ankle-Strap Pumps, $30

This event was right before my monthly Lyme disease flare, which still happens around the beginning of the month. I forgot about it this time, so it wasn’t until day three of being in bed that I realized why all these symptoms were suddenly happening.

I effectively went from walking “normally” in new shoes, eating at my favourite foodie joint, to being in bed four days, excessively sleeping through over half of it, and having seizure-like activity again.

Yesterday, I felt as if every inch of me was buzzing, vibrating from the inside-out. I also tried to wash my face with sunscreen; use toilet paper as moisturizer; pour my milk into a sauce bowl instead of a glass; made accidental purchases online; and found myself standing in places I didn’t have any memory of walking.

Yes, I remember all of these symptoms, unfortunately.

But still it helps to know why it’s happening. Not only that, but I’ve noticed I’m typically worse on weekends, again, i.e. every 5-7 days…an ominous sign from my bartonella era, but a fact nonetheless. Please, no.

 

My ego said, I would rather all this NOT occur immediately after I finish celebrating how relatively well I’m functioning after six months with no antibiotics! Why did you have to remind me, right now? Maybe I wanted to forget for a little while, just how much my body is going through, just how sick it is…

Another part of me is saddened at the reminder.

And another part of me is actually thankful for the reminder, because it won’t let me float away into denial, while at the same time hoping that I won’t sink into despair…at least not for too long.

See, I go through the same emotions as everyone else. I don’t ever want to seem like I don’t.


I’ve been relatively doing so-so. I never imagined stopping treatment would have given me so much of my life back, these months that I would have otherwise spent in misery with no real benefit except more worsening. Instead, I have more good days right now, I’m determined to use them fully, and I can be mostly comfortable.

Symptom-wise, this has developed:

  • I consistently see the squiggles, black dots, and smoke-fog illusions in my vision.
  • My hands go numb more often, and various irritated nerves cause intermittent curling of my fingers.
  • There is more numbness in my feet, and more of the old “fire foot” sensation.
  • I have more heart palpitations and trouble staying hydrated.
  • My left leg buckles more frequently.
  • I get more spasms in my back.
  • I get choked more easily.

I recently returned from two ER visits with a random virus…and just like after my last viral attack in December/January, my vasculitis is temporarily on hiatus. So for now I’ve been able to stop the daily ibuprofen that helps keep it in check, but which has also resulted in more trigeminal neuralgia episodes and eye pain.


The shot in my neck they gave me to attempt treating the occipital neuralgia did not go as intended, giving me very odd side effects like falling backwards and an inability to recognize myself in the mirror (?!), I suspect because of the brain lesion(s?). Even just sitting down in my wheelchair, I was so spaced out and off balance that everyone in the office thought they’d given me a sedative–nope! On the plus side, it did seem to interrupt the constant barrage of pain signals coming from the area, so it’s not as constant as it once was. Being on only half the pain medication that I was on before, unmasked many of the neuropathy symptoms that up until then I didn’t know were developing; another thing I wasn’t expecting.


My favourite bit of news is that, I found out if I cover myself in sunscreen before being exposed to sunlight, the vasculitis doesn’t flare up. :) Annnnnnd as of my most recent echocardiogram, my heart function hasn’t worsened, so they don’t want to see me for another 18 months!

a rainbow at night

 

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

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


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

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

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

Click to read more on Amazon.com

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

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

Speaking of which, on to my next resolution.

 

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

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

 

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

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

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

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

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

 

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

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

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

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

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

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

a rainbow at night

The Darker Side of Relating Christianity to Chronic Illness

church edit
Photo © a rainbow at night

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

a rainbow at night

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

See also:

This blog is changing…

When I opened this blog I was in the midst of my immune system crashing from an acute infection the year before. Bartonellosis raged from being off treatment/antibiotics for the last eight consecutive months. I needed somewhere to write it all down because no one else was talking about it to the point that I could understand, save one woman named Peggy who had M.E. for years and then got bitten by a bartonella-infected dog. I related to her because our symptoms were identical.

Eventually, that all worked out and my blog from start to January 2012 was a “diary of treating bartonellosis” in a way that I’ve never seen online, and perhaps that’s why my blog got so many visitors. What I didn’t expect was to get almost 10,000 views in 2011, and I never could have expected to get 20,000 views in 2012, last year.

So am I writing to an audience now, or should I do what I’ve always done, and just write?

Immediately the answer came to me, because the purpose of my blog really hasn’t changed all THAT much. It’s still chronicling the life of someone with chronic illness, and one of the most substantial things that happens with any life changing event like a disease is the fact that it changes your life.

If you’re the same person before and after an illness, you missed the point.

So with that, it’s natural that my blog would change with me, as I grow and adapt to a different way of viewing life, a better way of viewing life. I used to be very technical, still having the brain circuitry of someone who was inching toward their Ph.D. in neuropsychology.

For example, the categories you see on the side are for me to click and find, “When did I last experience this symptom?” If it weren’t for me staying on top of that, my doctor and I had no way for me to chart my progress in bartonella-killing, so for a long time it was essential to my even staying alive. Now, it’s.. just a reference point. I put them in a drop-down menu instead of a rolling list.

I don’t think I’ll be doing as much of the technical, research article-posting, news-commenting, advocacy-oriented stuff that doubled alongside my symptom charting. Not never, just.. not as much. I’ll always be a researcher at heart, but why I write here, I feel, is very different compared to when I started. And that’s a good thing.

The “Life Lessons” section was never planned, but after so many heartfelt entries about sorting through the emotional side of living with incurable disease, of living with disease that people blame YOU for getting and keeping (?!?), that does whatever it wants no matter how you try to make it better… Well, it birthed itself, really. It’s probably my favourite part of this site.

I imagine things will follow a similar vein as that.

 

People didn’t even know my name until a couple of months ago. Hi, I’m Kit. I’m an Optimistic realist, Writer, Artist, Universalist, Buddhist, and Spoonie. Welcome to my blog, where I always look for the colours in the darkness…

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

30 Things About My Invisible Illness You May Not Know

30-Things

This is a survey of sorts that went around several years back, obviously before I ever made this site. It’s still going around, so I’ve updated some of my old answers in response to more recent developments, and decided to put it here. :) Feel free to fill out this survey for your own blog! (The blank form is at the link.)

  1. The illness I live with is: primarily Myalgic encephalomyelitis (M.E.) and Borrelia burgdorferi (Lyme disease), complicated by additional infections for which I have tested positive: Bartonella quintanaBartonella henselae, andMycoplasma pneumoniae. There is no cure for M.E., and because of immunodeficiencies and extremely delayed diagnosis, I have late stage neuroborreliosis. I finished treatment for bartonellosis, but the disease is prone to relapse, and by mid-2013, it did.
  2. I was diagnosed with it in the year: 2002 for M.E.; 2009 for the rest.
  3. But I had symptoms since: 2000-2002 for M.E.; 2006 for Lyme disease; and 2008 for the rest.
  4. The biggest adjustment I’ve had to make is: putting forth a conscious effort to consider how every little thing I do (or don’t do) will affect me longterm. This is the crux of being a spoonie.
  5. Most people assume: that either none of these illnesses exist at all, or that they have no potential to go chronic or cause the level of disability I experience. Oh, don’t mind me, I’m just dying from something you don’t even believe in, that makes perfect sense…!?
  6. The hardest part about mornings are: dealing with the surge of pain I feel from lack of medication overnight; making sure I don’t pass out; stabilizing my autonomic nervous system.
  7. My favorite medical TV show is: Monsters Inside Me.
  8. A gadget I couldn’t live without is: my smartphone!
  9. The hardest part about nights are: sometimes my headaches are worse by then.
  10. Each day I take ___24___ pills & vitamins.
  11. Regarding alternative treatments I: have been helped more by herbs and specific supplements than any pharmaceutical drug, as far as the M.E. is concerned; but without the drugs for Lyme disease and the infections I picked up, I doubt I’d be typing this right now.
  12. If I had to choose between an invisible illness or visible I would choose: invisible, because I’m not a fan of attention and I like the option of blending in. Using mobility aids like canes, wheelchairs, and mobility scooters has brought me to the visible spectrum, and I still prefer invisible, with that in mind. But I really don’t have to choose, I guess–I’ve been both!
  13. Regarding working and career: I think this blog is the closest I get to working. We’re all here on earth to grow our souls, and it just so happens my soul decided I could best learn through the experience of sickness. As a wise woman once said, there was never a version of this life for me where I wouldn’t have been sick. I.e., this is what I have to work with! Every day I do the best I can for my body so that my soul can continue its journey here.
  14. People would be surprised to know: just how sick I get AFTER they see/visit with me, because my worsening can be delayed by 24 hours or more; that phone conversations give me a fever; that continuous typing or texting can lead me to muscle paralysis.
  15. The hardest thing to accept about my new reality has been: that the odds are, statistically, against me.
  16. Something I never thought I could do with my illness that I did was: travel across the country during nine days of feeling miraculously better (though it still ended with me in the ER) to accomplish my bucket list dream of visiting San Francisco, watching the sun set into the Pacific ocean, and seeing the majestic Redwoods in the Avenue of the Giants. Also, helping so many people with the words I share. At the time of my first editing this post, my site had exactly 26,000 page views. Now on my third edit (2014), it has had over 72,000… How is that even possible? I’m in awe. Thank you for letting me into your life.
  17. The commercials about my illness: are non-existent, which is almost good, because most common information about them is completely false and I’d rather people have no knowledge and come to me with questions, than to have a falsely constructed preconceived idea and think they already know everything because “the television said so.”
  18. Some things I really miss doing since I was diagnosed are: driving; getting lost in a drawing; walking normally/significant distances; laughing without consequences; visiting loved ones without having to plan for it a week or more in advance; being spontaneous…
  19. It was really hard to have to give up: my independence.
  20. A new hobby I have taken up since my diagnosis is: watching concerts on DVD; reading shorter things like articles and magazines; audiobooks; public blogging; painting; zentangles.
  21. If I could have one day of feeling normal again I would: RUN. FREAKING. EVERYWHERE.
  22. My illness has taught me: patience; acceptance; mindfulness; the importance of perspective; compassion; that I am more than what I can do for others; that I am more than what I “do,” period.
  23. Want to know a secret? One thing people say that gets under my skin is: when people attempt to relate by comparing situations that in absolutely no way are similar to living with severe illness. You don’t see me claiming to know “just what it’s like” to lose a child, do you?
  24. But I love it when people: know how to fight for what they want; I respect that.
  25. My favorite motto, scripture, quote that gets me through tough times is:
    “It is the greatest mistake of all to do nothing because you can do only little; do what you can.” (Sydney Smith)
    “When nature moves swiftly, it destroys.” (David Bate)
    “Smile, breathe, and go slowly.” (Thich Nhat Hanh)
    But He said to me, ‘My grace is sufficient for you, for My power is made perfect in weakness.” (2 Cor 12:9)
    I can deal with anything as long as I remember that whatever I need on any given day, it will be available to me. I believe the Universe looks out for us, and that there will always be enough, until there isn’t. Like Thich Nhat Hanh says, when conditions are sufficient, things manifest; when conditions are not sufficient, these manifestations withdraw.
  26. When someone is diagnosed I’d like to tell them: that their life isn’t over. And to properly educate themselves about the illness. As far as M.E.: Do not listen to anyone that says you “just need more exercise” because that one mistake can change the course of the entire disease. As for Lyme: If someone even mentions the phrase “post lyme syndrome,” claims you can’t have it because the test was negative/you didn’t have the rash, or claims that your symptoms must be something else just because you’ve already had the standard one month of antibiotics, get as far away from them as possible, order an IGeneX kit, and find an educated Lyme-literate physician.
  27. Something that has surprised me about living with an illness is: (1) how many people there are who want to blame YOU for being sick, because the thought of anything happening outside of their control terrifies them; (2) how many people abandon you when you get worse, for much the same reason; but also (3) how much some people are truly willing to help, and (4) how your closest friends will find a way to keep in touch with you.
  28. The nicest thing someone did for me when I wasn’t feeling well was: not blame me for the disease worsening; cook dinner for me; bring me back food from a restaurant: clean my house; spend hours drawing things for me; mail me CDs and letters and tea without any expectations that I’d reply (because often I can’t); insert many more things here, because I’ve been truly, truly blessed with support.
  29. I’m involved with Invisible Illness Week because: I think filling out this survey will help others feel less alone.
  30. The fact that you read this list makes me feel: like someone cares.

Find out more about Invisible Illness Awareness Week at their website. In particular, you can sign up for their updates to receive a free chronic illness e-book on “263 ways to do more than ‘just get by'”! I’ve browsed through it and it has a little bit of something for everyone.

a rainbow at night

last updated 2014, December 19th