“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.””
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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

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

I’m No Longer at War with My Body

© a rainbow at night

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

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

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

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

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

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

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

a rainbow at night

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

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

Emotional changes that you may experience include:

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

a rainbow at night

 

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: