I was hoping this long overdue blog post would be sparked by an overflow of creative energy, but I suppose there is nothing wrong with appropriate frustration being a catalyst, so long as it’s channeled in an effective way. And while it is impossible for anyone to understand the challenges that one faces while living with chronic illness, I think it is important to bring attention to the repercussions from some of the unconscious/semiconscious societal beliefs (especially within ‘new-age spirituality’) that are backhandedly implicating that people with chronic illness are in some way, shape or form sick because they are ‘choosing’ to be. I too would like to take some responsibility for falling in and out of this pattern.
So often I have found myself thinking….
‘If only I was more in alignment with the universe (or my path.. whatever the fuck that is), if only I resolved ALL of my trauma… if I had a better attitude, tried harder, committed to brain retraining, understood my bodies signals, ate better, changed my energetic frequency, moved somewhere cleaner, devoted myself to helping others... on and on and on the list goes. This constant feeling of not living up to my ‘potential’, depending on others financially, and experiencing the darkest corners of what it is to be a human leaves me perpetually feeling like there is something deeply wrong with ‘me’ as a person. There is an ever-present unspoken suspicion that: THIS IS MY FAULT.
A brief story:
In April of this year I suddenly started to rapidly progress both physically and mentally over a period of a few months. I started surfing again, playing music, socializing and feeling joy (all HUGE milestones). Everyday things that had previously felt like moving a mountain were suddenly coming with ease. I was sobbing with gratitude on almost a daily basis while envisioning/seeing myself fully healed. I didn’t know if I was improving because of the protocol I was on, or simply because I was consciously choosing to focus my life around joy and connection. Regardless of why I was improving, I finally put down my guard and believed wholeheartedly ‘I am getting well’. And while I am ashamed to admit it, during this period of rapid transformation not only did my ego start taking a lot of credit, but I also started to view others who were still sick as being stuck (consciously or unconsciously) in some kind of negative energetic/emotional vortex that was keeping them from getting well. I thought to myself “If only they could see that they are in a self perpetuating cycle of illness…. If only they could see that their attitudes, choices and thoughts are keeping them sick… if only they could step out of fear mode…retrain their brain…get on the ‘right’ protocol, if only… if only … if only”
[Oh how I must LOVE big humbling slaps in the face]
Over a period of weeks (without changing anything) I started to backslide hard and fast. I kept thinking of that story where the neuroscientist (Jill Bolte Taylor) had a stroke and watched her mind unravel from a first person perspective. On some level she knew exactly what was happening, yet had absolutely no control over the loss of many functions in her brain (especially those in which she excelled in). Not only did all of my physical symptoms come back, but I also felt like an incredibly sane, grounded observer trapped in a brain AND body experiencing a dissociative/depressive/psychotic break. There was no lack of trying, or tools left unused (EFT, Hypnosis, self soothing/loving, brain retraining, energy healing, connecting with people, praying(?), and any medical treatment I saw fit) and yet I continued to get sicker on every level. It became apparent that my constant attempt to ‘will myself’ out of this hole was not working, and in a moment of complete surrender and defeat, it hit me:
This experience has NOTHING to do with effort, intelligence, resources or will. This has nothing to do with self-love, empowerment or the choices I am making. THIS ILLNESS (AND SUFFERING) IS NOT MY FAULT.
Because people with these illnesses (lyme, mold, ME, MCS, etc) are desperate for answers (and cures), and because these illnesses are far from being legitimately recognized by the medical establishment, we have become the perfect target market for deeming ourselves and being deemed as ‘spiritually/energetically ill’. And while I personally choose to look through the lens of this being a spiritual journey I am letting go of the idea that spirituality (or frame of mind) is the cause, or the solution. And while I recognize that attitude, and points of focus are crucially important to my healing process, I am letting go of any guilt or shame I have placed on myself for all the times I have been unable to choose ‘light and love’ in the midst of profound hopelessness and fear.
With that said, I want to talk about some problems that may arise from people failing to recognize that their health (mental and physical) and ability to pursue certain spiritual beliefs/paths is a privilege:
I don’t think there is malicious or passive/aggressive intent when people make suggestions or talk about things like: the power of manifestation, repairing DNA with intention, or even the idea that suffering comes from attachment to the ego, and by meditating and not identifying with the ‘I AM’, my experience of suffering could or would profoundly change. I am all for hearing about different modalities of healing, belief systems, or any information about what has worked for others, but when you offer a path as absolute, you also imply that the path I am currently on is ‘wrong’. I want to get this message across: Unless you have had everything you care about stripped away from you without your permission (brain, body, identity, possessions, talents, family, social life, basic human needs) and kept away from you, please do not offer any unsolicited advice about healing illness or shifting perspective. And while it is comforting to relate to one another, the truth is that no one (including those who are sick, or who have been sick) can truly know anyone else’s experience or path out of suffering. The best thing we offer each other is validation for individual truth, and the trust that different paths can be headed in the same direction.
I will end this with some ponderings that might be useful for anyone pursuing a spiritual path:
- How much room is there when it comes to making ‘choices’ or experiencing (and responding to) emotions when physiology is severely compromised in ways that mimic torturing a human (physically, emotionally, mentally, spiritually)? Is it possible to be experiencing all of this and not identify with or get caught up in the suffering?
- If being sick has to do with being out of alignment energetically or ‘calling this into ones life’, than what does that mean about kids born with autism, or people born in poverty ridden areas where starvation and disease are the norm?
- What lessons would Jesus and Buddha (or any ‘enlightened being’) be teaching had their bodies been riddled with infection, inflammation and neurotoxic substances? Would there be a different brand of ‘enlightenment’ had their basic needs been compromised, on top of experiencing an ongoing physiological shit storm comparable (and actually equivalent) to being perpetually drugged with mind/body altering substances?
- How can we pursue a spiritual path (focused on the ‘self’ or ‘nonself’) while simultaneously addressing the profound systemic injustice happening in regards to privilege?
I’d love to hear your thoughts. Thanks for reading!
nurseskeather said:
Thank you for saying it’s ok to be I’ll and still just love yourself rather than focusing on all the blame games. Would I do better if I could finish forgiving some ppl in my life of not getting me proper medical care etc… yes, perhaps. But blaming myself 4 illness doesn’t help and there are always many layers to get through…and certainly none of these points are for anyone to mention that hasn’t been extremely ill, almost died several times and shown themselves strong enough to live through 15 years straight of pure physical torture!
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kellyeinbinder said:
I am glad you got some comfort from my post. I am a true believer that self empowerment, self love and compassion are crucial for anyone dealing with this. We are all just doing are best! I personally have found much peace in letting go of (as much as possible) the fact that most people in our lives (especially families) will never understand what this is like. I try to embrace the love that people are able to give, and let go of the ways in which they will never be able to support me. It’s not an easy road…. but I am grateful for the love and support that I do have 🙂
Much love!
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someoneTurning said:
I don’t think really understands what’s going on with our bodies. Trying to understand it drives you crazier than the symptoms sometimes huh. Just gotta hold steadfast and respect yourself, and the so far unkown.
And it’s nice to see your face on my Facebook feed now 🙂
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someoneTurning said:
Hah, totally missed a word in there. “I don’t think anyone…”
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Jennie said:
I wanted to write and tell you:
I really appreciate this blog entry.
It’s one of those entries where I read it and was like, “Yes, this needed to be written!”
So thank you.
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Greg said:
Hi Kelly,
That was an awesome post. I really liked it. I’ve commented to myself in the past that unless a person has been brutally tortured in some way, they simply can’t relate to how bad it can get.
What you’ve written is quite beautiful and profound. You seem very close to an epiphany of sorts. Here are a few thoughts that came to me as I read your post.
It’s definitely not your fault. The world at large doesn’t work in such confined spaces. Life is happening and that’s all. Kids get autism and others starve because energetically that’s the way Life is playing out. Life is way bigger than the conceptual mind can ever get a handle on. For example, you could say that once you understand that we’re all interconnected at so many levels, the arbitrary definition of “me” is seen to be quite ridiculous. In the place where past, present, and future fall way, the question as to why these things happen disappears too. From a more grounded point of view, in a world defined by light and darkness, you’re going to get the whole spectrum. Some will suffer terribly while others live oblivious to even the slightest hardships.
So here’s the real kicker for me. When I’m getting hammered, I from time to time see that a lot of the duress I am experiencing is sort of self-inflicted – comes out of conceptualization. In other words, I imagined that it was supposed to be otherwise. I had this picture in my head that included remembering being healthy. How could experiencing my brain being disassembled in the most horrific ways on a nightly basis while writhing in pain be “right”?
In this place, all conceptualizations and other attempts to placate the situation are rendered less than useless. It’s about as effective as an ant running head on into the tire of a car traveling at highway speeds. The Universe laughs at the folly. In its place is just what’s happening. There may or may not be any awareness around the situation.
When I’m able to really look, what appears to be happening is just consciousness lighting upon this or that aspect of experience and then mind conceptualizing it into a framework. The question as to why this is all happening may be that this is Life’s way of trying to reach beyond the mundane. Life may or may not be successful in its endeavors, but it hardly matters. The movement is still there.
One difficulty is that the body and the temporal world seem to have their own intelligences/movements. So even if you elect to not form any particular view related to an experience, the body will necessarily want to move in a way that creates greater peace for itself. At a minimum, it’ll say, “get up and pee”, or “keep moving because I’m in pain”, and so on. From what I can tell, this can and should be honored but in a similar vein to letting the dog out when it whines at the door. You love the dog, so you do what you can and open the door. You simply respond without any expectation or conceptualization. From this place, no one can say what’s happening because it’s simply Life responding to Itself. Borders melt away.
This relates to a Zen saying that when it’s raining then it’s wet outside, and when it’s sunny then it’s bright. In other words, if you can drop all expectations, all conceptualizations, then what’s left is just Life manifesting. To whom, you might ask. The answer is to no one, or to Life itself. There’s no magic here. There’s no Rumi running around contriving poems of love. There are no platitudes about staying positive and hanging in there. All of that falls away. In its place, a type of respite may be found; not for the small self but simply because this is the way that Life is. It manifests out of nothing/space and falls back into nothing/space.
Once during a regular question and answer session with his students, spiritual teacher J. Krishnamurti paused and leaned forward and asked the audience, “Do you want to know what my secret is?”. Everyone sat up and became immensely alert because here was one of the great spiritual teachers of the 20th century and he was about to tell them his secret. Krishnamurti in a soft spoken voice said “You see, I don’t mind what happens”.
When you wake up, there’s no one around to notice. Trumpets don’t sound. No one rejoices.
Greg – BiotoxinJourney.com
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kellyeinbinder said:
Greg! You never cease to open me up more to some sort of peace around all of this. I am coming more and more to these types of realizations that you speak of. I was hoping for so long that there was some force outside of myself that pays particular attention to me.. sees my suffering, and will suddenly and miraculously ‘help’ me by removing all these external forces that feel like they are beating me down, over and over and over. I am on the precipice, and am getting glimpses into this other reality that you are speaking of… this allowing of whatever is. It brings me more peace, yet at the same time does not make this a whole lot easier, which is quite paradoxical. You are so wise, and while I don’t really believe in angels, or spirit guides much anymore.. having people like you in my life keeps a little part of myself thinking that there is something beyond what I know looking out for me.. bringing just the right people into my life.
xoxo
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Erica leach said:
Hi Kelly
Love your blog, it helps many of us feel less isolated in this I think. Sorry have not read on what treatments you’ve done but you’ve tried essential oils right? This made a big difference for me.
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kellyeinbinder said:
Hi thanks for reading 🙂 I’ve tried pretty much everything one could think of… Plus some.
Plus some more 😉
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Erica leach said:
For the sake of being thorough… Was it doterra or Young Living that you used? I guess only the pure oils are really healing, and I noticed a difference when I tried a lower quality brand. Would you consider trying it again? They are supposed to help repair the damage to the blood brain barrier. If anything it lifts your mood. I’m addicted to these oils and though I’m still pretty sick can’t imagine where I’d be without them. Since you’ve mentioned cannabis oil I might try that too.
Have been reading your posts and the writing is incredible. It is beautiful and inspiring, and we all appreciate the comic relief! THANK YOU
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kellyeinbinder said:
Xoxo
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