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:
Advertisements

Freedom to write…just not on Twitter.

After spending a week considering a one month break from Twitter (and other social media outlets), I “stumbled across” something I wrote two years ago on my personal blog when I first tried this. (I say “I stumbled upon,” but I do not believe in coincidence.) Almost exactly like now, I had just relapsed (the one that necessitated I stop treatment) and found myself needing to prioritize my energy in order to adapt to my new normal. I’m posting it here partially as a testament to my growth, partially to explain my current social media absence using words I’ve already written (no spoons!), and partially that others might identify with any of the struggles I had back then. But trust me, this is NOT an anti-technology rant!


Tuesday, 18th December, 2012

I feel a need to be more free in my writing and not always have it dictated by a clear “purpose.” I mean, obviously there is always an intent, but this All or Nothing mindset that has still somehow managed to stick onto my creative expressions is getting me no where.

I fear having a bunch of unfinished projects because in my brain I’ve associated that with something “bad.” It’s “bad” to not finish things, and it’s “bad” to start something new before you finish what you’ve already begun. And perhaps for many things, even most things, that’s true. How will you see what you can do if you don’t see anything through? But this isn’t a major life decision–it’s expression. The All or Nothing mindset was drilled into me since I was a child, but it’s time to evaluate why I think the way I think. Do I really feel that way, or do I think that because someone taught it to me and I never stopped to question it, question them? No, I get to choose which rules I live by, which ones will serve me, and my common sense says there are exceptions to everything.

If there is an option between writing nothing because you cannot write everything, or writing a little even if it might take a while to make sense… I don’t want my brain to implode from a lack of expression.

On that thread, I really am more focused and thinking in more complete thoughts since being off of Twitter. I didn’t tell many about that experiment and I wasn’t blogging again yet, so I’ll recap. I read this blog article–“I quit Twitter for a month and it completely changed my thinking about mostly everything“–and it struck me because of this section:

“I used to believe that time was the most important thing I have, but I’ve come to believe differently. The single most valuable resource I have is uninterrupted thought.
“I’ve realized how Twitter has made me break up my thoughts into tiny, incomplete, pieces-lots of hanging ideas, lots of incomplete relationships, punctuated by all manner of hanging threads and half-forked paths. I am perfectly fine with unfinished work-in fact, I doubt I’ll ever be a better finisher than I am a starter. But I’ve found that my greatest joy, deepest peace, and most valuable contributions come from intentionally choosing where to let my focus rest.”

After reading the potential for this social networking site to do that to one’s psyche, combined with the fact that I’d recently been putting thought into what purpose Twitter served me (something I feel is important to do from time to time; weed out what doesn’t bring you where you want to go), I had to try it for myself.

It’s barely been two weeks since I told everyone on Twitter I’d be leaving until the new year, and I haven’t tweeted since…save the automated ones that post from my health blog. I have logged in occasionally to see if there were any mentions or replies, but no. Is that unusual for someone with almost 200 followers that are otherwise pretty chatty?

One major part of Adam’s Twitter ramble was how much he CARED, and how the site was draining him emotionally because he couldn’t really do anything about the bits of information that were posted. I can thoroughly relate to this because my main use of Twitter was participating in the support system us “spoonies” formed. There are lots of tweets about suffering. (It was easier to release the thought there, where people at least understood, instead of “bothering” friends or making Facebook posts.) So sure, he wanted to do something for people, but–much like myself–he liked to show sincere care and do something real to help, and how can you do that for the hundreds of little tidbits posted? Truly, they leave more questions than anything. “Twitter is outsourced schizophrenia.”

And one major facet of people like us, the “carers,” is that.. we care a whole hell of a lot more than most, meaning we get close to people and form connections with them easier than most. This is never clearer to me than when I leave behind any social networking platform I’ve ever used: I want to take people with me, but they don’t care where I go. I want to keep in communication with those I’ve formed bonds with so I leave e-mail addresses or new account locations, but they never contact me again.

And it is what it is, truly. I realize people are meant to come in and out of others’ lives. But the fact is I end up caring about others far more than they care about me, which–in Twitterland, especially–means I extend energy toward irreconcilable situations and incomplete relationships. This is not something that is conducive to what I want, need, and am entitled to as a human being. (Maybe, too, I’m just from a different time, before the internet when people called and wrote and relationships weren’t so throw-away.)

And my thoughts, it’s like they all had their potential to become something, but the goal really did become fitting them into character limits instead of expanding them. It filled the temporary niche for an expressed thought, but then it died there. Did I explore any introspection or make blog posts when I was on Twitter? No. (Of course there were other reasons I haven’t been blogging on this account, but.) It’s honestly kind of amazing, when you think about it.

I do miss Twitter, though, for when I REALLY DO have tiny incomplete thoughts. I must have been using it wrong, something it wasn’t designed for, at least not for people like me who are creatures of many words. So I call this experiment a success! More useful knowledge to bring with me into the new year. I was never a Twitter addict, but when I return to it next year, I will not be checking it as much, I will know my limits when I start to become irrationally emotionally invested, and I will be more mindful to use it in a way that adds to my life.

I thought I had been doing that, but when I started to delete people, I felt like I was doing something wrong. I felt guilty pruning through the lists of users to leave only the ones that inspired me to be greater–a thought that, when I type it, seems absurd! As Adam wrote,

“Ultimately, I still *like* a lot of those people and like much of what they have to say. I don’t believe that restricting the people I follow to only the ones I agree with 1000% of the time is healthy.”

But if I cannot find a way to keep balance with it, it has to go until I can do so. As I always say, if you’re not going to use social media for what you want out of it, why is it in your life?

I knew the Universe had something to show me when it brought that article to me right when I was contemplating my relationship with Twitter. As Oprah would say it, I have learned to listen to the whispers before the bricks start flying!


I remember how well that one month break ultimately worked for me the last time, and reading this old post solidified my decision to do it again. I laughed at how, even in my old entry, I mentioned Adam’s post appearing right as I was contemplating a break. This time, my own old post came to me! The Universe always sends us what we need, if we pay attention. With my newly-limited energy, I need to focus. I don’t have spare energy to do it all anymore. The situation has changed, and I must change with it.

If it’s not bringing you where you want to be, let it go. “Let go or be dragged.”

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

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