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 helluva 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; they don’t care where I go. I want to keep in communication with those I’ve formed bonds with and leave e-mail addresses or new account locations; 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.

And it was true. It’s like they all had their potential to become something–the thoughts–but the goal became 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 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

Coping with Chronic Illness: Your Life Is Not Over.

I received a message asking for advice from a person who was new to chronic illness, having just found out they had late stage Lyme disease. In construing a reply, I came up with a bunch of things I wished someone had told me. For a good book to accompany you on this road, I once again recommend How To Be Sick.

The first thing I believe most people want to know when they get sick, is that their life isn’t over. You’re scared, and you think your life cannot continue unless it continues on the path you were already on before the illness arrived. I offer you my compassion.

Things ARE going to change, but I assure you, your life isn’t over. I ask you to consider that it never even paused at all. Your plans might have changed, but life is still happening, which I’m sure is evident as you watch others continue their own plans while you are forced to reconsider yours. The ultimate goal of everything we do in life is happiness for ourselves and others, so that we can enjoy ourselves and our time with loved ones, and if you’re still here, your ability to do this has changed but isn’t gone.

In the documentary film Wake Up, the wonderful mystic Llewellyn Vaughan-Lee said to the struggling man who sought his help,

“I just see the divine within you struggling to make itself known to you, and taking you on a journey IT wants to go on…which may be not the journey YOU wanted to go on, your ego-self had in mind, but is the divine journey in you beginning to manifest.”

This really, really spoke to me on a core level, even though the film is not at all about illness. I don’t necessarily believe that disease is predestined for a learning opportunity–though I absolutely know that illness and death are natural processes and not punishments–but I know I believe that the Universe can guide us through any situation so that it works out for our benefit. I think my spirit wants to get the most out of this hand it’s been dealt, and you might consider that yours does, as well. What has awoken in you is not a passing phase.

 

It’s okay to grieve the direction your life is no longer going. Just know there is more out there, and grieving is a part of joy. I repeat: Grieving is a part of joy. Don’t try to force yourself or your loved ones through the stages of grief faster than any of you can handle, and remember the process doesn’t follow a straight line.

You are going to be okay.

At first, you may be all cure cure cure. You may seek validation that your symptoms are real and try to prove it to others through research, because the people in your life may not believe you, especially if your illness is invisible. If you eventually find a cure to be unavailable, you may spend long periods of time–weeks, months, or longer–trying to find a treatment to slow down your disease; your loved ones might go through this, as well. If that doesn’t work out, still, your life is not over.

Buy yourself nice things. Don’t let anyone tell you that you don’t deserve nice things just because you’re sick or have to go on disability; this is the only life you have. Don’t wait to begin your life again “when this happens” because your life is already happening right now. The future is made from nothing more than present moments like these.

“If the present moment has peace and joy and happiness, then the future will have it also.” (Thich Nhat Hanh)

Don’t let your surroundings be drab; make sure they make you feel good. Get comfortable clothes. You probably spend more time in bed than anyone you know, so that needs to be comfortable, too. Make pain management a priority because uncontrolled pain is its own disease.

Learn to gracefully allow people to leave your life, and don’t close your heart when they go: You’ll need that open space for better people to walk into.

Be compassionate with people who don’t believe you–remind yourself that if they knew how much you were really suffering, they would never treat you that way.

It’s okay to not treat your disease, because many advanced cases are incurable. It’s okay to treat your disease by any means necessary, also. If you choose one at one point, it’s okay to change your mind. It’s okay to treat some aspects of your illness and not others. You may not have any control over the disease, but don’t let anyone–not even yourself–convince you that you’re not in control of what treatments happen to your body.

 

There are different groups in what many call the “spoonie” community, and you’re going to find where you belong, and you’ll also change groups many times. There are the advocates; the emotional caregivers; the writers and bloggers; the medical advisers, some of whom are actual physicians; the philosophers…

For the people who continue to advocate and fight for advancements in how to help us, medically, thank you, for you play a part in us being heard. For those who spend their energy enhancing their mental and/or spiritual growth, thank you, for you teach us how to live day-to-day. For those who help us navigate the scientific waters and avoid snake oil salesman, thank you, for you help us use our time and money wisely in a world where physicians may not even exist to help us. We are all in this together.

a rainbow at night

How Did It Get Like This: I was not raised to be peaceful.

I had an unexpected moment of crying earlier, after I realized I had gone back to some old habits. But what actually brought me to tears was the sudden immense gratitude I felt over having become this person I am today at all, now having the tools to change. Me, this woman who was raised with an emotional, psychological, and spiritual toolbox that could only ever possibly bring about mental and emotional distress, whose relationship with almost everything and everyone was accompanied by intense suffering… I was not raised to be peaceful.

Wildflowers

Wildflowers, photo by me

I was raised to judge, be cynical, vengeful, hold grudges, be an elitist, a perfectionist, and never to relax. Now, I am a completely different person. Like anyone, like all, I am capable of sliding back into old thoughts, habits, and behaviors… Only now, I have the awareness that makes me stop and realize when I’m not happy; the knowledge that I am worth my own happiness, worth investing in myself in all ways, and it’s OKAY not to be like everyone else. Often when you’re the first to make positive change amongst your circle, the people you thought would be happiest for you actually ostracize you more. Their ego feels it cannot tolerate you being true to yourself, trying to be better, because it makes them feel worse about the way they live their lives, and sometimes, just scared. Are there many things more heartbreaking than this?

 

I remember when it started, for me. Don’t laugh, but my internet broke for two full weeks. At a time when I had a craving for knowledge. So instead, I watched two weeks worth of spiritual programming on my television. I found all sorts of things! Among them, the realization that there were many other paths to peace than the one on which I had been raised–with a belief only in Jesus because we were born in sin. (Now, I believe in original goodness, via Buddhism. Which, by the way, is not worshipping Buddha or a belief that only Buddha can save you, for those who haven’t run across this information, yet.) The next big thing was ordering the book How To Be Sick: A Buddhist-Inspired Guide for the Chronically Ill and Their Caregivers, by Toni Bernhard. Like Mara trying to mislead the Buddha, I could practically hear the voices of my family in my head:

Who are you to think you can do this? Who are you to think that you have what it takes to find your own peace by means that weren’t already taught to you? Who are you to investigate what YOU want to know instead of what people are telling you? Who are you to take your enlightenment into your own hands? Who are you to think you are 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, often-painful positions because they’re supposed to “take me higher.” But I DO enjoy pausing and simply paying attention to my life and what is happening RIGHT NOW, without a need to judge it.

 

And 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 wisely would equate to a life well lived, but all it actually did was equate to a life that I couldn’t remember living. 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 actually 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 the only thing you give awareness to is your own mind? There was so much happening around me, but I was going through life asleep. No one wants to suffer, but we can only do what we know at that time…

The-Time-Is-Now

“Time” has the longest definition in the dictionary.

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 the 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 Apple) that you can set to periodically chime throughout the day, helping you remember to pause, breathe, and focus on what you’re doing in the present moment. In Toni Bernhard’s book, she has a method which includes taking 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