Being and Thinking: the Quality of Life Blogs Begin :)

View attachment 2015 The Quality of Life Blogs:
Explorations in Being (or Looking for Happiness in an Unwell World)

What is be- ing? Its very simple - almost too simple; it's just what it appears to be - its just be-ing - its the place present just before thought a place of stillness and peace that spiritual practitioners (and philosophers) assert is who we really are - a place of grace. When we are just be-ing in the moment things come naturally.things they flow more..If youre an athlete and you inhabit be-ing youre a starif you're unhealthy and you inhabit being - you are at peace.

Research suggests, however, that there is probably not a lot of being in chronic fatigue syndrome. Some studies have found that the brains of people with ME/CFS have difficulty shutting off innocuous stimuli such as background noise. Other studies suggest that problems with the planning mechanisms may make it work harder to plan movement. Others suggest other neural networks arent working as efficiently as they should beFindings of increased sympathetic nervous system activity (fight or flight) suggest that just be-ing is hardly a priority. With problems such as these the grace of simply being becomes harder and harder to come by.

Thats not helped by the upsetting situations that quite naturally throws many of us into frustration, anger, sadness and fear. Since our culture places little emphasis on be-ing over time we forget about the option of just being and become our thinking; our goals, our anger, our frustration, our hopes, our sadnesses all eclipse our be-ing.. (One of the options of be-ing is forgetting about be-ing!). Then we become angry, we become sad or frustrated - and the longer and more angry, sad, frustrated we are - the more that fills up our day. Spiritual seekers say, however, that is not who we are...

We are be-ing - a place of grace and space. This blog is a journey away from thinking - a remarkably energy intensive place to be - and towards be-ing - a place of grace and space - in an unwell world.

One of the things that has helped me is drawing 'distinctions' - and here it is possible to draw a distinction be-ing and thinking. This allows me to draw the distinction between when I am 'be-ing' and when I am 'thinking'; in general being wins out - it's a more peaceful and happier place to be. :).

These blogs will focus on my attempt to access be-ing, so to speak, as I read different books and try different exercises.[/QUOTE]

Comments

AWESOME! One of my biggest 'crises' after my ME/CFS crash was the panic I felt when I realized I could no longer 'do' All I could do is 'be'. I didn't have a clue how to 'be'. And who could love me if I couldn't 'do'.

And so my quest began. I was able to stop the racing in my chest by learning and practicing Qi Gong breathing. And my body responds to beginners yoga like it's soaking in health.

And then reading Echart Tolle's A New Earth I learned how to quiet the mind. It's been great. I still am disabled by ME/CFS but I have found peace.

Thank you Cort!
 
That's great to hear Sushizim. That's a great insight...if you can't do....then what you can do is work on 'being' - which is probably the most important thing anyway. We spend most of our lives doing - the time just runs away. The silver lining for some people with CFS is accessing being - (see - the Snail Book).

I would argue that I was a lot better at 'being' before I had CFS - now I have work at it - but I do find that working at - building that muscle - does work and when I find peace or stillness - it is wonderful :)
 
Thanks Cort for a very enlightening blog. I am looking forward to more because I know I need help in this department. Just reading your words are soothing to me as if a whisper.
How I wish I can achieve this state of be-ing without all the worries, anxious thouhgts and pain.
Thank you,
Nielk
 
A lovely topic Cort, and yes I so agree. Seems much in the nature of this illness when one can do little that old connection to just "being" may be found.
 
I missed be-ing above all in my struggle with CFS; be-ing is after all all about quality of life - which we often assume is a function of our health or our circumstances. We think that if we have the right circumstances - the right health, the right job, the right family, the right toys we will be happy and often those things do match up - but what if you don't have those things? What if your body is not well? Or you don't have a job? Or family support? or X or Y? Does that mean happiness or satisfaction or some kinds of wellness - are no longer available? According to people who deal in those areas - absolutely not.

So this is a diary, so to speak, of my attempt to find happiness, wellness or what have you in a unwell body.

When I am engaged in activities sometimes I look at whether I am being engaged in them - or I am thinking about them as I do them. Am I just be-ing in the moment or I am thinking....It's all about bringing me back to the here and now......which is almost always a more relaxing and healthful place to be.

For me doing this is like drops of water filling up some large underground reservoir of being or peace ...it's slow...it takes time.....but if you keep at it - if you keep the drips coming it does accumulate and it does fill up:)
 
Always in the here and now - even planning ahead, don't actually go into the future. For all the beastliness of this illness and its various stages it taught me that - each day as it comes. Giving up my own expectations of myself or others of me came as a relief. Big advance of the day - can I make the Bathroom only and recognise things around. Being a student of Indian philosophy - Yoga etc helped enormously, turning in. And blissful sleep slowly returned. I think peace and beauty is one's very nature despite all.
 
Great! I look forward to hearing about your journey.

I like Toni Bernhard's book "How to Be Sick" on this subject, because it specifically addresses how to meditate and/or be in the present moment when your body isn't working and your brain is fogged. It also talks about using "be-ing" techniques to help you cope with illness.

For me, exploring the state of be-ing has been the great gift of having ME/CFS. My life, my very definition of who I am, had always been centered on do-ing and thinking. So when I could no longer do or think, I faced a kind of existential crisis: who am I without what I do? I'm learning that I am more than what I do, more than the opinions I hold. ME/CFS has forced me to explore these questions, and given me the time to do so. But it doesn't come easily.

I had a friend who lived for several years in the wilderness of the Brooks range in Alaska. She told me about an Eskimo word, koviashuvik, which means "being fully and pleasantly in the present moment." I've thought about that, and loved the concept, ever since. I want to live more of my life in a state of koviashuvik.
 
My life, my very definition of who I am, had always been centered on do-ing and thinking. So when I could no longer do or think, I faced a kind of existential crisis: who am I without what I do? I'm learning that I am more than what I do, more than the opinions I hold. ME/CFS has forced me to explore these questions, and given me the time to do so. But it doesn't come easily.
According to this thinkers I've been reading - everyone from Eckhart Tolle to Yehuda Berg to Werner Erhard - we have it all wrong in our culture; we concentrate on Doing or Thinking and think maybe we should focus on just being during vacation time or something. They assert that we should be concentrating on be-ing - on how to learn how to 'be' - because doing and thinking springs from being. In fact Landmark Education asserts that taping into the realm of being allows for enhanced productivity and well-being to occur naturally - without our being aware of it.

That is what I find in small ways.. that just being makes things easier. Many of the things we associate with thinking - however - assessing, worrying, ruminating...all are quite energy intensive, for one thing....Be-ing opens things up - most of those things close possibilities down.

I love that Eskimo's have a word for that - notice that in our culture we really don't....that distinction is not really a part of culture - we're more about producing than being...particularly in the US...

I have ordered "how to be Sick"
 
Being in the Moment is a major part of my Healing since I left full-time work 11 months ago.

I think you'll find that the journey you're now undertaking will give you the key that enables you to live a more satisfying life (within chronic illness).

Just because Chronic Illness & MCS limits your physical self, it certainly doesn't limit your mental & spiritual self.

Look forward to reading more of your thoughts on this subject.
 
I've never commented on a blog on this site before so hope this works.

This post spoke to me, Cort. I seem to have an overactive sympathetic nervous system. I get very 'wired' and have trouble calming down. I'm hyper sensitive to noise and very aware of people and generally feel like I have jangled nerves.

And yet I want to 'be'. When I was at my most ill with ME I discovered Buddhism, and yet struggled so much with meditation and mindfulness. I wanted to 'be', but it just seemed impossible, as my body was always panicking no matter how much I tried to calm my mind.

I still struggle now. It has got a little easier to 'be' as my wired problem has eased a bit, but it is still hard. It's such a blessing though when my health improves enough for me to achieve it. I'll manage to meditate, or manage to sit in the garden and watch the birds and just 'be' there. Wonderful!

And yes, I also recommend 'How to be Sick'. And Thich Nhat Hanh's books if you enjoy How to be Sick. Esp 'Peace Is Every Step'.

Look forward to reading more on this topic, Cort.
 
We are definitely on the same page Lucinda....its the lack of being...the always (or almost always) aroused state that has been, in some ways, the most discomfiting thing about this illness. When I was in my 20's and 30's I felt that other people were passing me not just in terms of career but in terms of maturity....I felt adolescent in a lot of ways...that I was more mature when I was 18 and healthy than when I was 40 and unhealthy because of this kind of 'arousal' that keep me on the edge of things....

I'm looking forward to reading How to be Sick' - Its about time I learned about how to be sick instead of being so angry and frustrated that I am....Being sick is, after all, part of the human condition.
 
Yes I would say the hyper aroused state has been the worst thing for me too. I also find it the least understood by others.

And I'm currently 25, and whilst I don't feel immature, I feel like my spiritual side has become stunted to some degree. It was easier to just look at a lake and 'be' before I got sick. Even though I knew less intellectually about these things, it was easier for me to experience just 'being', and to connect with what was around me. I remember I had a really powerful experience at 15/16, right before my health started it's gradual decline, just watching a thunderstorm. I connected so easily. It isn't so easy now.

And yes, great point:

'Being sick is, after all, part of the human condition.'

It is so hard to accept, but I guess we all have to find a way of living with illness, without letting it dominate us.

I did find Toni's book helpful. I related to her so much. And she shares great tools that can really help. I've been thinking about the book a lot.
 
When I would walk into the forest at UCSC where I was living when I got sick it was like being enveloped by something....I had such a strong experience of nature back then- that was ripped away when I first got it...I definitely got parts of it back but, like you, I was able to 'connect' so much more easily back then...I am working on getting it back...As they say in Battlestar Galactica :)))...I have a plan.....:)
 
This is my first post… I’d like to start by expressing my heartfelt thanks to everyone here for helping me as I learn to accept the “not doing” of CFS.

Direct experience / mindfulness / be-ing has always been a struggle for me. Doing – accompanied by anxious thoughts and an analytical overlay typified my experiences before CFS. I’m not really an “everything happens for a reason” kind of guy but I do believe that CFS has been an unexpected teacher. Doing less – by necessity my world is now smaller and simpler. Being more – stress reduction through mindfulness practice has been the most effective tonic I can find to lessen my wired feelings. It's a weak tonic but I'm practicing :)

Thanks again, Dan
 
Hey Cort,

On this being and/or doing. The percentages of where the average person with CFS are is in 3 categories with the largest being those called the "walking wounded." These people can still "do." However, they must do differently. That's what I had to learn these past 25+ years. Also with the help of one of the very few CFS experts around and some meds as well.

Being is easy but since I can do then the struggle is about how much to do before I get into trouble. Pacing is the key word. But remember, my doing now is not what my doing was prior to CFS.

I was just about ok with the balance between being and doing and then my husband got sick and I found myself unable to keep that balance and I'm still working on that. I am now "forced" to do more because I have to. I am now a caregiver and will be one until one of us expires.

So my being has to be more of a meditative/prayer being and doing exercise as I commune with the Almighty who doesn't require that I do a whole lot but depend on Him. And that is my being/doing now... to depend on Him. My being is... being a child of God.
 
Hi Cort,

One thing to DO is to get rid of that mental list that most of us have of important books that we think we should read before we die, acclaimed movies that we think we should see, places we think we should visit, etcetera. Doing that actually made a noticeable difference in my state of mind. From then on, everything became optional. With ME/CFS I have a very hard time reading or watching videos anyway, and travel has certainly been out of the question since I became ill. My suggestion might sound trivial, but for me, the decision to abandon my mental list was profoundly liberating.
 
Grannycfs;bt3939 said:
Hey Cort,

On this being and/or doing. The percentages of where the average person with CFS are is in 3 categories with the largest being those called the "walking wounded." These people can still "do." However, they must do differently. That's what I had to learn these past 25+ years. Also with the help of one of the very few CFS experts around and some meds as well.

Being is easy but since I can do then the struggle is about how much to do before I get into trouble. Pacing is the key word. But remember, my doing now is not what my doing was prior to CFS.

I was just about ok with the balance between being and doing and then my husband got sick and I found myself unable to keep that balance and I'm still working on that. I am now "forced" to do more because I have to. I am now a caregiver and will be one until one of us expires.

So my being has to be more of a meditative/prayer being and doing exercise as I commune with the Almighty who doesn't require that I do a whole lot but depend on Him. And that is my being/doing now... to depend on Him. My being is... being a child of God.
Very uplifting Grannycfs. A powerful way of being indeed. I notice how too much
'doing' gets in the way be-ing...when it leads to a crash - causing upsetting and painful body sensations, fears and such - that can knock us out of be-ing. Instead of the 'big be-ing' our being becomes wrapped around fear, pain, etc. - which our our 'larger' being is distinct from.

Of course there is learning to be with doing less.......That is a key question - how can you learn how to be with having to do less - to not be as productive, to not have the things that were expected....how to be, in other words, with the fact that you don't have the things in your life that you expected...
 
dschlindwein;bt3945 said:
Hi Cort,

One thing to DO is to get rid of that mental list that most of us have of important books that we think we should read before we die, acclaimed movies that we think we should see, places we think we should visit, etcetera. Doing that actually made a noticeable difference in my state of mind. From then on, everything became optional. With ME/CFS I have a very hard time reading or watching videos anyway, and travel has certainly been out of the question since I became ill. My suggestion might sound trivial, but for me, the decision to abandon my mental list was profoundly liberating.
I don't think this is trivial at all - I think these are profound issues that everyone had to deal with. Everybody with this illness and other chronic illnesses has be-with profoundly changed circumstances. We all have dreams and expectations. Two of yours were lists of books that you wanted to read and places to visit. Other people will have other things.....pictures of what being a good father or mother is or having a successful career or whatever...How do you be with the fact that, at least at this point, its not possible to do either of those of things. That is, after all, an indisputable fact - you cannot engage in those activities (at least to the extent that you wish).....

We can engage with those situations with anger, frustration and resentment - all very natural reactions - or we can working on accepting it and granting being to it....It takes work! For me it takes me reminding myself to accept, accept, accept :). But as you note - accepting it fully brings release - it's liberating....your life lightens up...
 
Excellent post, Cort. I was a type A 'skip vacations' Clinical Psychologist until I left my job in Boston and traveled for 6 months in a 22 foot sailboat. That trip probably prepared me more for this illness than any of my relaxation training or even meditation. I learned what it was to move along at less than five miles an hour becoming part of nature in every sense of the word.

When I was hit with this illness in 1990 it was definitely very frightening since my neurological symptoms were too profound to even sign onto a computer and find a sense of community. I'm still mostly housebound but am lucky enough to live 3 miles from the ocean in Florida. When i can get someone to drive me over late afternoon to watch the seas rolling in I find my biggest acceptance. I'm one with the sea again.

My poetry brings my creativity back to me and adds another dimension that helps me move into acceptance mode. Right now I'm back into a symptom I started out with, being unable to talk without very bad pain. I find myself caught in fear again. I record many of my poems and now I can't do that or call a friend on the phone. Even more isolation. I'm lucky to be seeing Dr Irma Rey down in Nancy Klimas' U. Miami Clinic which takes Medicare and have hopes we'll find our way through this.

I live with where I am and hope for the best. One foot in each square.
 
I'm still mostly housebound but am lucky enough to live 3 miles from the ocean in Florida. When i can get someone to drive me over late afternoon to watch the seas rolling in I find my biggest acceptance. I'm one with the sea again.
I'm sorry to hear about all your difficulties. The neurological implications of this disease can be so profound and I am lucky I have escaped most of the severe ones. When I overdo it too much I have found that the vibrations from speaking can become painful - although I clearly don't experience it to the degree that you do.

Acceptance seems a poor remedy for being where you are - and it is not a remedy - but it is a means of finding some peace amongst the fear. I wish you the best of luck finding a way to be with your condition and to let it be - a difficult test indeed! Of course good luck with Dr. Rey as well.

I don't know what more you can do than be where you are as you say - accept it to the extent you can and leave open the possibility for a return to health

I live with where I am and hope for the best. One foot in each square.

Leela mentioned this process for difficult time which I am going to try.

Thich Nhat Hanh has a meditation that deals directly with what you are talking about: acknowledgment, acceptance, disidentification, remembering your true nature. You can do it on the "cushion" or "on the spot" with anything that arises. Your article reminds me of it. It goes something like this:

Using worry as an example:

Breathing in, aware that worry is present.
Breathing out, smiling at worry.
Breathing in, aware that worry is not me.
Breathing out, aware that no self owns worry.

Repeat until the feeling is eased. A new one will certainly arise!

Eventually, one can just have awareness of the breath and abbreviate:

Aware that anger is present.
Smiling at anger.
Anger not me.
No self owns anger.
 
Hello Cort (and Company),
I'm new to this site and I'm so excited to have found you!!! I've been so hungry for contact with other ME/CFS "survivors" and yet some websites I've found are too much (to my taste) only about symptoms and treatment and how awful the medical system is. And yes, there is certainly a need for talking about all that; I enjoy a good rant about doctors and lack of adequate treatment myself. (Don't get me started ...) But to have discovered (oh, joy!) a blog about BE-ING ... An answered prayer.
A few years ago I was becoming so discouraged by the fact that none of the protocols or miracle cures I had tried had worked. I'm the eternal optimist, but we're talking many years of every alternative and medical treatment I had heard of. Add to that years of spiritual seeking and positive thinking ... and I was not only not getting well, but getting worse. So GUILT on top of feeling sick. "What am I doing wrong? Are my vibrations not high enough? Am I not trying hard enough? What's wrong with me that there's still something wrong with me???" Then one day I wondered if maybe there was some reason for not getting well, like a higher purpose or a message that my body or my "higher self" was trying to tell me. And somehow, there was a feeling of rightness in that, and from that point on, I stopped fighting my illness. I'm no longer at war with ME/CFS. I would still love to be well and am hopeful that a cure or treatment is on the way. But MY LIFE IS NO LONGER ON HOLD.
My priority now is BEING-NESS. I'm realizing how much of my identity has been about doing, (even things like "being" a kind, loving or spiritual person were really about what I could DO-- so that others would see me a certain way.) What does it mean to be a good wife, mother, friend ...? Do I have VALUE as a human being if I'm not DOING, CONTRIBUTING in some way? Am I still lovable-- worthy of love? It calls into question basic ideas about the meaning or purpose of life, not to mention God ... Identity, facade, ego. I'm rambling ...
I have been tremendously helped on this pathless-path by the books of Eckhard Tolle and Byron Katie. Also enjoyed "How To Be Sick" by Toni Bernhard. Probably the BEST book on illness I've read is "The Alchemy of Illness" by Kat Duff, who has CFS. Really great book. (May be out of print. I got it used through Amazon.) Thank God I am able to read ...
I think one of the keys to being-ness is acceptance. I accept that today I am sick and I will do what I can to create as much happiness as I can in this day. That usually means enjoying simple pleasures; that first cup of coffee in the morning, my dogs' excitement about everything, laughing with my kids, a good book or movie, Chinese take-out..... For today, it is enough. Fighting against what IS just creates unhappiness. It's not about giving-up, it's about surrender. Acceptance. Being-ness.
Thank you so much for "being" here and for sharing your journeys. And thanks for letting me "be" here with you.
Blessings,
Emmanuelle
 
Sorry about the run-together quality of my previous post. (Hard to read all that text.) I'm new to this. I'll try to figure out how to put some space in my writing. :)
--Emmanuelle
 

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