Originally Posted by Linn

Tinglytoes ~

I feel like you spoke from my heart. You are able to say things so much more clearly than I am, though. That expressive clarity is one of the things I had to give up. To me, it is the sign of a very good mind.

I struggled for years with the reality that my physical appearance doesn't match my profound inability to function. My facial muscles don't work like they should any more, but the slackness just looks, to others, like "depression". I can pass for "pain and dysfunction free" in public without a thought, but every single minute I spend out in the busy environments, or in face to face conversation, is torture beyond description. Just using my voice is often torture. I have no desire to explain myself or excuse myself to other people, though, unless I've committed an offense, and so I could not find a way around this. (However, those people whom I've brought back into my life from my past know how animated and bouncy I "was", so they'll see the difference, face to face.) I used to resent not simply having lost a leg or something obvious. Now I am glad that I "pass", because it is a normalizer.

We used to provide therapeutic care for teen boys who had committed horrible offenses, and had significant behavioral challenges. Our approach, generated during my previous time as a Social Worker, was to look candidly at their dysfunctions and deviancies, and set up their environment in our family home so that those dysfunctions and deviancies became irrelevant. It took very careful planning. The end result was that they were able to be "just boys" in a family, and get up on Saturday mornings and watch cartoons in their PJ's, and have all of the daily family experiences they truly needed. Inside the home, you seldom knew the extent of these boys' histories. They could play and laugh and be actually "normal". We couldn't extend that environment into the public with most of them, except with the support of a few young, dynamic Case Aides by their sides. That seems to be my approach to my situation. Define the mechanical dysfunctions I have, adapt where I can and find a way to make the rest of the issues irrelevant, while still engaging with the current of life. I think of the computer as an "adaptive tool", in that regard.

I think people assume/expect that they have so much control in their lives. Any evidence to the contrary means they have to reestablish control by converting it into anger, and directing it at a chosen "cause" of their injury or loss. Acceptance has become equated with "failure" or "giving up". The best gift I now own is the complete knowledge, and peace with, the Truth -- I have no "right" to any control over the physical aspects of my life. Even the most basic, fundamental aspects, like food and shelter (I have gone without the former more than once in the past few years). The only Actual control I have is to accept Life as Life, and to choose to find joy wherever I can, and to feel my frustrations and pains honestly, but to not over-indulge them and let them take me over. I'm from the Puget Sound Region, which has borrowed a lot from the culture you live in. (I could not live in CA, as beautiful as it is there, for just the cultural reasons you refer to). My whole peer group settled comfortably into that successful, intelligent, "enlightened" upper middle class, with all of the associated magical thinking. I love so many of these people, but I see their assumption of control in their lives and I actually pray that they never have that shattered. I know, however, that if they do, and they survive it emotionally, they will be so much more free, and really truly happy. I know that now that I have reestablished relationships with these different, important people from my life, I can tell them, when it's important, about my health issues, and they will actually see me as I am, compassionately and with real empathy. I can't explain why this is the case. I think it's partly because they're already comfortable with me as "normal" by their unconscious definition, and so what's wrong with me physically will, by default, end up being included in their definition of "normal".

I like the "Wounded Healer" archetype. I associate that with what you are saying. The person who has lived through what life actually has to offer and become the stronger and more compassionate for it, and therefore has a kind of Peace that other people want to emulate, or that can serve to teach other people. My dad, a Methodist Minister who is fluent in the original Biblical languages, loves to point out that the NT Greek word used in the "Sermon on the Mount" is actually a word that translates accurately as "wounded healer". He will demonstrate how this is the whole point of that sermon. I think that almost every culture and religion has that same archetype. Not that suffering is the goal -- but seeing life as what it is, from the larger perspective, and letting go of attachments to physical identity and possessions and the expectation of Perfection, as a result of having lived through life's challenges, and making peace with the world, and with a true Compassion because of this, *is* the point. What I find ironic is that when I let go of the narcissistic expectation of a sort of functional perfection, I found True Perfection, in the Universe and how the whole process of Life works. It's so much more freeing to see that Perfection in what Is, rather than to try so hard to impose the reflection of it over what is.

I really wish I could express myself with your clarity. You demonstrate so much insight and perspective just with that gift. I keep checking in to this forum to see if you've posted. I think that you probably bring a lot of good to the world, whether or not you mean to, just by having achieved, inwardly, what is unconsciously shown by your insight and your ability to communicate it simply.

Thank You :-)

Linn

Originally Posted by tinglytoes

I have to thank you for the time and effort it took to share your perspective on these issues. I have no doubt your mind is in very fine shape, very bright, insightful and wise in the ways of adaptation to circumstances beyond ones personal control. The mark of a wise person, fully "cooked" in the process of becoming fully human. (My personal goal) You state clearly with personal experience the process of individuation leading to the transcendence of personal suffering. The point is to have no 'hope' left, only surrender and acceptance to what presents itself in this life right now. Perceiving perfection in all that is in this moment is the way out of suffering. Right on! Every teacher from all traditions came to this same conclusion. The only thing we can control is our willingness to live life fully embodied, while never forgetting our divine nature at the same time. Is this not the cross, paradox itself?!

I loved the reference to your dad's talk on wounded healer. Yes this does sum up my own viewpoint of the process. I know that some folks presume to attribute meaning to this term, but only those who have explored the dimensions of this process would dare to presume the label for themselves. I see you have dared, without the least presumption, and it strikes me as an awesome journey. I have not had clarity in understanding the symptomatic and psychological aspects of MS and appreciate your descriptions very much. It helps me to understand the broader range of how people suffer alone and often in silence. Have you ever read Prema Chodren's book called When Things Fall Apart? /She is a primary example of heroic wounded healer "friend". From how you write, I suspect there is some Buddhist background in your life somewhere.

How difficult it must be to be both lonely and beyond the ability to find relief in close interactions with others! yes, thank godess for technology today. I think of the phrase I often remember to tell myself when things are challenging--'Jesus did not only get on the cross way back then, we all get on the cross every day !-- Meaning life is what it IS as you so aptly put it. And that life is inherently a cross of the sublime spiritual forces meeting the sometimes horrific humanity of this physical reality. It is no ones sin, judgment, fault or failing. Only what being human allows us to "face, fight and finish-Baba Hari Das" in this lifetime. Or the next lifetime if you prefer to see the karmic angle as valid.

It occurred to me that we have gone far afield of the original posted topic relating to computers, face book, or anything tech related. Do you suppose we should begin to converse via one on one messages which could be posted or not in another area on this site?

I admit to being overwhelmed at times with the options and choices, and very naive on what the proper etiquette is. I am very low tech in nature. I have enjoyed thinking aloud with another who not only gets me but shares such a rich level of experiences which enriches my own.

Let's continue to expand on the theme of "normalizing the abnormal" and often invisible disabilities, into the realm of an encompassing version of real life as it IS-rather than the preferred version of life being the only option worthy of acceptance!

At one point in the last year, I had the strong urge to start a support group for anyone affected by the struggle to cope with any apparent or hidden handicap. I had the idea to use the acronym PRISM-Progressive, Recurrent, Illness and Soul Making-(it looks better in written form because it is harder to say without sounding like prison). Especially to invite caregivers, family and friends to share what works and expand the collective definition of what healthy means.

We desperatly need new training in this area for therapists and professionals on every level. Our country has so sanitized suffering, death, dying and loss, into the rejected realms of society, that we do not have enough opportunity to learn from what happens naturally and is a given in other cultures, nor options of how to perceive suffering in a healthier way. We are very poorly informed in this area to say the least. My exposure to fullness of real life was discovering a whole world paralled mine. Beginning most crucially with my stroke. I was completely unaware of this parallel reality. To say the shock was profound is an understatement.

Maybe a new blog topic of the trans-personal meeting the personal within the neuro-talk community? Whatcha think?

Blesssings and Thanks for You Friend, TT

Originally Posted by Linn

Tinglytoes ~

I haven't read "When Things Fall Apart". This sounds kind of crazy, but I have a kind of self-conscious reaction when I read books that are too close to my own journey. I end up constantly "checking" myself against what I read, and I lose track of the organic journey itself, if that makes sense. However, I find a lot of kernels in fiction. I find myself mentally coming back often to "The Poisonwood Bible", for instance, for its example of the simple, non-deliberate integration of persons with different abilities in some cultures, and also regarding the journey of one of the characters who lives with a debilitating deformity, and the unexpectedly unhappy result of her being "cured". However, one nonfiction book that was an essential part of my own journey is "The New Earth". I found that the author has the same kind of clarity and simple expression of infinitely complex and transcendent ideas as you do, which I see as a sign of actual understanding/authentic wisdom. I still had to weather through the initial phase of self-consciousness, but it was worth it.

My only history with Buddhism was as a Religious Studies major in College. I also worked in the Department as the student assistant, and we had the honor of having a major Buddhist scholar as a professor. Truthfully, though, I didn't identify (at the time) very much with Buddhism. We had a very thorough and comprehensive study of the history and practice of that tradition, and I think the spiritual message got lost in the volume of information. My area of study (and fascination) was Process Thought, which at that time still had its roots in Alfred North Whitehead, but since has been completely changed into something much less. To me, it was the same fundamental spiritual idea as Buddhism, but from a distinctly Western (and completely independent) approach. I also really loved the Hindu Tradition. Ultimately, it all converged in my consciousness as something very much my own, after the time it took to process.

To clarify, I don't have MS (thank all of the gods!). I use MS as a familiar analogy, after seeing my MIL and a few acquaintances struggle with it. My version of the invisible gift that has changed my life so dramatically is a type of arteritis, which has led to a number of secondary diagnoses and challenges, some of which resemble MS.

I don't find that I'm lonely, but I have been, for sure. We moved here partly to escape the whole rat-race and the need to chase superficial goals, etc, that seemed to infect the area I had grown up in. The culture here is a completely different paradigm, and it isn't something I want to be a part of, but our location is a beautiful, savage, peaceful place. I can be comfortable following my own path, though, as long as I can still merge with the social currents (on my own terms). Being here has given me the time, space, and peace to collect myself and understand where I fit in the bigger picture. It's been kind of a retreat. My husband works away from the home for most of the week, so I have plenty of peace! (He texts and calls me regularly, though - no emotional neglect, here). I do miss my family, and I miss hugs. My family is a pretty open and communicative family, and we hug a lot. My brothers and Dad give wonderful back massages. I miss physical contact, and falling asleep in front of my parents' fireplace after a big meal, and my little nieces and nephews. :-)

I would love to continue our conversation! I am awed and inspired when I read what you write. You really speak to my soul (and get me to think). Which format works best for you? I'll send you a message with my email address, if that works. Does this site have private messages? I like your idea of starting another thread or blog topic. I love your PRISM idea! Is that something you would start on this forum? Or on a separate web site?

BTW - I hadn't thought about "hope" until you mentioned it. I think you're right. I don't even engage with the word, really. I hadn't realized that. hmmm... . Thank you for that awareness! :-)

Thanks for you, too. :-)

Linn