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Originally Posted by Linn
Hi Tinglytoes :-)
I do understand what you mean by the one-dimensional quality of sharing often found on facebook. I find value in the communication I am able to have with people I actually knew, at one or another time in my life. In our sharing -- as they have found value in me as much as I have in them -- I find that it ranges from the kind of conversation I might have if we ran into each other at the market, to the kind of discussion we might have over coffee or wine in an evening, to very in-depth, compassionate conversations, some private, some public. They know me as the person inside of this body, and I'm not obligated to have to explain any of my physical dysfunctions. I truly wish that life, face to face with the general public, would be that way, also. I've been able to actually, physically get together with different people as a result of our contact on facebook, for the first time in years, and because they are already engaged with me on a deeper level, they don't even notice the handicap (for lack of a better word), that I bring to the table. We just "pick up where we left off". Those people I "know" on facebook who I haven't had a previous history with, I liken to the peripheral people I might exchange pleasantries with at social hour after church, or wherever. Pleasant, but only fulfilling in the social sense. I felt so socially isolated for so long, because to have to introduce my limitations in any social relationship brought up huge issues (lack of understanding, the impulse to patronize or offer "sympathy", etc), and I don't want to discuss it as though I am needing to "make an excuse" for who I now am. I am who I am, warts and all, and there is a real aversion in today's culture to incorporating people with different strengths and weaknesses. People want to make a Cause out of MS or Cancer or the pet disease of the year, but they don't simply want to see people who have these physical challenges as just another person, who may not be able to walk as fast or stay up as late or drink or go out, but like anyone, just a person. Facebook, in my life, opened that door to me :-). I don't have to "hide" my mechanical dysfunction, it just doesn't have to play a role. I got together this summer with a friend I had played with from the time I was 8 years old until we were teenagers. At one point, at dinner, after a fantastic day, he glanced at me and said that a mutual friend had brought up my health issues to him, and he had told her that he knows that I will discuss it with him when I feel the need to do so. Then he said, "You know you can, because we are 'family'. No pressure." He said it like he was just confirming what he knew I knew, smiled, and we resumed our evening. I just smiled and said, "I know". It felt like a hug.
I like your label, "Health Bigotry". We really do, as a culture, define ourselves narrowly, based on some ideal of physical perfection. People isolate people with health issues because, I think, we remind them that we are all subject to anything, and there is no guarantee of great physical health. Society seems to have lost the ability to sympathize without patronizing, also. I think, generally, there was a time when people responded rather practically to others with health challenges. Probably before the time that we decided we can "fix anything" with the right pill and the right diet and the right personal trainer and the right herbal concoction. Now, it's just awkward for everyone involved. If they could only realize that I actually feel sorry for *them*. The gifts I've received as a result of the path my body has taken have been profound, and I would not trade it. I was thinking last night, watching tv, that there aren't characters on shows with disabilities, really. Or commercials. Why don't they have the 40 yr old mom of three, in a wheelchair with MS, cheerfully putting the laundry detergent in the washer? The only time they show people with physical issues is to market a pill, and those commercials offend me on so many levels.
That is really great that you are able to do the art classes! I dream of being able to involve myself in something like that, some day (although probably not art, for me). That would take a lot of strength and persistence. Credit to you!
BTW - this forum is a gift! While I enjoy having relationships that are not defined by what I am able to do or not to do, it is often a little like living in a different country. I really need to be in touch with people who know and understand my struggles, and who have struggles I can relate to. Thank you for your conversation :-).
~ Linn
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Hi Linn, I appreciate your sharing. I am happy for you that FB has provided an equalizing meritocracy for your interpersonal relationships. I had not really thought of how obviously it could work in ones favor to equalize the interactions, especially if one had a mechanical device which in everyday situations would be obvious, yet free from this limitation when on FB. I have not gotten into it much in my area so far. It feels pretty la-la out here in, "Santa Cruz-Keep it Weird"!
I myself have rather severe, ongoing progressive health problems, which ironically do not show. I have the opposite issue, nothing to show for all my health problems. My friend with Parkinson's tells me, half jokingly, that I should wear a sign around my neck saying "Not as good as I look"! It is very difficult at times to try to avoid explaining, or defending my reality to strangers or teachers etc... I haven't worked since '97 and live on a shoestring. This is also very limiting for what most take for granted to make choices, I cannot take for granted. I look fine, present as well and positive, act like I feel fine, unless one looks closely, and no one knows anything unless it comes up or I trust them enough to share. I have tried it all different combinations, as I am sure you must have as well. It is not easy to hit the right tone. Sometimes because I look well. I have to pretend that since the time when I could barely walk, I am truly now all better. Like it was the flu or something. The expectation is always that I could fix myself if I really wanted to. Yeah and health is for the rich if you can pay the alternative healers the exorbitant fees for chakra healing with space beings etc.... It is true i feel bitter at times.
often once I share even a little bit of my life reality, their eyes glaze over because my over-all presentation is not as expected and they get a bit freaked. Fear is more like it. If it can happen to me it could happen to them at 48!!
I agree that the lessons I have learned from the entire fifteen years plus, most likely could not have been learned any other way. I often feel saddened that the lessons will be wasted on those who need to hear them, due to the resistance to accept that life is not under our control despite the healthy focus in general. This financial downturn and the loss of home and all reasonable resources for thousands is akin to the sudden loss of physical health. The denial is similar as well. Loss is loss and does not need comparison. However we do not as a culture enfold and encourage those who fall between the cracks of the standards we hold dear as identifiers.
What wake up call for all of us that materialism is being broken down, finally shown to be as shallow and devoid of true meaning as it is. The great equalizer is Katrina type catastrophes and serious illness. At the same time we all have more than enough to share if we took the need seriously enough to step up and offer to each other according to each ones resources. Perhaps we have more resources than the average person whose life goes on as usual. Perhaps we have more muscle built up for facing adversity and keeping our head on straight and our hearts open.
I live in Santa Cruz CA with a health obsessive culture everywhere you go.
At no time in my earlier life did I know how to deal with handicapped persons, and had no exposure to stroke survivors until I became one at 48. Then I had to be thrown in with very elderly folks who naturally suspected I must be faking somehow. It is hard to be in the position to not fit, and feel unaccepted, even when I shared the same reality of struggle to accept the handicap, grow beyond the symptoms, overcome negative labels and re-gain my self concept, same as anyone with an obvious walker or wheelchair. The cultural indoctrination is a trip.Expectations all over the place. I ended up going to places my own parents were unable to cope with because they hadn't gone through them yet themselves. That was trippy.
The acculturated health bigotry is societal and encouraged by the grandiosity of our narcissistic modern beliefs. The belief that everything is possible if one only claims it true, with enough ju-ju it will surely manifest as we believe we deserve. Books like the Secret, authors like Louise Hay, and endless new age teachings are typocally one sided.. Basically splitting life into the shadow, into good or bad. Eventually those who expect only good experience the failure of their body. When this happens, the confusion that all life is a mixture of every good and often many, very bad things, becomes the inner teacher. Limitation and suffering seems to be how the human race evolves to become more compassionate and understanding, we are not actually separate beings. We don't need to define ourselves by our negative experiences. Yet at the same time I refuse to claim or label my process as "bad".
How do I know in the big picture if there is not some serious soul making gifts to be had in this process? How can I ever know if by being congruent in this present reality, someone else will be able to awaken their own heart to tolerate less than ideal life events in their future?
Sometimes I think that those who hold a part of the suffering, physical aspect of this planet are like the proverbial "canary in a coal mine". Indicators of the planetary soul -making process. No one escapes the loss of body identity in the end, some just get to practice it earlier and longer than others. We are the teachers, whether others yet value or recognize this. The humbled ones who are waiting to be heard, as we know our experiences are the often a valuable message of the way to the heart. We are the "gold made out of lead" if you will. What could be more worthwhile than this??!! Best Wishes TT