[Linn]

Originally Posted by tinglytoes

Hi Lin, I am sorry that your local community chooses to shun you due to their lack of experience in how to be with those who suffer chronic debilitating conditions. I too experience this, even from communities associated with spiritual practices related to yoga.

I am enjoying the connection with others on this forum, who know without resisting the reality, and are able to offer compassionate witnessing, actively seen as normal for each individual within our unique process.

Facebook doesn't do much for me since it usually presents mostly the idealized picture others wish was true about themselves. Rather one dimensional. Whereas in this forum the depth and caring are genuine and profound. The more I open to share the more I receive in return.

Not many places where this happens in my life, since isolation is the main result of chronic, debilitating, long term conditions. Cultural expectations that everyone is entitled to good health and what I refer to as "Health Bigotry" to believe there must be something "wrong" with a person if this does not hold true.

Whether I like it or not this seems to be the prevailing pattern. The only folks who taught me differently were the staff at the stroke rehab place and a school setting with a program for post rehab recovery into every day activities and socialization. Three years there allowed me to transition to take community college courses. Now I take one art class every semester. All I can handle. Credit/no credit and just do what I can and let the instructor know my status from the beginning.

This has allowed me the inclusion into life just enough to have something to relate to others with. I have fun when I can do the work, and most of the time struggle. But it gives me a sense of self esteem being creative, mostly empowering unless I push too much and get symptomatic again.

And here is one more place I can add to my recourse bag to feel like a fully engaged human being. Good news! Thanks for writing TT

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