I've been very hesitant to share myself with the social medias, like Facebook and YouTube. It's not only the lack of privacy that keeps me away but another more disturbing feature.

Why is it so important (on YouTube) to say whether or not someone "likes" or "dislikes" something? You could be having a really bad day and can "tune in" to your channel and find that a handful of people dislike a photo or video you dared to share. What's the point of that? So that you can feel even worse than you already do? It's difficult not to take stuff like that personally. Those of you who partake of all that, how do you deal with the negativity? I know, you can keep your channel private or you can "turn off" that comment area but that's not the point!

I'm an artist, so constructive criticism has been a part of my life since my teens. In fact, I miss that give and take of ideas and improvement you get in a creative environment. But "dislike" is not specific or helpful! Or nice.

With so much animosity in the world, wouldn't it be better to support instead of judge? Can you imagine what it would be like here if people put up a "like" or "dislike" of your posts on this forum? I shudder at the thought. That's why I love the "thanks" option. I probably don't use it enough.

I'm not certain I have the energy to keep up with any sites like that anyway. I barely keep up with my dishes. When you can't socialize much due to this disease, it would be a nice way to share things but how do you deal with people who simply want to tear you down? Geez, it's like being in high school again! I dared to enter a video contest - first time ever and only my 3rd video - and it was brutal. Because of MG, I couldn't "shoot" actual video and had to do illustrations on photos instead and create a movie from that in iMovie. I didn't want to reveal that I was "sick" and couldn't do that because then everyone treats you differently. Do people really lack the ability to be compassionate?

No wonder people are afraid to share of themselves, virtually or in real life. We could use a LOT more kindness in the world.



Annie

Annie, I understand. I ration my emotional energy very carefully. I have none to squander on getting upset by unkind people on the fringes of my life.

I use FaceBook, but under a pseudonym. I have a separate account under my real name, but I never post anything there, and I rarely check it. The point of this subterfuge is to allow old friends to find me by searching for my real name--but then I get to decide whether to invite them to my real account (under the fake name) or just let them stay in my fake account (under my real name).

Abby

I fully agree with you. neither "like" or "dislike" have any meaning unless they come with some explanation of why this is so. If you do not have the time or energy to seriously think about something, why comment at all?

My son taught me this lesson many years ago. He came one day from school with a drawing he made and proudly gave it to me. "what a beautiful drawing" I said briefly glancing at it, being pre-occupied with something that was on my mind at that moment. "Mom" he said " How can you say it's beautiful, when you didn't even look at it?" . So, from that day on I have learned my lesson. My son is not going to accept from me superficial answers to anything.

I'm not a facebook person either. Besides the things that you said (and which I agree with), I am very leary of a never-ending electronic profile being aggregated for (or against!) me!!

I really get concerned about privacy - for the under 20-year-olds especially. They have no idea that everything they type is archived somewhere - by some entity. And with data storage as cheap as it is and retrieval mechanisms as sophisticated as they are...these kids will have a virtual history of their lives available in perpetuity to anyone who wants to pay for it.

I totally agree. I just got a facebook page to keep up with my 6 grandchildren who are scattered all over. After getting it, all these old school mates whom I haven't heard from in a hundred years showed up.

Some of the chatter is just like high school. Example: What kind of "poodle skirt" did I have? era 1955 I was lucky to have a printed cotton skirt I made myself. I hate the class difference. You know "upper class" and "lower class". That was my hometown and my father did the best he could do for his family.

I haven't mentioned any illness and I will not, as it is an automatic "turn off".

I don't understand the mentality of people who have no compassion but who are just all about themselves. I just turned one person off tonight who was posting her political views every time I opened my page. I didn't sign on facebook to hear about someone's politics. I guess I am venting my disgust here. Hope you all understand.

Gabriella

You have got an excellent point there. I have a good friend who is recruiting people for a large Hi-tech. company. He told me that they do a full Cyber-space profile on every one of their candidates. Even if you use a pseudonym it is possible to find who you are if one truly wishes to do so.

On the other hand-a 20 year old that does not have any internet community appears peculiar. (just like someone that age 20 years ago would appear if he/she never went out with people). There is really no turning back. It is just learning the ethics and rules of those societies. And we are obviously not there yet.

For instance, I recently saw an interesting discussion regarding if it is OK for a physician and his/her patient to be "friends" in face-book, and what should you do if your patient asks you for advice on the internet. Are you obliged to his confidentiality? Is it OK for you to refuse to give medical advice and just socialize? I believe similar concerns would be for lawyers, social workers or any one who has a profession that involves delicate matters.

I see two opposing trends in response to this relatively new communication avenue. On the one hand everything is open for everyone to see. On the other hand people are much more concerned regarding confidentiality issues and their privacy. I think both are reasonable responses. I believe that the pendulum will eventually bring a new balance between those two, but for now we are still in the infancy of this tool.

A few days ago, I wanted to see one of my patient's file in the computer, as she wanted me to give her advice on the phone. When I got into her file, I got a message that I do not have permissions to see her results. I can only see results of patients who have been in my clinic within the last 30 days.
on the one hand this protects the confidentiality of patient's files, so that only those who are actively taking care of a patient can go into their files. On the other hand it seriously jeopardizes patient care. I ended up asking her to fax me her lab results. It became even more ridiculous when I tried to see my own lab results, as I got a message-this is not your patient!

I wanted to tell the stupid computer- what do you mean this is not my patient? who do you think found the best management approach for this patient? Who consulted multiple experts around the world? who read everything that was ever written about this illness to figure it out? If you are not going to let me see her lab results I am going to send you back to the computer ware-house and never talk to you again.

Of course there was no one to say this to, and even if there was, I know what his response would be-he would laugh at me and say-Go on, return me to the computer warehouse. I want to see you manage without me for one day.

alice

Abby, I think all of us here totally get that saving energy thing. Every single day I miss being "normal" and being able to have significant and meaningful conversations with people. Or to get up and do anything I want. But, no, MG "decides" what I can or can't do. Family was over this past weekend and the socializing was too much for my MG. I haven't been that bad in awhile. It was worth it but it also made me have renewed sadness and anger because, even when I do socialize, I'm not normal enough or strong enough to say or do what I want. BTW, I'm glad you still want to be in contact with people from your past. Those who I want to be, I am. Most of those who I'm not, I frankly don't care about seeing again. There are a handful I wonder about and miss but they're off having their own life.

Alice, No good teacher would let a student get away with "yes or no" criticism. My Dad was a debate coach, so critical thinking was in the mix since birth. Sure, it's nice to have compliments like, "I like your hair." No one has to say that it's the angle of the cut or the highlights or whatever. It's nice when people are nice. But when it comes to something you have worked on, put your heart into, then it's important to be thoughtful about any critique. I think your son must be very smart. And brave to say what he needs from his parent. But not all kids are that way. Some are really shy and I think it's those kinds of kids that have the hardest time in any social media. They can take things very personally and to heart.

Sue, Have you ever looked at something or ordered something on-line and then had that store pop up in another site? Google does all this cross-marketing all the time. Really creeps me out some days. But then there are times when it makes me laugh hysterically, like when they put up female singles on a computer game page. Sorry, but if I could "date" it would be a man!

Gabriella, Well, that's a very useful way to use Facebook. Though, I often email or send disks to my family of photos or movies. Even emailing isn't private. You can always put something up that says you're allergic to political conversations. You know, I don't know why people run for the hills when they learn someone is sick. We're not contagious, we don't want to talk about our illness nonstop and we WANT to be treated normally. So much prejudice, so little time.

Alice, they are starting to make "intelligent" computers in Japan and that is simply scary. And when you are dealing with cancer or something equally serious, why 30 days? As if a patient will get all better in that time period. It's stupid.

I entered this contest not because I wanted to win but because I'm still so sad over the loss of my dog Teddy that I needed a distraction this week. I don't think I've ever been this sad, actually. And when I create, I lose all track of time and space. It takes its toll though and my MG has been bad this week. I doubt I'll enter a contest with my work again. It interferes with why I do it in the first place - out of sheer love of it.

I "like" the feedback you guys gave. It was helpful, considerate, supportive and you brought things up which are good to think about. That and it's great to have a place to go to vent, especially when you don't have a lot to give anymore. I'm so tapped out right now. Thanks for being there.



Annie

AnnieB,

I have discovered a few websites for artists where people are supportive and encouraging. If you are interested, I can send a link to my favorite places. I think your art would be welcome (I love your pumpkin art!). I say to steer away from facebook and Youtube, find a website specific to the kind of art you create...

I'd like to see your videos if you care to share them...I have one of my own that I created, it is a spoken word poem with music in the background with a photo and art slideshow...it is my first experiment with a video.

Oddly, I've found that many people who join these online groups for artists have autoimmune disorders or other health problems and are very accepting of everyone.

I have discovered some online communities where I feel accepted, it is a wonderful feeling, especially since I never can find the energy to go out in the real world with any friends and was getting depressed over this fact...it is nice to have a few friends, I've gotten over the fact that they are online friends only...of course I still look forward to a time when I might have enough energy for a real friend again...

Great topic for consideration.

Susan, Please do share those sites, for everyone's sake! There are a lot of creative people here. And share what you've created, if you feel like it.

I'm going to take the video off of the site after next Monday (08-15-11) but you are welcome to see it until then. I don't want to be sued by the distributer of the music! We only had permission to use the music for the contest. Alex Band, BTW, is an amazing musician who I only found out about this spring, right before Teddy died. The music sort of helped me through it all. Especially the song, "Wherever You Will Go," which makes me think about loved ones who have passed still being with us after they're gone.

http://www.youtube.com/watch?v=Gm4bQrwKnXQ

And, yes, that's a photo of me. Annie Gray is my pen name. I started that silly "Way Too Retro Productions" after my Dad died in 1996 and I put together older music that he liked for his memorial. There's a lot of metaphor in the video, along with the "infinity" symbol. I've always wondered how many people we "pass" along the way who could've been in our lives if we'd taken the right path.

Now, be nice everyone.

Annie

Love the video! thanks for posting it