First, I feel that I offended Mike with my opinion and ran him off - it’ a gift of mine, apparently. Sorry about that.
The other thing that’s bugging me is regarding the nothing positive thing.
I truly believe at my core that no matter all of the nasty things that might have been created and caused by a rare disease that there is always - ALWAYS - something positive on the flip side of whatever the negative thing is. I’ve given a lot of my energy toward this entire concept, and, well, sometimes it has some lack-luster results.
We all have, I’m guessing, a few negatives from what we used to be able to do; not to be Polly-annish, but I truly think that behind any “can’t” is a “can”…it’s just all in how one chooses to look at it.
BTW, Mike, I would like to know your opinion of this last thought as well as my former one. Please feel free to email me.
Nothing positive? It's a beautiful world, every day. The alternative is pretty gruesome, go to a local funeral home and visit a viewing room. We choose EVERY DAY if it's going to be positive. We choose EVERY DAY if we are going to learn something, teach something or share something. What has come out of my AVM experience? Something positive? I quit drinking because of my AVM. The world is a beautiful place when you're not hungover. Something positive? How about realizing your time is limited and you can choose to live it in misery or you can wake up every day to do something. It doesn't have to be splitting the atom, curing cancer or stop world hunger. It could be as simple as sharing a smile where there wasn't one a moment ago.
The sum of our time on this planet is being calculated moment by moment. We choose, every minute, how we can affect the lives of those around us. We choose how we are going to experience the wonder of this world. We have to provide the script and the soundtrack of our lives.
You have to decide, every day, which is going to be greater; your spirit or your disability. Or medical condition, if you prefer it that way.
Jules, I seriously doubt that you ran him off! If it wasn't any number of my long-winded commentaries, then I'm not sure what it was. I don't think you said anything offensive. I think he would have said that as a reply to whoever wrote the last post, whether it was you or someone else.
I totally agree with both you and Jules. There is always something positive if you look hard enough. I tell my husband all the time, "I know a stroke wasn't the way to go about it, but I'm really glad a month in the hospital "made" me quit smoking." As a result, he quit smoking as well. Everyday, we, not just as survivors but as people, make the choice as to how we will approach our day. I have so many days when I actually yell, "I knew my day was going to suck the moment I got out bed!" It's like that because I honestly feel I made that choice whether consciously or subconsciously. Everyday I force myself to move, to think positively, to remind myself of why I am still here. It works most of the time but there are definitely times where it's too much and I break down and bam, I'm on this site writing a blog and getting the support I need that unfortunately, my husband can't always help me with. It's definitely why I come here. And when I find something that inspires me, or that I feel others in this group can benefit from whether intellectually or emotionally or just to relate, then I will share it and I will defend myself if someone disagrees for what I feel are the wrong reasons. But what is right and wrong on this site varies by person, so there really isn't anything wrong about Mike's disagreement with my posting of this article...that's confusing I think... Everyone STAY POSITIVE!!! lol
I think you summed it up. We are ALL have opinions and perspectives on the matter. Some choose to focus on the positives and some find nothing positive about this experience. She mentioned rights and respect specifically. That seems to be what I expect from all members. And from my vantage point, everyone is displaying that. There were no inappropriate f-bombs or personal attacks (ok, maybe the comment about reading medical literature was a button push, but certainly not an attack). But all-in-all, respectful. Although it seems kind of lop-sided, thank you everyone for the great debate! Mike? Want to add anything?
Thank you for you compliments Eileen, and your comment. My reference to the medical journals came from his comment on his work with avms and in the neuro community. How I took it was that he was saying that one man's real experience couldn't compare to the amount of research he had done and helped get done or that had ben published in medical journals. No one ever visited me other than nurses and my immediate family (and 1 non-family member) I found this site on my own (after my crani and final hospital release). Dr.s gave me little info, I did my own research. I was surrounded by family (my mom and sis and sis's boyfriend) who made fun of me for how my bleed happened, for needing a bed pan, for food falling out of my mouth because I couldn't feel it and for not having the ability to pluck- what became- my solo eyebrow, and then became bitter and hateful towards me because I was an emotional wreck, followed by trying to turn me against my husband for no reason! So, yeah, I believe my own experience provided me with more information than one man's work in a neuro community; so I had more to relate to this one article than anything I had ever read when it comes to avms. I honestly tried to be respectful and respect his opinion, but I definitely felt targeted and my defense system is more hostile than anything else about me. Masturbation, OK, not a very acceptable topic for all survivors. But when the topic has to deal directly with myself and the discovery of my avm, then this is precisely the place the article should have been shared. He made me feel as though I am disgusting for bringing the issue forth and I am not. I kept waiting for him to talk about the minors on this site that might read it, but nope, he only said this site is not where an avm survivor story is to be shared. Even for minors, it is an issue their parents might not feel comfortable discussing with their kids when it definitely is something to be discussed, especialy if said minor has an avm still; so maybe if one of the younger survivors read the article, maybe they would bring the discussion to the parents. And if the parents had no answers or maybe discovered they had more questions than the minor, then they can approach their Dr. together.
And you're right, it is your right to speak up as much as it was Mike and Patti's and as much as it was my right to post the article and respond to all comments whether negative or positive.
There's something I'd like to clarify lest people get the idea I'm a Ned Flanders with all the positivity. It wasn't the case prior to my bleed. I wasn't mean, nasty or grumpy, I just lived with my head down and as mentioned in my blog post, a little hesitant to feel lucky, to prevent the luck from running out. I don't know what happened to me, I wasn't aware of the outside world and what I was experiencing inside my head is still a bit of a mystery. I found out quite a few of my friends were shaken up by my experience. There were a few other things that really changed my way of thinking.
Many people have difficulty expressing their feelings. People also don't react the way we expect them to react. Finally, people aren't clairvoyant. If you want a hug, ask for a hug. If you want some time, ask for some time think. But the most difficult is to say you are afraid, because they may be afraid too and sometimes the best way to deal with fear is to take that leap of faith and tell them as long as long as you're together, we will make it through.
I'm closing this discussion because this thing has gotten entirely out of hand. People seem to have forgotten that we are on the internet where people come from all over the world and different environments and different backgrounds. This means we all have very different opinions. I honestly didn't think this was the wrong place to post this article and still don't; therefore, I will end this argument/debate and stop feeling like I must constantly defend myself. I appreciate the feedback. Mike, if you haven't already unsubscribed from this thread, then I'm sorry I became hostile in my defense towards your comments- Patti, too. I don't want enemies, especially not here. I want to stay a member as I am just as much a survivor as everyone else here...and my opinions and experiences and story matter. Sorry if this seems like I'm forcing my word to be the final word.