I have been called a bad apple on a recent post because I asked another poster in private to stop posting personal attacks on me. This poster than plays the victim and decides to leave the forum only after taking more personal swipes at me.

I am the bad apple? The baby thread has been altered discretely not sure if it was done by administrators or by the poster. The removed text were personal insults, not constructive criticism. The only thing that those personal insluts added to the conversation were to discredit me and my opinion.

Weeks later and I am still mentioned in posts as the bad guy.

If this poster feels that I have changed so much that I am now a bitter angry person don't you think the appropriate reaction would have been a gee Maria are you ok? Specially if this person was once a friend? Instead this poster decided to kick some one who they percieved was down?

I was accused of de-railing a post by adding my personal opinion to the conversation. That became more important than what I was saying.

Several days later a caregiver posts a letter clearly written by someone who is having issues. A pHD responded to the caregiver that she was being unfair to the Phd because he felt that the caregiver was trying to keep the child from the father. The Poster did not ask for a personal opinion on how to raise a child with a Phd, nor was she seeking advice on how to keep the relationship between father and son. She was asking if this letter was the result of HD symptoms. The Poster than had to defend what she was doing to someone who had an alternative opinion. Not one person addressed the one expressing his opinion that was not asked for.

Except for the subject of the post there is no difference, a poster posts and people add there opinion and experience.

The way the thread ended is different, one poster posted off subject and acussatory, which is what I was accused of doing. The difference is not one person corrected a Phd for adding to the conversation something that was not asked for. Not one person personally slandered this poster for what they saw as an invalid opinion. What would the responder have done if he was slandered for his addition to the conversation?

This board is useless if people can not post opinions and experiences without being verbally abused.

This board is useless to me at this point because of one bully.

This board is useless to others who PM'd thanking me for the guts to print what they wanted to say but are afraid to say because of retaliation.

I feel sorry for all of the caregivers out there who will not be able to get any real life experiences but instead will read all of the congrats posts thinking that they are crazy for all of the feelings and issues that they are facing that can not be talked about.

MRO, you are not a bad apple. You have a very strong (valid) opinion about HD given to you from true life experiences and addressed an issue about the possibility for human error. (Honestly, this is an issue I worry about with my test: there is a possibility that there was a mistake: maybe even a blood mix-up... the possibility is there...) Thank you for your honesty. Second, I have found that opinions and perspectives on HD and related issues are VERY personal and we all have our own and when we disagree: people are offended and hurt (because they see it differently).

My ex and I had knock down arguments about me getting tested. He was hitting below the belt to get me to test and I felt strongly that I didn't want to! He said he had a right to know (because of our children). I finally decided to test (reasons unrelated to his bullying). I can now see his perspective (somewhat) but at the time I didn't think I could live with myself if I had it and my kids had it... I felt so strongly that I would kill myself like others in my family. HD can wreck havoc on a child. Then, we can also survive.

I have realized, that sometimes we just have to let go.... My family has vastly different opions on some HD issues and I can't honestly say mine is right and the other is wrong ( we just have different perspectives...) Sometimes, we take others perspectives and personalize them...

I didn't want Barb to leave and I don't want you to feel useless here. And I didn't think your contribution was out of line... Stay true to yourself and please don't feel alienated here

I don't know much about this situation and there is offcourse always the language gap for me. As someone who is not a native speaker I tend to miss sometimes nuances in your written words. What for me is difficult on this board is the fact that there are no subfora for different subjects. I am a person at risk and I find it sometimes hurtfull to read posts by caregivers. Sometimes I think: I hope my husband is not going to write about my behaviour in due time! We all write from our own perspectives and I agree with you that there must be room for that.

I agree Katinka - sometimes it is very depressing and anxiety provoking when I read highly negative and insensitive comments. I wonder what it would take for us to see behaviour as a form of communication - and not as a terrible ugly characteristic of a person.

You put my thoughts exactly into words! Thank you so much for that! Greetings from the sunny Netherlands!

I understand your feelings Katinka and morethanposguy. It must be difficult to read some of the posts. For that reason, many times when I want to respond to a caregiver who is having difficulties I will send a pm. For many of us who are caregivers we have no other place to go for help. I personally had never experienced HD before my husband. And yes, it can be very stressful for us and I don't believe that anyone intends to leave negative comments to make someone feel bad. I have developed some of what I would call good friendships from this site and I have spoken with some of the members. MRO is one of them. She was there for me when things were really bad. Its hard to sit back and not respond to certain posts when you do not agree with what is being said. Believe me I know. I have also been attacked on this forum. We all have to understand others points of view. When you post something you have to expect someone might not agree with you.

Hello Katinka and Judy - not sunny today in Ontario, Canada - maybe we should take a trip to Holland! lol.

I think that's a great idea Judy, to use the PM area as a place to vent. If we just could all carry the mantra of "DO NO HARM' it might make it easier. I also respect all opinions and found reading everyone's input helpful. If I read something that is negative and sounds harmful I just consider that to be part of the person's story and also a form of communication of where they are at too. For me, I would never intent to hurt someone's feelings by something I shared. But sometimes even when that is not our intention, we can take it in a negative way because of the way it strikes a personal chord in us. It's going to happen. Perhaps when we say things in public space, we consider all the people that might read it.

Just random thoughts,
MTPG.

As Rodney King said, "People, can we all get along?" We all have such different personalities, perspectives and lives. But we are all touched by this disease and need to remember that we're all here for support. I treasure all voices and I think we need to forgive and also to respect.

Posguy,
For the most part, no one posts on this board to mean, not purposely. The exception to that is the personal attacks that I have been getting from one poster. My post to the thread was not personal in nature, just as your post was not personal in nature.

Talking about me specifically, I have posted on this board for years. I have tons of happy stories that I have posted about and helped people thru my own successes. I also have many sad stories that I have shared.

For the past year one person on this board consistantly posts about things she perceives I am doing or feeling, accussing me of conspiracy and on and on and on.

I have been on this board since I was pregnant with my now six year old son. My first post was about my pregnancy and having a child with a then early symptomatic husband. I was shocked and hurt by some of what I perceived were hateful and nasty responses. I understand those posts now that I am into this life much further. Those people spoke of there experiences, not purposely to hurt me or make me feel bad for being pregnant with a baby I would not abort.

Caregivers marry into this disease and many times like myself do not have a full picture of what HD is like. They did not grow up in an HD home and they see little more than what a stranger sees in the family life and its dynamics. Even with a full picture of HD life a caregiver has know way of knowing how HD effects EVERY aspect of life.

Much of how I help people is behind the scenes, there are many things I won't post publicly. There are some issues that should be discussed, and I have posted many many many times in the past years about how great it is to bring an HD free baby into this world but is it really the right choice to bring a baby into an HD life. The difference this time was one poster made it personal.

It is not realistic, nor helpful for people to not talk about things on this board because they might hurt someones feelings. Many people read this board and never post or reach out to someone thru PM's.

I pointed out your post Posguy only because it was a perfect example and was not too much different that what I did, the subject matter for my post is always much more emotionally charged. I don't think that you meant harm in your post to that caregiver but instead you wanted to make sure that this particular caregiver was thinking about what you saw as important. I didn't bring up your post to make you feel bad about what you said.



Edited 1 time(s). Last edit at 05/29/2012 11:09AM by MRO.

I think that sometimes, using the written word to communicate about such an emotional and sensitive issue as Huntington's and care giving for Phd's, our meanings may be misunderstood. without visual clues, a smile or gesture, our message may not be received in the way it was intended.
This forum is a lifeline for all of us, I try to take all posters at their best...knowing that for the most part we are all trying to help, or trying to reach out to others who can understand the unique position we are in. for some of us it is the only place we can come and be honest about what is going on in our world.
As a caregiver, I try to be sensitive to the feelings of our Phd's when I post, but I am sure there are times when that hasn't happened. I value the input of forum members with HD because it gives me some insight into what my own sons might be thinking or feeling. Also, people like Will, Dusty, Barb, Maria, Pat, Judy, me and so many others come from long time wisdom gained through walking hand in hand with HD for so many years. New posters can benefit from and contribute to our shared knowledge.
This place is filled with kind and caring people, even if we don't always "get it just right" we need to keep on keepin' on!
Just sayin'

Carla

Barb left?? What happened?? Been away for a bit.
Melissa

I don't believe that Barb has actually left but she is very busy with her new life and the friends she has made in her new apartment and isn't visiting and posting as much as before.

As for MRO, I don't think she's a bad apple at all. I consider her a personal friend. I consider Barb a personal friend.

We are like any extended family here. We love each other but we also get cranky when something is said that pushes our buttons, and we also have some personal histories too. If you've disagreed with people in the past, you are likely to perceive disagreement again. Also, people in the HD community have changing needs. Someone may bond with someone else when they are both in the same situation (being stay at home caregivers, being at risk and thinking about testing, as examples). Then someone's situation changes and now the people have less in common than before. I've learned over the years that the online support activities of others will change over time. If someone wants a break from HD because they aren't currently caregiving or they've decided to put being at risk aside and focus on other things or whatever and don't have time to post or to IM with me as before, I just wish them well and welcome them back when and if they come back. It's not personal even if it feels that way.

I know lots of caregivers and I have had lots of public and private conversations with them. I'm a former caregiver myself. As we know, symptoms with HD vary. Sometimes this causes serious problems for families if there is violence or sexual abuse or criminal behavior. It is not that this is behavior to be expected but that it CAN happen with this disease and sometimes these issues will be brought to this forum. It's not done to hurt or frighten others even though it is scary for anyone to read about serious problems. But naturally people with the gene or other caregivers who might then worry that this could happen with them.

Denial complicates situations too. Some people with the disease simply cannot perceive their own symptoms and don't believe they need medication when it is clear to their loved ones that they do. That really really complicates the situation because this is a family disease and the family needs to work together. Sometimes gene positive people with will recognize symptoms in themselves and need help from the family but family members are in denial and can't bring themselves to see what's going on , let alone find ways to help and adapt. That is a huge problem too that is discussed here.

Maybe what isn't said here is that we do all recognize that negative behavior is caused by the disease and not the character of the person. I think the reason it's not said more often is because it's just obvious to all of us. We know that and want to move to discussing coping strategies. Many of us have had the experience of bringing concerns about behavior that is damaging to the family and to the individual himself or herself and being told "It's not your loved one, it's the disease" as if this was a solution to the problem and not a starting point to strategize about solutions. But maybe we shouldn't take this knowledge as a given and be more careful to post that we understand this.

I believe very strongly that HD can be managed successfully if everyone is realistic and works cooperatively, including social workers and medical personnel so forum management is slanted towards openness. I count quite a number of people with HD among my personal friends and I love my ex-husband so I hope I do not hurt others with what I post about or the way I post. I do want us to be tactful and try not to be hurtful in our discussions but I think we do have to be available to everyone who needs support and advice with serious issues, whether caregivers, those at risk, or people with HD.

Marsha,
Thank you for your beautiful post, as usual.
Paula

Marcia, very well said! You have put my thoughts into words.......Thank you

If we are not Care Givers, Are we still allowed to Care? If our heart still Aches for our Family Members Still dealing with this Disease, Are we not allowed to feel this pain? If we have fallen by the wayside, Does our input no longer merit any consideration?.


Ron C