Faces of True Courage - Psycology Today

Mike having watched what goes on here is sometimes amazing. Someone is so scared when they first get here and then in time they become the ones helping. Most get past it in time and move along but some stay because it becomes a calling. They know that knowledge is lifesaving is bladder cancer and by staying they pass that on. And it does not matter if those in need are a homeless person in a public library or a king in a palace they are all the same here. I better stop or the people that criticize us will start to think a good thing is going on here.

Mike I tried very hard to not beat up on anyone as I understand where everyone was coming from. And it had been duly noted that you like the wise man you are had tried to hold up the white flag in every way you knew how. You have every right to voice your opinion and in a normal situation I would love to debate with you on your stance on male vs. female differences in bladder cancer and I think it would be a good thing as sharing ideas is never a bad thing.

But quite honestly this whole thing was not about male vs. female or courage in cancer it was about advocacy work and frustration. We are working very hard to get the word out and we do not have the money to do it the easy way. We have to beg for every word and work to build relationships and those relationships may lead to the next article or an introduction to someone who could help us in another way. Often what is written is not what we would have written but we are grateful for every word and politically it is not in our best interest to debate the point. Every article is not about that article it is about raising awareness and the next article. Maybe our response was not well worded or was too strong but that is where it comes from.

Personally I can tell you it is a fact that I get three complaints for every word of praise and that wears on you at times. I am not a saint and I am working on letting things slide but I have been called dirty names in more than one language, had a curse put on me and told that at least one person hopes my cancer spreads and I die a long and painful death. If I quit every time someone upset me this organization would never have gotten off the paper the plan was written on. I don’t get paid for the work I do nor does the rest our of advocates, the ABLC is not a subsidiary of the ACS as some think with money running out of our ears every penny is hard to come by and much of it comes out of our own pocket. Just because they don’t post here does not mean that they are not working to keep all this going. We don’t expect thank you we do what we do because it is important just as you all are in your own way. But we are human and I can understand frustration and how much you just want others to understand the bigger picture and that we cannot let simple difference of opinion take us off course.

This is a case in point……. People got frustrated and hurt. I have to take the time to field emails from people in support of Pat being upset. And I or someone will have to step into the void her not being here creates until other step up, that is time that we could have spent doing advocacy work, words can do harm even when they are just misunderstood. I always spend a good bit of time fielding emails, some are upset that they feel they are being pushed too much to get a second opinion, others that they feel someone is playing a doctor on the internet without a license or that someone from anther organization is sending them private messages trying to get them to leave and use anther website, or that we are not getting as much done as another organization…………sigh When you are dealing with the general public, some under a great deal of stress there will always be issues but we need to lock arms around the cause and try to over look our differences and go forward. This is not about competition between organizations, misspoken words or whose work is the most important it is about people’s lives. The bottom line is we all want the same thing, we may not be perfect about it but we are learning and we keep trying.

We all have our jobs and the people that keep this forum going are very important. As important as all our other work is this is where my heart is it reminds me why we are doing what we do and that keeps me going forward I need this forum as much as anyone else. But without all of us none of this works and I can only hope that hurt feelings will fade and the importance of the mission will take over again.

PS: Lee I am with your wife it always makes me feel uncomfortable when someone tells me how brave I am when all I am trying to do is stay alive it has nothing to do with courage it has to do with survival.

While my husband and I tried to take a few days away from our work I have been following this thread. And after giving it some thought I decided to not step in and took a watch and see stance then it took a while to decide how to respond.

We are a community, a family and anyone who has ever been to a big family dinner will tell you not everyone sees eye to eye. But they are family and have a commonality that binds them. This site is about one thing, providing help and support to others that have been in our boat, hoping that what we do will make it a little easier for others that come after us.

When I took over this forum when it moved from the Web Café it did not take long before there was trouble and I already knew that fighting could destroy a forum. I have received a lot of criticism for doing what I felt was the best thing for this forum. I have even been told that some have left the forum because it isn’t as much fun to read since we no longer allow out and out feuding. However there is nothing wrong with not seeing eye to eye and voicing an opinion. We all have to never lose focus that none of us have anything other than the right reason for being here. We don’t have to agree we just have to agree that we have bigger issues here than any one of us or our opinions.

If you really think that we would intentionally do anything on this site that would create division please read our founding principal.

www.bladdercancersupport.org/index.php?option=com_content&view=article&id=1&Itemid=87

The fact is that this is one place that it does not matter if you are a purple striped Martian who worships the three toed god Loony you are welcome here as long as you are in need and respect others in other words we are all equal and of value. And I would be surprised if anyone could ever come up with one incident that would indicate otherwise. And I would like to think that our community is stronger than one article.

I know all the individuals who posted and all of them are to be respected for their work in bladder cancer advocacy, they are just coming at it from different perspectives. It is going to take a lot of us with a lot of different skill sets to get the job done. The ABLCS (pronounced abliss by the way) has many jobs as of this minute we have over 38 different projects somewhere in the pipeline, and not everyone is doing the same job so their priorities and opinions are set by what they are doing. This is pretty impressive when you take into account that none of us are paid the only people paid are technical or professional in nature. Sylvia knows how important this forum is and she has worked very hard to make sure the money is there to make it happen as well of having spent hours talking to me about how to make it better. What she meant was that this site alone will not get the word out by itself the ABLCS has to be more than this website as important as it is, it is only a part of what we must do.

We are not a wealthy organization we are only two years old and growing plus we started business at the worst time since the great depression and we do not have the money to do a major national awareness campaign. And until we do we feel in a race to get the word out because every day someone potentially could die from ignorance. Added to the lack of resources we are dealing with an information pipeline that does not embrace our cause readily. We have been told by the marketing pros that we need a hook that our cause is not about subject matter that rings the media’s bell. We have had to find creative ways to get attention for the cause and we are getting better at it but we cannot control what they wish to write about. To tell you the truth I don’t care what the article is about as long as it is factual and informs one person we have won.

George said we have gotten too politically correct around here and maybe is right. So if you want straight talk I will go first.

I feel sometimes we are standing at a cross roads arguing not where we need to go but how we are going to get there. What we need is troops on the ground, resources and our eyes on our goal. If you do not think we are going in the right direction you are welcome to be a part of this if you have a skill or know someone who can help let us know. If you can give ten dollars a month to the cause please do or encourage a fundraiser in your home town it helps us keep afloat and get the word out. It is time to lead, follow or get out of the way the ABLCS cannot stop it is 2010 and for the first time in history bladder cancer is just starting to be noticed. We need the people who post to the forum as well as people working in other areas to get this done, we are all important to our mission, we can’t take our eye off the ball for any reason the stakes are too high.