Words Have Meaning, Words Hurt

[Mirko]

In response to the last couple of threads that have been created on sensitive topics such as cancer and death, I have decided to create this thread in the hope to get you thinking about the words and phrases you choose to express yourself and the arguments and opinions you chose to bring forward when posting a rely to a sensitive topic.

Now, the experience that I and EleanorRigby are sharing are more in response to the “Saddest Story” thread (which was about a girl who died of cancer and who had her last wish granted). It was about a little girl that none of us knew or has ever met. Though yet a number of EC members could identify with her. They could identify and relate because they have either experienced cancer themselves or have experienced the death of a loved one or a best friend who died of cancer. They could identify with her death because they had a friend or knew someone who died.

Although this thread touches on cancer, the underlying message that this thread conveys is the following: The context in which you express your thoughts, opinions and arguments informs also whether or not they are appropriate or inappropriate. There is a time and place for every comment and argument. But there is also a time and place where opinions, arguments and inappropriate comments do not belong. That message stays true for all threads on sensitive topics.

The following highlights my experience:

Reading the comments and explanations provided on the thread, I felt as if someone punched me. I had an empty feeling. While writing my second response, I had tears in my eyes.

It might not have been obvious to anyone of you who read and responded on the thread, but my responses were based on my own experiences in dealing with cancer. My responses gave you a small window into what it is like going through cancer treatments.

Despite the fact that I am healthy now, the experience can still awake emotions and memories in me that are difficult to describe. The words, phrases, arguments and opinions I read on the thread brought some of them back.

My first visit to the cancer clinic, after I had an operation and was diagnosed with cancer, is one that is ingrained in my memories for ever (as is everything else that followed or is associated with being diagnosed with cancer). I was nervous and all kinds of thoughts were racing through my mind. The fifteen minute appointment became a one hour and a half hour visit where I learned the composition of the cancer treatment.

What came next changed me. It changed my life.

When I walked into the chemotherapy room for the first time, I immediately realized how bright it was and how friendly and wonderful the nurses were. I saw patients hooked up to IVs. A couple of patients were reading, while others talked in a soft voice with their visitors or family members. Others were sleeping with a blue and white blanket drawn over them. While making my way to a recliner, from where I had a view of the entire chemotherapy room and the nurses’ station, I thought to myself: that looks simple. Nothing to worry about. You will be in and out. But before I knew it these thoughts vanished and were replaced with the reality of what chemotherapy can be.

After a half hour chat with the nurse who was responsible for me, a volunteer placed a warming pad around my right arm to warm it up so that the nurse could find a good vein in which to poke in the IV needle. While that was happening I swallowed my pre-chemo meds which prepared my body to get ready for the treatment. It turned out that these were the easy parts.

Once I was hooked up to the IV and the drugs started flowing into my vein and throughout my body, I started to feel odd. Something didn’t feel right. I started having a metallic taste and the thoughts I had earlier, vanished. As the treatment went on I started feeling cold. But I was still doing relatively okay. But that changed once I left the centre.

Once I came home I wasn’t doing all too well. I started throwing up. I felt sick. During the night, I repeatedly woke up. It didn’t matter what I tried to get rid of the sick feeling, the feeling stayed with me. I woke up the next morning only to find myself having to throw up again. That was my first experience with chemotherapy. One thought kept popping up: Why me?

The following treatments made these feelings only worse. After the second treatment I realized that smells that never bothered me before began to bother me. I could not take any deep breaths. It doesn’t matter what I ate, everything tasted the same. Even just a little bit of acid or vinegar in a dish would leave my mouth burning

The morning after my second treatment, I woke up only to find that my pillow was covered with hair. As the treatments progressed so did the hair loss. Increasingly, it became difficult to look at myself in the mirror. I tried to hide from these thoughts by telling myself over and over again, “at least I can get an idea what I will look like when I am 60.” But the reprieve only lasted for a few minutes. When I washed my hair (what was left of it) I tried to be as gentle as possible, in the hopes that the hairs that were left would not fall out. Despite wearing a cap when I left the house, I still felt as if everybody would stare at me and see me without the cap.

As the treatments progressed, my energy levels fell. My body increasingly grew weaker. Every morning when I woke up I told myself that I would do something during the day. But by the time the second treatment came around, that idea and thought vanished. I just wanted to sleep. The only day where I could really do something, was the day before my next chemotherapy treatment. I tried to bring up my energy levels by going for short walks in the neighbourhood. But that did not help. At times it made me feel worse.

As the treatments continued, I began to feel sick even before my treatments. I started to develop a resistance to entering the chemotherapy room. But I had to continue the treatments and enter the room. I began to throw up during treatments. I began to have irritated veins which resulted in a burning sensation while moving or touching my arms.

Undergoing chemotherapy treatments changed my life. Once the treatments stopped and I started recovering I began to see my surroundings differently. I began to re-examine my life and began to draw contrasts between before and after the chemotherapy. I began to change things. I began to attach a different meaning to everything.

I learned that these treatments had a meaning for me. I thought about what life is and what my life means to me. I realized what life can and should be about. This is when I learned that life is not something to be taken for granted. This is when I learned that I have the possibility to make the wrongs of the past right.

Many cancer patients do not have that chance. The girl, who died, did not have that chance. I was lucky that the cancer I had was curable.

I am in regular contact with other patients. Talking to them or even just listing to what they have to say about their life and their memories, I have learned and come to realize that for many everything takes on meaning. Meaning itself changes.

It’s not easy to see patients sitting in the very same recliners in which I sat in. Sometimes they will ask me “how did you cope with it?” At times, as I start explaining in how I coped with it all, I can see a smile spreading across their face. Their face lights up. It has never occurred to me until a family member of a patient told me that in recounting my experience, I give them a form of hope because I am a cancer survivor. For them, seeing me in front of them has meaning, even though I might not fully understand that meaning.

Talking with someone who you know might die is not easy. As I talk with some of them and get to know them (even if it is just a little) I repeatedly realize that I was lucky and that I had a second chance and that I am living that second chance right now. I can not imagine what it must be like for those patients who know that they will not survive, despite undergoing treatment. Some are on the treatments for as long as they prove to be effective. Once the treatments stop to be effective the options of what to do next are very limited.

Knowing this, it becomes harder when a patient tells me “Thank you for telling me about the restaurant and the milkshake that you had. I decided to try it and I enjoyed it so much.”

To us it might not mean much. But to that person it mans something. Everything takes on a different meaning. Everything has a much deeper meaning. It is a meaning that we won’t understand for a long time to come.

Those undergoing treatments cope in different ways. Some try to cope with it in trying to find something to hang on and to be able to say everything will be okay. I certainly did that numerous times. I hung on to the possibility of experiencing things that I didn’t experience up to that point. I hung on to by looking forward to continuing my studies once the treatments are done.

For those who don’t have a second chance, like the little girl, coping and hanging on, take on a different meaning. I have come to learn that for some, if not many, there is an afterlife and they are going to a better place because this is how they come to terms with it.

In that instance, death has taken on a meaning. For those where there is no cure or chance of recovery it means an end to their suffering and pain. Relatives, family members hang on to it, because this is how they come to terms with having lost someone they love. This is how friends of those who died cope and find closure. But again this differs for everyone.

WORDS DO HURT. THEY HIT HOME. Words such as “shit happens,” making statements about giggling, raising an argument or stating an opinion on whether death has meaning, do not belong on a thread like this. Laughing similes do not belong on a thread like this either.

If someone who is dying of cancer or knows someone who is dying or died of cancer reads this, what is that person supposed to think and feel?

How am I, who experienced cancer first hand, supposed to feel?

The meanings of phrases or words change because those of us who have lost someone to cancer or have experienced it first hand have an indirect connection with the girl in that it becomes ‘personal.’ We are reminded of our individual experiences. The comments left on the thread and quoted at times in replies with different laughing similes hit close to home. For me, it was right in front of me.

The following story highlights EleanorRigby's experience in coming to terms with the loss of her best friend who died of Leukemia:

After I read the thread "Saddest Story" and some of the comments that were posted, I wanted to share with you a part of my personal experience with cancer in order to explain why I was hurt with some of the comments.

I want to begin by saying that I am not blaming anyone for what was said and I am absolutely not saying that my way of coping with this is the only one acceptable or is better than others. This is just what happened to me and how it made me feel.

I have lost my best friend to a blood cancer 6 years ago. To be honest, he was more like a twin brother than a friend to me and his death just devastated me.

He was only 20 when he was diagnosed with Leukemia. For two years he fought with an amazing courage. Even on his worst days, he always tried to stay optimistic and kind when he would be more than entitled to be sad and angry.

I saw him lose more than 50 pounds in a few weeks.

His skin tone changed and became yellow.

One day he called me before I came to the hospital to warn me: he had lost half of his hair and decided to shave the rest of his head.

Some days, he was not able to stand to go to the toilets, or even to raise his hand to keep a glass of water.

The days after a chemo session, he was throwing up even water.

He went through bone marrow check up and a transplant that were so painful. It made the chemo sessions look like a walk through the park.

Seeing him like that broke my heart every time. I tried to be supportive and optimistic, but each time I left his bedroom I was running first to the toilets to throw up, because it made me physically sick to see him like that, then I was going to the hospital chapel because it was the only place my legs were able to reach and I sat there to cry.

Sometimes things seemed to get better. He had several bone marrow transplants and each time it was a breath of hope. He could go home for several weeks and lived a more «normal» life. But every time the disease found a way to came back. I never felt so helpless. Every time the bone marrow transplant didn’t work out, I wanted to give him mine, but I could not. It was probably the only level were we were not compatible.

In February 2003, he got what would have been a cold for everyone else, while he was spending a weekend at home. He died of a pneumonia 2 days later.

I’ll always remember the moment when one of our good friends called me to tell me it was over. At that exact moment, my world changed forever. It was like having the Hiroshima bomb explode inside of me. Everything crumbled in a second leaving nothing else but pain.

During the last six years, the only thing I had to hold on to was the idea that it was better for him to die so that the suffering and endless torture would end. He couldn’t be cured. He is in a place where he is fine and happy and where he is in no pain.

This single idea helps me to get through the days where I miss him so much that breathing hurts. When I read the comments in the thread saying that the little girl was not in heaven, just dead and mocking the beliefs that there is something after death, I felt like I have been punched in the stomach.

Please don't get me wrong: I am not asking for anyone to share my beliefs, just to be careful with what they say and where they say it, because sometimes, words hurt more than you can imagine.

Now again, while our experiences are in response to a particular topic, you can easily exchange our experiences with other experiences that will lead you back to the fact that not only do the words that you choose have meaning, but the context, place and time determine what is appropriate and what is not. The context determines where empathy ends and inappropriateness begins.

If you see something in a thread that starts a train of thought - there is no reason why you can't post about it. BUT - if it is something that would be jarring or out of place in the existing thread, or might cause hurt or offense to some others - it would be better to start a new thread for that separate discussion.

In writing this thread, EleanorRigby has offered to share her personal experience for which I am thankful. I would also like thank members of the staff for their input and suggestions in the creation of this thread. Thank you!

[Étoile]

Agreed. I didn't care if people didn't believe in an afterlife or if death had a meaning, the comments that were posted were extremely unnecessary and tactless. It was like scolding people at a funeral that their mourning and holding the service for their passed loved ones is pointless.

Kindergarten Rule #2: If you have nothing nice to say, don't say it at all.

You already are aware of how I feel about this whole debacle. Obviously, I hate cancer as much as the next person. It blows hard that you both had to deal with this. I get that I should probably take into account other people's sensitivities when posting. That being said, I'm ignoring the last bit to say ths:
Thank you for the public flogging.

This thread isn't about whether or not we should be more considerate when posting. It's not even really a thread about cancer. It is just a way to have the final say in a thread, that if I'm not mistaken, was shut down.
I understand that people were upset with me, but the discussion is over. Just stop trying to prove your moral highground. I get it. I concede. You win.

I thought that what we discussed in the Staff forums was private. So although you did not call me out by name, I'm convinced that those who saw that thread are aware of who this is targeting.

So thanks.
Kindergarden Rule #1: Don't bite.

[Étoile]

I'm assuming your comment was directed towards me Numfah. If so, I'm sorry if I offended you in any way. I didn't mean to personally insult you or even call you out. I felt that your comments, not you, were tactless considering the thread's topic. I'm a hypocrite for calling you tactless when I posted the kindergarten rule. LOL

My apologizes again for offending you.

[Eleanor Rigby]

Originally Posted by Numfarh

You already are aware of how I feel about this whole debacle. Obviously, I hate cancer as much as the next person. It blows hard that you both had to deal with this. I get that I should probably take into account other people's sensitivities when posting. That being said, I'm ignoring the last bit to say ths:
Thank you for the public flogging.

This thread isn't about whether or not we should be more considerate when posting. It's not even really a thread about cancer. It is just a way to have the final say in a thread, that if I'm not mistaken, was shut down.
I understand that people were upset with me, but the discussion is over. Just stop trying to prove your moral highground. I get it. I concede. You win.

I thought that what we discussed in the Staff forums was private. So although you did not call me out by name, I'm convinced that those who saw that thread are aware of who this is targeting.

So thanks.
Kindergarden Rule #1: Don't bite.

I'm sorry you take it this way.
This is not directing against you or any other members. Both Mirko and I answered you directly about what we thought. But we had the idea that sharing our personal stories could help people to understand that thay should think about what they say before they say it : not especially about death or cancer, by the way, but in general.
We are not trying to prove we are better than other people. A lot of EC members had experiences that are as much if not more painful ours. We just hoped that it could help people showing a little more respect about each other.

Once again I am not blaming you, I am not blaming anyone. And I don't feel that I win anything because I am not fighting either with you or anyone else.

[Eleanor Rigby]

Neither Asteroid nor I want to see that thread being used to start a new fight around the "Sadest Story" thread.
We don't want this thread used to blame some members for what have been said. It would be the opposite of our purpose.
All we wanted to say is that words can hurt, and that we would like people being a little more careful with what they post in sensitive threads. So please start with this one.

[Blaz]

Again, I feel that on both sides there is the presence of far too much assumption, implication, and self-projection.

One person is assuming that a public opinion is openly targeting her, which may be partially true, but it is highly unlikely that the primary reason for the opinion is this person.

Another person is assuming that people's sympathy is a symptom of their own personal loss, not a simple condolence, which, should the latter ring true, the "actions" to begin with may have not been as unacceptable.

However, I do agree that in truly sensitive matters, any "second" opinion should be expressed in a separate thread, but only in serious matters, which, again, one must take the time to deem "serious",

Too many people are being blinded by selfish emotion, opinion, or stubborn belief. I only ask that you take the time to look at situations from all perspectives, even those which may be deemed disrespectful or inappropriate.

Only then will we be able to think with a clearer mind. . .

[Chip]

Thank you both to EleanorRigby and Asteroid for starting this thread and for speaking of some very personal and very painful experiences.

I spent a number of years working with a nonprofit organization involved with training physicians and educating the public about holistic cancer treatments. During that time, I learned a tremendous amount about the preciousness of life, the strength and hope and faith of the people fighting cancer, the joy of those who beat it, and the difficulty for the patients and their families for those who would not. I have also lost a parent to cancer.

I went looking for the thread in question and can't find it. I read the first few posts but did not see it after it apparently degenerated. Has it been removed?

One of the things I have noticed about EC is that, with the exception of a small handful of posters, there seems to be an overwhelming sense of tolerance and acceptance of differing viewpoints on many different subjects, and that is one of the things that I believe is most important to creating a safe space where everyone can feel comfortable sharing their experiences, feelings, and vulnerabilities.

One of the things I have learned over time is that, as we experience more of life, our priorities and sometimes our most fundamental views can change. I know I can look back at myself 5 or 10 or 20 years ago and think about things that I argued vehemently for that now I realize are simply not important, or that I've shifted my views 180 degrees, or that I may have inadvertently hurt someone else with my thoughtlessness and arrogance.

It seems to me that, while this thread isn't about cancer, it IS about being more considerate when thinking about others' feelings, and about encouraging tolerance and acceptance of viewpoints that may differ from one's own. It doesn't matter what those viewpoints relate to; the ability to place oneself in another's shoes and think about how they feel when someone condemns their views or thoughts or feelings is something that I think everyone can benefit from. And if one is thinking of posting something that could be hurtful or judgemental or devaluing of another's experience, taking the time to think about how that person might feel reading those words might bring some insight and understanding that sheds new light on the situation.

As to the specific issue of religion and religious beliefs, some people may be entirely athiestic or agnostic and condemn others for their beliefs, and others may have extremely rigid beliefs in the opposite direction; neither contributes to a supportive community. What the absolute truth is (if there even can be one) is irrelevant here; for people in pain, people who have lost a loved one, people struggling with difficulties of their own, often turning to some sort of spirituality or higher power can be a comforting and reassuring thing. And there is nothing wrong with seeking comfort for that which we cannot accept or understand.

At the inpatient healing center where I worked, where there was tremendous interaction between all of the patients, as well as staff and patients, we often ran into the situation of dealing with different spiritual and religious beliefs. Most of the time, people were reasonable and tolerant and accepting of others differing beliefs, but occasionally we ran into patients who were insistent that their belief (whatever it was) was the only true belief, and they spent their time trying to convince other patients they were wrong. We finally solved the problem by agreeing that we were supportive of patients with all belief systems and schools of thought, so long as those patients were equally tolerant (at least publicly) of other patients or staff whose beliefs differed from their own. Not having read the thread after it degenerated, I don't know exactly what was discussed, but I can infer that perhaps it related to this issue, and perhaps getting agreement from EC community members for a similar degree of tolerance might help to prevent future problems like this.

I can't believe this.

[Shevanel]

Originally Posted by Blaz

Again, I feel that on both sides there is the presence of far too much assumption, implication, and self-projection.

One person is assuming that a public opinion is openly targeting her, which may be partially true, but it is highly unlikely that the primary reason for the opinion is this person.

Another person is assuming that people's sympathy is a symptom of their own personal loss, not a simple condolence, which, should the latter ring true, the "actions" to begin with may have not been as unacceptable.

However, I do agree that in truly sensitive matters, any "second" opinion should be expressed in a separate thread, but only in serious matters, which, again, one must take the time to deem "serious",

Too many people are being blinded by selfish emotion, opinion, or stubborn belief. I only ask that you take the time to look at situations from all perspectives, even those which may be deemed disrespectful or inappropriate.

Only then will we be able to think with a clearer mind. . .

This. Blaz you're like totally right.

[Dazed]

Originally Posted by Midnight Angel

I can't believe this.

I agree.

[pirateninja]

Originally Posted by Blaz

However, I do agree that in truly sensitive matters, any "second" opinion should be expressed in a separate thread, but only in serious matters, which, again, one must take the time to deem "serious",

Too many people are being blinded by selfish emotion, opinion, or stubborn belief. I only ask that you take the time to look at situations from all perspectives, even those which may be deemed disrespectful or inappropriate.

Only then will we be able to think with a clearer mind. . .

Blaz has got it spot on right there.

[littledinosaurs]

Originally Posted by Numfarh

I thought that what we discussed in the Staff forums was private. So although you did not call me out by name, I'm convinced that those who saw that thread are aware of who this is targeting.

Agreed.

[pirateninja]

Originally Posted by Numfarh

I thought that what we discussed in the Staff forums was private. So although you did not call me out by name, I'm convinced that those who saw that thread are aware of who this is targeting.

No, this is not targeting you at all. And if you think that, then we apologise. It is not meant to single out, or blame, or whatever you think it's doing. Trust me, buddy, victimising or "trying to win the argument" is not how we roll, and we're sorry that you think that way.

The honest to God truth is that it's meant to get EVERY member thinking "is this the right thing that I am posting here?". That's it. Kaboom. We hate "drama" or whatever you want to call it as much as the next person. Probably even more; after all, we have to clean it up, and then we get labelled as "thought police".

Originally Posted by pirateninja

No, this is not targeting you at all. And if you think that, then we apologise. It is not meant to single out, or blame, or whatever you think it's doing. Trust me, buddy, victimising or "trying to win the argument" is not how we roll, and we're sorry that you think that way.

The honest to God truth is that it's meant to get EVERY member thinking "is this the right thing that I am posting here?". That's it. Kaboom. We hate "drama" or whatever you want to call it as much as the next person. Probably even more; after all, we have to clean it up, and then we get labelled as "thought police".

Why bring it up again though? Why dig up something that, as far as I was concerned, was done? I call bullshit. This is a way to have a last say in an argument that could have continued in the thread I started in the Staff forum. Instead, people decided to put it into the open arena.

I agree that the staff should be more open about the drama that happens, but this type of thread explains nothing. It points fingers (for anyone who isn't too stupid to see that it does) and attempts to gain the support of those afraid of conflict.

Subtext isn't just something you read in novels; it happens all the time. And the subtext of that text is, "I need to prove someone wrong."

[Shevanel]

Originally Posted by Numfarh

Why bring it up again though? Why dig up something that, as far as I was concerned, was done? I call bullshit. This is a way to have a last say in an argument that could have continued in the thread I started in the Staff forum. Instead, people decided to put it into the open arena.

I agree that the staff should be more open about the drama that happens, but this type of thread explains nothing. It points fingers (for anyone who isn't too stupid to see that it does) and attempts to gain the support of those afraid of conflict.

Subtext isn't just something you read in novels; it happens all the time. And the subtext of that text is, "I need to prove someone wrong."

But you're also doing the same thing? Dontchya think?

[pirateninja]

Originally Posted by Numfarh

Why bring it up again though? Why dig up something that, as far as I was concerned, was done? I call bullshit. This is a way to have a last say in an argument that could have continued in the thread I started in the Staff forum. Instead, people decided to put it into the open arena.

I agree that the staff should be more open about the drama that happens, but this type of thread explains nothing. It points fingers (for anyone who isn't too stupid to see that it does) and attempts to gain the support of those afraid of conflict.

Subtext isn't just something you read in novels; it happens all the time. And the subtext of that text is, "I need to prove someone wrong."

Very well; I'll let you have your opinion on what we've written; but our intentions are not what you assume. It's just a shame that you don't see it.

Originally Posted by SurferDude420

But you're also doing the same thing? Dontchya think?

Look. This whole thing would have blown over by now if people stopped bringing it up to complain about it. Comments like this:

"I'm leaving EC because people are being MEAN."

"This forum isn't good anymore."

"Guys! Calm down. Everyone just chill."

Those comments keep the topic alive. I'm all for just closing the book. I don't even care if the epilogue paints me as the bad guy anymore. Just stop talking about it. Or at least, add something new to the conversation.

[pirateninja]

Originally Posted by Numfarh

Look. This whole thing would have blown over by now if people stopped bringing it up to complain about it. Comments like this:

"I'm leaving EC because people are being MEAN."

"This forum isn't good anymore."

"Guys! Calm down. Everyone just chill."

Those comments keep the topic alive. I'm all for just closing the book. I don't even care if the epilogue paints me as the bad guy anymore. Just stop talking about it. Or at least, add something new to the conversation.

Fair enough.

Cookie?