Thank you for having this discussion.
I did not mean to be insensitive to the young men when I mentioned Jesus dying young - but I realized that sounded harsh when I reread it (after I had posted it, unfortunately) and tried to explain myself in the second post.
When I was dealing with the fact that I would not live as long as I had expected, it helped me to consider Abraham Lincoln, Matthew Henry and others who died young. So that was what was behind my original comment about Jesus dying young. It didn't come out well, sorry.
I wasn't trying to tell others what to believe, but I was expressing my reality.
I will try to be more sensitive and proof read things before I post them so I don't inadvertently say something unkind.
Cathy
Forums
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antelope1225 - Name: Cathy1225
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: May 25 2012
- Age at diagnosis: 55
Re: Religion in the forum - your thoughts?
I don’t have any great insights to add on this question. But I’ll give you my two cents worth anyway. 
I think the two general rules that the Beacon Staff mentioned near the top of the thread are well-stated. The problem is that this is a case where those two rules come into conflict with one another. Like Andrew, both posts in question made me uncomfortable when I read them. However, I think that’s not entirely bad; sometimes it’s good and educational to be uncomfortable.
There has been lots of back and forth discussion in different threads in The Beacon about things like early auto SCT vs. late and about benefits or lack of benefits of different diets. I see the discussion of religion as no different from those, as long as the discussion is respectful. But it’s a tough call about where to draw the line on what’s respectful or not since that’s so subjective. I guess I lean more toward your Rule 1 than Rule 2, but it looks like most of the other comments on the thread seem to lean toward Rule 2 taking precedence. So I may be an outlier.
I think the two general rules that the Beacon Staff mentioned near the top of the thread are well-stated. The problem is that this is a case where those two rules come into conflict with one another. Like Andrew, both posts in question made me uncomfortable when I read them. However, I think that’s not entirely bad; sometimes it’s good and educational to be uncomfortable. There has been lots of back and forth discussion in different threads in The Beacon about things like early auto SCT vs. late and about benefits or lack of benefits of different diets. I see the discussion of religion as no different from those, as long as the discussion is respectful. But it’s a tough call about where to draw the line on what’s respectful or not since that’s so subjective. I guess I lean more toward your Rule 1 than Rule 2, but it looks like most of the other comments on the thread seem to lean toward Rule 2 taking precedence. So I may be an outlier.
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mikeb - Name: mikeb
- Who do you know with myeloma?: self
- When were you/they diagnosed?: 2009 (MGUS at that time)
- Age at diagnosis: 55
Re: Religion in the forum - your thoughts?
Well ... since you've asked.
I would recommend that there be no references and/or discussion to religious or political opinion in any TMB postings, whatsoever.
I see no value-add to either of those subjects at TMB.
However, if TMB management feels it must accommodate those members who feel the need to express their beliefs/opinions on these topics then perhaps a new forum can be created to do so?
That said, I would ask my fellow members, respectfully, why they feel any other member would want to be informed of their political or religious views?
Finally, and I will say this as kindly as possible, that I am NOT interested in anyone's political or religious views and would ask that everyone here please keep said views to themselves.
Respectfully,
Steve Cochran
I would recommend that there be no references and/or discussion to religious or political opinion in any TMB postings, whatsoever.
I see no value-add to either of those subjects at TMB.
However, if TMB management feels it must accommodate those members who feel the need to express their beliefs/opinions on these topics then perhaps a new forum can be created to do so?
That said, I would ask my fellow members, respectfully, why they feel any other member would want to be informed of their political or religious views?
Finally, and I will say this as kindly as possible, that I am NOT interested in anyone's political or religious views and would ask that everyone here please keep said views to themselves.
Respectfully,
Steve Cochran
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Steve - Name: Steve
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: December 2009
- Age at diagnosis: 55
Re: Religion in the forum - your thoughts?
I find both of those posts are a bit too extreme for me to be honest. I welcome spiritual talk and it was a part of me coming to terms with my myeloma diagnosis (a local church reached out to me and supported me with free counseling from a registered family therapist / psychologist).
We need to learn to be civil with each other, and realize others may not share our views. So yes, please talk about your journey, or faith, but think about your audience and try and edit yourself appropriately.
This is "global" world wide web myeloma group and I think reference to other religions is ok too (Allah, Buddha, etc).
There is another online group I've participated in that is anti religion and very militant. If anyone so much as mentions God or prayer, they are hounded by the "moderators" about the "rules" and posts are blocked. I choose not to post there anymore, it's too much for me.
We need to learn to be civil with each other, and realize others may not share our views. So yes, please talk about your journey, or faith, but think about your audience and try and edit yourself appropriately.
This is "global" world wide web myeloma group and I think reference to other religions is ok too (Allah, Buddha, etc).
There is another online group I've participated in that is anti religion and very militant. If anyone so much as mentions God or prayer, they are hounded by the "moderators" about the "rules" and posts are blocked. I choose not to post there anymore, it's too much for me.
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lys2012 - Name: Alyssa
- When were you/they diagnosed?: 2010, Toronto, Canada
- Age at diagnosis: 32
Re: Religion in the forum - your thoughts?
I have to reply again after further reading. Cathy, I had no way of knowing that you were the first poster, and I applaud you for acknowledging that some people may have been uncomfortable with your post.
Obviously, religion remains a difficult topic in this world. My relationship with God is my own. We have our difficulties, but we continue to work on it!
Steve, I felt like your response here was a little unreasonable, and even tho you meant it not to be unkind, I think it was. How do you feel when you read posts that state things like, "with prayer I've come to deal with it"? That is just a general statement to how people cope. We don't all cope the same.
I feel like restricting it so much that you aren't offended by other people's "religion", you aren't allowing them to be themselves. Cathy's post may have been "too much religion" for some people, but lets not hang her on a cross either for taking strength in her faith. This disease is too difficult to make people feel like crap just because we don't agree with her.
And lastly, my favorite thought/quote ever. If you can't find a kind person, then be a kind person. That kind of sums up my religion the best.
Obviously, religion remains a difficult topic in this world. My relationship with God is my own. We have our difficulties, but we continue to work on it!
Steve, I felt like your response here was a little unreasonable, and even tho you meant it not to be unkind, I think it was. How do you feel when you read posts that state things like, "with prayer I've come to deal with it"? That is just a general statement to how people cope. We don't all cope the same.
I feel like restricting it so much that you aren't offended by other people's "religion", you aren't allowing them to be themselves. Cathy's post may have been "too much religion" for some people, but lets not hang her on a cross either for taking strength in her faith. This disease is too difficult to make people feel like crap just because we don't agree with her.
And lastly, my favorite thought/quote ever. If you can't find a kind person, then be a kind person. That kind of sums up my religion the best.
Re: Religion in the forum - your thoughts?
I was uncomfortable with the first posting. I also have religious beliefs but don't want to feel like I'm being preached at when reading exchanges here in the Beacon. When I read the second response, I wondered if they posted it to deliberately create discord among our readers.
At any rate, I'd prefer not to see any censorship unless the conversation becomes totally uncivilized. We can just ignore posts we disagree with. Patients and families dealing with multiple myeloma need to draw support from wherever they can get it.
Thanks for asking for our input, Beacon staff!
At any rate, I'd prefer not to see any censorship unless the conversation becomes totally uncivilized. We can just ignore posts we disagree with. Patients and families dealing with multiple myeloma need to draw support from wherever they can get it.
Thanks for asking for our input, Beacon staff!
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Chris M
Re: Religion in the forum - your thoughts?
Like some others here have mentioned, I was uncomfortable with both comments.
I read the Beacon to find out about medical options and other people's experiences with their medical situations. I would not want to have to wade through long religious discussions in order to do that. I feel that those that wish to do so should find other places for this.
Every site has their specialty. You can't be all things to all people, especially given such a diverse readership.
If the Beacon wishes to allow these discussions, perhaps they can have their own category, to allow those of us searching for medical information to streamline our reading.
I read the Beacon to find out about medical options and other people's experiences with their medical situations. I would not want to have to wade through long religious discussions in order to do that. I feel that those that wish to do so should find other places for this.
Every site has their specialty. You can't be all things to all people, especially given such a diverse readership.
If the Beacon wishes to allow these discussions, perhaps they can have their own category, to allow those of us searching for medical information to streamline our reading.
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Joy - Name: Joy
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: May 2013
- Age at diagnosis: 52
Re: Religion in the forum - your thoughts?
Well, Cindylouise, since you have found my posting to be "unkind" then I will respond to you, in kind!
Many here would be offended by the following statement should a poster decide to make such a reference or similar sentiment:
"Hold ye high the lamp of truth that sheddeth the warm glow of our Lord Lucifer! Let the great name of Lucifer be virtuous among men and let His praises be sung from the lips of the mighty. Rise up ye Spawn of Lucifer from the depths of the earth even unto the very borders of the abyss amidst the lake of fire to the highest of heights, where the celestial winds blow cold, and hearts of men grow frigid in fear of the afterlife to come!"
Yet, simply because many members here would likely find such a proclamation of a Satanic belief, as just one example, to be offensive to their own religious beliefs, should that be sufficient reason to censor it? If so, who is to decide what is offensive and what is not, per religious ideology? Who decides what is acceptable "religious tolerance"? You? Your friend Cathy? Who?
Regardless of the reference to any given belief in the supernatural, to any reference to the so-called great wisdom books around the globe, I find them all to simply be metaphysical nonsense, and therefore, I see no value to their reference at a website that seeks to provide scientific and practical information to its members.
Kindly, of course,
Steve
Many here would be offended by the following statement should a poster decide to make such a reference or similar sentiment:
"Hold ye high the lamp of truth that sheddeth the warm glow of our Lord Lucifer! Let the great name of Lucifer be virtuous among men and let His praises be sung from the lips of the mighty. Rise up ye Spawn of Lucifer from the depths of the earth even unto the very borders of the abyss amidst the lake of fire to the highest of heights, where the celestial winds blow cold, and hearts of men grow frigid in fear of the afterlife to come!"
Yet, simply because many members here would likely find such a proclamation of a Satanic belief, as just one example, to be offensive to their own religious beliefs, should that be sufficient reason to censor it? If so, who is to decide what is offensive and what is not, per religious ideology? Who decides what is acceptable "religious tolerance"? You? Your friend Cathy? Who?
Regardless of the reference to any given belief in the supernatural, to any reference to the so-called great wisdom books around the globe, I find them all to simply be metaphysical nonsense, and therefore, I see no value to their reference at a website that seeks to provide scientific and practical information to its members.
Kindly, of course,
Steve
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Steve - Name: Steve
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: December 2009
- Age at diagnosis: 55
Re: Religion in the forum - your thoughts?
The fact that religion is broached in a thread about death really shouldn't be a surprise to anyone given that death is considered a religious experience pretty much world wide. Not to mention the ceremonies involved following the death of a loved one.
Do these religious comments bother me? Not in the least. In my opinion, the initial comment probably helped someone look at their situation from a different angle and helped them come to grips with it. Isn't that the purpose of these forums? To help others by way of our own experiences?
Admittedly, if someone throws a derogatory response back, a heated debate could ensue. But I'm not sure how long it would last in these forums because the majority of us here don't have the time to spare debating about a subject that we'll all know the answer to all too soon. Or, perhaps not.
Do these religious comments bother me? Not in the least. In my opinion, the initial comment probably helped someone look at their situation from a different angle and helped them come to grips with it. Isn't that the purpose of these forums? To help others by way of our own experiences?
Admittedly, if someone throws a derogatory response back, a heated debate could ensue. But I'm not sure how long it would last in these forums because the majority of us here don't have the time to spare debating about a subject that we'll all know the answer to all too soon. Or, perhaps not.
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Blackbird - Name: Rick Crow
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Feb, 2013
- Age at diagnosis: 53
Re: Religion in the forum - your thoughts?
Thanks, Blackbird. We are all on this journey - none of us has all the answers. We read this to get ideas from each other. I was sharing my struggles in dealing with my mortality.
I have read other posts by you and I think my multiple myeloma is much like yours. My bone marrow biopsy showed nothing, my skeletal survey was "ambiguous".(so I seem to have very little bone damage, but my kidneys are 75% destroyed). They called it light chain deposition disease with multiple myeloma. Is that what you have?
I had my stem cell transplant in Nov 2012 and when I was in the hospital I was surprised at the variety of symptoms people had. One woman had large tumors on her collar bones, others had broken bones. I wonder if they will find some day that there are actually several different diseases that are distinct, but now are all lumped together as multiple myeloma.
Cathy
I have read other posts by you and I think my multiple myeloma is much like yours. My bone marrow biopsy showed nothing, my skeletal survey was "ambiguous".(so I seem to have very little bone damage, but my kidneys are 75% destroyed). They called it light chain deposition disease with multiple myeloma. Is that what you have?
I had my stem cell transplant in Nov 2012 and when I was in the hospital I was surprised at the variety of symptoms people had. One woman had large tumors on her collar bones, others had broken bones. I wonder if they will find some day that there are actually several different diseases that are distinct, but now are all lumped together as multiple myeloma.
Cathy
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antelope1225 - Name: Cathy1225
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: May 25 2012
- Age at diagnosis: 55
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