ME vs. MM: Community
I mentioned in a recent column how the topics for my columns crop up from a variety of sources. This month's topic formed in my head (as you might expect, during a dex-day) due to the convergence of three separate, but related items and events:
A recent posting to one of the Beacon columns or forums indicating the site is not much more than a place for everyone to come and drown their sorrows.
A conversation I had with one of my sons that's been an ongoing debate as to whether interacting online provides the same sense of community as interacting with people in person.
An article in my local newspaper about the current generation and whether texting and online communities are replacing face-to-face relationships.
I have always found face-to-face interaction preferable to interacting online. I'm the type of person at work that prefers to walk over and talk to someone rather than call or email them. I also don't have a Facebook account, I don't tweet, and I've repeatedly ignored requests to join LinkedIn (due more to not having the time to devote to these sites as opposed to any particular aversion to them).
I think so much more can be communicated when you interact in person because you have the added benefit of seeing facial expressions, body language, etc. The conversation also tends to flow much more smoothly and is less prone to misinterpretation.
To be honest though, until being diagnosed with multiple myeloma and coming across The Myeloma Beacon, I was never involved much with an online community. Since then, I've come to appreciate the benefits an online community can provide.
Consequently, after reading the Beacon post mentioned above, I found it disappointing that someone would feel so negatively about the Beacon community, knowing how much I've benefited from it, and how many others have indicated they have benefited from it.
For me, there are two primary benefits to being part of an online community such as the Beacon. First, such sites connect a large number of people with similar and related experiences - far more than would ever be able to interact face-to-face. Second, such sites provide an accumulated wealth of experiences and knowledge that would be difficult to find elsewhere.
Admittedly, there are postings where people complain about what they are going through, but that's part of human nature and a community provides a means by which people can commiserate. There are also postings where people argue, but guess what, people don't always agree with each other. The majority of posts, however, are about people sharing knowledge, relating experiences, reaching out to each other, supporting each other, and lifting each other up.
So, even though I've never met any of the people I interact with on the Beacon site, it has become a source of community for me.
I have come to know people through their postings and email exchanges with me. I have come to know the other columnists through their writings. I have come to know others through their personal blogs.
I have also come to care about people in this community as I follow their stories. I get concerned if I don't see postings from people for a while. For example, this past summer I hadn’t seen postings from one particular patient for a while and was concerned about him. I was truly relieved when I heard he was okay and getting ready for his stem cell transplant.
I shed tears for the people that have found out they have cancer, for those that struggle on a daily basis against this disease, and for those that don't survive this disease. But I also find joy in the successes and victories that people achieve against this disease.
I still prefer in-person relationships to online relationships, but recognize the value of the online community. I am also somewhat more amenable to my son's arguments in favor of online communities now that I feel part of such a community.
I hope everyone visiting this site experiences a similar sense of community.
Peace, and live for a cure.
Kevin Jones is a multiple myeloma patient and columnist at The Myeloma Beacon.
If you are interested in writing a regular column for The Myeloma Beacon, please contact the Beacon team at
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You and I differ insofar as I am very much an internet/social media person (or have been on-and-off since the mid '90s)... I think it is quite easy to build community digitally, once you get used to the idea that there is a big chunk of communication missing (the non-verbal stuff and real immediacy are the two main ones)
One of the major advantage, as you noted, is that a fairly large group of folks with a similar interest can congregate very easily and with real consistency using this medium, something that just isn't likely, or even possible in many cases, in the "real world."
And I am also in agreement with you that this particular forum is of real significance: for me it is the go-to resource for anything myeloma-related. I stop here first, and then move on to other sources. And like you, I have also been encouraged here.
Thanks for standing up for this bunch, Kevin!
Nice column, Kevin. The Myeloma Beacon has helped me so much since my diagnosis last year that it really is an invaluable resource. I have also had the pleasure of personally meeting with two other MB posters and I consider them good friends and fellow myeloma warriors. I also love the ability to communicate with people from throughout the world. There are numerous posters from Canada, Australia, Europe and pretty much every state in the US and that is awesome. We really are a community in every sense of the word. Terry L. from NJ
Thank you for writing this. When I was first diagnosed, I knew no one who had MM. Nor did I look at any online support groups. Then it was after I relapsed that started reading everything. The myeloma beacon, the myeloma list serve, and the Facebook myeloma support group have been extraordinarily informative . I DO feel connected to people, even if I haven't met them in person. I have cried when Lonnie nessler died, Paula , from the UK. I never met them but I feel as if I knew them. I have learned so much. I am so much more informed. And when I have a question or just am concerned about something I value all the responses from people who care enough about me to answer. I think that this just amazing that this disease that connects also allows us to reach out in ways that we didn't before.
Also, from reaching out, I discovered a few people who live in my area and we have gotten to know each . For me this support is immeasurable.
The oncologists that answer questions here are so valued as well. To me , these very busy doctors take the time to answer our concerns. This is so amazing and appreciated.
So I say, I love having an online myeloma family. I'm sure we all wish we weren't here, but that's the hand we were dealt.
Liked your column this week. Am always interested in what other MMers are doing and experiencing. However, like you , I much prefer people contact. A friend who also is diagnosed with multiple myeloma tried to get a group in metro NY started thru an initial web contact and then only face to face metting thru MMRF. It failed miserably. It has led me to believe that most diagnosed people prefer the anonymity of the web as opposed to face to face contact. I have been fortunate inmy treatment since my diagnosis inAugust 2010 and don't fell limited in my lifestyle (travel, running. walking). Best of luck in your dealing with multiple myeloma.
Ned Brody
I have to agree with you Kevin! I have smouldering myeloma, but also was diagnosed with breast cancer while they were investigating the myeloma possibility. I subsequently have been diagnosed and succesfully treated for malignant melanoma. I get a lot out of the articles posted on this site. I rely on the validity of the medical info, electronically filing away things that may be helpful for me in the future and avidly reading people's story. I have not posted before, so I've been a bit of a "ghost" reading from the sidelines, but seeing your article today I just had to add my two cents worth and say as I started, I agree.....I find this site a great source of support.
I appreciate your thoughts on this topic, Kevin. Both in-person relationships and online contacts have been very valuable to me. The knowledge gained in connecting with people who have rich context to MM, the exchange of ideas, and, yes, the occasional ranting and raving associated with this mess, has given me confidence to make better treatment and life decisions. The MB, the MMRF and IMF sites, the blogs, social media, etc. can't be all things to all people. Hopefully patients and caregivers can find a mix of communities that serve them well. Happy Thanksgiving, Kevin!
Thanks for sharing these thoughts. I too feel disappointed about the post you mention and have found great comfort in reading all the Beacon columns as I have helped navigate my sister's MM diagnosis. There are times when I am writing Big Sis in Burgundy that I wonder if I should be doing it, since I am not a patient, but even earlier this week, someone whose father just received a melanoma (yes, melanoma) diagnosis, told me that it was so helpful to read my columns from the beginning, as they provided perspective and hope. So, let's keep writing. There are naysayers everywhere -- if our efforts benefit even one person, they have been worthwhile.
Kevin
Great column, I completely agree. While there is no substitute for face to face interaction, the Myeloma Beacon provides an important resource for myeloma patients and their families. I have never thought of if as a place where people go to drown their sorrows but rather as a place where people from different places and different backgrounds share their experiences with a common enemy, multiple myeloma. Having a cancer diagnosis can be isolating. I find that even my close friends at home are often in a very "different place" than I am and have a hard time relating. It is often difficult to find people who are in similar situations or who have shared so of the same experiences. Online resources such as the Beacon provide that avenue. Also while the internet is loaded with information, it is often difficult to sift through it in a meaningful way. The Beacon helps provide that. Thanks
Hi Kevin...thanks for the thoughtful column. I really agree with all of the above people posting in, and would like to add that I think that the Beacon editorial staff do a terrific job in managing this online resource, and the sponsors are very generous to have an international resource such as the BEAcon. It is like a magazine, but interactive too, which is quite amazing really. I am impressed by how mature the postings here are, and how well informed other patients are also. I enjoy the articles, the comments, the columns, the info from the oncologists, the forums...I also am very grateful to have been encouraged and edited in my writing efforts on this site! Like Deborah says, if you help one person, that is a good thing to do, and ALL of the people who post here are helping others by sharing knowledge. I find that my columns are distributed (linked) out of my local support group, and people respond to me about them in person..so that's nice! i know some folks who post in personally, but mostly you are all 'pen pals'. One friend last week said she gave my latest column to her mother, who has friends with breast cancer, since it gave some hints as to what a patient would appreciate when in the thick of difficult chemotherapy treatment. (I send links of my columns to friends by e-mail). The whole experience just brings tears to my eyes.........i get choked up if I dwell on it.
If I'm going to drown my sorrows, i'll do it with jack n coke. I find this forum and the columns very informative and it gives me insight as to how I'm doing. I've had an sct and just do what my Dr. Says. Anyone that says this site is to "drown my sorrows" doesn't know me. The site keeps me informed and gives me hope as i deal with this part of my life's adventure.
I have found information and answers from all of you that I couldn't get anywhere else, Smoldering since 2007, I started to experience a variety of symptoms including intermittent numbness and tingling, back pain, tinnitus, hearing loss, sinus infections, and pneumonia. All tests continue to confirm I am still smoldering. Since I thought all this would come once myeloma was active, I began to think perhaps I was going nuts. It was a Beacon post from someone asking about similar symptoms that let me know I wasn't alone with this experience.
I'm not much of a joiner. I can't picture myself in a support group. All of you may change my mind. The Beacon is the first thing I look at when I open my IPAD.
The beacon was one of the best things that ever happened to me. I'm sure that at some point all of us diagnosed with MM might have been depressed. I know that I was felling really down at one point but to hear what other people had gone through or going through helped me to realize that there was someone who did understand what I was going through. I check the beacon everyday and I love the uplifting columns. There have also been times I was able to help lift someone who might have been a little down. I THINK IT IS GREAT !!!
Hi Kevin,
Nice article.
I spend "real" time with one MM patient and I do find it depressing sometimes. I like to pretend I'm not sick, so with regards to MM, the on line community is better for me. When I'm with my MM friend, I am back into the world of low platelets, low WBC's, and feeling tired. But with this forum, I can go to it, read some posts, ask a question and when I'm tired of MM speak, I click out! My vote is that this forum is excellent!
BTW--I couldn't find the post you referenced. Did the monitor remove it?
Terry,
I think it would be great to meet some of the people from the Beacon community personally. I also enjoy seeing posts from throughout the world and have exchanged message with a few such people. I also find it interesting how treatment options can differ so much depending on where you live.
Christina,
I'm glad the Beacon had been such a great resource for you. I was in much the same situation not knowing what MM, nor was there much in the way of local resources to help out (though the local Gilda's club now has a MM support group). The Beacon is the only site I've found with this type of community and support.
Ned,
Glad you liked my column this week - but does that mean you haven't liked it other weeks?
It's too bad the attempt to form a local group failed. I think it's hard to get support groups going since there just aren't a lot of people with MM per capita, though I would have thought NY would have be a place you could support one.
Snip,
I've notice from you website that you are much more the "online" than I am - yours looks a lot nicer than mine does and has a much more personal touch to it. You're also one of the people I noticed wasn't around for a bit earlier this year and I was happy to see you posting again.
Christine,
Wow, SMM and breast cancer at the same time, then melanoma. I'm glad to hear the melanoma was treated successfully and I hope the breast cancer was too. I agree with you about the valuable information and support available. Glad you decided to post, but ghosting (or lurking as it's also called) is OK too. Like any community, some people are more outspoken, and some tend to be listeners.
Sean,
Hope you've recovered from the San Francisco. You make a great point of the value there is in the information people provide that can help support our treatment decisions. The other sites you mention are valuable, but there's something to be said for relating with people that have "been there and done that".
Deborah,
Obviously you fell some connection with the Beacon since you decided to write a column for it. And I actually think you're contribution is a valuable one from the perspective of a supporting someone with MM. There are a lot of posts from caregivers and relatives of patients on this site, and they help make up the community as much as those that have MM.
Need to get to work, I'll respond to more posts later.
Thank you, everyone, for all the kind and generous comments you have made about The Beacon and what it means to you. I can't begin to tell you how much what you have written means to everyone here on the Beacon team.
We started The Beacon four years ago because we felt it could make a significant, positive difference in the lives of myeloma patients and their families. It is gratifying to hear that, within a relatively short time, we are making such a difference for so many people.
As many of you already have noted, The Beacon is what it is today because of the efforts of MANY people -- our editors and staff writers; our patient, family, and physician columnists; our Medical Advisors who so generously offer advice and support in the Beacon's forum; and, last but not least, those of you who offer feedback and share your experiences in comments and forum postings. I offer my sincere thanks and appreciation to all of you for your contributions.
I also will make this promise: What we have accomplished thus far with The Beacon is just the beginning. There is much more that we can do to make a difference in the myeloma community, and you will see us doing more in the future.
All the best,
Boris Simkovich
Publisher, The Myeloma Beacon
Kevin,
I remember reading the comment that you reference in your column. I thought perhaps this person was new to the site and had not fully explored all the resources available here. With all the news articles, opinions, links, and the forum, it is my go to site for myeloma information.
Thanks for your article.
Arnold,
You make a very good point about how difficult it can be to relate with family, friends, etc. I don't think they can truly understand without being in the same place as we are (though a few, my wife most notably, do try). I think it's just very hard to express a lot of things to someone that doesn't have the shared experience.
Nancy S,
I agree with you about the Beacon staff. There's a lot of work goes into making this site work. It's also pretty cool that the information here gets referenced elsewhere. I find myself surprised when I occasionally come across a link to one of my columns on some other site.
Mary,
It's stories like yours that reflect the value of this community. I'm glad you were able to find the support you needed. And don't worry whether you're a joiner, or someone that occasionally pipes in, a community is made up of all types of people - diversity is one of the things that keeps the community interesting.
Derek,
I agree wholeheartedly, there are a lot better places to drown my sorrows than sitting with my laptop reading through the Beacon site. Sounds like you have a good attitude about it all, hope all goes well for you.
Music meme,
I've noted before that knowing you're not alone can be very helpful (though also sad in a different way since that means someone else is going through the same thing you are and I wouldn't wish this on anyone). And lifting others up is, as you indicate, rewarding too.
Stan,
Interesting perspective. One I had not thought about, but can agree with. The online community indeed gives us the option of interacting on our own terms and about the topics we're interested in (so you can easily avoid the discussions on lab results if that's not what you're looking for).
Jill T,
You make a valid observation regarding my referenced post. I went back to try and find the post when I was writing the column, but couldn't find it. If I recall, the posting was by someone I didn't recognize. If someone was first visiting, depending on what columns or forums they read, the site could have that effect (e.g., if all you read were some of the Member Introductions / Personal Stories, that could get to you pretty quick).
Boris,
Thank you.
And thank you to all the people you mention that make this site work. I have been particularly impressed by the support provided by the physicians. I think the Beacon is having the type of effect you were hoping for.
Kevin,
It is a great article. The sense of community and support that results from people posting into the Myeloma Beacon is truly wonderful. Newly diagnosed patients can feel that they are not alone and that there is hope, patients that have had myeloma for a while can understand when you say "(as you might expect, during a dex-day)", questions that seemingly cant be answered by your local oncologist may be answered here from someone who has gone through the same thing. We all know what it really means when someone says "travel safely".
After nearly 4 years of treatment I am in remission and have surprised many of my health professionals by doing so. I post on the Beacon because I would like to make a difference or give hope to someone along their myeloma journey (we all know it can be pretty daunting at times). I think knowing you are not alone in your journey helps.
LibbyC,
Indeed, one of the stengths of this community is that it includes patients from newly diagnosed to those that have been battling the disease for a long time. I hope you continue to surprise your doctors for a long time.
Kevin
Awesome article. I am always disappointed to see comments like those you speak of. Yes, at times we wallow in our self pity for various reasons. But, if not for the Beacon and some of the people I've met through it I wouldn't have the grasp I do on my SMM. I've met some people that even though we've neve met face to face that I consider friends. I worry for them, pray for them and am happy for them when they overcome battles. I've even exchanged conversations with you as I'm sure you remember. I can only imagine that people that make comments like these are wallowing in their own pity as well. (In their own way) I feel for them and hope they come around because there is soooo much to gain from these forums, blogs and websites. Keep up the Great writing and I hope you are feeling well.
Thanks for this thought provoking article
Art
Hey Kevin
I'm not very active on commenting in the forum but am a avid reader.This is my support group.I actually feel like I know most of you guys.Long story short,I was diagnosed with smouldering 2 years ago on a routine physical.Like Art,I am in the clinical trial With Dr Landgren at NIH.I am a 57 year old retired firefighter.I am very active as I still snow ski,golf,work out and do everything that I always did.I have my ups and downs mentally but am very optimistic about the vast amount of research and future of this disease.
Thanks
John
ps Art,I thought you had fallen off the face of the earth,good to see you are back.
Art,
The Beacon has definitely provided the opportunity to establish quite a few virtual relationships. I've exchanged email on numerous occasions with you and several others, many of the columns and forums also provide great discussion and ways get to know each other better, and I also visit the blogs of a few of the people I've come to know through the Beacon.
John,
Glad that this site has provided such good support for you. I was much the same as you initially, mostly lurking and reading, but then some crazy compulsion took hold of me to start writing a column - it's definitely provided the opportunity to get to know a lot more people. Glad you're doing well and remaining active - there was a recent posting in the Biking with Multiple Myeloma thread with a link to a WorkoutCancer site regarding the benefit of exercise in battling cancer.
I have worked for over 40 yrs as a registered nurse and, never once, took care of a pt. who had MM. I was aware of the 'clinical' book description of the disease, but did not actually 'know' the disease until someone close to me 'gave me the call'.... and then all that changed. I credit my new-found knowledge and appreciation of what is involved in going through this process to that 'someone' who has been one of the strongest people I know. He has faced this disease and hit it head-on. Yes, there are always ups and downs, but he has shown a strength I don't know I would have were it me in his shoes. I am proud of how he has channeled his energies and I am so impressed with all he has accomplished. I love reading all his 'blogs' and 'comments' and seeing how his on-line community is such a huge part of the continueing process of 'living' with MM. Congratulations on a job well-done and my thoughts and prayers are always with you. My hopes are for a cure for all and I wish you, and everyone fighting a life-threatening battle, the best wishes for recovery. Thank you for not only helping those with MM, but for also helping those who have loved ones with MM. .... Keep up the good work.... and "Peace, live for a cure" ....luv ya....to my brother, Kevin Jones....
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