GrannyBarb's (cyber) grandchildren

Have you ever known a city of several thousand people that had only one restaurant? Wouldn't you want some choices, places with a different atmosphere and different fare?

For a decade, the online CLL community has had the ACOR CLL List. It's well-established, a bit formal, a place where you can get a little dressed up and have an elegant dinner. The food is often excellent, and the ambiance is a bit reserved, with a premium placed on good manners. But what if you want to go somewhere to unwind, wear jeans and a T-shirt and get a burger and a beer?

The restaurant metaphor came to mind as I began to ponder the significance of a new CLL patient and caregiver resource, the CLL Forum, which came online last week. Naturally enough, some people have wondered aloud whether CLL Forum is intended to compete with that venerable establishment, ACOR. I am offering my views here, both as an ACOR listmember for more than two years and as a moderator in the new forum. As always, my opinions are strictly my own.

The ACOR CLL list was founded in 1996 by Barbara Lackritz, better known to CLLers as GrannyBarb. Barb was a CLL patient who fought the disease for 14 years, and who turned her considerable energy and talent to using the internet for the betterment of the patient community. I did not get to meet her -- she died several months before my diagnosis -- but she is spoken of with affection and even reverence by those who knew her.

ACOR, for those who don’t know, stands for Association of Cancer Online Resources. This organization, which hosts any number of lists for any number of cancers, uses a listserv format. Back in the last century (!), that format was all the rage. It is text-only, which means that users cannot upload pictures or use graphics. (Even using the "rich text" setting in one's e-mail program can cause a mysterious "=20" to appear at the end of each line.) Posts can be delivered to members in a daily digest, which contains a long string of posts organized by nothing more than the order in which they were posted. Thus a jumble of subjects awaits the reader. After their day in the sun, the posts disappear into that dusty cyber-attic known as the ACOR archives, which are invaluable in that they contain 10 years of patient experiences. The archives allow for a basic organization of the material through a search function, which, alas, seems to befuddle some members.

The listserv format is thus self-limiting, although some people have grown comfortable with it, and there is no denying that it is relatively simple to use since there isn’t much you can do with it. Other people, who have experience posting at non-CLL discussion groups where messages are threaded, and where graphics are part of the communication experience, find the listserv to be one-dimensional. Posting photos, using avatars, changing font colors and sizes, using emoticons (those little smiley things), and allowing for off-topic subforums can create a greater sense of community by allowing people a greater latitude to communicate. This can be especially valuable in providing emotional support, one of the key functions of the online experience for cancer patients.

ACOR’s limited format has other consequences. By extension -- because it would be even more cumbersome to slog through a digest containing 60 posts each day instead of 20 -- ACOR has developed a tradition of trying to stick to the point. Apparently, GrannyBarb had to admonish the occasional member to “stick a sock in it.” And so ACOR has dealt largely with treatment issues -- with the murky proviso that one not give "medical advice" -- and to some extent with emotional ones. Ranting is discouraged, off-topic discussions are prohibited, and matters that might inflame the emotions, such as religion and politics and comments on private v. socialized medicine, are verboten. There is even a ban on “internet humor.” These things are generally understandable given the limits of the listserv format, which requires that the information provided be as focused and as brief as possible.

But, alas, this atmosphere can be stifling to the more free-spirited, and it has encouraged a hall-monitor mentality among a few listmembers, which can be a source of friction in itself. Any group, of course, has its discordant moments. If a waiter occasionally spills soup on a customer, or a customer has a bit too much Bordeaux and starts throwing rolls across the table, it does not mean that the restaurant is a bad place. The ACOR CLL list was, is, and will remain first among equals, an invaluable resource, a place with familiar traditions and excellent food for thought.

CLL Forum, by contrast, uses a discussion format that allows for all kinds of experiences. By its very nature -- a discussion group for leukemia patients -- it will deal with some of the same treatment issues as ACOR. But so do any number of other groups, such as the Leukemia and Lymphoma Society BBS and the three groups on Yahoo: Scott’s excellent CLL Research and Advocacy, where the latest abstracts and news updates are posted; John’s SLL-CLL-Edu, which discusses exactly the sort of treatment questions that arise on ACOR, and which gave rise to the CLL Information Group; and Walter’s CLL_Alternative_Therapies, which goes off the beaten path into an area sometimes discussed on ACOR and often met there with skepticism.

All of these, except the Leukemia and Lymphoma BBS, were founded by people who started out at ACOR but who found, for one reason or another, that there was a niche to be filled elsewhere. They opened their own cafes. And lest we forget, CLL Topics began as a discussion group on Yahoo, and Chaya was an ACOR listmember prior to that.

Now we have CLL Forum, and I’d say this is becoming quite a restaurant town. Ultimately, the events that gave rise to any of these forums are inconsequential in hindsight. Who remembers, and who cares? The important thing is that patients and their caregivers have more choices, more places to belong, more chances to learn and to get the support they need.

Something like CLL Forum was inevitable because of the format limitations of ACOR, and these have been noted in discussions on the ACOR list for quite some time. CLL Forum allows for posts to be compartmentalized by subforum and then topic, and to remain publicly accessible for later viewers, as opposed to disappearing into an archive. The graphics capabilities, as well as those for instant messaging among members and live chat, allow for expanded opportunities for emotional support, and for dealing with all dimensions of the CLL experience. There is even a space for people to rant without bothering those with delicate ears. There are also places just for newbies; one of the problems with the listserv format is that announcements of depressing events such as patient deaths are mixed right in with everything else, making it hard for new patients, just getting their feet wet, to read the daily digest without freaking out.

CLL Forum also has places for people to relate to one another without talking about CLL, to share the other things in their lives that make them whole people: games, hobbies, family, pictures of the canine and feline kids, and so on. In this restaurant, the menu is larger and more organized, and there are several dining areas, some with Mozart playing in the background, some with rock and roll. There’s a pool table and a bar, for those inclined, and I think we may even have a singer, but there are quiet niches, too. It’s a large place, where the food may vary a bit in quality, but where you are more likely to strike up a conversation with a stranger.

Many CLL patients and caregivers have been members of more than one discussion group for quite some time now; I count myself among them. A number of people from ACOR have come over to CLL Forum to sample the fare and are now posting to both sites. (And given CLL Forum’s easier visibility on the net, it will probably attract members who will eventually gravitate to ACOR as well. This networking will help everyone -- after all, there’s a reason they call it the “inter” net.)

There's no law that says you have to eat at only one place, and it is a testament to the energy and dedication of the CLL patient community that we have any number of choices, depending upon what you're in the mood for. You can, for example, have breakfast at Yahoo, lunch at CLL Forum, and dinner at ACOR, after which you can stroll over to the university coffee house and listen to Chaya or Dr. Hamblin. (And you're always welcome here at the hot dog cart.)

We have some ethnic food, too: There's the UK-based CLL Support Association. ACOR has a CLL-UK list, which is managed by one of the managers from the main list, who wears two hats. Then there's Chris's CLL Canada -- I'll take some maple syrup with that! -- founded by another ACOR listmember. In fact, a separate CLL-CN list was started on ACOR in 1999 following complaints that the main list was too oriented toward US issues, leaving members from the Great White North out in the cold.

It's instructive to look at what Barb did about the “competition,” as it were. Here’s what she posted:

Dear Members of CLL-CN,

This is the first post on the list. We started it today with all your names. Maggie is your Canadian List Manager and I'm her assistant manager. Maggie is over the moon about this and I'm flying on her coattails as an honorary Canadian on this list. This lets you know we're open for business.

I'll help in any way I can, and I certainly hope you'll all decide to remain with the global CLL list as well.

Maggie, it's over to you.

GrannyBarb - Honorary Canadian and proud of it! DX 1989, Fludara, Fludara/Mitaxantrone, Fludara/cytoxan, Auto BMT 6/97, presently cancer free

GrannyBarb’s example was to participate in more than one place, to welcome the new kids, and to keep working tirelessly for patient support and education.

As I said earlier, I never had a chance to know her except by reputation. She was the first CLLer to pioneer the internet, and her dedication led to the creation of a brilliant child and enduring legacy, the ACOR list. My guess is that she would be pleased with her growing number of grandchildren, who each contribute in a different way to building a sense of community, and to providing knowledge, comfort, and hope. We should never forget that all of these sites are brothers and sisters in the struggle against an insidious disease. And with the inspiration of Barb's example, we will together, I hope, one day slay the dragon.

I will let Barb have the last word as, I imagine, she usually did. Her generous and positive outlook can be seen in this post from September 1998. While the group to which she was referring was the ACOR CLL list -- no others existed at the time -- her words could just as well apply today to the larger group of resources that has grown out of her original effort.

“We weren't even really a list, just a nutty group of CLLers who had found one another and were determined to share with one another. I'm so glad we did find one another though, and that we grew, and grew, and grew! Each new member of this group adds so much in thoughtful, helpful information that it's wonderful.

"OK. I'll get off my soapbox, but thank you all for being here, for sharing, for supporting us, and for letting the world see what a determined group of CLLers can be.”