John - Rewriting the Story of The Big Bad Wolf
Many folks who work with us do not have lupus but they're as dedicated to easing pain, raising awareness and finding a cure as those who do. John O'Connor is the editor/publisher of one of the most respected lupus newsletters in our global community and a great ally.


I edit and publish The Lupus Sundial, a quarterly newsletter of the Marcy Zitron Chapter (LFA) in Central Ohio. My friend Shar has been asking me for a few weeks to write something about myself for her lupus 'blog', so I'm finally getting around to it. I took up the editing job on the newsletter in late 2002, after browsing an internet 'volunteer' site and finding the request for an editor.

I had proof-read and printed a bi-weekly bulletin for a local Kiwanis club a few years back, and still had the 'itch' to do informal publishing. My dad was a printer and proof reader for a couple of Indianapolis newspapers for over 40 years, so whether I was conscious of it or not, I had a lot of exposure to the craft from way back.

One of the most rewarding things about doing the newsletter is the support and encouragement I get from the officers of the chapter. From the first, President Dolly Harmon and Treasurer Deb Hutchison told me to use my own instincts regarding content, as long as I could keep the information readable for the lay person.

That's not always possible, given the rather technical/medical terms that accompany lupus, or any disease, but there are still lots of ways to keep some of the 'med-speak' to a minimum. There's always a good 'human interest' story out there, which is what I try to include in every issue of the newsletter.

I don't suffer from lupus personally, so I can't impress anyone with how I manage to work a full-time (3rd shift) job as a computer techie, help raise a couple of teenagers, and squeeze in a newsletter four times a year. My son Matt is about ready to graduate from Ball State with degrees in Sports Management and Wellness Management. My other 2 kids are Steve, 18 years old and Emily , who is 15.

As I mentioned, the opportunity to do the newsletter made itself available at just the right time for me, and I get a lot of enjoyment from the different tasks that go into putting it together. As maligned as the internet may be, it is the main source of my articles, and I'm very glad to have the variety to choose from. I've found that authors of all sorts of lupus-related articles are more than happy to allow me to reprint their work for our local audience.

Finding the articles, contacting the authors, getting approval to reprint, and filling out the newsletter with my own personal touch (a 'today-in-history' two-month calendar and a 'home-grown' crossword puzzle) takes up most of the time in between publication dates. There's ususally a few very specific announcements to include with each issue, so I try to give the chapter officers plenty of time to get me that kind of info each quarter.

In just the first year of doing the newsletter, I've gotten to correspond with book authors, dedicated doctors and medical researchers from numerous universities around the United States, and even a Hollywood celebrity! Another wonderful 'lupie' acquaintance of mine is Shar Phoenix, a very talented writer who has her own touch of 'glitz-n-glam' and an amazing way with words. Finding her musings on lupus in various spots on the internet has been a real treat, and I'm hoping to make abundant use of her talents in the future by 'borrowing' articles and stories by her and other 'blog' submitters.

One of the nice things about the physical creation of the Sundial is the help that is provided by a dedicated class of middle-school kids in my town (on the north side of Columbus). After getting my final copy to the printer, the unbound editions are then delivered to the class for 'assembly' and addressing. Once that is done, which is no small feat, one of the teachers gets the 400-plus newsletters to the post office for bulk mailing.

I don't know how many of you may have had a 'bulk mail' experience, but I tried it once on my own last summer, and I don't plan to repeat the process again in this lifetime! The thing that most sticks in my mind was trying to get labels on the plastic and cardboard tubs while standing on the floor of a post office loading area. The day I took the newsletters in for final sorting and mailing, we had a tornado or two in the area, and all the bay doors on the loading dock were shut tight, thus providing me with a constant 9o-plus degree work environment.

After an hour or so of this experience, I left my latest editions with a courteous (disinterested?) postal 'liaison', hoping they would be on their way to chapter members by that night. Of course the next morning I was called by another 'liaison' and informed that my tubs were over-stuffed, and I would have to break my shipment down into more manageable packets. I finally ended up coercing my wife and kids into the family 'project' of addressing and stuffing envelopes with the newsletters, in the end paying close to one dollar per issue to mail them first class! Needless to say, I have nothing but pure respect for the dedicated middle-school class and their teachers for handling this task each quarter (at much less than $1.00 per copy!)

One of my goals as the newsletter editor is to get to know some of the other chapter newsletter folks around the country (whether LFA-associated or not.) I haven't had the time to really approach anyone directly, but many of the newsletters from different regions are sent to our local office, and we reciprocate by sending at least one copy to most of the current chapters of LFA.

As time goes on, I hope to be able to share some ideas with other editors, in order to help us all come up with the most informative newsletters that we can. Unfortunately, it looks like I'll have a job in the lupus information biz for the forseeable future. It's my hope that the continuation of efforts like mine and other info 'disseminator's will somehow be part of the equation that eventually provides a lupus cure.

©2004 John O'Connor
- posted by Shar @ 3/17/2004