.....



I was going to write a note to everyone anyway, but it came out as a combined mission with the --25 things about you-- note. If you are a contributor wondering what the heck you need to know, please just go to the end


Karen Bowles
Editor & Publisher of Luciole Press








1) One of my favorite movies when I was a kid was Red Dawn, which is a military movie about the Soviets and the Cubans invading America. It was at the time the movie that took the record for the most fake blood ever used, but it honestly did not seem that bloody. It starred Patrick Swayze, Jennifer Grey, Charlie Sheen, and more.


2) Another favorite was GiGi, which used no fake blood at all. Viva Leslie Carron! Her line to “Gaston” remains with me always: “I would rather be miserable with you than without you.”


3) I was superstrong as a kid and very dark. I took after my grandmother, who was born on the Cherokee reservation in Oklahoma. My mother took after her father’s side and is very light and red-headed. People always asked me if she was my “real” mother, and when I said yes, they would say, “No I mean your REAL mother.”


4) A woman did an “intervention” at a pool when I was about 6 years old. She followed me over to my mom after asking me the question above, and confronted her that she would have to tell me the truth that I was adopted. That it was wrong to let me grow up thinking I was actually hers. My mom told her I was hers, and that I was “born looking that way.”


5) Now I am really pale and can no longer go in the sun. Thank you, porphyria.


6) Porphyria is the disease suspected to give rise to the vampire mythology; people with it cannot be in the sunshine, over-react to environmental stimuli, etc. Plus, some actually crave blood to make up for a problem with heme (it is complicated). I do not crave blood. I do crave chocolate, but I can blame it on porphyria. Heh heh heh…


7) One of my favorite books is “The Blue Castle” by L.M. Montgomery, who is from Nova Scotia. My other grandmother bought it for me when I was 13. Her mother was from Nova Scotia too, but not Prince Edward Island.


8) Whenever I chat with anyone in another part of the world, I always want to know what the weather is like there. I used to watch the Weather Channel a great deal, and briefly thought of becoming a meteorologist.


9) My true love and ambition as a child was to be an astronomer. My older brother attended the University of Arizona at Flagstaff, and when I was 8 he was taking astronomy classes there. We came to visit him, and he arranged with his teacher to have us come in and spend time on the giant and magnificent telescope there. I know he told me at the time, but it was only later I realized truly that this was Lowell Observatory, where Clyde Tombaugh discovered Pluto in 1930.


10) When we looked through the telescope, we could see so many wondrous things that my head bounced with trying to eagerly suck everything in. It remains one of my most favorite experiences in my life. We could see little dancing storms of lightning delicately threading their way through various planets; actual lightening that is the same we have on Earth.


11) It is also the same look when an optometrist shines a light deep into the back of your eyes and you can briefly see your own veins. Or at least, that has happened to me.


12) I am saying way more on this list then I thought I was going to.


13) I moved so many times as a child that I would skip entire sections of math instruction, because curriculums are different in states. I would ask for help, but teachers told me they were too busy to help and to ask other students. They simply “could not take the time to teach me what I did not know.”

The other students had no true idea what was going on either. So I never learned much in math. I also transpose numbers like crazy. I just don’t speak the language of math, so I did not become an astronomer.


14) Looking at the stars at night calms me and makes me feel better than most things. Which is good, because daylight and I are not on easy speaking terms. Thanks, porphyria.


15) People seem to think editors can perform miracles. I try to answer all emails as soon as I can, people. Patience. I am but human.


16) When the fires of last summer caused me to have to put everything on hold to prepare to evacuate, many people sweetly wrote good luck wishes. Their biggest concern was whether Baby the Greatest would be ok (our feline advice columnist)


17) People in my neighborhood have no idea this cat is an internet sensation.


18) Baby totally knows he is an internet sensation.


19) I got into photography in high school because I had to drop my physics class.


20) Photography is one of my most favorite things in the world. I dropped other
classes to extend my time in the lab.


21) I was diagnosed two and a half years ago with a rare form of lymphoma. Only 25,000 people in the U.S. have been diagnosed with it. Then some doctors disagreed. I have a panel of docs that disagree with each other. I know the ones who diagnosed me with it are correct. More docs say yes than no. I put everything pretty much on hold in my life so that I could research and deal with this for a year.


22) Average time for diagnosis where all doctors agree is 5 years. The median survival rate is 10 years. The treatments come with FDA black box warnings that they increase your risk of developing lymphoma. Oh, and they only make me worse. They also treat you, ironically, with nuclear-strength sun lamps. Not that I can take that (yes, again, thanks porphyria).


23) I stopped medical treatment because it did not help, but caused no end of troubles. I threw myself into work online, and looked for all creative outlets. I founded Luciole Press in 2007 and am eternally grateful to the friends who sent in contributions and gave me support. I have only told a very small handful of people about my health odyssey. I have no idea what I will actually choose to do about it.


24) Which brings me to my real reason of writing this, which was meant to be a note to everyone (though I was tagged by Martyn with his 25 things note, and felt honor-bound to write one too). I debate ever being forthright and honest about these things. My long experience has revealed to me that people are skittish about health stuff. Which is fine. But for everyone who wants an email replied to, or a friend request approved, or for me to look over the contributions they send to Luciole Press, or all the burgeoning and wonderful things that are happening in conjunction with Luciole, I am now going to have to be more forthright and tell you that I will not stop working on Luciole; that it is the part of myself I feel is a tangible contribution to the world, no matter what happens to me ever. I have worked so hard on it, and I am proud of what we all have accomplished. I am having more personal health troubles in relation to the above mentioned odyssey, so I need to tell everyone that I will work just as hard as I can but I need to focus more on my health too. So if it takes a little longer to hear back from me on a message, or submission, or whatnot, know I am still on it. Just that I also will be dealing with other things.


25) Even if I am out gazing at the stars, answering emails, asking you about the weather, rescuing Baby from potential fires, happily arranging for contributions or collaborations, etc., know that I am thinking of all of you and have enjoyed everything. Luciole will still keep going; it is my happy hopeful contribution to the world, for all of us to connect and enjoy and learn and think about. I will work hard, but sometimes may be a bit absent or need to take a longer break. Just relax; as my friend S.A. Griffin tells me, (paraphrasing), it is all supposed to be fun, right? Yep!

I will probably think it is silly to have told anyone else, and that I should just work extra hard to make up for any lack. But that won’t work any longer, so you have all been notified.






Luciole Press:  www.luciolepress.com