About Me
September 2007
I didn't start out as a poet. I wanted to be a novelist until a major illness wiped out that idea. On September 23, 1990, I woke up with a severe case of what was later to be diagnosed as CFIDS (chronic fatigue immune dysfunction syndrome). It has only been since the spring of 2004 that I've been able to return to writing genre novels (one page a day, on my good days) by co-authoring with a friend/former colleague, now retired from the University of Missouri where we taught together for a year. We rediscovered each other after many years and resumed our friendship. I wasn't sure, with the cognitive problems connected with CFIDS, that I could sustain work on a longer project even at a slow pace, but he convinced me to give it a shot as a team. We did it and are now almost finished with a fifth book. Yes, I've had to pace myself, but , with his help, it was (and is) possible.
Many people think CFIDS is just about being 'tired'. Yes, that's one extremely significant symptom. I could ride my bike 26 miles pre CFIDS and the 'tiredness' didn't even approach what you feel with this illness since the electrical potential of our muscles don't bounce back the way they do in healthy people. (this is measurable, for the record)
When this illness first hit, I felt as if I had been transported to a place I no longer recognized. I couldn't keep my balance. Everything was blurry and out of focus. I couldn't remember the name for common objects. As for making myself a sandwich, who could remember how or even why I was standing in front of this green whirring box. It was one of the most frightening times of my life.People I thought were friends soon left my life one by one. Only a tiny core of close friends remained. Another devastating blow. One friend of two years never called me again from the day I got sick. Being unable to function, I had no way to meet new people. I learned a lot about friendship as the years passed by. I now have new friends...people who care about me and not what I can do for them or with them. This part of the illness has been a real gift.
The battle is on for CFIDS to have a new name, rather than the demeaning 'Chronic Fatigue Syndrome', implying that fatigue is the only problem. Recently, a full public awareness campaign is in effect reflecting the neurological/immunological components of this illness,, with the CDC finally publicly recognizing this as a 'real' illness (at last!). A genetic marker has also been uncovered. There is also evidence now of brain inflammation. Nancy Klimas, once a major researcher in the field until funding dried up, has been quoted as comparing the effects of CFIDS on an individual's life with end-stage AIDS or people undergoing chemotherapy.CFIDS affects concentration, short-term memory, the ability to learn new things, causes dizziness, balance problems, visual problems (try looking at a display of canned goods and keep your balance--or flashing lights or piles of 'stuff'). It can cause tinnitus, muscular 'roaming' pain, noise sensitivity, sore throats and voice loss, killer headaches, TMJ, difficulty following conversations and that dreaded 'brain fog', to list the main symptoms, all of which I have.
For nine years, I was too dizzy to read, to watch TV, to work on the computer, not to mention the losses of my beloved bicycle, piano playing, sailing, and a number of other interests. I lost my voice for three years and had to communicate by notes or fax. I still can't only have one brief conversation a day before my throat becomes so painful that I have to stop and then do voice rest for the remainder of the day. During those worst years, I told myself each day that all I had to do was get through that day, step by step, and survive. It was all I could do. When I improved in 1999 enough to do a few more things, it felt like a miracle.
Before this illness hit, I was a 'health nut' and former clinical psychologist of sixteen years, having switched over to join my husband in his business and also write novels--a lifelong dream. I biked daily, did our yard work, sailed, played piano, had many friends, was active in our chamber of commerce and in Zonta, a professional women's' service organization.
As a Clinical Psychologist, I lived and worked in such diverse places as St Louis, Missouri, Hawaii (gorgeous beyond belief), Rhode Island, Boston, and West Palm Beach, Florida.
In the late seventies, leaving the Boston commune where I had lived for three years, the current love of my life and I , accompanied by my cat, 'Monster', traveled six months on a 22 foot sailboat on a meandering trip which planted me here in Florida.
Talk about roughing it :-) The Vineyard, Long Island Sound, the Chesapeake Bay, the Outer Banks all hold their special wonders, as do the many other sights along the way. Wait until you picnic on an island where shoeless wild ponies run free, learn to read the sky and ocean for the weather, and fall into waking and sleeping along with the rhythm of Mother Nature. I loved it.
After living in Florida a few years, my current husband and I sailed over to the Bahamas for a much shorter trip, down the Abacos Chain of Cays to Green Turtle, a great Cay! The Bahamas you see from a small boat doesn't even resemble where the cruise ships go in. Poverty and beauty live side by side on these smaller Cays.
My life has changed profoundly from those days, but as they say, 'If life serves up lemons, then make some lemonade'
Well, one can only drink so much lemonade, but right now it appears I have no choice.
The next time you meet someone with with this illness, please don't say 'I get tired too'. Try to understand their frustrations. Don't send them every 'cure' you read about or tell them you've found the doctor who can 'cure anybody', then get mad if your advice isn't followed.. Chances are high that they've read or tried everything imaginable and more and are weary of hearing the same thing over and over.. If there was a magic bullet , we would all already be cured. Don't tell them they can cure themselves with their mind. The mind-body connection is very important, but it's not magic. Ask anybody with cancer about that one. Anyway, Thanks from me and the millions of others affected.
And thanks for visiting my page!
To visit the webpage of the CFIDS association of America, click HERE.RECENT UPDATE Spring 2007:
A major conference was held in Ft Lauderdale, attended both by prominent doctors in the field and parts open to patients attended by those who were able to attend. The conference was summarized by Prof Anthony Komaroff in an online report. He is encouraged by the wealth of new research presented and the exciting developments we have seen in the understanding of this illness over the past decade. The future certainly bodes well for CFS. Dr Klimas was thanked for her hard work in bringing such an excellent conference together, and members of the IACFS were encouraged to vote towards a name change to ME/CFS (Myalgic Encephalomyopathy/ Chronic Fatigue Syndrome) quite a mouthful, but a true reflection of the organization's international status and more acceptable options for the name of the illness.
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Poetry bio as of April 2008: Among other journals/publications, I've had my poetry, haiga and/or haiku published or accepted for publication in The Cliffs: Soundings (print), Boxcar Poetry Review, Empowerment4Women, In The Fray, Blackmail Press, Peshekee River Poetry, Limestone Circle (print), Poems Niederngasse, Erosha, Thunder Sandwich, The Dead Mule: An Anthology of Southern Literature, Short Stuff, International War Vets Poetry Yearly Anthologies (print), Small Potatoes, MiPo Quarterly, MiPo Weekly, OCHO (print) Dakota House, Verse Libre, Tears in the Fence (a U.K. print journal), The Oregon Review, MindFire, Muses Kiss, Passage Through August, Simply Haiku, Haigaonline. Moonset (print), Sketchbook and several other regular poetry journals. Four poems are in the print publication, Women of the Web(print), edited by the editor of Verse Libre, the Poetry Editor of MiPo, and Dorothy Meinko, an excellent poet, the MiPo Bonsai Edition 2004, and the Pressure Point Anthology, compiled by Ron Androla. I tied for Poet of the Year in the Poetry Board League Competitions (PBL) in 2004 and my poem, Denial, took second in the free verse category of the Poets of the Palm Beaches annual poetry contest. My poem in the spring issue of Boxcar won the Peer Award for the issue and has been nominated as one of three by that journal for a 'Best of the Internet' Anthology. A poem in The Dead Mule has also been nominated. Also look for my poetry on this Australian 2003 year end retrospective website.
My self-portrait haiga is in the mid-season 2007 issue of Haigaonline and in a 2006 issue of Simply Haiku. The Haigaonline editor took time to read this bio first and wrote a wonderful introduction to the haiga, including information about the illness I deal with . I hadn't yet added the note about the name change but nevertheless, it's a wonderful issue and spreads the word about ME/CFS even further. Click on my name in this link to read and see the haiga HERE. Take time to visit the rest of the issue, too.
My chapbook, Abrasions, published by Rank Stranger Press now has a limited number of copies left. See my homepage for ordering via check or paypal. A chapbook with Tammy Trendle, Interchangeable Goddesses. was published by Rose of Sharon Presses, a press run by S.A. Griffin and David Smith, but no copies are left and no new printing planned..
Boxcar Poetry Review Peer Award (May 2007)
Dear Contributors:
After tallying the votes from each of you, We are pleased to report that Pris Campbell's "Undertow" is our latest Peer Award winner for Best Poem in the May 2007 issue. She will be receiving $25 and a "gold star" for her efforts :)
Peer Award Winner
"Undertow" - Pris Campbell
Runners Up
"Oneiromancy" - Doug Ramspeck
"North Carolina By Greyhound: First Christmas After the Funeral" - Joe Wilkins
Once again it has been an honor to showcase all of your work -- we've heard many wonderful comments from readers and contributors regarding the poems in this particular issue. If you haven't already, take some time and reread these excellent poems at Boxcar Poetry Review ( www.boxcarpoetry.com)
Best wishes,
Neil Aitken, Editor
Boxcar Poetry Review
Video ReadingReading the week of June 9, 2007 at http://www.poetryvlog.com/, a site run by George Wallace and his associate, Michael Mart. My reading will be in the archives after week's end.
THIS LINK goes to a slide show of some of my haiga and graphics, many of them from my self-portrait series. Sound, so turn on your speakers.
I've become more and more aware of the angels in my life...there are many, but here are the words of two who have written recently......
sending you lots of love and peace and patience that is the hardest isn't it and of course the sense of betrayal...but you know you are truly amazing and have accomplished in the face of at the hand of in spite of your fine adversary an incredible amount and you should feel as least as triumphant as the woman who wrote sea biscuit--i applaud and laud you
from judi goldberg, poet, nurse, brain tumor survivor, and human be-ing extraordinaire
and another note:
Like you told me when I wasn't able to do my walking. "This is just how it is now. It doesn't mean it will always be that way." That helped me a lot and sure enough I am able to walk as much as I want with no pain.
from Margie Stevenson, long time friend, retired psychologist, survivor of lymphoma, and shining spirit in my life.so many more angels...you know who you are...Joe Zerbolio, Mosaad Ghoneim, Marilyn Barton, Charlie Whiley, S.A. Griffin, Ed Rivers, A.D. Winans, Jon Bohrn, Eloise Nenon, Lydia Dunford, Geoff and Jill Sanderson, Michael Parker, Kevin Rowley, Iri K...more...thank you!
Many thanks go to my husband for driving me to doctors' visits, taking over the grocery shopping, yard work. basic errands and more.
For a smile.....some photos over the years.
I occasionally send a cam shot up to the web when I'm on the computer, but don't wait around long for a new one. It's not very often, but if you want to see me and my office in 'somewhat real time' click HERE. (Sometimes other people are in the photo captured)
HOMEPAGE POETRY INDEX ONE POETRY INDEX TWO