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), now increasingly known as ME-CFS.  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.  Yes, I've had to pace myself, but , with his help, it was (and is) possible. We haven't yet found an agent or a publisher, but all in good time! A spate of bad health has prevented any more longer writing in 2009, but I'll be back.

I started writing poetry in 1999 and am pleased with my  luck publishing it and my haiga.

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 officially 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. According to Dr. Nancy Klimas, a blood test for the illness may be within two years away. There is also evidence 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. Gradually, the illness is beginning to be referred to as CFS/ME, on an unofficial basis, as mentioned above.

Exciting recent 2009 research from the Whittemore-Peterson Institute has revealed the presence of a retrovirus in the blood of people with this illness. The release of this study from researchers there, at the National Cancer Institute and Cleveland Clinic has started a wider spread interest in replicating these results and determining exactly what they mean. We're a ways yet from answering a lot of questions about this connection but, for the first time, interest has been taken in the disease to a proportion we've not seen.

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. For many years after I could only have one brief conversation a day before my throat became too painful to continue or even talk for the next few days. It's only been since fall of last year that I serendipitously discovered after my first getaway in 18 years to a condo in Daytona that moisture enabled my voice to last longer. I now run a dry mist humidifier each evening and can talk significantly more. 

During my 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.

Another good link to learn about the illness is  HERE


Poetry bio as of November 2009: Among other journals/publications, I've had my poetry, haiga and/or haiku published or accepted for publication in  Chiron Review, Main Street Rag, The Cliffs: Soundings (print), Boxcar Poetry Review, Empowerment4Women, In The FrayBlackmail Press, Peshekee River Poetry, Limestone Circle (print), Poems Niederngasse,  Erosha, The Smoking Poet, Remark Journal,The Wild Goose Poetry Review, Main Street Rag (print), Thunder Sandwich, The Dead Mule: An Anthology of Southern Literature, From East to West, Empowerment4Woman, In the Fray, Rusty Truck, 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), Full of Crow, The Oregon Review, MindFire,  Passage Through August,  Simply Haiku, Haigaonline. Moonset (print), Sketchbook , Ink , Sweat, and Tears and several other 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.   My poem in the spring 2007 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 was also been nominated. Also look for my poetry on this Australian 2003 year end retrospective website.   

I was featured poet in 2008 in both In The Fray and Empowerment4Women and in 2009, in From East to West. A nice surprise at the end of 2008 was a Pushcart Prize Nomination and two more at the end of 2009, as well as two nominations for the Best of the Net and Best of the Web nominations.

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. I've also published other haiga with a wide range of images. My haiga has also appeared in Moonset and Sketchbook.. I don't post all of my haiga links since I've published over a hundred of them now, but , again, my most recent can be found in the Spring/Summer 2009 issue of Simply Haiku.

My chapbook, Abrasions, published by  Rank Stranger Press now has a limited number of copies left. See my blog  for ordering via check or paypal.  A chapbook with Tammy Trendle, Interchangeable Goddesses. was published by Rose of Sharon, a press run by S.A. Griffin , editor of The Outlaw Bible of American Poetry, and David Smith,  but no copies are left and no new printing is planned..My latest chapbook, Hesitant Commitments, was released fall of 2008 by Lummox Press  in its prestigious Little Red Book series. Cost is six dollars, including postage (in the U.S. Add 20 percent if out of the U.S.) An anthology of the best of the Little Red Books over the past ten years was just released in the spring of 2009 and can be also found on the above Lummox Site.

For a summer 2008 interview with me on Didi Menendez's Poets and Artists blog, go HERE.

One of my poems appeared in the Brazilian Socialist Party newspaper. Here's here in PDF format. I'm equal opportunity...one also appeared in the California Valley Democrats newsletter, with a circulation of around 10,000 but that's not online.

LATE BREAKING NEWS:  Lummox Press has released my first full length poetry book, Sea Trails. this fall of 2009. The book includes poems based on my 1977 sailing trip in  my 22 foot sailboat and includes portions of log notes, some charts, and photos. I'm excited.  Order at Lummox Press or Amazon. Click on my cover at Lummox to find not only a paypal button, but excerpts from the book. Signed copies can be requested under 'special instructions' or an email to the editor after the order is placed. We can't provide signed ones from Amazon.


                                                                 


Video Reading

A video of me reading my poetry appeared the week of June 9, 2007 at http://www.poetryvlog.com/, a site run by George Wallace and his associate, Michael Mart. Thanks, George and Michael.

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. A friend created this for me with a program that doesn't allow ample time for reading the haiku on the pages, but...

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,  Russell Ragsdale, Scott Owens, 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.  These are a bit goofy, so unless you're brave of heart, don't venture here:-)

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) Hmm...in updating this I see I haven't done a capture in years. I'll try to catch up soon.
                             


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