On September 23 1990, two weeks after minor knee surgery, I woke up unable to keep my balance. My vision was blurred and my legs buckled under me they were so weak. I had head pressures and couldn’t tolerate sound or light. My eyes jerked back and forth. I couldn’t remember how to make a simple meal, but had no appetite, anyway. I threw up every day for a year. This set of symptoms was later to be diagnosed as ME/CFS.

  Not having found any real help, I survived those first nine years by pretending I was a Prisoner of War. If they could survive, I could, too, I reasoned. That helped keep me hanging in.

  In 1999, I found an immunologist who ran a treatment center for the ME/CFS. Among other things he put me on clonazopam to slow down my central nervous system. Three weeks later, my light and sound sensitivity and eye jerking were significantly reduced. I could sign onto a computer and watch a TV show occasionally. Re-entering the world via the internet and meeting other people with the same illness was a huge step. I was no longer isolated. I later learned that pacing my energy helped with the symptoms and joined Bruce Campbell’s pacing groups. 

Many people think ME/CFS is just about being 'tired'. Yes, that's one extremely significant symptom. I could ride my bike 26 miles pre ME 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)

To help save energy and reduce stress, I rely on my answering machine and rarely use the phone. I limit my time on the computer and can now watch one movie a day for entertainment (two are too many). I only invite people into my home who respect my limits. Angry, judgmental people are almost clear from my life now. I explain the illness once but don’t keep trying to explain myself if a person doesn’t ‘hear’. I avoid people who tell me ‘if only you would...fill in the blank...you would be cured’. I have a wonderful, supportive internist, found after a long search.

  Several other things keep me going emotionally. I took up poetry slowly, once on the internet, and take great pleasure in expressing myself that way and, over time, having eight small books of poetry published. I expanded into haiku, haiga and tanka, Japanese short forms originally. A book of tanka is among my publications. All of these brought me back to a childhood dream of being a writer.

  I also love being by the ocean. I’ve sailed down the east coast and over to the Bahamas, trips beautiful beyond belief.The ocean is only twenty minutes away from our house when I feel up to going over.

  My ability to walk is very limited so I ride my power chair down our lovely wooded street. Watching massive iguana, blue heron, and wild ducks roam the pond area out back all give me great pleasure. Since I also have moderate Multiple Chemical Sensitivities, house cleaning chemicals and poisons in our home or yard induce fiery throat, sinuses and extra dizziness so are never used. Someone cleans our house twice a month so my surroundings inside stay tidy and clean.

  I meditate. I have a small handful of friends who have stuck by me. People I thought were friends left my life one by one after I got sick.. A 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.

  My husband does all of the many things I can’t do and we’re fortunate to have enough money to pay someone to drive me to medical appointments.

  I try not to think of what could have been but what my life is now. I forgive myself (eventually) when I overdo or do other things to make myself worse.

A wonderful award winning film showing the effects of this illness created by Jen Brea from her bed, a Harvard graduate student when it hit her, is called Unrest and is available on Netflix Streaming. The film is also a beautiful love story about how she and her husband coped with this together.

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!

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My Southern Childhood 

(click to enlarge front and back covers, then back arrow to return to this page)
Purchase at Amazon. Print ten dollars. Kindle 2.99. Published by Nixes Mate Press. 2018

Squall Lines on the Horizon

Purchase at Amazon for 9.95 print, 2.99 kindle. A love story told in tanka form about three men, loved and lost, over my lifetime and my love for the sea.  Published by Nixes Mate Press.. 2017

In collaboration with Michael Parker is When The Wolves Comes After You Hang On. A book of free verse poetry speaking to those with pain or chronic illnesses.

   Print copies can be purchased at Amazon or, without the Amazon markup at Blurb.com
   Downloads for iPad for 2.99 are also available. Contact me at campris (at)bellsouth (dot)com

In collaboration with Scott Owens

Issued by Clemson University Press December 2012. Please contact me at campris (at)bellsouth(dot)com to to check on availability or arrange to send a check if you don't have paypal.. Any copies from me will be signed only by me. I have only a limited number.You can still order from Scott Owens for his signature (contact me) .

Here is what Ron Moran, author of The Jane Poems and Waiting, and Professor Emeritus at Clemson, says of the book: "Shadows Trail Them Home is an excellent and compelling novel in poetry, an important contribution to the cultural canon of American life, presented in an engaging but disturbing context. It needs to be read by a wide audience, not only those who have faced abuses as children, as the two main characters have, but also by a reading public that treasures poetry that fuses superior writing with major social issues."

Thanks to Shae Jasc Pense for both modeling for and photographing the cover photo.

Postage in pay pal is for U.S. mailing. Contact me if you're from Canada or overseas. Thanks. 

 

 

 Postscripts to the Dead was published by MiPOEsias Press in late 2012. Free downloads are available at MagCloud.com. Print copies can also be ordered. The cost is 7.99 plus shipping. The book was reviewed in the December issue 2012 of Wild Goose Review.

 

                                                        

 

Paul Newman Blues, a mini chapbook, was published by Full of Crow Press but their webmaster hasn't yet put any of the books they published on their website. Contact me if interested. I have a few copies.

 

                                                        

 

The Nature of Attraction, co-authored with poet Scott Owens, was released late July 2010 by Main Street Rag. No more copies are there but I have a few copies.. Cost is five dollars plus postage. Contact me.

 

                                                                            

 Lummox Press released my first full length poetry book, Sea Trails. 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.  THIS BOOK HAS  BEEN DISCONTINUED AS OF 2018. I have a few personal copies to sell. The book has been reviewed in Wild Goose Review, Pedestal Magazine and on Goodreads. Lummox tells me it's one of the press's best sellers ever. Cost has been reduced to 12 dollars, including postage,  from 15 dollars. plus postage on the site.

 

                                                             

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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 has been discontinued along with all of the other Little Red Books at the  Lummox Site.

My first small poetry book, Abrasions, published by  Rank Stranger Press. Rank Stranger has no more copies. I have a limited number of copies left. Contact me at campris (at) bellsouth (dot)net  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,  but no copies are left and no new printing is planned.. David Smith was also involved in publishing our book but left  Rose of Sharon press. Sad news is his recent death.


                                                              

I've become more and more aware of the angels in my life...there are many, but some are..Joe Zerbolio,  Marilyn Barton, Margaret Walker, Geoff Sanderson, Charlie Whitley, Neal Whitman,  Mosaad Ghoneim,  Ed Rivers, A.D. Winans, Lydia Dunford,, Michael Parker,  Russell Ragsdale, Scott Owens, Carol McRury, Dick Carroll  and all of the members of the ME/CFS online pacing group who keep me sane.....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.                               


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