Saturday, November 28, 2009

Virtual Book Tour: Pris Campbell on Sea Trails


(super-quick update: I'm doing pretty well and have just been focusing on enjoying the holidays, the crash is easing and I'm catching up on some things)

I am very honored today to host a virtual book club stop for author and poet Pris Campbell. Her new book, Sea Trails: Poems and 1977 Passage Notes, is out and here's Pris to talk about her book!

What prompted you to write Sea Trails?
Actually, I never set out to write a book. I wrote Streaking, a poem based on the New Jersey leg of my 1977 trip down the east coast in my Tanzer 22 sailboat. A terrifying storm hit the night we headed for Atlantic City and I tied it in with the deteriorating relationship with my partner whom I refer to only as R. The poem was published in Empowerment4Women and tucked it away under my other publications.

I soon realized how much I enjoyed writing that poem, so I wrote more, based on other aspects of the trip. I started a sailing poems folder. From time to time, I would add to the folder. One day I looked at the poems trying to decide if I wanted to submit a batch to a journal and suddenly recognized that a book was actually trying to write itself. I dug out my old scrapbook from the trip, with photos and snippets of small charts from the area guidebooks along the way, then pulled out my old log books. Yes, I still had them almost 30 years later. I began going through the log notes and writing more poems as they spurred more specific memories. It seemed natural at that point to add snippets of the log notes since they provided a good transition between the poems. I merged and smoothed them out for better reading.

I still didn’t have confidence that it would be taken seriously with log notes, so I sent it to Lummox first with them removed, but mentioned what I’d done. Raindog said they actually sounded intriguing and asked to see them. He liked the combination and Sea Trails was born.

What prompted you to get into poetry in the first place and when was that?
I’ve loved writing since my childhood. In the sixth grade my class put on two plays I wrote and I started a novel when I was 14. My writing was set aside, except for occasional short stories or articles, for a number of years when I went to graduate school then began a career as a Clinical Psychologist. In the mid eighties I couldn’t suppress that longing anymore so began working on a novel in my spare time. I was in my second attempt at a decent one when I was hit by CFIDS, also known as CFS or ME/CFS, in 1990.

This illness isn’t just about being tired. All sorts of cognitive/neurological problems come with it. In many ways I felt as if I’d had a stroke, but didn’t have one. I had balance problems. I was swimmy dizzy. My thoughts were jumbled. My short term memory was shot. And on top of that light and sound were so overstimulating that my options were totally limited for about the first 8 years. When I finally found a doctor who was able to help me get some of these symptoms under control and deal with what was left, I was able to sign onto a computer for the first time. This was 1999. At this point it was as if I’d lost everything, so when I found a haiku site and found I could write some terrible semblance of the form you can’t imagine how overjoyed I was. Be it small, I’d found a way to be creative again. As I improved more, I moved on to free verse and found my real niche there. This was in late 1999.
Bit by bit my writing began to improve. I started to publish and things continued from there. I had always loved poetry and we had poetry books in my home as a child but I’d never imagined myself writing a poem.

So here’s the short answer…yes, yes, it’s wonderful to do creative writing. Haiku and free verse are so very freeing. Both can lead you to your wabi sabi.

Since you have CFIDS, what inspires you to write these days? Is it different than before you got ill?
My inspiration for writing hasn’t changed. As I said before, I write for the joy of it. I always have. I rarely write about being ill, although sometimes I do. I write about whatever seems to push itself into my mind and demand a hearing. I write funny and I write sad. I write sexy and I write about loss of sexiness. I write about other people. I write about myself. I write about aging. I write about a teenager’s loss of innocence. And I write about the sea. My body may be trapped, but my mind still runs free.

Do you have any advice for people (poets or otherwise), reading this?
I would first say never put off the things that are really important to you. Nobody knows when life is going to throw a curve ball. I left a secure, well paying job to make the boat trip I write about in Sea Trails. I suppose I could’ve waited but something kept urging me…’do it now’. I’m so glad that I did.

If you do get stonewalled, once you grieve your losses, which is important to do, find something, no matter how tiny, that give you happiness and do it. When CFIDS first hit, my mind was a mess. It felt in many ways as if I’d had a stroke. I couldn’t think. I couldn’t remember names for things. I couldn’t remember something as basic as how to make a sandwich. That doesn’t even take into account the incredible muscle limpness, the dizziness, inability to keep my balance or the nausea that made me throw up every day for the first year. Right now, my hands are so weak that I have to write a few lines of a poem I’m working on, stop, put it aside for a while, then start again.

In 1999, I met a poet on the CFIDS forum shortly after I’d begun my first attempts at free verse. She’d taught herself basic html and designed her own website from scratch. My first reaction was, ‘it’s impossible for me to do that. My mind is too shot’, but I found a site that gave html instructions and printed them out. It took me three months to learn what I could’ve learned in 3-4 days in the past, but I did it.
My last doctor always reminded me that I may be a tortoise now, no longer the hare, but that the tortoise won the race and never forget that. I would repeat that advice to readers. No matter what roadblock you run into, find a way around it. If you run into more roadblocks, create a new plan. Never let anything stand between you and your pursuit of something you love.

One last question: With all of the poetry books for sale right now, what makes yours unique?
I like the fact that my book tells a story. I think that’s fairly unique. The reader can travel along with me by way of poem, log notes and charts on my trip. I think most people have a sense of adventure in them, even if it’s not an urge to go to sea. Also, the book tells the story, in counterpoint, of the deteriorating relationship with my partner on this trip. So, we have two stories progressing at the same time. My feeling all along is that this is a cross over book, one that will appeal to nonpoets as well as poets. I’ve had this feeling confirmed when people who don’t even read poetry, much less write it, have read the book and tell me they can’t put it down. Poets have told me the same thing. I love it when poetry can move over to reach a wider group of readers.

***
Thanks, Pris! And now, here she is, reading a selection from her book, Sea Trails:


Sea Trails by Pris Campbell can be purchased directly at http://www.lummoxpress.com and clicking on the book cover. It can also be purchased on Amazon. If you’d like a signed copy, please buy through Lummox Press and instruct us that you want it signed.

After you click on the cover at Lummox, you’ll get a paypal button.

Please feel free to discuss, ask questions and leave comments below! Thank you for attending this stop on Pris' book tour!

Sunday, November 15, 2009

Struggling

It feels like all the improvements I've made have vanished. I've been practically bedbound for the past week. I've had a lot of stressors the past couple weeks and still have not recovered from the intense round of antibiotics to treat the staph infection. As Murphy's law would have it the infection started to come back late last week prompting a return to the podiatrist. The podiatrist noticed the big toenail on my other foot is starting to get ingrown. Because of my history of developing staph infections quickly he said "we need to pre-empt this one" so I'll be having minor surgery to remove part of my toenails on both toes again. I'll have the surgery on November 30th almost 1 year to the day that I had the last toe surgeries. It's quite discouraging having to go through this again but I can't afford to risk yet another staph infection.

One week ago I was in bed with a mild case of vertigo. I've been having little episodes ever since. Plus at times I feel on the verge of having some sort of seizure. It's a strange feeling. I feel like if I let go I'm going to go into full on vertigo or start having seizures. Both frighten me.

I'm continuing to lose weight. Luckily I had gained a bunch of weight-probably 35 pounds. I needed to gain 20 of those pounds. I've probably lost almost 20 pounds now. I don't have much of an appetite so I'm having to force myself to eat. I feel nauseated most of the time but luckily its rather mild.

I don't know what to do. I can feel Eeyore sitting on my shoulder telling me "what's the point of pinning my tail back on for it will just fall off again." I need to speak with my ME/CFS doctor but it costs a lot of money. Until I get approved for SSDI I'm in a tight spot.

So I'm feeling fairly weepy. I don't know how people who've had this disease for a long time hang in there. I hope I can hang on. Dr. Nancy Klimas at the end of the following video that "now is the time not to give up hope":

http://cfsknowledgecenter.ning.com/video/klimas-on-xmrv

For awhile I hung on to those words but with the current decline in my health I'm finding it difficult to hang on to hope. I'm frightened of what's ahead. I'm scared about possibly having a retrovirus like XMRV. Mainly I'm frightened because I'm developing new symptoms and I have no idea what to do.

I've decided to stop the LDN for now just in case that set something in motion. I doubt it but just in case. I think all the stress of late has done a number on my body. My main complaint has to do with my brain. It just doesn't feel well-almost like its swollen somehow. There's the headaches, the sound sensitivity, the smell sensitivity. I'm tired of it. I feel trapped in it.

I'm trying to find my way back to a sense of peace but need new tools. The ones I have aren't working right now. I long for a sense of community but maybe I'll never have that again.

I was doing some thinking about when I got sick. The most serious and debilitating symptoms showed up in 2007 but in 2005 I did acupuncture. The acupuncurist had me do a 24 hour saliva test for adrenal functioning and when the results came back he said to me "I'm surprised you're even functioning." My adrenals were shot in 2005 but I didn't take the test seriously. I was so engaged in writing my dissertation, working, etc...that I didn't have time to not function. It has made me wonder if I've been sick longer than 2 years. Supposedly XMRV likes cortisol so high stress causes it to replicate.

I'm getting dizzy so will have to abruptly stop here. I just wanted to give a little update. If anyone has any suggestions feel free to suggest.... :  )

Oh, The Whittemore Peterson Institute has the questionnaire up on their website. Anyone in the world can take it. I would encourage everyone to fill it out as all and any information is useful. Here's the link. Scroll down near the bottom of the page and you will see it.

Thursday, November 5, 2009

Trolls

I was forwarded this article today regarding trolls. I thought it might be helpful in case anyone else  finds themselves in this situation. I found it quite helpful.

Statement from Whittemore Peterson Institute Regarding XMRV Testing

The Whittemore Peterson Institute has issued a statement regarding XMRV testing. They recommend VIP Dx Lab.

It's worth noting that all net proceeds from the test will go towards funding further research at WPI.

This was posted on The Whittemore Peterson Institutes Facebook page.

Wednesday, November 4, 2009

Updates

A number of people have sent emails asking about XMRV testing specifically regarding the study my doctor's office is doing. Since I don't have the energy to respond to emails right now I thought I would post a couple answers to questions people asked.

I did go to my doctor on Monday and got blood drawn for a study. However they are only testing patients who are already a part of their practice. I was not able to find out if there are other doctor's across the country doing similar studies.

The Whittemore Peterson Institute will be conducting a study starting in a month or two. I am fortunate to be able to participate in that. I wish I had the name of the researcher who left an anonymous comment on my blog post last week urging me to contact WPI because of my family history of cancer (my dad has a reoccurrence of prostate cancer as well as chronic lymphocytic leukemia and my mom died 44 days after being diagnosed with a very aggressive form of adenocarcinoma). Somehow I managed to find my way to Andrea Whittemore-Goad who very generously put me in touch with one of the researcher's at WPI. I was contacted by someone from WPI yesterday. I am reminded once again that the words "Thank You" are inadaquate to express the depth of gratitude I feel.

Neither study will provide any answers but I am grateful to be able to participate.

I had to stop the LDN for a few days because it was increasing my sleep disturbance and because the Keflex has been making me feel extra bad. I restarted it at a much lower dose (.5mg rather than 3mg). I'll slowly work up to 3mg).

I'll restart the Artmisinin once I recover from the Keflex. I won't be finished with Keflex until this Friday so I'll restart the Artisinin next week.

Lastly, I've been contacted by a publisher to review a book called "Unexpected Blessings" by Roxanne Black who was diagnosed with Lupus at the age of 15. It is a book of "stories of hope and healing." I received it this morning and took a very brief look at it. It looks like a wonderful book and I look forward to reading it. Once I finish it I'll devote a post to this book.

Crashed

I probably shouldn't be blogging today. I'm in a weird crash and feeling sad and upset by some things. This is one of those times I should just try to stay with my feelings and process them privately. I may say some things I shouldn't but at the moment I'm too  tired to care. I've been taking 500mg of Keflex every six hours which means I've had to set my alarm for 4:00 a.m. so as not to miss my dose. And yes, I have needed a high dose of antibiotics to treat the staph infection that was spreading. Needless to say I haven't been getting much sleep which is probably contributing to my mood. In addition I'm getting episodes of vertigo when I spend too much time on the computer.

Obviously I've been spending much time blogging about XMRV. This seems to have upset a number of people some of whom have either left snide comments on my blog or written some less than kind emails. The most upsetting thing has been that a couple of the anonymous comments came from people I know and another from a completely unexpected source. I realize the news about xmrv is creating a lot of different emotions. I too am going through the ups and downs and crashes from all of this. But its the first time I've had reason to hope or even entertain the hope that maybe just maybe I can have more of a life than I do. I'm not able to get out much. I can't walk more than one block, I can't drive more than a couple miles. If I blog it means not sending out emails. If I send out emails I can't blog. Each decision I make about something I do involves sacrificing something else.  Unfortunately it means I can be perceived as flaky by people who don't have this and then there's the silent punishment for not being able to respond in a timely manner.

I miss by blogging friends or maybe I simply misjudged. It wouldn't be the first time since I've gotten sick that I've misjudged peoples intentions. Nor is it the first time that people have disappeared. I'm used to it by now from people who aren't sick. Sadly I've come to expect it from healthy people. I just didn't expect this sort of response from my peers. I didn't expect the comments or emails(the supportive ones I love). I try not to let it but I do find them hurtful. I wasn't going to post about it but I think I'm just too raw at this point from not feeling well, the lack of sleep, etc...I can't shake the feelings. It's hard to have thick skin when I don't feel well. Plus I'm pretty sensitive to feeling on the periphery. It's an old wound.

But I refuse to put aside my enthusiasm for what is occurring at The Whittmore Peterson Institute nor will I stop blogging about it. I've read on message boards where a few people are saying that the pharmaceutical industry just wants more money and that they will capitalize on this. You know what I say to that? GREAT! Because it means there will be more research into finding medications that will help us. I'm not naive about profit motivations. I worked in San Franciso since before the AIDS epidemic. I lost many friends to that disease. Then they discovered that the retrovirus HIV. It wasn't too long after that the antiretroviral drugs came out. Now they are able to stop HIV in its tracks. People are living with HIV now rather than dying from it. People are dying from ME/CFS too.

The Whittemore Peterson Institue has been able to examine live XMRV in vitro. That means they can start testing treatmens on the live virus. Will this be an answer for everyone with ME/CFS? That remains to be seen. Am I excited to possibly have a deadly retrovirus? Absolutely not. Whether its years or sooner I am hopeful that we will get answers.

From the Reno Gazette :

Judy Mikovits remembers that “eureka” moment when she realized that she and her team of researchers at the Whittemore-Peterson Institute in Reno had discovered a new retrovirus that could lead to a possible treatment, even a vaccine, to combat Chronic Fatigue Syndrome.

“It was January 22, and we were in a San Diego restaurant called the Yard House,” said Mikovits, who had gone there with fellow scientist Vincent Lombardi to present the results of their research to Frank Ruscetti and Robert Silverman, two of the world’s leading virologists.

“We kept waiting for them to say something,” Mikovits said. “I was nauseous. Bob (Silverman) waited a long a time, and then he looked up and said, ‘Well, this is going to change their world.’”

And it has.