Tuesday, August 30, 2011

Why I Am Writing This Blog

     I haven't written a post in nearly 10 days. I read something that made me stop and question why I was writing a blog. Most bloggers have a particular crusade or business or something they want to teach and that's why they blog – to attempt to make a dent in the public's awareness of their ideas or product or message they are teaching. I read a blog called Courage 2 Create by a young writer, Ollin Morales. His blog, in less than a year, was judged one of the top 10 blogs in the country. There are a lot of blogs – probably hundreds of thousands – and yet his was in the cream of the blog crop. He wrote a post asking other bloggers "Why" they were writing, and encouraged them to answer that question. He told his reasons and they include some very philosophical answers, other than his obvious one, to teach people how to write. I began to question "Why?" and it took me quite awhile to sort through the reasons.
     Before I started the blog, I hedged around for a long time. Stalling and stalling. So I looked at that and asked why I did that. I was scared to put my real thoughts and feelings out there. I've written for years and have published very little. It was the same fear that stopped me. I didn't fear rejection; I feared being read and known.
      I had kept a deep, dark secret for decades. I even kept me from knowing it. I repressed a memory and it became a habit to hide, even from myself. It was difficult to overcome that habit, just as it was hard to confront the secret finally and start untangling that. If anything, I think that is my main reason for writing this blog – to purge myself of this mental habit of hiding me and what I think and feel. It seems strange to say that, but that is the point, yes?
      Another reason I write the blog is to encourage all of you to use writing to unearth anything uncomfortable for you and to heal from it through writing privately or publicly. I stress the importance to student writers to hold their writing private so they can be free to express whatever it is they feel, whether it is hatred, love, desire for revenge, and other feelings that might be judged as anti-social. You need the freedom of your privacy to grow and confront yourself. I started writing daily 20 years ago and never stopped. I didn't intend to write for this long, but it is still working for me. I work out issues in my journal first and then bring them out in the open to the appropriate person. But I also write little stories and poetry in my journal, too. I record those and share them. It is with my journal and my writing, though, that I allow myself to be my most vulnerable.
     With the onset of liver disease I felt I had something I could share with others. I had discovered, or uncovered, that many, many people suffer from a multitude of chronic illnesses. Their daily lives are impinged upon, stressed out by all the different ways that people's lives can be cramped and limited by a daily set of symptoms and remedies. I have learned to live with the fatigue of PSC and make space for it. I know if I have a really good day, the next day I may not repeat that at all but be very tired. I have to give into it. Some days I feel like doing nothing at all, and I have learned to let that be. It goes against my grain. I had a lot of energy before liver disease intervened. Others have lived with their chronic diseases or disabilities since childhood. That would be extremely difficult but I am certain they have learned to both compensate for and accept these constraints. Some of the most inspiring people I've met have chronic and even terminal illnesses, and they have developed an unbelievably happy outlook on life. I'm not one of them. I struggle with depression and go up and down with it. But I write for them with the same compassion as anyone else with a chronic disease or disability.
     That's about the "why" of it for me. It helps to know why I'm writing this blog. Maybe I won't write about going to IKEA for the first time – or I will and I'll add that I felt glad that I made a trip that was  physically hard for me, but that I was so excited about it I ignored my tiredness. I hope you keep reading. And writing your own stories.

Sunday, August 21, 2011

First Trip to IKEA

     I made my first venture into IKEA in Tampa in Ybor City. What an adventure, an experience, a cultural binge. My sister Diane and brother-in-law Jay made the hour-long trek to the store with the goals of introducing me to IKEA and to eat their Swedish meatballs meal in the cafe. It was marked down to $2.99! Lots of other markdowns, too. I fell in love with their shelving and storage ideas. So many! My new bookshelves are already picked out. And I think I can actually buy a bedframe – whoo-hoo! The next trip I make to Denver I will visit their newly opened store – the second largest IKEA in the world. I am IKEA-struck!

    I've been resting and reading and writing today. On Friday Diane, Jay, and I joined Muslim friends and acquaintances for a Ramadan dinner where Pakistani food was featured. Phew! It was hot! But very tasty. I'll go again next weekend and look forward to that.

     The partial colonoscopy and endoscopy on Friday at 6 a.m. went well. The doctor talked to Diane and me afterward, but I remember nothing he said. Except something about "everything was okay." Whatever. I'm tired of thinking about it.

     The two big dogs (standard poodle and black Lab) are in my room, scared of the thunderstorm. Violet deals with them. Right now she's ensconced in the bathroom cabinet which she can handily open and climb into. The dogs are sleeping happily.

     Lots to do next week. Write a newsletter for the Crescent Community Clinic and go to an interview in Crystal River to tutor elementary and middle school kids after school. Have a good week!

     I do have some secret news right now, but hanging onto it for now...it's good.

Friday, August 19, 2011

What I Imagine

     I receive a Daily Writing Prompt every morning from my writing mentor, Cynthia Morris of originalimpulse.com in Denver (though she's in Paris for the next three months); I'm paid up for the year. In an email, she gives all the DWP folks a short phrase to start off a 15-minute freewriting spree. Lately I've written a couple of fiction pieces during that time, and when I wrote down the prompt from Thursday, I knew where I was going with it. Not necessarily how it would end up, but at least how it would start. Here it is.

     Safe at home, he took off all his clothes and stood in front of the mirror to view, all on his own, his surgical scar. He reached up and with his fingers lightly traced the whole scar, starting on the right side. It was long and extensive. It traced a Y on his body from just below his ribcage on one side to deep on his belly in the middle and extended all the way to the other side of his body. There was his belly button still peeking out. When he finished touching the still-red scar, he covered his right side with his right hand above and below the rib cage. The roux-en-y incision was for this, this warmth he felt below, his new healthy liver.

     He didn't know what to think anymore. He'd lived with illness for the past eight years and now, thanks to James (who had a matching scar on his body), he had a chance at life with health and energy and without wondering when the next symptom would begin, when a new infection would put him in the hospital, when were the next round of CT scans, -oscopies and biopsies of all kinds, how fatigued he'd feel, how much he itched. All of that he was still getting used to setting aside in his mind. He didn't have to be sick again. Oh, there was a 35% chance the PSC would return. But right now, this moment and many, many more to follow, he didn't care at all. His life opened to him again.

     He hoped he would be smart this time. "Damn," he thought, " this is like returning from the dead. That's just what it's like." He wanted to call James right now. He knew James wasn't feeling as good as he was physically. He had just taken 60% of James' liver and it would be growing back to 100% very quickly. His new portion would grow to 100%, too.

     He felt huge, he felt full of life, he was ready to jump back into life. His doctor had warned him not to go too far too fast, though. "I feel so tempted, though," he murmured. He felt the chill in his apartment and put some fleece pants and a hoodie on. The incision was still sore but he'd had no complications in the hospital and his skin was healing well, the doctors and nurses had told him. God, nurses and doctors won't be a huge part of my life anymore. Mentally and emotionally, he was making huge adjustments to this almost unimaginable physical transformation.

     He had made it through. He was just now taking it all in. Yes, he needed to call James now. He needed to talk to someone, and this was someone who would always share this experience with him.

Okay, end of story. But it gave me a goal for being. I can handle this positive outcome.

Thursday, August 11, 2011

The Day

     The sun is shining this morning – first time in 3 or 4 days. I lose track of time and days when it rains all day and night. The temperature outside has been cooler and much more bearable to go outside, between the raindrops. But today, back to the reality show called Florida in Summer.

     I have been especially tired the last few days. It's a combination of the rain and not feeling well. I've gotten a lot of reading and napping done. I did go see my gastroenterologist for ongoing problems with my tummy, and he wants to do another colonoscopy and endoscopy next week. I thought one for the year was enough on colonoscopies. But no! My doctors are trying to solve the mystery of my slow leak of blood somewhere and why I feel so crappy. Good, I say! I like doctors who are detectives and care about their patients' well-being.

     I'm leaving the house today. Do something fun. Tomorrow "The Help" will start showing in the local theater and I want to see it this weekend. I read the book and it was compelling, authentic, and well-written. Having spent summers in northern Alabama with my grandparents, I know how the system works and the book helped me understand even more. I'm going to write more poems for the August Postcard Poetry Fest, too. Here's one I wrote last week:

Dividing life by decades and activities
there is a link:  creative action
threads its way in and out, through
and sideways, drops, returns.
But constant.
Driven by dreams.

Have a creative day.

Saturday, August 6, 2011


     I've made some major decisions in the past two days. I am moving back to Denver this fall (before it snows) to proceed with my quest for health and a live donor transplant. Once I finally realized, thanks to my friend Maureen's simple, clear statement, that my number one priority was my health, I lined up everything behind that. I know I want whatever surgery I have done (live donor or The Wait) at the University of Colorado Hospital where I have a superb, supportive, positive medical team. My real home is Denver, though I will miss the warm tropical weather in winter in Florida. And the friends I've made here and my family, not to mention the reconnections with people I've known since kindergarten, for heaven's sake! I will be able to return for doses of sunshine and warmth in mid-winter.
     I will be sending out a plea to friends, acquaintances and family members for a potential live donor. I've written the email. I want a few friends to read it and help me tweak it before I send it. If you want to receive a copy of the email, please send me your email in a message on Facebook.
     I am having some ongoing health problems now, but I'm also exercising every day now and will be joining the YMCA this weekend so I can start walking indoors. I want to be as ready as I can for surgery.
     When I told my sister Diane I was moving back to Denver, she was happy for me and, as usual, had some excellent ideas for me. I'll be working on finding a place I can afford to rent. My brother-in-law Jay was sad I was leaving. He and I have spent lots of time at Starbucks discussing politics and I'll have to call him from Starbucks in Denver to continue that. I worked on Diane's campaign for state representative last year and have become quite the political buff now.
     This is a rather disjointed post, but I'm too excited to keep my mind in one place for very long! Be well and I will be writing soon.

Wednesday, August 3, 2011

Moving Onward, Upward

     I unclogged my brain and I'm ready to take some important steps now. Unclogging usually comes to me through writing and action, and I've done both. I am going to actively seek a living donor for my liver transplant.
     I belong to a PSC support group online (remember? primary sclerosing cholangitis - PSC) and there was a letter last week from a member who had decided several years back not to go for transplant. She's in hospice now and very happy with her decision and current situation. I thought about that a lot.
     It finally came down to this: I'm a fighter and I've always believed I would live a very long life. I've always believed that life was meant to be happy and productive and, for me, creative. I didn't consider this woman's alternative for very long. It works for her, but it would not ever work for me. I'm also a wimp and hate pain and discomfort and do everything I can to avoid it! I watched my brother die of melanoma 10 years ago, and he was the same way, a fighter. And he lived for 5 years after diagnosis, a record for most melanoma patients. He was injecting curative medicines during the last week he was alive. A fighter. So maybe it's genetic. Dunno, but I've got that spirit, too.
     I have a lot of preparation before I'm ready for surgery – getting documents revised or made, checking prices of anti-rejection medications, finding caregivers for post-surgery, and so on. The preparing energizes me. I'm acting on my own behalf. And that's the best thing all of us can do for ourselves. No one else can, or is responsible to, meet our needs and discover our own heart's desires.
     If you have any ideas for me, please pass them along. I'll keep you posted on my progress!