Month: May 2015

Posted on in birthdays, mitochondrial disease

My daughter turned 20, which wasn’t supposed to happen.

This week was my daughter’s 20th birthday, which when you’re battling Mitochondrial Disease, is a birthday hard won. My daughter, who I call Queen Teen (but can I still call her that if she’s not a teen anymore?), is a beautiful, friendly, stubborn young woman who has fought every single day to keep walking and keep learning. Despite being doubly impacted with blindness and deafness she has learned to read words and understand sign language. Doctors told us she wouldn’t make it to her teens. When she did she was diagnosed with “Mito” and given five more years to live. That was three years ago.

Right now, my daughter is singing “Let’s go fly a kite” and “Take me out to the Ball Game” at the top of her lungs. It’s horribly off key, but I love every note. I don’t know how long we will have together. Two years? Ten? You stop worrying about it after a while and learn to live in the present. “Be here now” is more than just a philosophy when your child has a life threatening illness, it is the golden rule to live by.

20. Who will she become now that she is grown? What will she want to do? I love watching and learning more about her.

Posted on in author, rough draft, writers, writing

Writing is action, and my body feels it.

After several months of crazy making stress and poor sleep (thank you cancer!), I finally had a few hours to concentrate on writing. I had outlined this new project, but had zero time to concentrate and write actual scenes. But yesterday, I wrote for two and a half glorious, painful, difficult, wonderful hours. My hands cramped, my vision blurred, and my stomach knotted from all that coffee, but in the end, I had 750 lovely words.

Yes, 750 words in 2 and a half hours. Not exactly what you’d call productivity, but still… I wrote!

I wrote actual words on my lap top and filled in the rough draft of chapter one of a brand new project. My brain strained with the effort, shaking off apathy and searching for writing skills I’d allowed to atrophy. With each word I typed, I felt more myself. A writer.

But after 2 and a half hours my hands ached and I was forced to stop. That night I had pain in my arms and the following day pain in my shoulders. I’m not used to sitting still, concentrating hard, for that length of time. You might think writing is only a cerebral activity, but writing includes arm muscles, hand muscles, straining eyes and a numb butt. Just like any activity, you have to work up to the marathon hours.

I’m eager to lock myself away somewhere for several days and write. First, I need to work my body up to that much typing and writing. Today, i am in training. I’m writing the rough draft of my new novel. Painful, awful… even the writing is strained. In a few months, I’ll be ready to put in hours each day on the first draft. That is my favorite time. Writing hour after hour until I enter the zone. That’s what I call bliss.

Posted on in life, opinion

Nurses: stuck between patient’s needs and doctor’s demands.

i am sitting next to my husband’s hospital bed watching his nurse try to take care of him. He’s being treated for cancer with Brachytherapy and must in the hospital for two days. Since his arrival yesterday, his pain has been awful. The nurses desperately paged various doctors to authorize more medication, but they could only decrease the pain, not stop it. 

Today his day nurse has been doing the same thing. 

The Resident came and went. A Nurse Practitioner came and went. Promises were made. Meds were increased a little. The Pain Management Team was supposed to be here over an hour ago. The nurse keeps calling. And in between calls she takes care of him. I can see the frustration on her face. 

I don’t know who to yell at, so I keep asking the nurse when the doctor will come. “15 minutes,” she says. The doctor doesn’t come. She pages again. “15 minutes,” she tells me again. He doesn’t come. After an hour I stop asking. She’s as upset as I am.

Nursing must be one of the hardest jobs on the planet. They take care of frightened people in pain while dealing with frightened family members and disappearing doctors. They must answer questions they don’t have the answers to and handle angry outbursts when the doctor doesn’t show up. And if they make a mistake, they could create more suffering for their patients.

Nurses work in the mine field between the needs of their patients and the demands of the doctors.

Throw in hospital regulations and redundant paperwork and it’s a miracle your nurse doesn’t go crazy. Maybe she does, but it’s part of her training to hide it well.

Thank you nurses at UCSF Mission Bay. Thank you nurses everywhere.

Posted on in memoir

If you think your memoir doesn’t need a plot, you’re making a big mistake.

Memoir is a story about someone’s life, right? Sure, if you want it to be boring.

A good memoir is not just a series of events shared chronologically. It is a tale with heroes, villains, conflict, subtext, and a great plot to keep the pages turning. Writing events down chronologically might be fine for a history book or genealogy, but if you want to engage your readers, you need to think about action. One event in a life has a direct impact on the next event. Everything you do effects the people around you and how your life develops.

A scene is action. Plot is a series of actions. When you outline your memoir, think about the actions that shaped your life and made you who you are.

Perhaps you were born in Cleveland, then you moved to LA when you were 10. Those are facts, and you might want to mention them briefly as backstory. Unless Cleveland essentially shaped who you are, or the move created a lot of conflict, none of that matters to your plot, and especially not to your reader. Mention it, and then get back to the story.

Or lets say you longed to get back to Cleveland and hated LA and your story is about moving back to where you feel you belong. Then be sure and add in every detail about Cleveland and why it meant so much to you.

Think about the person you know who comes to all the parties and becomes the center of attention because she tells the best stories. People listen attentively as this person weaves a story about something probably mundane, like a trip to the grocery store. It’s the way she tells how she went to the market for a quart of milk. What is she doing that makes her trips to get milk sound so much more interesting than your trips to the store?

Or what about the elderly uncle who knows everything about family history, but instead of just boring you with facts and names, he makes you feel like you know the people he remembers? What makes his stories about people who died before you were born so captivating?

It all goes back to knowing what your book is about. If you know that, you can create a strong plot that will make readers want to know more about you. Don’t make the mistake of sticking to a linear format. Writing a memoir is more than creating a calendar, it is writing about the meaning of life.

Posted on in WriteClub, writing

Friday Night Writes

There’s a group on Twitter called Write Club (#writeclub), organized by Friday Night Writes (@FridayNightWrites). It’s helped me get a lot of writing done. There’s something about sitting at your computer writing in a room all alone while knowing that across the “Twitterverse” others are doing the exact same thing. It feels good, like your writing group is a thousand people and instead of critiquing each other’s work, you’re working together and cheering each other on. Write! Keep going! Get your word count up! You can do it! The writing sprints are 30 minutes long with a 10 minute break during which we “put down our pens” and report our word count. Of course it’s the honor system, because there’s no way to know if the guy reporting 800 words is telling the truth. He could be. I once did a writing sprint that produced over 700 words in 30 minutes. Not sure how many were actually any good, though. If your lounging in your PJ’s some Friday night with nothing to do but watch reruns of “Friends”, hop over to Twitter and get some writing in. A cocktail while you write is highly recommended. In fact, I wonder if it would be fun to take my laptop to the bar with WiFi on a Friday night and write while drinking a martini? Who wants to join me?