Month: January 2016

Posted on in Uncategorized

A third into my book I have to ask: what am I writing about?

Writing, writing, writing… wait. What am I writing? What is the point? Who am I writing this for? Why am I writing this book?

Ak!

I was doing really well for several weeks, writing every moment I had in bursts of focused energy. The first section of my book finished, six lovely chapters focused on the first few years of my daughter’s life. And then…

The focus vanished. The doubts set in.

One complaint about “special needs memoirs” is how parents take over their children’s stories and make it all about them. The child is lost under the parent’s struggle. I don’t want to fall into that trap. My daughter is the one who struggles daily with her disabilities. This is her life and I am telling her story in the hope it will help others. But am I actually including her in the storytelling, or just rehashing my own fears and triumphs?

I don’t know.

So now here I am, staring at my screen and the 100 pages I’ve already written, unsure whether or not to continue. Do I stop? Start over? Keep going? Chuck the whole book and go back to writing plays? Am I able to write the book I envision? Perhaps I don’t have the skill. But I have to try.

I’ll follow my own advice and go back to that basic question: who am I writing this for?

Answer: Parents of children with disabilities.

Why am I writing it?

Answer: Because I want to help them find joy raising their children and not be overwhelmed with grief and fear.

How will I do that?

Answer: I don’t know.

Any ideas?

 

 

Posted on in music, video

Goodbye David Bowie. I will always love your music.

Christine and I were best friends our freshman year in high school, and one day she played a David Bowie record for me. Of course I knew who David Bowie was, who hadn’t heard his music in 1982? But I had never actually listened to his music until that day when I was 15, lying on the floor of my friend’s bedroom. Her room was decorated with Bowie posters and she explained why she loved him so much. After then, I did too.

Here is one song I fell in love with. His voice is brilliant.

Before then, I knew David Bowie as Ziggy Stardust, a bewitching gender-bending artist I listened to as a kid in the 1970’s.

David Bowie’s artistry, voice, creativity and innovation earned my respect. He stood by his work and continued to push the boundaries of art, gender, and music. Never one to just settle on his laurels and make cash, as some musicians do when they reach a certain level of “legend,” David Bowie continued to create art. He was one of the greatest artists of the 20th and early 21st Centuries.

Thank you Mr. Bowie for sharing your genius. And thank you Christine for sharing his music with me.

I wish you had more time, David Bowie. Imagine what you could have created.

I hate cancer.

Posted on in caregiving, health, life

Permission to Rest More

I slept this week. Every chance I got, I curled up under my warm blankets in my comfortable, old fashioned iron bed and willed myself to dream. Dishes piled up, laundry didn’t get done, and writing ceased. Instead, I snored.

After weeks of illness, the holidays, my daughter out of school and interacting with lots of people, my cold turned into a sinus infection. My doctor prescribed antibiotics and I reluctantly filled the prescription. But rather than taking one when I got home, I set the bottle of pills on my bedside table and took a nap. When I woke up, I asked, “What if I gave myself an entire week to sleep as much as I want? Will I get better on my own?” Deciding to find out, I set the meds aside. For one full week, I would drink tea and sleep.

Instantly I felt guilty. Shouldn’t I just take the meds and get better? I had a thousand things to do and a book to write and Christmas decorations all over my house. If I took antibiotics I’d probably be better in two days instead of a week. Giving a week to rest is an indulgence I couldn’t afford.

Or could I? My daughter went back to school, and although it’s true I work hard as her caregiver, there were several hours each day I could spend in bed. Besides, my body ached with fatigue and my lungs burned from coughing. My head pounded. Whether I wanted to accept it or not, I was sick and needed rest. Why not rest fully?

Grabbing my iPad, I climbed back into bed and watched Poirot Murder Mysteries on Netflix.

A funny thing happened over five days. Not only did my cough slowly improve and the pressure in my head subside, but my stress diminished. My cuticles healed because I wasn’t biting them so much. My eyes weren’t so dry from staring at a computer screen all day. When the phone rang, I didn’t jump and when my daughter needed me I had more patience. Not only did my body need rest to recover from illness, my body seemed to need rest to recover from 2015.

My head feels better now, but I might have an infection. I’ll give it time. From what I’ve read, antibiotics only cure sinus infections about half the time, so resting may be just as effective. But rather than killing off all the bacteria in my body and starting over, I gave my body a chance to kill bad bugs on its own. We’ll see if I still need antibiotics.

Rest is a luxury we can all use. I know I’m lucky to have the time; not everyone can ignore their work for a week. Realizing this, I don’t take rest for granted. It is a gift my daughter has given me. It’s challenging caring for a person with disabilities, but there are hidden gems in the work.

Next week I’ll jump back into my regular schedule of teaching, writing, running my press and managing the chaos. I’ll battle Social Security to make sure my girl has everything she needs. But right now, I’m going back to bed with a good book. Ahhhhh, heaven.

Posted on in life, Uncategorized

This writer is tired of epic years.

As a writer, I should enjoy adventure, drama and changes. Good stories come from epic years, those years in your life when everything falls apart and is rebuilt, transformed, and reborn. Pick up any novel and there will be chapter after chapter of drama and cliffhangers.

Living an epic isn’t as much fun as writing one.

2015 was one of those years when I wondered if I actually was a character in a book. Was I up a tree having rocks thrown at me by an invisible writer? I had adventures, like going to New Orleans during Mardi Gras (talk about adventures!). I had bitter-sweet moments, such as when my daughter graduated high school in June. And there was great drama as my husband and I faced death with his cancer diagnosis. We laughed, we drank, we cried and fought and dreamed and hoped. I learned more about my self and how resilient I can be in one year than I had learned in 5.

This writer is overflowing with stories. I’d like 2016 to be a quieter year so I can write them.

From talking to friends and family, I am certainly not alone. 2015 tested everyone I know, some in just as epic ways as I. Illness, accidents, divorces and deaths happened with such frequency we’re all jittery from shock. Four people in my immediate circle of friends and family passed this year, including my own grandfather and my daughter’s grandfather. Cancer popped up in two acquaintances, and I had my own cancer scare when a tumor was removed from my forehead; Thankfully it wasn’t aggressive, but it was malignant.

I am sick of cancer and illness. I want my loved ones to be healthy this year. I want relationships to stabilize and love to grow. I want people to calm down and stop reacting in fear and anger. I want calm so we can heal from a too epic year.

Happy New Year everyone. May 2016 allow you the time to breath.