The Write Life

The one thing I’ve done consistently throughout my life is write.  It has always been a source of pleasure as well as giving me a sense of accomplishment greater than anything else I’ve done.  There are formulas you can follow that will  insure you some measure of financial success as a writer, but most successful writers don’t follow any one else’s rules.  Creativity can be courted, pursued, even seduced but it cannot be lashed to a wagon to  transport you reliably through your journey in life.  Neither can it be reduced to a set of calculations that when worked correctly give you a great novel.  Writing is art, and like any art form, it is capricious, elusive, and maddening.

I’ve gone through orientation to a new job the past two weeks.  Starting today, I am supposed to be putting in another five days of learning how to do it correctly.  As any of you who have read my blog posts know, my life is complicated to say the least.  Constant vigilance is required to make sure my son with Ataxia-Telangiectasia (www.atcp.org) stays healthy, and even then we cannot completely protect his lungs.  We have to constantly weigh quality of life against quantity of life, and I honestly don’t know how to work that out to ensure his longevity.  He’s 15-years-old.  Can you imagine telling a young man of that age, “Honey, I’m sorry but if you want to live as long as possible, you have to stop eating and drinking.  Oh, and even then I can’t guarantee how many extra days or weeks that will give you before this condition you have takes your life.”  Of course you could find other ways to put it, and I’ll admit to wanting to do that at times, but how can I selfishly put my wish to have him here with me above his desire to be as “normal” as possible?  He gets the most time to “hang-out” with his friends at lunch.  Yes, he could sit there with his pals and not eat, but he likes food and sharing that with others is basic to most human lives.  Even his pulmonologist doesn’t suggest taking that away from him.

My husband is heroic in taking over for me when I’m at work, but he has limits (as we all do).  I find it a cruel irony that health insurance would cover having a nurse come in to care for our son, but won’t pay me (a licensed RN, with a Bachelor’s Degree in Nursing) to do the same thing.  I cannot find a nursing job that fits with my son’s hours so that I can work enough to provide health insurance for our family, and take care of him as well.  All of this is secondary to the fact that I’d rather be writing.  I wonder how many authors would have been able to succeed financially without a working spouse (regardless of gender) or the good fortune to live in a country that provides health insurance to its’ citizens as a basic human right?

I wish that our President had skipped the “Obama-care” and gone right to a single payer system.  I appreciate the benefits he’s been able to add, but having a single payer system would eliminate many of the issues that are coming up now, like employers cutting hours or adding surcharges to avoid paying for their employees to have health insurance.  I don’t know what the answer is in our situation.  All I know is that I can’t provide the best care to others when I’m constantly worrying about my husband and children the whole time I’m at work.  Especially since I’d really rather be writing.  I would love to hear how other writer’s and/or parents of “special children” have been able to work this out.

Namaste’.