WOO HOO

I have been awarded Social Security Disability. I am eligible immediately for Medicare. The first hurdle toward my reconstructed self has been CLEARED.

I have dreamed of coral reefs two nights in a row now. Time for a new painting, I guess, while I work on the two unfinished.

Such a New Year's gift. The judge wrote her decision BEFORE the Christmas break, only a couple of weeks after the hearing. She was clear and, well, it validated a good deal, this judgment of hers.  I will be able to be financially okay for at least ten months and, hopefully my house will sell before that time is done.

I find myself hoping only to move forward, to not just reconstruct myself as an artist and writer, as one who creates solely what is in my heart and imagination, but to feel that I can tutor as well. I LOVE helping kids unlock their curiosity, finding the words that help them over their own hurdles. It is challenging and fun, too. I am only eight in my brain, so it seems a natural fit, no?

I want the new year to propel me toward simple peace, toward loving my friends better, toward more productivity and choices that keep me on the planet a LONG time.  I want to write the wonder of my life, which was the gift that got me through the pain--the gifts of my mother, my father, and my sister, really. Each had their own whimsy and sense of the absurd that they gave to me.  And the wonder that was my brother Jack's willingness to protect me the best he could from the violence of the other brother. And of our friendship as children and teenagers. In his own disease, he committed one horror, but ONLY one. Mostly, as his birthday draws near,  I remember Robin Hood, calling to me as I hid in the closet. Calling to me when his own torture was over and the monster had wandered off, losing interest in causing him pain. "Maid Marion, Maid Marion. The Sheriff is Gone. It's safe to come out."

And I would untie him and bathe the cuts or the bruises myself. Jack gave me my very life, I think.

It is a new year. Some of the limbo has suddenly ended. I am acutely aware that I was given more gifts than my share, I think. I called my friends who had been long awaiting good news. It took three hours of laughing and crying and just being happy.

I have virtual friends in here, many of whom have reached out to me beyond the blog. I have thanked you all before, but I simply must again. The progress on the book is slow, but it has to be. I have made peace with many things in these months of chaos and pain.

Long ago, in the early days of biofeedback pain therapy, I named the pain Louise. My  middle name and my paternal grandma's name. I may have mentioned this elsewhere. I did this because my grandma taught me many things as a small child, and I adored cooking next to her, eating lunches she made for Jude and me at the Lake on rainy days--we sat at a lace-edged tableclothed card table, on the screened in porch, eating egg salad sandwiches cut on the diagonals with the crusts off, off of special plates with a spot on them for the chocolate milk-filled glasses. And we had M&M's for dessert. Grandma would serve her two little wild girls as if we were grand ladies. It made us giggle, as we sat in overalls and t-shirts, barefoot. Huck Finn girls with Lady Louise. Grandma mourned the demise of whale-bone corsets. She showed me how to dip candles for fun and we churned butter.

But when I hit puberty I learned that Louise was mean to my mother. She spied on us. She was bitter. A vicious gossip sometimes. Louise was not likable, barely lovable, in fact--but she was my grandma, part of my being, part of who I was, part of my life.

The Louise of my body, born of spinal disease, has tamed my tendency to self-destruct. Pain is not something we want. I don't want it.  But it's here. It is part of my life. Louise is here and saved my life and made it hell and I cannot discard it. I must live with it and use my heart and soul to find the ways to use it to FORCE me into going after the dream.

I never gave myself permission to paint, to sing, to write simply what I WANTED. To create from my own music for the sake of creation. Well, I can't do it on deadlines any more. There is no path left for me but to do what I want!

So, tell me. What sort of irony is in that? I mean, talk about a dope learning things the hard way!

I will be getting the first step of financial respite. I have accepted what IS in relation to my spine. I KEEP ON STANDING UP. But I know enough to sit down or lie down when I have to.

It IS a happy new year. Thank you to any of you who keep no looking for me to write. There will be more.
Woo HOO.

Trying to Stay Positive

Sometimes it's hard to stay focused on what is going right; I am not Pollyanna and never was. Yesterday I thought I would be able to switch from my current self-employment medical insurance policy, which costs me about $750/month to a high deductible low premium alternative through the same provider. Nope. I would have to reapply from scratch, in which case I would be automatically denied for one of my pre-existing conditions.

What that condition is is irrelevant. I am faced with the prospect of insurance I cannot afford for a few months, and trying to apply for disability, if the work I just got for the summer does not turn into more regular employment. Or, I could walk away from work and apply for disability. I can be paid a great deal of money per hour and make my own schedule with the work I have, but it does not support me. Neither would disability, but I'd have insurance.

These are horrible choices. Everything in me screams to give working my needed hours per week one last hurrah before I apply for disability, for the third time in my life. I think I would get it. I think I would have been able to get it had I gone for it last winter, rather than try to forge yet another career for myself. Yet, just as I did the first two times I got off disability, I wanted to work, to know I earned my own way, doing what I love and what I'm good at.

I was afraid that I didn't meet my 30 hours a week requirement for my insurance, but my friend reminded me of the work I put into tutoring OUTSIDE of the in-person hours, that painting as an artist is REQUIRED if I want to teach art, and that I put research and time into all my paid writing work as well. She is right. I put in my 30 hours per week. Sometimes I get sick. Don't we all... The difference is that some of those hours have to be on weekends. Some of them are in the wee hours of the morning. I must work around a back that no longer functions, around legs that do not always move on command. I must work around unscheduled, excruciating pain.

It wears on me. I get frustrated. I listen to pundits go on about traveling down the dangerous road to Socialism and I want to throw things. Find me someone without insurance who agrees. Don't tell me that public healthcare will suddenly PUT bureaucrats between me and my doctor, when bureaucrats have been there since 1990 or before. It has done nothing but get worse since Hillary Clinton tried to get us there. I am depressed because I face what millions have had to face already--the threat of bankruptcy if I gamble on not having healthcare coverage.

This is personal and it is public. I have never missed a mortgage payment. Like millions, I would rather work than be on disability. The system is designed to punish those among us who try to work. You are bounced off when you earn far less than a living wage. But I have done that anyway, for the pride of accomplishment.

I am no rocket scientist, nor a saint. I am probably like most of the country. It sounds all cool to be a writer, to be an artist, but it is work--just like everything else, only not quite as physically taxing. Still, when tutoring time comes, the pain has to be ignored. When I teach an art student, I cannot register pain or worry. The focus must be on what the student is doing, on giving each one the experience that she (or he) deserves. Just as each of you must put aside whatever gnaws at you, when it comes time for work.

I love what I do. I wish that more would hire me for what I do, but that's no different from most of the country. We cry out for help; not to bail us out, like the banks and corporations. All we want is the ladder up which we may climb, and maybe a hot meal or two to give us the strength to move on ourselves.

I am terrified; I am not sure how I will survive after six months. It's easy to say, we'll sell the house, but we all know that this isn't always an easy matter. Still, I have a house to sell. I am better off than millions. A lot of good can happen in six months, not just bad. I've had the good happen, not just bad. But I'm not Pollyanna; knowledge of my being better off doesn't keep the fear away. And it is not fear without reason. $10,000 for medications, routine preventive care and premiums? This is more than most can afford, let alone this person. I have not given up, nor given in. I am putting in my time and just deposited money I earned. Again, one of the lucky ones.

Tomorrow will be better, perhaps. Sometimes I just don't feel wise, nor poetic, nor uplifting or uplifted. Some days, I simply feel extraordinarily human. And I pray for the strength and the wisdom to focus on each day, not that scary place "down the road."

The problem with being human is that I never get to be perfect. I hate that!

So maybe I'd best look at the new rose bush in the garden that is in bloom right now. Right below my window, glowing in the rain, now that the peonies have past. Perhaps it would be best if I focus on the breath-taking beauty of rain on my flowers and on how green the lawn is, storing up the lushness against whatever lies ahead.

Tomorrow will be better.