...some call It God. Sometimes I do, too, but mostly I do not bother with a name. For expedience, I will say God, but that does not mean "the Father" to me. It simply means whatever it is that we find when there are no people, there is no money, when we are utterly alone, but search and find some strength that seems larger than our own.
In my adult life there were two times between 28 and 42 when I was acutely aware that I was calling on something that did not feel like only me. The first was after I'd been as far from any church as I could be for about more than a decade. Like so many children of the sixties, free love and "finding myself" were my religion from college through most of my twenties. At least this is what I told myself. When I fell in love with Matt, I knew that I was running from some demon I could not name. When he used me and threw me away, I cycled into self-destruction and running like hell from those dark places I could not yet quite touch, could not bear seeing. My dreams were peopled by a faceless man who touched. A laugh that was familiar, but which disappeared just as the face began to come into focus and I would awaken. I was not yet ready to remember my brother. Or my grandfather. Or those times I'd worked so hard to bury beneath ten tons of minutely detailed memory of everything but...
A funny thing happened one day when I was 27. It was February. And it was six years before I remembered anything of the abuse of my childhood. That fact is significant.
Chaos: My Family's Special Friend
Ten days before this my father had gall bladder surgery, in the days before lasers. While he was in surgery, I got a call from brother Jim's wife, Sue, that he had been in a severe car crash with another woman. He was in a coma, not expected to live. She was in shock and angry, but she was clear in her message to me. "He's a bastard but I'm not wanting him to die, and I will stick with him while he recovers. I'm his wife. He's my kids' dad. I just--"
"Sue, no one can or should ask for more. I think it's good for you to do this much. You must be in hell."
I found out that she had no money for bills, let alone his hospital stay. Their insurance was minimal, through the car insurance mostly. I went to my mother's but, of course, she was drunk and incoherent, so I called for the siblings. We split things up: Jean Ellen got a loan from her credit union, Jack would drive to New Hampshire to see to business there, and I would deal with telling Mom, when she was conscious, about Jim and tell Dad.
Only Dad had complications and went directly to ICU. It was fifty-fifty whether he would make it, but I knew I had to tell him. He was not in a coma. Mom, however, was semi-comatose throughout. How nice for her. I piled her into the car, propped her in the corner of Dad's cubicle and told him. It was only the second time I watched him cry. Then he said a curious thing, "If it makes me a bad father, so be it, but on some level, I almost wish he would just go. Oh, God, what kind of man am I?"
Something back in the recesses of the dark in me said, "HUMAN." I shoved the thought out, however, and said, "Well, Dad, this really isn't the way for him to go out, for Sue's sake. And sometimes near death experiences change people."
This seemed to help him.
It was five days before Daddy was put in his own room. He had spiked a terrible fever and was still on massive antibiotics, still with a fever over 101. Jim was still in his coma. On the sixth day he came out of his coma, but he, too, had a massive infection from a wound on his leg. They were now hoping to save his foot.
Celebration and Black Ice
In the meantime, I had been awaiting news from B. U., about my application to the Graduate School of Education, because I wanted to get a terminal degree in Adult Education. Good things come all at once...
I got a call from Jack that Jim would make it and keep his foot, then a call from the hospital that Dad would be okay, and a letter of acceptance from B.U. the next morning, I could not wait to go to the hospital with all the news. It was February, warm and foggy. I hit the top stair to the driveway, and a patch of black ice. I fell down six stairs on my back, and when I hit bottom, I knew I was in trouble.
I made it to the hospital to tell Dad the good news, leaving out graduate school. I went to the ER from his room.
I was scheduled for an emergency myelogram. It was 1980, just before MRI's. Two ruptured disks and no disk at all at the base of my spine. I knew I'd had problems, but this finished me off. I was immediately put into a body cast. As luck would have it, the ER doctor that day was my orthopedic surgeon and he said, "My dear, you will need surgery. This finished off our work I'm afraid." I had had two months of PT and was exercising regularly up to this point.
Fighting to Live, Praying to Walk
Jim made it; his marriage didn't. Dad made it; Mom drank to celebrate. Business as usual.
Except for me. The six months between the fall and my first surgery resembled my clinging to the side of a cliff, more than anything.
It was a terrifyingly dark time. It was more a dance to escape my own past, the memories that haunted me, but which I was not prepared to face. When Jim was nearly dead, I was horrified at my own initial thought, 'Good. Die, damn you.' So I ran to any man who looked my way, in a frenzy of dangerous sexual behavior.
I was in a body cast for a month and lost weight. I kept losing weight because I could not keep food down. I thought it was stress; I was mistaken. The thinner I got, naturally, the more other women told me how great I looked. I did not. You could see every rib and every vertebrae. I could pour water into the gully of my collar bone. I photographed great, though, because of the gauntness of my face. I did not miss work; I did not miss rehearsals for a play. I pretended that I would be fine.
By June, my legs began to collapse and the headaches started. Every day, on my way into Hartford, I'd pull off to the side to quickly vomit, then go to work. Once there, I'd take the migraine medication and try not to pass out. Sometimes my legs would collapse in the stacks, but I was so expert at pulling myself up onto a book truck or the shelves that sometimes no one registered I'd fallen.
I had had to turn down the opportunity to go to B.U. Even I had to face that particular truth; I never told my family that I was even accepted. Everyone was so busy with Dad and Jim, with Jim's divorce, that I did not care to worry them, and what was the point of talking about a program I could no longer join?
So I buried my pain in men. For an hour, maybe two, I would be beautiful and wanted, then I would leave. I did not care, I thought, whether I lived or died.
Facing Fear, Finding a Toe Hold
Until I saw the doctor and told him about my legs. He looked at me hard and said, "For how long has this been happening?"
"A month, maybe two... I am not sure." I looked at the floor. It was late July.
While I was there, he scheduled a myelogram and surgery. The disk had fragmented into the spinal canal and pieces were impinging on my spinal cord and the nerve root, both. I was scheduled for emergency surgery two weeks from that day.
I was told that I could die or be paralyzed from what was happening.
All I registered that day was, "What do you know? I don't want to die after all. I really don't." My body was numb, but at last my mind and my heart had come to life. For the first time in more than six months, I cried.
What followed in the next five years were eight back operations that entailed seven months of hospitalizations, nine months in various body casts, 37 blood transfusions (before AIDS testing), traction, seven months of physical therapy; I also got married and was instant mother to two half-grown children. I had to be brought back--whatever that means--during or after surgery eleven times. And I had ten days in a Striker bed. You would think it would all be a blur, but it is not. I remember details of almost every stay, and what was done. I remember the smells, the sounds, the nurses, the pain.
But that first operation was the most dangerous. It nearly killed me, but when I finally left the hospital three weeks later, I knew that this back of mine had saved my life. I had something tangible to fight, and learned that I wanted to fight. It was not until three surgeries later, however, that I understood what it really was to feel alone, and that I found that there was something beyond my stubbornness on which I could draw,
And it was then that at last, I rediscovered Grace in my life.
*****
Off for vacation for a few days. Have a wonderful weekend, one and all.
Accidental Spring
"Accidental Spring" This began as the background for painting other papers, but became something else!
Showing posts with label back pain. Show all posts
Showing posts with label back pain. Show all posts
Friday, March 23, 2012
Friday, March 18, 2011
What now you may ask?
Water, water everwhere, nor any drop to drink.
Water, water everywhere, and MY how it doth stink!
Yes, dear readers, I have been wet vaccing in the basement, three times a day. Ah, the glamor of it all. But the song "Workin' in a Coal mine, goin' down down down" Keeps floating through my brain, which sort of takes the onus off.
And moving furniture to polish my wood floors and my kitchen floor. Climbing on stools, reaching above my head to get books off the shelves so that I could Murphy's oil then lemon oil all the wood. Hey. I mop n glo'ed with a TOOTH Brush to get around the wood of the banisters. Somewhere in the last two weeks, the nasty little demon in charge of turning perfectly sloppy women into anal housebodies who walk around with Swiffers singing, "Wake up your room!" (Sorry to you who are younger, it's a line from a simply horrid commercial from the sixties where a bedazzled housewife sang as she dusted, "Wake up your room, wake up your room, with natural wood-scent Pledge.)
Anyway, this disgusting demon told me that I must do the corners. That I must be on my knees getting that waxy build up from the floor, that nameless gray goop that accumulates. And I did.
AND rode my exercise bike.
I would sit at the computer to write and my mind quite simply went, "Duh? Arrr?" Think confused Scooby Doo. Then I had to tutor Adam about rhetorical devices in two essays, by Elie Weisel and Alexander Solzhenitzen. And then come home early from his house to wet vac the basement again.
My house is once again officially on the market. I look over the last year and realize that nothing has changed except me. My financial situation remains precarious, but the fight for social security is done. That brought me a peace I cannot measure. I go through weeks like the last two and continue to accomplish what should be impossible for my back to bear, but I do it... and my back cannot bear it so I pay dearly.
However, then I come out of the payback and there is humor. THAT is the change. I rediscovered my sense of the absurd and my sense of proportion and perspective. And somewhere or other, I've lost the ability to worry about it all. A loss for which I am grateful beyond words.
Truth be told, the last two weeks have been simply horrible. I could not walk yesterday more than about five steps at a time. When I say I could not walk, it is a literal comment. I had to hold onto things or I collapsed. The pain has been beyond my ability to cope at times. I could not stand up straight no matter HOW I tried.
I finally took this as a sign that perhaps it was time to lie down, although I did not read the sign until I'd been up stumbling around with a Swiffer and my can of Pledge for an hour. There is no twelve-step program for stupidity. Not really. I've been looking... obsessively of course.
All I wanted to do was write a little story about my travels to Red Bank. My part two of what could be a freaking novelette, probably. But those words do not come just now. Too much sludge and not enough metaphor just now.
Hey, but I DO remember the winter after my husband walked out. It was the only other time my basement flooded. Only then it was so bad that we had lovely little waterfalls falling out of the fireplace, glistening in the light. The water was deep enough so you could hear the splash. I had thought of turning the heat off altogether and perhaps having an indoor rink. I had a sign on my front door that said, "Welcome to Cliffwood Falls." (Cliffwood Drive is the street.)
I was determined to succeed, however. I had survived the hundred year old oak falling in the middle of the night three days after Mark left. I didn't ask for his help then. No. I was mighty. I would handle this on my own. A shop vac. I can just vacuum this stuff right up. I'll get me one of them.
Now, ya gotta understand that on those dumb tests where they determine what your aptitudes are, I was in the bottom twelfth percentile for mechanical ability. When I went off to college it took me FIFTEEN minutes of experimentation before I gave up and asked someone to show me how to use one o' them old-fashioned hand held silver can openers. To this day, it takes me two tries to use my nice slick Scandinavian black hand-held can opener to remember how it works.
So for me to go to Sears and buy myself a shop vac, come home and put it together all by myself? Please. Applaud. Bow before me. I did it. I READ the directions and laid out all the little pieces and put it together without a hitch. I broke for dinner, but had it done before the eleven o'clock news. And it WORKED. And I think I had to put together at least eighteen, maybe even TWENTY moving parts.
After the fourth day of using the thing three times a day, and hauling it out the garage to dump it, Mark happened to call and ask whether I could use some help that night. His mom had told him about the water. I was going to say "no" but for once in my life, realized that pride is just, plain, stupidity sometimes. He came over and went downstairs and did a long stint. I went down after an hour to ask if he wanted some supper, and he was busy swearing at the machine because he could not move it over its own wire.
I said, "Mark, it's super full and is sloshing out the top, you gotta be caref--"
He tipped over the sixty gallons and it flew all over the only parts of the carpet that had remained dry. Black, stinky water. It also got me in the face as well. I started to sing, "Old black water, keep on rollin'." And then I wailed, "Well keep on Shinin' your light, gonna make EVERYTHING, pretty mama, gonna make everything all right. And I ain't got no worries, cause I ain't in no hurry... at all!" (Doobie Brothers, some time in the early seventies)
Mark looked at me, silent, my giraffe of an ex husband, a hint of a smirk playing at the corners of his straight lips. "Well. My work here is done. I always have known JUST what to do to make things right. Care to throw the Hoover upright Beats as it Sweeps at my head again?"
The memory of my heaving that at his head, there in that very spot in the basement, when I got him to admit he was NOT considering staying but had been waiting to leave until the kids left... the memory of my having the strength to do it, the look of surprise on his face.
The laughter came, to the point where we sat on the steps and held one another until the tears came. At which point I got up and said, "NO MORE WATER!"
***
And these are the things that leap and cavort through my brain as I slog on through this business of "getting the house ready to show."
Well. Except, perhaps, a brain capable of coherent thought. I wrote tonight because I was sick of NOT writing. It's what I do, how I enter the world. And bad or good, specious or profound, I write what happens in my little teeny world. The sign that last year is behind me for real is the fact that I am willing to blither publicly, to share how I DO process this life.
Today I move through sludge. Tomorrow I fly. One day I throw a vacuum cleaner at my ex's head. Another I stick a fondu fork through my hand. One never knows.
***
That's what I loved about the Jersey shore. You could run into someone who looked like Burt Lancaster one day and sounded like a dockworker, and then be approached by someone who clearly was stuck in "Stayin' Alive," wearing speedos, gold chains that glistened here and there, lost in the fur blanket of his chest, with the short-sleeved shirt buttoned by one button, straining over the not-twenty-year-old belly ... the man who would walk the forty yards to where you had clearly removed yourself to draw and sit on the rocks, who huffed and puffed his way there to say, "Youse look like ya need company. I got a porsche wit cher name on it."
And I would think, "Why me? Am I wearing that sign again?"
I just wanted to write about my adventures, but nope. For now, my life is wet vaccs, mops, and chasing dust rhinos around my house.
Just wanted you all to know I am here and I Miss my blogging and others' blogging. Sometimes real life--SURREAL life will intrude.
Forgive this entry, if you can. Perhaps tomorrow I can write about the forking incident--although, perhaps I already have. I'll check.
If you celebrated St. Patrick's Day, I hope you had fun. If you did not, I hope the same. For now? I think Jeannette needs to sleep. Perhaps, in the night, the tooth fairy will, since she has no further business with me, find my brain and leave it under my pillow. One can hope.
Water, water everywhere, and MY how it doth stink!
Yes, dear readers, I have been wet vaccing in the basement, three times a day. Ah, the glamor of it all. But the song "Workin' in a Coal mine, goin' down down down" Keeps floating through my brain, which sort of takes the onus off.
And moving furniture to polish my wood floors and my kitchen floor. Climbing on stools, reaching above my head to get books off the shelves so that I could Murphy's oil then lemon oil all the wood. Hey. I mop n glo'ed with a TOOTH Brush to get around the wood of the banisters. Somewhere in the last two weeks, the nasty little demon in charge of turning perfectly sloppy women into anal housebodies who walk around with Swiffers singing, "Wake up your room!" (Sorry to you who are younger, it's a line from a simply horrid commercial from the sixties where a bedazzled housewife sang as she dusted, "Wake up your room, wake up your room, with natural wood-scent Pledge.)
Anyway, this disgusting demon told me that I must do the corners. That I must be on my knees getting that waxy build up from the floor, that nameless gray goop that accumulates. And I did.
AND rode my exercise bike.
I would sit at the computer to write and my mind quite simply went, "Duh? Arrr?" Think confused Scooby Doo. Then I had to tutor Adam about rhetorical devices in two essays, by Elie Weisel and Alexander Solzhenitzen. And then come home early from his house to wet vac the basement again.
My house is once again officially on the market. I look over the last year and realize that nothing has changed except me. My financial situation remains precarious, but the fight for social security is done. That brought me a peace I cannot measure. I go through weeks like the last two and continue to accomplish what should be impossible for my back to bear, but I do it... and my back cannot bear it so I pay dearly.
However, then I come out of the payback and there is humor. THAT is the change. I rediscovered my sense of the absurd and my sense of proportion and perspective. And somewhere or other, I've lost the ability to worry about it all. A loss for which I am grateful beyond words.
Truth be told, the last two weeks have been simply horrible. I could not walk yesterday more than about five steps at a time. When I say I could not walk, it is a literal comment. I had to hold onto things or I collapsed. The pain has been beyond my ability to cope at times. I could not stand up straight no matter HOW I tried.
I finally took this as a sign that perhaps it was time to lie down, although I did not read the sign until I'd been up stumbling around with a Swiffer and my can of Pledge for an hour. There is no twelve-step program for stupidity. Not really. I've been looking... obsessively of course.
All I wanted to do was write a little story about my travels to Red Bank. My part two of what could be a freaking novelette, probably. But those words do not come just now. Too much sludge and not enough metaphor just now.
Hey, but I DO remember the winter after my husband walked out. It was the only other time my basement flooded. Only then it was so bad that we had lovely little waterfalls falling out of the fireplace, glistening in the light. The water was deep enough so you could hear the splash. I had thought of turning the heat off altogether and perhaps having an indoor rink. I had a sign on my front door that said, "Welcome to Cliffwood Falls." (Cliffwood Drive is the street.)
I was determined to succeed, however. I had survived the hundred year old oak falling in the middle of the night three days after Mark left. I didn't ask for his help then. No. I was mighty. I would handle this on my own. A shop vac. I can just vacuum this stuff right up. I'll get me one of them.
Now, ya gotta understand that on those dumb tests where they determine what your aptitudes are, I was in the bottom twelfth percentile for mechanical ability. When I went off to college it took me FIFTEEN minutes of experimentation before I gave up and asked someone to show me how to use one o' them old-fashioned hand held silver can openers. To this day, it takes me two tries to use my nice slick Scandinavian black hand-held can opener to remember how it works.
So for me to go to Sears and buy myself a shop vac, come home and put it together all by myself? Please. Applaud. Bow before me. I did it. I READ the directions and laid out all the little pieces and put it together without a hitch. I broke for dinner, but had it done before the eleven o'clock news. And it WORKED. And I think I had to put together at least eighteen, maybe even TWENTY moving parts.
After the fourth day of using the thing three times a day, and hauling it out the garage to dump it, Mark happened to call and ask whether I could use some help that night. His mom had told him about the water. I was going to say "no" but for once in my life, realized that pride is just, plain, stupidity sometimes. He came over and went downstairs and did a long stint. I went down after an hour to ask if he wanted some supper, and he was busy swearing at the machine because he could not move it over its own wire.
I said, "Mark, it's super full and is sloshing out the top, you gotta be caref--"
He tipped over the sixty gallons and it flew all over the only parts of the carpet that had remained dry. Black, stinky water. It also got me in the face as well. I started to sing, "Old black water, keep on rollin'." And then I wailed, "Well keep on Shinin' your light, gonna make EVERYTHING, pretty mama, gonna make everything all right. And I ain't got no worries, cause I ain't in no hurry... at all!" (Doobie Brothers, some time in the early seventies)
Mark looked at me, silent, my giraffe of an ex husband, a hint of a smirk playing at the corners of his straight lips. "Well. My work here is done. I always have known JUST what to do to make things right. Care to throw the Hoover upright Beats as it Sweeps at my head again?"
The memory of my heaving that at his head, there in that very spot in the basement, when I got him to admit he was NOT considering staying but had been waiting to leave until the kids left... the memory of my having the strength to do it, the look of surprise on his face.
The laughter came, to the point where we sat on the steps and held one another until the tears came. At which point I got up and said, "NO MORE WATER!"
***
And these are the things that leap and cavort through my brain as I slog on through this business of "getting the house ready to show."
- It is not a tsunami in my basement. It's annoying yuck.
- I am alive, and my home is fine. And my back is better today, so I was able to pretend I was born to polish again today.
- I rode my bike for an hour and a half, singing rock and roll the whole time.
- I have money to pay my bills.
- In these times, in this country? I have everything I could possibly need.
Well. Except, perhaps, a brain capable of coherent thought. I wrote tonight because I was sick of NOT writing. It's what I do, how I enter the world. And bad or good, specious or profound, I write what happens in my little teeny world. The sign that last year is behind me for real is the fact that I am willing to blither publicly, to share how I DO process this life.
Today I move through sludge. Tomorrow I fly. One day I throw a vacuum cleaner at my ex's head. Another I stick a fondu fork through my hand. One never knows.
***
That's what I loved about the Jersey shore. You could run into someone who looked like Burt Lancaster one day and sounded like a dockworker, and then be approached by someone who clearly was stuck in "Stayin' Alive," wearing speedos, gold chains that glistened here and there, lost in the fur blanket of his chest, with the short-sleeved shirt buttoned by one button, straining over the not-twenty-year-old belly ... the man who would walk the forty yards to where you had clearly removed yourself to draw and sit on the rocks, who huffed and puffed his way there to say, "Youse look like ya need company. I got a porsche wit cher name on it."
And I would think, "Why me? Am I wearing that sign again?"
I just wanted to write about my adventures, but nope. For now, my life is wet vaccs, mops, and chasing dust rhinos around my house.
Just wanted you all to know I am here and I Miss my blogging and others' blogging. Sometimes real life--SURREAL life will intrude.
Forgive this entry, if you can. Perhaps tomorrow I can write about the forking incident--although, perhaps I already have. I'll check.
If you celebrated St. Patrick's Day, I hope you had fun. If you did not, I hope the same. For now? I think Jeannette needs to sleep. Perhaps, in the night, the tooth fairy will, since she has no further business with me, find my brain and leave it under my pillow. One can hope.
Tuesday, January 4, 2011
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.
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.
Tuesday, December 8, 2009
Update and my Christmas Tree
Thank you for the inquiries about my health. I have had some difficult news about the spinal issues and am simply working on learning to function in spite of them AND accommodating them as necessary. Sometimes this means finding the boundaries by crashing into them and then needing a few days to deal with the repercussions, but, well, that's the only way I know to learn my limitations.
I have to find them.
Super stores would appear to be my main downfall. I cannot make it through a super grocery store, so I will not go to them any more. I have had several dear friends suggest I use a motorized cart, but I think that this maybe shows most graphically how I feel I need to approach the challenges of new damage in both the thoracic and cervical spine.
I will not sit down unless there is no choice. There are other stores in which I can shop, and while they cost a bit more money, they allow me to stand, to walk, to complete my shopping, to get the items upstairs all on my own. THEN I can recuperate for a couple of hours. Psychologically, that choice to use the motorized chair is a symbol for me. I do not judge anyone for choosing the chair.
But for now? I need to keep my legs moving when and however I can.
My absence here is simply a reflection of my turning my attention to physical survival and adaptation. The pain is horrible, yes... but there are medications that help, and I am learning to use my yoga and breathing to control my own response to what pain remains because I choose NOT to have large doses of the meds.
I am decorating my tree. What used to be a two day process is a four-day one, but it is a beautiful process for me. Ninety per cent of the ornaments on my tree are gifts and/or symbols of people I love. David is a drummer... an old love who remains a dear, dear friend. I have a stained glass "present" ornament he gave me thirty years ago, and three drum sets friends have given me. Jim--the brother of whom I rarely write--played the trombone. I keep an ornament that reminds me of the best of him. He had a best and I choose to keep that nugget. My sister played the clarinet, Jack played the banjo. Jamie and R, the guitar. I have my two guitars and I choose to keep R. on my tree, despite the way he treated me. My tree represents the best of people I love, and when I look I try to focus on that. I have gifts from Gail, from Paige and Judy, Nancy, Sue, Martha... ornaments that were my parents', ornaments from both sets of grandparents' trees. There is the reindeer in her glitter dress, leaping... my tutu'd flamingo, Santa on a chicken, a glitter pig riding the moon, a rocking cow. I have blown glass holly and a hobby horse. I have glass icicles that will be the finishing garnish, replacing the lead tinsel of my youth. One hundred fifty of them will go on tonight, near lights. With a finishing touch of 100 tiny balls on the tips. They make the tree float at night.
My tree represents joy to me. I have modes of transportation, every musical instrument known, right down to an accordion. I have beautiful Santas and dopey ones, I have a castle and a house, tinkerbell and the tin man. Raggedy Andy. I gave Raggedy Ann to my counselor the Christmas after Jessie died, and she gave me a blown glass bell from Bermuda. I have a flute; Jessie played the flute. And a little boy playing soccer, the way Jay did. So many bits that make me think of them all...
And all of it is my mother and father.
My tree is love; the season is love to me. If anything can bring me out of the losses of the last few years, can help me believe that there will be joy in the years ahead, my tree will do it. The recollections of my family Christmases, of my beloved sister.
Fetching the stockings at the top of the stairs. Daddy's socks were long. We hung them by the chimney, but Santa put them at the top of the stairs. Jean Ellen got them, told the boys it was time, and the four of us piled on her big bed, to open the stockings, to laugh... to give my parents' an extra hour's rest on the craziest day of our year...
But that's for another week.
For now, thank you one and all, for the concern, and for making me feel that my writing offers gifts to more than myself. I have to go work on my tree some more. I cannot find just the right place for my hooker flamingo in her polka dotted dress. I mean, you can't put her just anywhere. And my glitter frog prince... I was given him as a reminder that maybe one day the amphibian would change.
Not so much, but I don't care. I JUST love that damned frog just fine.
Uh-oh... then there is the high heeled puce green boot with the red feather fur at its top... the problem with having the tree at the top of the stairs, is there is no longer any "back of the tree!" Elvis can be seen, even in toward the trunk. And this boot? OH. Wait. There's a spot just above Santa on a Chicken, three branches from the pig wrapped in a string of lights... never mind.
Later.
I have to find them.
Super stores would appear to be my main downfall. I cannot make it through a super grocery store, so I will not go to them any more. I have had several dear friends suggest I use a motorized cart, but I think that this maybe shows most graphically how I feel I need to approach the challenges of new damage in both the thoracic and cervical spine.
I will not sit down unless there is no choice. There are other stores in which I can shop, and while they cost a bit more money, they allow me to stand, to walk, to complete my shopping, to get the items upstairs all on my own. THEN I can recuperate for a couple of hours. Psychologically, that choice to use the motorized chair is a symbol for me. I do not judge anyone for choosing the chair.
But for now? I need to keep my legs moving when and however I can.
My absence here is simply a reflection of my turning my attention to physical survival and adaptation. The pain is horrible, yes... but there are medications that help, and I am learning to use my yoga and breathing to control my own response to what pain remains because I choose NOT to have large doses of the meds.
I am decorating my tree. What used to be a two day process is a four-day one, but it is a beautiful process for me. Ninety per cent of the ornaments on my tree are gifts and/or symbols of people I love. David is a drummer... an old love who remains a dear, dear friend. I have a stained glass "present" ornament he gave me thirty years ago, and three drum sets friends have given me. Jim--the brother of whom I rarely write--played the trombone. I keep an ornament that reminds me of the best of him. He had a best and I choose to keep that nugget. My sister played the clarinet, Jack played the banjo. Jamie and R, the guitar. I have my two guitars and I choose to keep R. on my tree, despite the way he treated me. My tree represents the best of people I love, and when I look I try to focus on that. I have gifts from Gail, from Paige and Judy, Nancy, Sue, Martha... ornaments that were my parents', ornaments from both sets of grandparents' trees. There is the reindeer in her glitter dress, leaping... my tutu'd flamingo, Santa on a chicken, a glitter pig riding the moon, a rocking cow. I have blown glass holly and a hobby horse. I have glass icicles that will be the finishing garnish, replacing the lead tinsel of my youth. One hundred fifty of them will go on tonight, near lights. With a finishing touch of 100 tiny balls on the tips. They make the tree float at night.
My tree represents joy to me. I have modes of transportation, every musical instrument known, right down to an accordion. I have beautiful Santas and dopey ones, I have a castle and a house, tinkerbell and the tin man. Raggedy Andy. I gave Raggedy Ann to my counselor the Christmas after Jessie died, and she gave me a blown glass bell from Bermuda. I have a flute; Jessie played the flute. And a little boy playing soccer, the way Jay did. So many bits that make me think of them all...
And all of it is my mother and father.
My tree is love; the season is love to me. If anything can bring me out of the losses of the last few years, can help me believe that there will be joy in the years ahead, my tree will do it. The recollections of my family Christmases, of my beloved sister.
Fetching the stockings at the top of the stairs. Daddy's socks were long. We hung them by the chimney, but Santa put them at the top of the stairs. Jean Ellen got them, told the boys it was time, and the four of us piled on her big bed, to open the stockings, to laugh... to give my parents' an extra hour's rest on the craziest day of our year...
But that's for another week.
For now, thank you one and all, for the concern, and for making me feel that my writing offers gifts to more than myself. I have to go work on my tree some more. I cannot find just the right place for my hooker flamingo in her polka dotted dress. I mean, you can't put her just anywhere. And my glitter frog prince... I was given him as a reminder that maybe one day the amphibian would change.
Not so much, but I don't care. I JUST love that damned frog just fine.
Uh-oh... then there is the high heeled puce green boot with the red feather fur at its top... the problem with having the tree at the top of the stairs, is there is no longer any "back of the tree!" Elvis can be seen, even in toward the trunk. And this boot? OH. Wait. There's a spot just above Santa on a Chicken, three branches from the pig wrapped in a string of lights... never mind.
Later.
Saturday, October 3, 2009
Jeannette's Wild Life: Part 923.7
I was going to say that here and there life takes a new turn, but when I look at my life, that seems a tad absurd. For me? Here and there life moves straight forward...
I am inserting something here, so you realize that I DO love life. I have learned along the way... And I will continue to learn. Without writing, art, music, friends? Yeah, all this would be bleak, but this entry is about learning to write WHILE I process, not just afterward. And I hope that more than "Ain't it awful?" comes through. It IS awful, but life is hard sometimes. And what I want more than anything is to burst through, like a phoenix, on the other side.
Thank you so much to those of you who have written to say you missed my writing. When you read of what is going on for me, you may realize, I hope, just how grateful I am to know that my writing and my heart touch some people out there. That my style of expressing myself resonates.
I will write again that my blog is not so much about trying to gather a following as it about trying on my voice. My dream is to write my memoir. (Okay, so one of my 150 dreams, but who's counting!) My passions are writing for "myself" --the blog, poetry, and even working on some fiction again--and painting/drawing. And singing. I don't think I have mentioned that I sing. I was in three choruses at one point, and I also have always loved singing folk/folk rock/country rock... Oh, seventies stuff, basically. I am lucky that I love so many things, but sometimes it has felt that obstacles were overwhelming.
I'm sharing the story of my health here to simply talk about how things truly are. I am so tired of pretending I'm stronger than I am. Part of my story is who I am now, not just my past. There may be suggestions for work, for opportunities, or simple words of support, just as you have already given.
You all have been wonderful to me; my friends know my health and where it trips me up and where, now it has slammed me upside the head with a plank.
Indulge me, if you want. Feel free to stop half way through and run screaming into the night!
And just like that, the music I had was gone. I knew no one with whom I could sing the other stuff, but that's a different joy. Until the last few weeks, I thought that was the only one of my passions, however, at risk. And I had found a way to replace that loss with painting...
I have been on disability twice, and both times I worked my way off of it. I created a career from scratch when my husband left me in 1992, one month after a tenth procedure...
I learned to use a computer and was a computer graphics/layout artist for about eight years. I learned how to draw maps and convert CAD drawings. I did pen and ink thumbnail sketches for brochures and special tourist catalogs, would scan them ... and I had the opportunity to write FOR MONEY. Woo HOOOOOO! I wrote the history of the area in which I lived for a visitors' guide and did about seven or eight pen and ink illustrations for it. I was able to work partly at home, partly at an office and gradually found a way around a body that, basically functioned in one to one and a half hour "upright bites."
When I wrote or drew, I set an alarm at home for an hour, after which I would wrap up what I did, then literally lie down for forty-five minutes before I began again. That way I could put in an eight hour day over the course of twelve or fourteen hours. Mostly I worked no more than six hours that way. On the days I went into an office, I did my best to work four hours straight. It hurt. Once in a while I could do more. But it was okay because I could rest most of the next day. The trick was to command enough money per hour, eventually, so that I could earn a living without working full time.
It took me until 2002 to succeed fully. I was thrown off of Disability before then, but when I finally got to work for Stanford? When I got my first big contract from them, while I was still doing a bit of design work here and there, I felt as if the world was opening up for me. I was paid to go to California, to do consultant work. And I wrote. That wound up being all I did. I got the commitment because, in a crisis, I was able to dive in and take over the graphics component and do the layout for their print catalog, at a distance of 3000 miles. I was fine about just pitching in when their graphics artist took a vacation at a critical time. Stanford saw that I didn't think of them as a client--that I treated them as if I were part of a team, and I began to get huge contracts. Huge for me. At that moment, too, I realized that I was a writer who could design, rather than a designer who could write.
That's crucial. It tells you about who Jeannette is. I am a science geek. A groupie. To me, interviewing Donald Knuth, Bob Twiggs, Dan Boneh--giants in their fields of computer programming, aeronautics, and computer security--and writing about their work was like writing about rock stars. So I got to write about other people's passions, indulge my inner geek, AND get paid? Wow. I was living an old dream, earning my living as a writer. How proud my folks would have been, particularly my dad... the one who knew I was not destined for nine to five.
By 2004, though, my contracts fully supported me. And I was singing, which mitigated the pain. I felt something was missing, but I didn't know what, exactly... and then things turned. The shingles hit in March of 2004 and nothing was the same again. I had vertigo. I could not even hear a phone ring without setting off the facial nerve. Yet I continued to work, writing and writing for Stanford. I could not sing. I stopped my poetry. I could not listen to any music at all. My sister was getting stranger and sort of drifting off, but was pretending she was well. And I couldn't figure out why my legs would get shaky.
I wrote it off to stress. Ever notice how easily we can say, oh stress makes me nuts. I mean, it DOES. But sometimes we need to give ourselves some attention beyond that. I'm a good one for feeling that I am not tough enough. In 2005, the autumn I had three things happen at once. I like this in life. I believe if it's all going to hit the fan, hey, throw it all at once. Why lose the opportunity for the drama? I had chest pains, I started falling for no reason, and I had blood appearing in odd places.
Oh. And my sister had started staying in her room in the other half of her house, for days on end, speaking to no one, and coming out of it only to use the kitchen, or walk through my half to go to the store or to her friend's house to do laundry. (Had to get to the garage by going through my house.) We thought I had heart problems. My heart rate was out of control. Fortunately, my doctor thought to check my abdomen and we found that my gall bladder was shot. And I had the precursors to ulcers.
And my spinal canal problems had shockingly deteriorated in the three years between MRIs. And the problems of trigeminal neuralgia and the vertigo from the shingles? They never went away.
We fixed the gall bladder and I made changes for other digestive situations through that autumn and up until Two weeks before Christmas. I was in PT to go through my second round of training new nerves to move my right leg, to learn how to walk. This set of nerves really doesn't like it all that much, but it works enough.
And I realized that my sister had done nothing for Christmas. Just as I had when my dad was dying, I took over to make our traditions happen. And after Christmas my sister fell apart and was diagnosed with terminal cancer.
I had some more work from Stanford, some isolated illustrations, but I had a lot to look after and had to recover from the roller coaster that began with shingles. And I had had no time to truly understand the problem in my spine. I have bits of calcified scar tissue and disk fragments floating in the spinal canal. They move around and rest at horrible places. I had been in pain for decades, but nothing like this. And various parts of me will suddenly not function properly. I also got bitten IN THE HAND--left--by a dog and have some minor residual damage in that hand. And I have the pain in my face that can be set off even today by a backfiring car, the microwave, occasionally the phone. I had to figure out what to do.
Why the detail? I think it's to eliminate the notion that there is anything medical left to consider, to make it plain that what is happening now is the best that things physically will be. I must accept it, then find my ways around it.
You all know I created the studio. And I had planned out my wonderful art workshops, but the neighborhood blew that. THEN, miracle of miracles, Stanford called. They NEEDED me. Well, of COURSE I could do that. And I dove in, feeling I had been rescued. it was my lifeline, I thought.
In the past three weeks, I had to face the painful, terrifying truth that I cannot do this any more. That alarm clock? I really should not work at the computer for more than 25 minutes at a time now. Sitting or standing, it's the same from my back's point of view. I can stand for about a minute before the throbbing and swelling set in. If I have support I can go further and longer. When I walk on a hard surface, after about 100 steps, the foot begins to flop and I walke around swinging the leg, saying, "ARRR, maties." One day when I was "running" into Walgreen's to grab a few things, the leg didn't work and I realized I was singing, OUTLOUD from a sixties series, "They call her FLipper, Flipper, slower than honey..."
Yeah. Well. I think in television theme and seventies hippie songs, and that's life. Deal.
It never occurred to me that more than my legs were affected. But I found that pain set up a neurological haze through which I just could not focus for long... not and access the right brain. I found that because that alarm clock of pain for sitting was so compromised, I spent too much time resting, then had to catch up. I forced myself to focus those forty-five minutes at a clip and for the first three or four pieces, I was great. And I still had a talent for interviewing. People relax and, after about twenty minutes, the really cool stuff happens. They get off the PR line, their set ways of presenting themselves. But the toll was building. I try not to take my medication when I need to write, because there IS that half hour window when I am a touch loopy. It is best to be lying down, and to let it do what it is supposed to. After that, though I'm fine and I paint, I often do my best poetry and right brain work.
But for the work that has supported me, I found I could not organize the thoughts well. It took me a long time to get back INTO where I was going. And the pain was building. And suddenly, because of blasting and work that made my house literally vibrate, the calcified fragments moved. One day my right hand got tingly and went numb. I had trouble moving my two last fingers... Now, mind you, because of the dog bite on my left hand, every ten minutes or so, I will suddenly raise my left arm and shake my hand. The last three fingers get super tingly and when I do that, and flex them and such for no more than thirty seconds, then they are fine again... for ten minutes.
But it didn't work on my right hand. And the pain...
The fragments shifted again and now my arm is okay, but it took nine days for it to return to normal. The horrifying truth was that I no longer could be relied on to meet my deadlines. The problems in my spine are too unpredictable. the pain is too severe. I had to let go, yet again, of something that might have supported me.
There are no solutions for my back. I have beaten all the odds the doctors know. As the last one said, "I think you know your body better than any of us. You are a walking miracle and if any surgeon tells you he or she can fix this? RUN, limp, or CRAWL out. Don't let anyone open up that spine again, unless it is life and death. I am serious."
Why tell you all? Why not? If my blog is about writing from the heart, writing the truths of my life, well, why not do it? I haven't the objectivity to edit this all, yet, but so what? For once, right here, as I am today, I can share all of it with you. There is no shame, no guilt to this. There's nothing that I have to worry about saying because it is public.
Sometimes simply writing it down makes it real. To move into full-blown hope, first we have to understand our reality. I process all things by writing. This time I am experimenting by doing that with all of you. This time I am trying to fold it into what I already do.
I hope you will all hang with me on this blog. I still want to paint, to tutor and to write my memoir. A lot that has happened in my life has made me strong, has given me hope, has made me know that life is something onto which you grab and really hang on. It is a wild, roller coaster ride through a jungle, into space, under the sea, and around again. I wouldn't miss a moment.
Only just now? It sucks. There. How eloquent. How refined. It does. I need to find a way to support myself, but I also want to write my story. My mom's story. A story about a family that was big and loud and completely dysfuntional and overflowing with equally boisterous unconditional love, joy and magic. THAT is my life's work and I need to find a way to do it. My parents' story, our family seen through the eyes of Jetty. Jetty was my family's nickname for me, the baby.
I am all who is left.
The Blog, for ME
This blog is my way to bridge my life between the struggle and the dream. I usually try not to write about my crises while I am in them, but I could wait a long time before this one's done. And, while you will not see me writing much about this again, I can write about other things. I have perspective on my family, on my history in childhood. And I have not lost my love of... pluots? And all things visceral, messy, juicy, and joyous.
But I hurt. I hurt a lot. And I am afraid. Why wouldn't I be? To deny that it is scary to be without work, without new funds, to be facing possibly losing this home I love? Yeah. That's big stuff. I finally have a studio and may lose it within six months. Yet I have to focus elsewhere. I need to believe that the writer and the painter and the woman who loves life and all it brings will find answers.
But I will tenaciously cling to the hope that I can write my way out of the rest. Love my way. Paint my way. Tutor my way. ALL of them
Okay. this long ramble is done.
And I'll be running around looking at and commenting on your blogs soon. Bless you all for giving me your support, your concern. It means more than I know how to say. We are strangers to one another, yet we all speak through words or pictures or both, to one another in intimate, profound ways.
In the meantime I will do my version of prayer. I will still the cacophony in my head and I will breathe. I will ask only for the calm, and for the wide open heart, ears, and eyes to feel, hear, and/or see solutions as they are offered to me.
And I will see whether or not this first for me, helps... It's standing on the edges of things and opening my arms wide and trusting that I will not fall. Simply trusting.
I am inserting something here, so you realize that I DO love life. I have learned along the way... And I will continue to learn. Without writing, art, music, friends? Yeah, all this would be bleak, but this entry is about learning to write WHILE I process, not just afterward. And I hope that more than "Ain't it awful?" comes through. It IS awful, but life is hard sometimes. And what I want more than anything is to burst through, like a phoenix, on the other side.
Thank you so much to those of you who have written to say you missed my writing. When you read of what is going on for me, you may realize, I hope, just how grateful I am to know that my writing and my heart touch some people out there. That my style of expressing myself resonates.
I will write again that my blog is not so much about trying to gather a following as it about trying on my voice. My dream is to write my memoir. (Okay, so one of my 150 dreams, but who's counting!) My passions are writing for "myself" --the blog, poetry, and even working on some fiction again--and painting/drawing. And singing. I don't think I have mentioned that I sing. I was in three choruses at one point, and I also have always loved singing folk/folk rock/country rock... Oh, seventies stuff, basically. I am lucky that I love so many things, but sometimes it has felt that obstacles were overwhelming.
I'm sharing the story of my health here to simply talk about how things truly are. I am so tired of pretending I'm stronger than I am. Part of my story is who I am now, not just my past. There may be suggestions for work, for opportunities, or simple words of support, just as you have already given.
You all have been wonderful to me; my friends know my health and where it trips me up and where, now it has slammed me upside the head with a plank.
Indulge me, if you want. Feel free to stop half way through and run screaming into the night!
The Long Road Here – the lesser of ten evils
About five years ago I got the shingles on my auditory nerve, right where it touches the trigeminal nerve to my face. It set up a response that never went. Certain frequencies set up vibrations which overstimulate the trigeminal nerve in the right side of my face. I will get horrifyingly sharp pain in my face that makes it twitch and it looks to others, as if I am having a seizure or a stroke. Then my face goes numb and droops. When sopranos sing I run for cover. I cannot listen to live orchestra music. It ended the part of my life that had given me the most joy--becoming part of the greater whole, that ONLY being part of an ensemble brings. Blending in a chorus allows us to lose our sense of self and become something that simply soars.And just like that, the music I had was gone. I knew no one with whom I could sing the other stuff, but that's a different joy. Until the last few weeks, I thought that was the only one of my passions, however, at risk. And I had found a way to replace that loss with painting...
The Big Stuff
Then there is my back. I had eight back operations in four years, back between 1980 and 1984. I have spinal cord damage. I had scar tissue and disk fragments in the spinal canal. Once you need to actually intrude on the canal? It's all a crap shoot. I had one of the top five surgeons in the country do the last five operations. His replacement was in on the last operation, the ninth, in 1986, two and a half months before my dad died. I was told I'd likely be dead or wheelchair bound by forty. I am fifty-seven. I walk... kind of. I walk enough, let's just say. NO. I walk AT ALL. It is everything.I have been on disability twice, and both times I worked my way off of it. I created a career from scratch when my husband left me in 1992, one month after a tenth procedure...
I learned to use a computer and was a computer graphics/layout artist for about eight years. I learned how to draw maps and convert CAD drawings. I did pen and ink thumbnail sketches for brochures and special tourist catalogs, would scan them ... and I had the opportunity to write FOR MONEY. Woo HOOOOOO! I wrote the history of the area in which I lived for a visitors' guide and did about seven or eight pen and ink illustrations for it. I was able to work partly at home, partly at an office and gradually found a way around a body that, basically functioned in one to one and a half hour "upright bites."
When I wrote or drew, I set an alarm at home for an hour, after which I would wrap up what I did, then literally lie down for forty-five minutes before I began again. That way I could put in an eight hour day over the course of twelve or fourteen hours. Mostly I worked no more than six hours that way. On the days I went into an office, I did my best to work four hours straight. It hurt. Once in a while I could do more. But it was okay because I could rest most of the next day. The trick was to command enough money per hour, eventually, so that I could earn a living without working full time.
It took me until 2002 to succeed fully. I was thrown off of Disability before then, but when I finally got to work for Stanford? When I got my first big contract from them, while I was still doing a bit of design work here and there, I felt as if the world was opening up for me. I was paid to go to California, to do consultant work. And I wrote. That wound up being all I did. I got the commitment because, in a crisis, I was able to dive in and take over the graphics component and do the layout for their print catalog, at a distance of 3000 miles. I was fine about just pitching in when their graphics artist took a vacation at a critical time. Stanford saw that I didn't think of them as a client--that I treated them as if I were part of a team, and I began to get huge contracts. Huge for me. At that moment, too, I realized that I was a writer who could design, rather than a designer who could write.
That's crucial. It tells you about who Jeannette is. I am a science geek. A groupie. To me, interviewing Donald Knuth, Bob Twiggs, Dan Boneh--giants in their fields of computer programming, aeronautics, and computer security--and writing about their work was like writing about rock stars. So I got to write about other people's passions, indulge my inner geek, AND get paid? Wow. I was living an old dream, earning my living as a writer. How proud my folks would have been, particularly my dad... the one who knew I was not destined for nine to five.
Okay – Here it Is, the Unforeseen Toll
What I did not see? Through the years, inch by inch, that alarm clock had to go off sooner. It went from an hour and a half, to an hour, to forty-five minutes... When I stood for more than ten minutes, somehow or other I had to find a wall to lean against, a table to hold onto... When I grocery shopped, I would lean fully forward to support myself on the cart as I walked, and the stores seemed to get awfully large during just one shopping. The pain increased.By 2004, though, my contracts fully supported me. And I was singing, which mitigated the pain. I felt something was missing, but I didn't know what, exactly... and then things turned. The shingles hit in March of 2004 and nothing was the same again. I had vertigo. I could not even hear a phone ring without setting off the facial nerve. Yet I continued to work, writing and writing for Stanford. I could not sing. I stopped my poetry. I could not listen to any music at all. My sister was getting stranger and sort of drifting off, but was pretending she was well. And I couldn't figure out why my legs would get shaky.
I wrote it off to stress. Ever notice how easily we can say, oh stress makes me nuts. I mean, it DOES. But sometimes we need to give ourselves some attention beyond that. I'm a good one for feeling that I am not tough enough. In 2005, the autumn I had three things happen at once. I like this in life. I believe if it's all going to hit the fan, hey, throw it all at once. Why lose the opportunity for the drama? I had chest pains, I started falling for no reason, and I had blood appearing in odd places.
Oh. And my sister had started staying in her room in the other half of her house, for days on end, speaking to no one, and coming out of it only to use the kitchen, or walk through my half to go to the store or to her friend's house to do laundry. (Had to get to the garage by going through my house.) We thought I had heart problems. My heart rate was out of control. Fortunately, my doctor thought to check my abdomen and we found that my gall bladder was shot. And I had the precursors to ulcers.
And my spinal canal problems had shockingly deteriorated in the three years between MRIs. And the problems of trigeminal neuralgia and the vertigo from the shingles? They never went away.
We fixed the gall bladder and I made changes for other digestive situations through that autumn and up until Two weeks before Christmas. I was in PT to go through my second round of training new nerves to move my right leg, to learn how to walk. This set of nerves really doesn't like it all that much, but it works enough.
And I realized that my sister had done nothing for Christmas. Just as I had when my dad was dying, I took over to make our traditions happen. And after Christmas my sister fell apart and was diagnosed with terminal cancer.
Okay, Your path is winding,
but where the bleep are you going here?
Why am I saying all this? I never was able to work regularly again. Sporadically, yes, but I had to put myself on medical then the kind of leave where you take care of a dying parent. My sister died on August 31, 2006. My son moved into her part of the house the following year. It took me nine months to clean up the mess. It was not her fault. Not even remotely. Her cancer had infected her brain and we'll leave that story for another time.but where the bleep are you going here?
I had some more work from Stanford, some isolated illustrations, but I had a lot to look after and had to recover from the roller coaster that began with shingles. And I had had no time to truly understand the problem in my spine. I have bits of calcified scar tissue and disk fragments floating in the spinal canal. They move around and rest at horrible places. I had been in pain for decades, but nothing like this. And various parts of me will suddenly not function properly. I also got bitten IN THE HAND--left--by a dog and have some minor residual damage in that hand. And I have the pain in my face that can be set off even today by a backfiring car, the microwave, occasionally the phone. I had to figure out what to do.
Why the detail? I think it's to eliminate the notion that there is anything medical left to consider, to make it plain that what is happening now is the best that things physically will be. I must accept it, then find my ways around it.
You all know I created the studio. And I had planned out my wonderful art workshops, but the neighborhood blew that. THEN, miracle of miracles, Stanford called. They NEEDED me. Well, of COURSE I could do that. And I dove in, feeling I had been rescued. it was my lifeline, I thought.
In the past three weeks, I had to face the painful, terrifying truth that I cannot do this any more. That alarm clock? I really should not work at the computer for more than 25 minutes at a time now. Sitting or standing, it's the same from my back's point of view. I can stand for about a minute before the throbbing and swelling set in. If I have support I can go further and longer. When I walk on a hard surface, after about 100 steps, the foot begins to flop and I walke around swinging the leg, saying, "ARRR, maties." One day when I was "running" into Walgreen's to grab a few things, the leg didn't work and I realized I was singing, OUTLOUD from a sixties series, "They call her FLipper, Flipper, slower than honey..."
Yeah. Well. I think in television theme and seventies hippie songs, and that's life. Deal.
It never occurred to me that more than my legs were affected. But I found that pain set up a neurological haze through which I just could not focus for long... not and access the right brain. I found that because that alarm clock of pain for sitting was so compromised, I spent too much time resting, then had to catch up. I forced myself to focus those forty-five minutes at a clip and for the first three or four pieces, I was great. And I still had a talent for interviewing. People relax and, after about twenty minutes, the really cool stuff happens. They get off the PR line, their set ways of presenting themselves. But the toll was building. I try not to take my medication when I need to write, because there IS that half hour window when I am a touch loopy. It is best to be lying down, and to let it do what it is supposed to. After that, though I'm fine and I paint, I often do my best poetry and right brain work.
But for the work that has supported me, I found I could not organize the thoughts well. It took me a long time to get back INTO where I was going. And the pain was building. And suddenly, because of blasting and work that made my house literally vibrate, the calcified fragments moved. One day my right hand got tingly and went numb. I had trouble moving my two last fingers... Now, mind you, because of the dog bite on my left hand, every ten minutes or so, I will suddenly raise my left arm and shake my hand. The last three fingers get super tingly and when I do that, and flex them and such for no more than thirty seconds, then they are fine again... for ten minutes.
But it didn't work on my right hand. And the pain...
The fragments shifted again and now my arm is okay, but it took nine days for it to return to normal. The horrifying truth was that I no longer could be relied on to meet my deadlines. The problems in my spine are too unpredictable. the pain is too severe. I had to let go, yet again, of something that might have supported me.
There are no solutions for my back. I have beaten all the odds the doctors know. As the last one said, "I think you know your body better than any of us. You are a walking miracle and if any surgeon tells you he or she can fix this? RUN, limp, or CRAWL out. Don't let anyone open up that spine again, unless it is life and death. I am serious."
What Now?
Haven't a Clue, Except I Have to Write
That's why I haven't written. For a few days I couldn't. Then I just did not know how to deal with it. I don't know how to, still. It is all too raw.Haven't a Clue, Except I Have to Write
Why tell you all? Why not? If my blog is about writing from the heart, writing the truths of my life, well, why not do it? I haven't the objectivity to edit this all, yet, but so what? For once, right here, as I am today, I can share all of it with you. There is no shame, no guilt to this. There's nothing that I have to worry about saying because it is public.
Sometimes simply writing it down makes it real. To move into full-blown hope, first we have to understand our reality. I process all things by writing. This time I am experimenting by doing that with all of you. This time I am trying to fold it into what I already do.
I hope you will all hang with me on this blog. I still want to paint, to tutor and to write my memoir. A lot that has happened in my life has made me strong, has given me hope, has made me know that life is something onto which you grab and really hang on. It is a wild, roller coaster ride through a jungle, into space, under the sea, and around again. I wouldn't miss a moment.
Only just now? It sucks. There. How eloquent. How refined. It does. I need to find a way to support myself, but I also want to write my story. My mom's story. A story about a family that was big and loud and completely dysfuntional and overflowing with equally boisterous unconditional love, joy and magic. THAT is my life's work and I need to find a way to do it. My parents' story, our family seen through the eyes of Jetty. Jetty was my family's nickname for me, the baby.
I am all who is left.
The Blog, for ME
This blog is my way to bridge my life between the struggle and the dream. I usually try not to write about my crises while I am in them, but I could wait a long time before this one's done. And, while you will not see me writing much about this again, I can write about other things. I have perspective on my family, on my history in childhood. And I have not lost my love of... pluots? And all things visceral, messy, juicy, and joyous.
But I hurt. I hurt a lot. And I am afraid. Why wouldn't I be? To deny that it is scary to be without work, without new funds, to be facing possibly losing this home I love? Yeah. That's big stuff. I finally have a studio and may lose it within six months. Yet I have to focus elsewhere. I need to believe that the writer and the painter and the woman who loves life and all it brings will find answers.
But I will tenaciously cling to the hope that I can write my way out of the rest. Love my way. Paint my way. Tutor my way. ALL of them
Okay. this long ramble is done.
And I'll be running around looking at and commenting on your blogs soon. Bless you all for giving me your support, your concern. It means more than I know how to say. We are strangers to one another, yet we all speak through words or pictures or both, to one another in intimate, profound ways.
In the meantime I will do my version of prayer. I will still the cacophony in my head and I will breathe. I will ask only for the calm, and for the wide open heart, ears, and eyes to feel, hear, and/or see solutions as they are offered to me.
And I will see whether or not this first for me, helps... It's standing on the edges of things and opening my arms wide and trusting that I will not fall. Simply trusting.
Small PS
One of my closest friends told me I should simply write from my heart and offer it here. He said that I just don't know what good will come of it. He is prejudiced, of course, but just because he loves me does not mean he is WRONG! Thank you. Already, just putting it out there, helps. You were right.
Monday, September 28, 2009
Just a bit of an Illness
To those of you who noticed I had not posted, thank you for letting me know. It is a shock to me. This blog represents the first time I have allowed my personal writing out of the box... out of a classroom... into the big marvelous, messy mish-mash that is the Web.
It is taking a while to sink in that people like my writing and are moved. This is my training ground for a memoir. I have been warned and supported in being careful of what I put here, but, by the same token, one sends a memoir into the world.
My back's been a mess and my regular work has suffered. When you write for someplace like Stanford, you cannot write in short bursts as I can for my blog. The entries take time and love and attention, but my work requires that I sit too long sometimes. Doesn't sound bad, I suppose, but I have had eight spinal operations. At 57, now, it has taken a toll. I've had to face some tough decisions over the last two weeks, so I've been away from the writing I love so much.
You nine who follow me regularly, and others who visit from time to time? For the first time, I am thinking that perhaps, if I wrote a memoir there are those who would want to read it, who might connect with what I say and how I say it. All of you have given me some confidence there.
I will write about what's gone on, but not today. I write from a position of objectivity, ironically enough. Only when I have processed the event can I feel free enough to attach the force of my emotions to it.
So. I'm in a state of flux, wondering whether I take the risk to focus on the work I want--my poetry and memoirs, and fiction and painting. Or do I keep pounding my head against the wall because it's what my MOM and the RELATIVES would say is wise. How do I find work to replace it?
It is not easy to admit limitations. I've fought doing that now for thirty years; it's why I walk. What I had to remembered is that I have ALSO stayed walking because I do recognize when the word "enough" is the right word. When it is pounding my head against a wall. And it is always better to walk away from something before it's blown out of the ater and taken out of our hands, don't you agree?
Anyway, thank you for letting me know that you look forward to my words. It means so much more than you know.
Today is my daughter, Jessie's birthday. She would have been 38. I am missing her today--that's the age I was when we bought this home, this last place my daughter lived. I'll be back.
It is taking a while to sink in that people like my writing and are moved. This is my training ground for a memoir. I have been warned and supported in being careful of what I put here, but, by the same token, one sends a memoir into the world.
My back's been a mess and my regular work has suffered. When you write for someplace like Stanford, you cannot write in short bursts as I can for my blog. The entries take time and love and attention, but my work requires that I sit too long sometimes. Doesn't sound bad, I suppose, but I have had eight spinal operations. At 57, now, it has taken a toll. I've had to face some tough decisions over the last two weeks, so I've been away from the writing I love so much.
You nine who follow me regularly, and others who visit from time to time? For the first time, I am thinking that perhaps, if I wrote a memoir there are those who would want to read it, who might connect with what I say and how I say it. All of you have given me some confidence there.
I will write about what's gone on, but not today. I write from a position of objectivity, ironically enough. Only when I have processed the event can I feel free enough to attach the force of my emotions to it.
So. I'm in a state of flux, wondering whether I take the risk to focus on the work I want--my poetry and memoirs, and fiction and painting. Or do I keep pounding my head against the wall because it's what my MOM and the RELATIVES would say is wise. How do I find work to replace it?
It is not easy to admit limitations. I've fought doing that now for thirty years; it's why I walk. What I had to remembered is that I have ALSO stayed walking because I do recognize when the word "enough" is the right word. When it is pounding my head against a wall. And it is always better to walk away from something before it's blown out of the ater and taken out of our hands, don't you agree?
Anyway, thank you for letting me know that you look forward to my words. It means so much more than you know.
Today is my daughter, Jessie's birthday. She would have been 38. I am missing her today--that's the age I was when we bought this home, this last place my daughter lived. I'll be back.
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