I have been using this month to begin the process of developing some structure for myself. While I was a pretty disciplined and successful copy writer for more than a decade, I had a few regular clients and I knew their needs and schedules. My back had its own schedule and I knew it by heart, by feel, to my core. Everything fell apart three years ago.
Now, as I start my new life with new parameters, new brick walls to avoid, and free of anyone's deadlines but my own, well, I find myself a little unnerved. I have been reading some books on the new publishing world--on my Kindle, of course, which is only fitting. It would seem I must develop a platform; yes, I knew this already but I didn't know it, if you get my drift. This home blog of mine, this testing ground, this home base for some internet relationships that matter to me ... well, it won't cut it for a platform. Again, I know this in my mind, but it is unlikely I will abandon it. It serves a deeper purpose for me.
I just read an article in this month's Poet & Writers' Magazine about the Internet and how it can interfere with a writer's creativity. I could cite it more carefully, but what I read was more of a jumping off point that is combined with the three books I've read in the last two weeks about marketing a book in today's world. The message is clear in all of them; I must build a platform long before the book is even written. I must join networks of people who share my interests, who are likely readers of a memoir I would write. I must write SHORT.
Oh. My. God. Help me.
I have to re-enter the world of Twitter. I do not LIKE Twitter. This does not mean I don't appreciate its uses; it means simply that I hate Internet/text/chat speak. So much room for misunderstanding, for lazy communication. On the other hand, I know that I am often lazy in my meandering trips to nowhere on my blog. I am lucky that some of you enjoy the ride without particularly worrying about the side trips and the fact that there may not be a particular goal. But I have to start finding things to write about on a regular basis, things I can put into 500 words, or perhaps 750.
I have to tweet, post status updates, comment, write, connect. CONNECT. CONNECT.
And I have a wonderful compendium now of ways to do this, most of which I kind of understand, despite my protests to the contrary. I just don't know which of them will help my actual writing. Which will contribute to the act of getting the thing done? My blog right here does that. Reading the blogs I do help my writing. So I know I must keep this going and I have to incorporate reading YOUR words, thinking about them and commenting on them.
I have seen some of you do a fantastic job of building substantial followings and, when I think about it, I realize how you do it. Part of it is your frequency and the variety of your work. Or the fact that you connect with people who do what you do. Linda Lou is a marvel to me! And I watched Donna take off. I read blogs which have thousands of followers and I wonder how you all can write so often and so well, about so much. (Naturally, in this frame of mind, I see only my shortcomings. This ain't about logical thinking today!)
But my goal was never about how many followers I have had. My goal was to have followers who wanted to come back, even though I am sporadic here. My goal was to find my own voice and to use it; to learn how to write what is painful or horrific, without making people want to run away screaming into the night. It's cool to see the number grow, when I publish every week, when I explore new blogs and comment. But that's not the object for me.
The article I just read talked about how the social networking can also divert us from the very thing we started networking FOR! To create a welcoming platform for the book we want to write, or have begun to write. It talked about how we have to walk AWAY from all the networking and unplug ourselves in order to produce, to give our creativity time to percolate.
Well, then I hit my brick wall this week and got the shakes and put myself into a dither.
Visions of Hell
This is a talent I have; perhaps it is an artform for me. I'm not sure.
I have about four upright hours in every day. Occasionally I have as many as six, as long as they are spread out with many long breaks. By upright I mean sitting UP. I have to lie down a lot, and I DO mean lie down. I can one day perhaps get one of the Dragonspeak programs and do more. But for now it hit me that I have a great deal of work I must do online to lay the groundwork for being able to publish this book I am also working. And I have FIVE paintings in the works. Suddenly, it all became overwhelming to me.
How do I give time to it all, every day, and still have a life with the people I love, and do my laundry, and my grocery shopping, and, well, leave my apartment? Not to mention go to the gym nearby for about four hours a week so that I can KEEP WALKING?
I began to sob, not just cry. I threw an all out hissy fit. I got scared. I am sixty years old in June and I have only JUST adjusted to this new and frail body I do not like, to the point where I can consider starting the program to perhaps make it stronger and maybe add another half hour or hour to the productivity.
And then I began to laugh. How come AlAnon still helps me? ONE STEP AT A TIME. One DAY. One Hour. I let it all gang up in my mind. I must do all things on every day. I must build a network of thousands by next Tuesday? And I must start my hour and a quarter workouts THIS week THREE days a week immediately. And I must twitter, begin a new blog, write on this blog, read ALL the blogs I've missed, develop a webpage, compile a list of existing contacts, AND read the three memoirs waiting for me--in the coming week.
There is no time. I must also complete at least twelve paintings by 2013.
In four hours a day.
Or I am a failure.
It's good to be a grown up...
Step Back and Breathe
My brothers and sisters all called me in the same twenty-four hour period after one of my mom's most infamous binges after my dad died. I had almost the same conversation with each.
Sibling: Mother is drinking. Did you know she drank like this?
Me: No shit. [sorry. In this case, the word fit. I'd been screaming about it for twenty years.] I've told you she was an alcoholic for years.
Sibling: Well. Yes, but I never knew it was this bad.
Me: silence .... then, What's your point?
Sibling: What are you going to do about it?
Me: Get the hell to AlAnon.
I went to my first meeting that Wednesday and got me an ODAT book (One Day At A Time). I sat at that meeting and listened, then went home and read all 365 days that very night. Like so many before me, I figured if I did it all at once, I'd be cured real fast. They reminded me to slow down.
And so it has been as I've been doing my research, as I have been allowing myself to actually take my dreams seriously and lay the groundwork.
Mommy, I am telling them what we had. Honestly, I am. And I am shining as hard as I can for you.
But I sure do wish you were here the way you were when I'd run so fast I'd fall; to lightly tip my chin up toward your face and say, "Jetty, Jetty. Breathe. Life is not a race. Sweetie, catch your breath and try moving one foot at a time so you don't get all tangled up and keep falling down. You'll get there in your own time." And then kiss me on my nose.
I guess maybe I'll just breathe. And write. And get there in my own time now, one word at a time, so I don't get myself all tangled up and fall down.
OOOOHHHHHHHMMMMMM.... Oh. Wait. I'm not supposed to be saying that with clenched fists, huh.
Here's to those baby steps I was writing about!
Accidental Spring
"Accidental Spring" This began as the background for painting other papers, but became something else!
Showing posts with label disability. Show all posts
Showing posts with label disability. Show all posts
Wednesday, January 18, 2012
Friday, January 28, 2011
Weeding to the Music of Lilacs
"In the right light, at the right time, everything is extraordinary." Aaron Rose
This quote was used as part of Pauline's Writing Down the Words: January 28 entry That particular quote made me remember the role that gardening has played in so much of my healing time of the last twenty years, the years of home ownership, and visiting without words.And it reminded me of the extraordinary friendships forged around ordinary routines.
When I was in my twenties I did a great deal of visiting over toddlers and folding laundry. I was single; my friends were not. (See "Laundry Eagles" for an understanding of what I mean.) I was a thoroughly obnoxious sort of friend. I'd watch their children for an hour or two when they had errands to run, hang around to help unload the groceries, the laundry, whatever and, when the little ones began to implode along around 3:00, I would smile so sweetly and say, "Ha ha ha, ha HA HA, I think I'll go HOME now." They all threatened me with much future suffering, but continued to allow me into their homes nonetheless. NOt only that, they fed me, listened to me, and held me close when my heart was broken and my body followed.
During that decade we visited with talking. Endlessly deep, profound and mundane conversations over coffee, stolen lunches out, when one child or another invariably slumped into her soup, sound asleep. When my parents went off on vacation, I would overrun their home and entertain the lot of them, husbands, wives AND children. I would make some Julia Child wonder of a meal, insist on no help and have everyone at the table together. The children would be bundled en mass onto my parents' bed, and the adults had hours to laugh, watch bad t.v. and discuss everything from politics to the dangers of the new something on the horizon called "Total phone" and the clunkiness of mobile phones. The best night was watching the Miss America Pageant and feigning disagreement over whether or not Miss Oklahoma's singing "I am Woman" while dressed in a ridiculously frilly apron and riding a tricycle trumped Miss Nebraska's attempt to sing "Send in the Clowns" while dressed as Bozo. I had served coq au vin with a magnicient four layer Boston Cream Pie (Made entirely from scratch) and flopped onto the couch, saying, "Someone peel me a grape." I was ignored.
Ten minutes later Andrea appeared with my mother's hexagonal silver tray with one peeled grape in its center.
It's the little things.
But our friendships were loud. We danced and had parties. We lounged by the pool, watching with one eye, the endless games of Marco Polo as toddlers grew to double digit children. I was the neighborhood silly mobile aunt. I loved it. I knew I should not have children with the back I'd been dealt. I did not have my first surgery until I was twenty-eight. I was diagnosed with severe problems at just 23. So I exercised like a fiend to avoid surgery. I did weights when it was not fashionable, and tried the weights machines, only to find that it made a difference that they were designed for men. I hurt myself. My PT guy said I was the only woman he'd ever met who overdid it in the pool to the point of injury.
What's this nonsense anyway about moderation being good? BULL.
I dreamed big. I Mean BIG. I would write the best novel ever and Oprah would have me on. I would be "Discovered" at a poetry reading by Coventry Lake. I would go to grad school and become an expert on Adult Learning, and write the definitive light reading books for adults--compelling and interesting, not glorified kids' books. So many dreams. My friends had them, too, and they were not so big. How was it, then, that my friend who spoke English as her second language got her masters in international accounting, and another became a nationally known and respected program director for Public Broadcasting, and another went to law school at thirty? I talked about the big dreams, and so did they, but when it came down to it, after all the talking and laughing and sharing, in my thirties I watched the others run after their dreams while I spent five years in hospitals, raising half-grown children in between the four to six-week stints? I felt my life slipping away, I thought. The noise seemed to die down, but not the chaos.
I did not lose these friends at all. On the contrary, I was the stay-at-home mom for my daughter's best friend. I was the one who would suddenly show up at whichever home "the gang was hangin" with a tray full of Slurpees® and a bright smile. As my son said, "It was impossible to, like, be that mad. I mean, you didn't stay. You sat down and you asked us about our days, brought the drinks and sometimes cookies and smiled and then left after fifteen minutes. And come back later because you forgot your wallet or something. You always forgot something."
I would smile at his recollection and then he'd say, "DAMN. You didn't forget, huh. But we NEVER knew if you'd come."
"Exactly."
The life was mundane and my pleasures were tiny, mostly. An unexpected hug from my son. Dinner time laughter that included Mark AND the kids. And, of course, hanging out with my friends for cookouts. Still, mostly we talked. And, sad to say, mostly I envied them their marriages, their vacations, their big homes. I felt that not only had I disappeared, but my family was not likely to move forward. Of course, it was my fault. I was disabled and brought in almost no money. I banked all of the kids', and used my own for necessities. I had no right to buy luxuries. The money was Mark's, not mine...
But somewhere along the line, I realized that I was not seeing my life. I had not held up the proper light to it. Others seemed to see me as a success. (Not my family, of course. There, my Aunt Joy summed it up when they were dissecting me as if I were absent. Joy said, "Well, Jean, she IS a wonderful mother. Let's give her that much.) My friends saw more, for which I am beyond grateful, but they told me I was either seeing myself and my life in a funny mirror, or I needed new light bulbs in my brain.
It began after the eight operation, when I was confined to bed because I had gotten up on my own to use the loo, and had lost my mind in a sea of blood in the bathroom. It was a new procedure, trying to avoid my normal hematomas. The fourteen inch incision was sutured very loosely so the pressure would not build, and blood could escape in a controlled way, but I went into the bathroom and, well, the thing exploded, splattering blood all around me and I had a flashback. My first. Right there and then, blood on porcelain and I was gone to another place. The sound. The sight. The fear. I remember nothing more.
I awoke tied to my bed, and life changed immediately. I did not then confront the flashback; it was too soon for that. Yet at last I knew that there was something to confront. As I looked next to me at my drug-addicted, far older roommate, a woman whose husband would come into the hospital and say, "Why don't you simply DIE, Annie, and help us all out?" .... as I looked at her, and looked back at my panic-stricken husband beside me, my life took on a new sheen. Our marriage felt strong and real. And I remembered something about Jessie.
One day she had come home with a papier maché daffodil from middle school art class. "I can't even show this to Mom or Dad. They'll laugh at it. I can't laugh at it. Jeannette, it's pathetic." Well, yes, it truly was. It had a stem the size of a Grecian column and a blossom the size of a thimble. It was lopsided and one leaf was fat and squat, the other tall and leaf-like. "She gave me a B out of pity and for the good leaf." There she stood, hair to her butt, one arm behind her back, the other holding this monstrosity toward me, eyes pleading for help.
"Well, Jess. I can't throw it out. My guess is you worked hard on it." Her tears were falling and she nodded. "I know, I'll put it on MY shelf in the closet and I'll think of you every day." She brightened up enormously, but every time she saw it in the closet she'd come out and look at me, shaking her head.
A couple of years later she said, "You really don't have to."
I always said, "I love it. Especially when I knock something near it and it falls on my head." She would laugh and kiss me.
But when the ceramic vase came home, lopsided and unevenly glazed, she begged me not to put in the living room. "No, REALLY Jeannette. You can't do it. There is nothing that you can make look okay in this. Nothing."
I'd said, "Trust me, honey. You wait." Jess ran into her room crying because she thought it would be humiliating.
I found some beautiful silk flowers and dried boughs of who knows what? I put it in the corner of the shelves, and you saw only the ruffled line of the lip of the shining forest green vase, and the curve of the base, and a profusion of delicate color, there in the center corner.
She looked at it and began to tear up and smiled, "You made something beautiful out of something ugly. You always DO that for me." And she hugged me, holding on longer than I did, and I was never as whole in my life. It was the sweetest compliment I'd ever known. An ordinary act of motherhood, I thought, seen through the eyes of an extraordinary child who did not know her power yet.
I lay in my hospital bed, tied down, thinking of her and a dozen other little sweet things that suddenly felt huge, and how I'd nearly blown up my marriage. And I apologized for the billionth time for the pain I had caused Mark, only this time he looked at me and said simply, "I want you home. I want you not to hurt so much. I can't reach where your pain is, Jeannette. It's always out of reach."
But he kissed it away just the same and I remember it as a series of the best kisses of our marriage.
Something changed. I was thirty-five and was about to learn the heaviest of life's lessons, but I began to listen to silence and look harder at the small things of my life. I stopped paying so damned much attention on the big successes of my friends, and looked at my small successes. I could stand when they told me I'd fall down. I was not an addict. And I was determined to stand STRAIGHT. I was able to do the laundry within two weeks, and for the first time in three years—I started dancing around like Rocky for the accomplishment. There, with no one to hear or see the mountain I had climbed, I danced.
Sometimes simply tying one's shoes is an extraordinary act. That's what I was showing Dad--that I could tie my shoes--while quietly and slowly the subject drifted away. I was always quiet with him toward the end. Noise confused him. But because I was happy to simply BE with him, I had the opportunity to meet the man behind the FATHER, even more than when we'd commuted together. He gave me the journal of his last months, a revelation of pain, selfish arrogance and humble regrets. Anyway, on this particular day, I'd told him how hard it had been to learn to do and how much harder it was to appreciate an act I'd done thousands of times, and he nodded. Then he said, "I've sung Ah Sweet Mystery of LIfe at Last I've Found Thee easily a thousand times. Why did I have to be dying to listen to the words? Love was next to me all my life, sweetie. Don't be like me. Mark hurt you. I know that. We know that. He isn't the man we thought he was. Dear, you can do anything. Listen to your words when you sing them. Listen to your life as you live it. Listen. I never listened." There were many small moments with them both, while they were consciously preparing to go. I'll save them for another time, but when they were gone, and we had bought our house, I began to garden.
The quietest thing I know, gardening. My friends gardened, too. Sometimes we would work together and say nothing, yet felt we had visited all the way through to our cores. Perhaps we had. We would be filthy, sweaty, make-up-less and aging. Yet sometimes I thought that Andrea was most beautiful with her hair unruly, her unmatching eyes glittering, her pale skin still shining from her sunblock. There seemed nothing ordinary to me about many of the flowers, especially peonies.
I mean really. Every peony is its own statement of life -- no, of LIFE, with flourishes of trumpet as well. Their coloring is as delicate as Dresden, but the flowers themselves? A subtle peony is an oxymoron. I was weeding in my lilac island when I thought about that one very early morning. I liked to weed when the sun still cast gold in the sky, there on the far side of my yard.
I was laughing at myself because I love their showiness, revealed only through the never-ending ordinary march of ants to soften their buds. Ants. What is more ordinary than an ant? The lilac island was my first garden, designed, planted, dug with my own hands out of the twenty-year-old perfect turf. My mother's and sister's favorite flower is the lilac and, since Jean Ellen lived here, I wanted to have my first garden be for her and for Mom, whose soul I had clearly channeled, against my will I tell ya, against my will! (I loathed gardening as a child, as I stood by her holding the trowel, the watering can, and some worms to put in the holes. Worms, it appeared, were the key to every garden success. They were the best thing about it all, because the rest of gardening seemed the most boring thing in the world. Put in some nameless tiny green thing and when you were done? It looked like a limp clump of weed. And a clump of junk we had to be careful not to let the kick- soccer- foot- or baseball get into.)
So I chose four different lilac varieties, then found the Miss Kim, and realized that I could have a whole month of lilac blooming with one of those, if they did not all bloom at once because of a hot spell. And I had to admit that subtlety had not been what I was going for here, either. The double blossom shrub was nearly bent to the ground from the weight of the eight-inch long pregnant blossoms.
That season we had had a hot spell, though, and I saw that every single bush was budded, from the doubles of the deepest violet bush to the white. None were in bloom, but they would be any moment. Oh, well. I shrugged and decided how beautiful our enormous vases would be with five shades of blooms, if only for a few days.
I shook my head a moment because a decade before I had planted them too close together, and had actually put a peony plant in there, not realizing how big both got. A common mistake for new gardeners. Furthermore, lilac island across from an open field, so nameless horrid weeds invaded all the time, including the Chinese vine I SHALL NOT NAME. I call it KUJO, for the killer dog. I had just finished wrestling one 20-foot obsenity out by its roots from the very center of my "grove", and had removed, painfully, no fewer than EIGHT thistle plants when, as I unbent my body to breathe, I heard the rain. I looked up and the sky was blue with the barest hints of rose and gold on the horizon.I stood very, very still; stunned, in fact. Gentle rain engulfed me, yet all was dry.
"A miracle?" I asked aloud.
No. An ordinary act of nature, the sound of lilacs blooming.
Clearly, though, I should have answered, "Yes."
This quote was used as part of Pauline's Writing Down the Words: January 28 entry That particular quote made me remember the role that gardening has played in so much of my healing time of the last twenty years, the years of home ownership, and visiting without words.And it reminded me of the extraordinary friendships forged around ordinary routines.
When I was in my twenties I did a great deal of visiting over toddlers and folding laundry. I was single; my friends were not. (See "Laundry Eagles" for an understanding of what I mean.) I was a thoroughly obnoxious sort of friend. I'd watch their children for an hour or two when they had errands to run, hang around to help unload the groceries, the laundry, whatever and, when the little ones began to implode along around 3:00, I would smile so sweetly and say, "Ha ha ha, ha HA HA, I think I'll go HOME now." They all threatened me with much future suffering, but continued to allow me into their homes nonetheless. NOt only that, they fed me, listened to me, and held me close when my heart was broken and my body followed.
During that decade we visited with talking. Endlessly deep, profound and mundane conversations over coffee, stolen lunches out, when one child or another invariably slumped into her soup, sound asleep. When my parents went off on vacation, I would overrun their home and entertain the lot of them, husbands, wives AND children. I would make some Julia Child wonder of a meal, insist on no help and have everyone at the table together. The children would be bundled en mass onto my parents' bed, and the adults had hours to laugh, watch bad t.v. and discuss everything from politics to the dangers of the new something on the horizon called "Total phone" and the clunkiness of mobile phones. The best night was watching the Miss America Pageant and feigning disagreement over whether or not Miss Oklahoma's singing "I am Woman" while dressed in a ridiculously frilly apron and riding a tricycle trumped Miss Nebraska's attempt to sing "Send in the Clowns" while dressed as Bozo. I had served coq au vin with a magnicient four layer Boston Cream Pie (Made entirely from scratch) and flopped onto the couch, saying, "Someone peel me a grape." I was ignored.
Ten minutes later Andrea appeared with my mother's hexagonal silver tray with one peeled grape in its center.
It's the little things.
But our friendships were loud. We danced and had parties. We lounged by the pool, watching with one eye, the endless games of Marco Polo as toddlers grew to double digit children. I was the neighborhood silly mobile aunt. I loved it. I knew I should not have children with the back I'd been dealt. I did not have my first surgery until I was twenty-eight. I was diagnosed with severe problems at just 23. So I exercised like a fiend to avoid surgery. I did weights when it was not fashionable, and tried the weights machines, only to find that it made a difference that they were designed for men. I hurt myself. My PT guy said I was the only woman he'd ever met who overdid it in the pool to the point of injury.
What's this nonsense anyway about moderation being good? BULL.
I dreamed big. I Mean BIG. I would write the best novel ever and Oprah would have me on. I would be "Discovered" at a poetry reading by Coventry Lake. I would go to grad school and become an expert on Adult Learning, and write the definitive light reading books for adults--compelling and interesting, not glorified kids' books. So many dreams. My friends had them, too, and they were not so big. How was it, then, that my friend who spoke English as her second language got her masters in international accounting, and another became a nationally known and respected program director for Public Broadcasting, and another went to law school at thirty? I talked about the big dreams, and so did they, but when it came down to it, after all the talking and laughing and sharing, in my thirties I watched the others run after their dreams while I spent five years in hospitals, raising half-grown children in between the four to six-week stints? I felt my life slipping away, I thought. The noise seemed to die down, but not the chaos.
I did not lose these friends at all. On the contrary, I was the stay-at-home mom for my daughter's best friend. I was the one who would suddenly show up at whichever home "the gang was hangin" with a tray full of Slurpees® and a bright smile. As my son said, "It was impossible to, like, be that mad. I mean, you didn't stay. You sat down and you asked us about our days, brought the drinks and sometimes cookies and smiled and then left after fifteen minutes. And come back later because you forgot your wallet or something. You always forgot something."
I would smile at his recollection and then he'd say, "DAMN. You didn't forget, huh. But we NEVER knew if you'd come."
"Exactly."
The life was mundane and my pleasures were tiny, mostly. An unexpected hug from my son. Dinner time laughter that included Mark AND the kids. And, of course, hanging out with my friends for cookouts. Still, mostly we talked. And, sad to say, mostly I envied them their marriages, their vacations, their big homes. I felt that not only had I disappeared, but my family was not likely to move forward. Of course, it was my fault. I was disabled and brought in almost no money. I banked all of the kids', and used my own for necessities. I had no right to buy luxuries. The money was Mark's, not mine...
But somewhere along the line, I realized that I was not seeing my life. I had not held up the proper light to it. Others seemed to see me as a success. (Not my family, of course. There, my Aunt Joy summed it up when they were dissecting me as if I were absent. Joy said, "Well, Jean, she IS a wonderful mother. Let's give her that much.) My friends saw more, for which I am beyond grateful, but they told me I was either seeing myself and my life in a funny mirror, or I needed new light bulbs in my brain.
It began after the eight operation, when I was confined to bed because I had gotten up on my own to use the loo, and had lost my mind in a sea of blood in the bathroom. It was a new procedure, trying to avoid my normal hematomas. The fourteen inch incision was sutured very loosely so the pressure would not build, and blood could escape in a controlled way, but I went into the bathroom and, well, the thing exploded, splattering blood all around me and I had a flashback. My first. Right there and then, blood on porcelain and I was gone to another place. The sound. The sight. The fear. I remember nothing more.
I awoke tied to my bed, and life changed immediately. I did not then confront the flashback; it was too soon for that. Yet at last I knew that there was something to confront. As I looked next to me at my drug-addicted, far older roommate, a woman whose husband would come into the hospital and say, "Why don't you simply DIE, Annie, and help us all out?" .... as I looked at her, and looked back at my panic-stricken husband beside me, my life took on a new sheen. Our marriage felt strong and real. And I remembered something about Jessie.
One day she had come home with a papier maché daffodil from middle school art class. "I can't even show this to Mom or Dad. They'll laugh at it. I can't laugh at it. Jeannette, it's pathetic." Well, yes, it truly was. It had a stem the size of a Grecian column and a blossom the size of a thimble. It was lopsided and one leaf was fat and squat, the other tall and leaf-like. "She gave me a B out of pity and for the good leaf." There she stood, hair to her butt, one arm behind her back, the other holding this monstrosity toward me, eyes pleading for help.
"Well, Jess. I can't throw it out. My guess is you worked hard on it." Her tears were falling and she nodded. "I know, I'll put it on MY shelf in the closet and I'll think of you every day." She brightened up enormously, but every time she saw it in the closet she'd come out and look at me, shaking her head.
A couple of years later she said, "You really don't have to."
I always said, "I love it. Especially when I knock something near it and it falls on my head." She would laugh and kiss me.
But when the ceramic vase came home, lopsided and unevenly glazed, she begged me not to put in the living room. "No, REALLY Jeannette. You can't do it. There is nothing that you can make look okay in this. Nothing."
I'd said, "Trust me, honey. You wait." Jess ran into her room crying because she thought it would be humiliating.
I found some beautiful silk flowers and dried boughs of who knows what? I put it in the corner of the shelves, and you saw only the ruffled line of the lip of the shining forest green vase, and the curve of the base, and a profusion of delicate color, there in the center corner.
She looked at it and began to tear up and smiled, "You made something beautiful out of something ugly. You always DO that for me." And she hugged me, holding on longer than I did, and I was never as whole in my life. It was the sweetest compliment I'd ever known. An ordinary act of motherhood, I thought, seen through the eyes of an extraordinary child who did not know her power yet.
I lay in my hospital bed, tied down, thinking of her and a dozen other little sweet things that suddenly felt huge, and how I'd nearly blown up my marriage. And I apologized for the billionth time for the pain I had caused Mark, only this time he looked at me and said simply, "I want you home. I want you not to hurt so much. I can't reach where your pain is, Jeannette. It's always out of reach."
But he kissed it away just the same and I remember it as a series of the best kisses of our marriage.
Something changed. I was thirty-five and was about to learn the heaviest of life's lessons, but I began to listen to silence and look harder at the small things of my life. I stopped paying so damned much attention on the big successes of my friends, and looked at my small successes. I could stand when they told me I'd fall down. I was not an addict. And I was determined to stand STRAIGHT. I was able to do the laundry within two weeks, and for the first time in three years—I started dancing around like Rocky for the accomplishment. There, with no one to hear or see the mountain I had climbed, I danced.
Sometimes simply tying one's shoes is an extraordinary act. That's what I was showing Dad--that I could tie my shoes--while quietly and slowly the subject drifted away. I was always quiet with him toward the end. Noise confused him. But because I was happy to simply BE with him, I had the opportunity to meet the man behind the FATHER, even more than when we'd commuted together. He gave me the journal of his last months, a revelation of pain, selfish arrogance and humble regrets. Anyway, on this particular day, I'd told him how hard it had been to learn to do and how much harder it was to appreciate an act I'd done thousands of times, and he nodded. Then he said, "I've sung Ah Sweet Mystery of LIfe at Last I've Found Thee easily a thousand times. Why did I have to be dying to listen to the words? Love was next to me all my life, sweetie. Don't be like me. Mark hurt you. I know that. We know that. He isn't the man we thought he was. Dear, you can do anything. Listen to your words when you sing them. Listen to your life as you live it. Listen. I never listened." There were many small moments with them both, while they were consciously preparing to go. I'll save them for another time, but when they were gone, and we had bought our house, I began to garden.
The quietest thing I know, gardening. My friends gardened, too. Sometimes we would work together and say nothing, yet felt we had visited all the way through to our cores. Perhaps we had. We would be filthy, sweaty, make-up-less and aging. Yet sometimes I thought that Andrea was most beautiful with her hair unruly, her unmatching eyes glittering, her pale skin still shining from her sunblock. There seemed nothing ordinary to me about many of the flowers, especially peonies.
I mean really. Every peony is its own statement of life -- no, of LIFE, with flourishes of trumpet as well. Their coloring is as delicate as Dresden, but the flowers themselves? A subtle peony is an oxymoron. I was weeding in my lilac island when I thought about that one very early morning. I liked to weed when the sun still cast gold in the sky, there on the far side of my yard.
I was laughing at myself because I love their showiness, revealed only through the never-ending ordinary march of ants to soften their buds. Ants. What is more ordinary than an ant? The lilac island was my first garden, designed, planted, dug with my own hands out of the twenty-year-old perfect turf. My mother's and sister's favorite flower is the lilac and, since Jean Ellen lived here, I wanted to have my first garden be for her and for Mom, whose soul I had clearly channeled, against my will I tell ya, against my will! (I loathed gardening as a child, as I stood by her holding the trowel, the watering can, and some worms to put in the holes. Worms, it appeared, were the key to every garden success. They were the best thing about it all, because the rest of gardening seemed the most boring thing in the world. Put in some nameless tiny green thing and when you were done? It looked like a limp clump of weed. And a clump of junk we had to be careful not to let the kick- soccer- foot- or baseball get into.)
So I chose four different lilac varieties, then found the Miss Kim, and realized that I could have a whole month of lilac blooming with one of those, if they did not all bloom at once because of a hot spell. And I had to admit that subtlety had not been what I was going for here, either. The double blossom shrub was nearly bent to the ground from the weight of the eight-inch long pregnant blossoms.
That season we had had a hot spell, though, and I saw that every single bush was budded, from the doubles of the deepest violet bush to the white. None were in bloom, but they would be any moment. Oh, well. I shrugged and decided how beautiful our enormous vases would be with five shades of blooms, if only for a few days.
I shook my head a moment because a decade before I had planted them too close together, and had actually put a peony plant in there, not realizing how big both got. A common mistake for new gardeners. Furthermore, lilac island across from an open field, so nameless horrid weeds invaded all the time, including the Chinese vine I SHALL NOT NAME. I call it KUJO, for the killer dog. I had just finished wrestling one 20-foot obsenity out by its roots from the very center of my "grove", and had removed, painfully, no fewer than EIGHT thistle plants when, as I unbent my body to breathe, I heard the rain. I looked up and the sky was blue with the barest hints of rose and gold on the horizon.I stood very, very still; stunned, in fact. Gentle rain engulfed me, yet all was dry.
"A miracle?" I asked aloud.
No. An ordinary act of nature, the sound of lilacs blooming.
Clearly, though, I should have answered, "Yes."
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.
Thursday, June 18, 2009
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.
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.
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