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!

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.

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.

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.