My Piano and Surgery-Recovery Fund
- Personal Progress Reports
- Xrays, Cats, MRIs
- About my not having a piano
- I manually updated this page on Feb 24, 2016
Or: please send personal checks, money orders payable to Jessica Williams:
Above all, you and I and the whole world are lucky to be alive and together, and I am so lucky to have your presence here. Thank you for your gift of any size, your consideration, and your love.
My most recent xrays. Click thumbnails for larger view. Images taken from the medical-disc by me using Osirix for the Mac.
- L5-S1 posterior interbody fusion and posterior fusion
- L4-5 lateral extracavitary arthrodesis
- L4-L5-S1 pedicle screws
- Posterior posterolateral fusion, L4-5
- Smith-Peterson osteotomy, L4-5 and L5-S1 (additional surgery needed to preserve nerve pathways after the removal of pounds of scar tissue and nerve root adhesions)
- Neuroplasty, adhered nerve root, L5-S1
- lnterbody cage, L4-5 and L5-S1
- Bipedicled paraspinal trunk flap (not enough muscle and tissue to close)
- 3 Laminectomies plus foraminotomies and medial facetectomy L4-5
Report: updated Feb 1 2016:
During and after my back surgery, I had to "jettison" some of my personal possessions for financial reasons. Among them was my piano. So now I am using an NU-1 Yamaha electric, which is nice, but certainly not a real piano by any stretch. I have received numerous donations so far for my piano fund. I am saving every penny to put towards it. If ever there was a woman in need of a piano, it is I. "Imperative" is too small a word. Thank you, from my heart. Please donate here
Report: updated Aug 26th, 2015:
I had a dream last night. I was lost in a forest. The trees and plants and flowers were all so very beautiful that I wanted to sing. I heard the song in my head. So I opened my mouth to sing but no sound would come out. I tried and tried, but finally a squeak emerged, a strangled, gurgling squeak. I was horrified and then woke up crying.
In reality, I have had laryngitis for over three weeks. And then last night I have this dream, and I thought it was just about having laryngitis. But when I told my husband of my dream, my voice was clear and unconstrained for the first time in weeks! After he thought about my dream for awhile, he said, "Jessica, it was a dream about you needing a piano. You feel as if your voice has been silenced, and it has. Your true voice was always the piano. You've had one piano or another at least available to you for the past 60-plus years. Your voice is silenced without a piano."
My husband, as usual, is correct. I have not told anyone as I was rather ashamed of the fact. But I didn't cause my back problems, living did. I didn't cause our own financial ruin—between the crumbling financial system here, the exorbitant prices for rent and food, and the hideous cost of hospitals and drugs and doctors and the entire menagerie of what is cunningly (and wrongly) described as "health care" in America, I am penniless.
Perhaps more importantly, I am also piano-less.
If I had a piano I could begin to play and work again. If you could, please donate. I feel as if there is a hole where my heart should be. I humbly ask: If you can, please donate for my piano fund, which is also a way of helping me get healthy again and climb back out of this very precarious and dangerous hole I have fallen into. You can donate here with PayPal or your credit card. Or send checks or money orders to: Jessica Williams, PO Box 2391, Olympia, WA 98507. Thank you.
Report: updated August 1st, 2015:
Still looking for work, my husband and I. A very tenuous, stressful time. I'm so lucky to have so many friends and, of course, my guy. 27 years now together!
Report: updated July 1st, 2015:
I'm ready. Ready as I'll ever be. I can play. If my foot falls off the pedal, let it. I can't get a gig to save my life! Let me know if you would like to put on a concert.
Report: updated June 1st, 2015:
I was walking through Safeway, carefully, with my husband. I was holding his right arm. He has big muscles and it makes me feel secure. My right foot somehow hit the back wheel of our shopping cart and I did a little mazurka in mid-air to stay aloft. Came down on left foot, bang, then right, then hobbled out. This was four days ago. I still am getting bed rest. Did I need this? Now? C'mon, Universe. Stop playing me!
I'm pretty sure I pulled a muscle or strained a disk, very probably L-3. The metal pins and screws and rods in my back were put there by Dr Rooney who was a very strong guy so I'm sure he tightened all the nuts and bolts properly. He told me later that unless I get hit by a truck it should last for the rest of my life. This I hope: no trucks. Meanwhile I get to hear the lunacy that passes as music these days on the radio, and watch some more old movies. We saw "The Bachelor and the Bobby-Soxer" last night—it starred Cary Grant, Shirley Temple, and Myrna Loy. We loved it.
Small accidents are bound to happen. I just have to be very careful. And hope that it's just muscular.
Report: updated April 2nd, thru April 25th, 2015:
Went to the surgeon for a check-up and x-rays. My husband drove me 75 miles to get me there.
Alas, no x-rays to post. No check-up. I received a sales pitch and a few homilies, some slogans, an admonishment, and about eight minutes with the doctor. He seemed vexed, but not at me—just very distracted and unfocused. But eight (8) minutes!? Then I was shuffled off to make way for the next patient. My unsolicited advice to some (but not all) back pain sufferers: at some point, you may want to cut your surgeons loose. Too many of them want you back where you were so they can get you back on the table or enrolled in a "fitness program". More than a few of them have very high opinions of their own opinions, and enjoy extravagant lifestyles that we make possible with our "illness".
If you're walking, playing, loving, and functioning, even if you're not back to "where you were", think of this: where you were is now the dead past. Where you are is where you begin to get where you want to go.
If you hear anyone tell you that you have DDD, and therefore you need to jump up and down and run around in circles and lift weights and climb mountains, walk away. They often have some ridiculous program with a name like Get your Back Back or something similarly commercial. They may write books about their "plan" and go on talk shows or Dr OZ. And all of this will be really expensive and it will hurt you and whatever is left of your bank account. I may not be the brightest bulb on the tree but I know when I'm being set-up for fleecing. I'm taking my life back because it belongs to me. And I intend to do what I want to do when I want to do it. I'm not here to please. I'm here to do my job, be myself, touch a few lives, be a good wife, a good person . . . and then sign off. No games.
Beyond that, I'm doing better. My personal healing is based on three things. #1 is having love all around me. No bad music, bad movies, bad food, or bad ideas. #2 is feeling good and controlling pain. RSO and CBD Oil are now legal in over 20 states plus 40 countries, and these oils make me feel good, and when I feel good, there's music and love and joy and awareness. And #3 is to only let in what and who I choose to let into my life. There's some super-good people in this world. And there are some of the other kind, too. Chop off the dead wood.
Every life has bad days, and some bad days are legendary bad days. But there are too many good ones to jump ship yet. Life can turn from bad to good like night turns to day. And it helps to laugh and stay as positive as possible.
None of this pays the rent but it helps to "climb out of the pit". I like the sun. You wonderful people have helped me all this time by providing a ladder up the walls. I'm getting there, with a little help from my friends.
Also, a special thank you to Donald D., Andrea P., Ronald J., Jim H., and Malcolm S., who are all great people and fine friends. And thank you ALL for your love and assistance.
- Music, love, peace, and sanity, Jessica - Apr 25th, 2015
Report: updated March 24th, 2015:
Going to neurosurgeon today for exam, including x-rays. I hurt my back when I fell a few weeks ago and my nerves are sensitive around adjacent spine segments. I'll report here on the outcome and films next week as it takes the lab time to do their thing and send me the results, including the x-rays. I use Osirix on my Mac to read the med-files and pictures like x-rays and CT scans. See above for follow-up results.
Report: updated March 7th, 2015:
A certain amount of pain remains. It will hopefully improve over time. Meanwhile I deal with one day at a time. I will always do my best, and always aspire to be better. That is just me, who I am.
I am still dependent on donations (I get Social Security and "special help" from my state government, which amounts to under $700 a month), but, as I said, things change. Because of your help, I've eaten well and kept a roof over my head. Many people believe I must be very rich (I am not, I assure you).
MUSIC and ART and LITERATURE, all of the "humanities" . . . they make a civilization whole. They bring people together and expand their hearts and minds. They are the life-blood of our world. They are the stories and songs and pictures of our species. They help to make us ONE people, ONE race. I figure I'm needed (although many would disagree) and it is time to make a contribution. So all I can do is say thank you, and remind you that rain and storm clouds often go right along with sunshine and joy. Thank you so much for your continued help!
Report: updated Feb 21st, 2015:
As for the object of this log, my back, there is little to say. It hurts, but I am used to a bit of pain. A triple level lumbar fusion with imbedded instrumentation is no picnic, ever. It's hard to keep my spirits up sometimes because my business is crashing, my rent was just raised, and my career feels like it's over. On good days, I feel optimistic and hopeful. I choose hope—there's life there. I always try to go in that direction. Towards hopes and dreams. And I try not to worry, and show patience, and stillness of mind.
Report: updated Feb 3, 2015:
Today I have a bit of depression which is probably normal—because I have had the flu pretty bad, and because I am quitting a drug called zolpidem, a sleep aid. My back is doing better but still I hurt myself sometimes by moving in the wrong ways. It's something I live with.
But the next steps are daunting: getting back to playing, finding a new place to live (yes, we still rent and it is a bummer but we never did get enough money together all at once to buy a house), hoping my husband Duncan can find work doing just about anything (I'm 66 and he's 64, and there is ageism out there as well as other isms) . . . all these things weigh heavily on me. We live on our combined Social Security which is very difficult.
Many things have transpired since the fusion operation. An operation like this will change your life, in good ways, bad ways, miraculous ways, confusing and challenging ways. "Can I fly in an airplane again? How can I play without tapping my feet? Will people still respond with love and acceptance? Will they like my new music, a music changed by years of pain, growth, and self-examination?"
I remember the first time I saw Herbie Hancock play with Miles Davis. It was the band that included Tony Williams, Wayne Shorter, and "The Professor", Ron Carter. They were playing tempos at quarter-note equals 600. And no one, NO ONE on that stage tapped their feet. So I've got that end covered. My time comes from my soul and my heart, not my feet. No more foot-tapping. It hurts my back and anything that hurts my body doesn't serve me or the world.
As far as flying in airplanes again: if I can, I will. If I can't, I'll make music anyway. I won't stop nor will I let anything or anyone stop me. There is great spiritual and sacred power in music. It is powerful medicine. I always "play to the highest". If someone talks to me that no one else likes, I "play to the highest". If a situation is just plain awful, I still "play to the highest". There are dreams beyond limitation. I will always seek my dreams, no matter the limitations. Will people like my new music? I don't hunch over the keys anymore like Bill Evans did. I don't play with my back muscles or try to use upper-body strength. I don't play "licks" anymore. I play from heart-power, soul-power. And the muscles? My fingers, my wrists, and my INTENTION. I can only create what I hear, and I hear different music now.
I care deeply about the people that made my music such a joy to give to them. I have to do my best and try my hardest. I believe in each second of life. And in that, nothing is impossible.
Report: Dec 5th, 2014:
I played more today than I often do (at home) and realized just how much The Music means to me. It fills me. It is my way of speaking my Truth, in a Universal language. Today my playing was very centered and perhaps spare, but I've come to dislike un-needed flourishes and filler. It's like that old "Hamburger Helper" stuff. Not pertinent.
As I always aspire to turn the negative into the positive, I know that I've grown so much while in recovery from the back operation. We should never stop growing and changing and reaching. I'm very optimistic sometimes. The mornings are the hardest, and the evenings are much easier. I worry about money, paying the rent. Too much worry. When I lived in Copenhagen, I saw how their social system worked. High taxes? Oh, yes. But no homeless folks, no starving poor, and no life-long striving and worry about money. Sometimes I wish I had stayed, but so much would NOT have happened, and America is the land of potential. I still love it, and want to continue to contribute to the arts . . . and I want to continue to make new friends and to help other people. Thank you all for the donations. I am so grateful. And I can do a house concert now and again. I may even try a long-haul. I must test myself to find my limits.
I put some new pictures of me on my Flickr page, taken by my husband in a Fred Meyers store.
Report: Dec 1st, 2014:
At this point I think it would be helpful to play a few concerts. Trouble is, I am having great difficulty finding work. This could be for any number of reasons, but I think it's mainly a very busy time of year, and also—it seems that most people have very little money to spend on non-essentials. Music may be the new non-essential to some, but to me, I can't imagine life without it. So I try every day to get up, clean up, comb hair, put makeup on, dress nicely, and send out emails and make phone calls. I have to "slog through" this process sometimes, but I think my whole day feels better after doing it. I'm feeling better than the last report I made, except to notice that there is a pain around L1-L2, and this is of some concern. Right now I think it's best to go slow, drink lots of water, get lots of sleep, and try to think positively! Again I should mention: If you have any house-concerts in the Washington State area for me to get my feet wet in, email me or call me. I've been practicing, writing new tunes, learning new ones and old ones.
Report: Nov 20th, 2014: I've been feeling really, really tired and "out of it". Short of breath, weak, cold, and sleepless. I have quite a bit of stress financially and I try to deal with it by staying busy. But the last several weeks, I've stayed in bed a lot. I thought it was depression, but it turns out that I'm anemic, and still "in recovery". I went to a naturopath in the town I live in and had a very different kind of experience. She felt that I had experienced an extreme shock to "all systems". My nervous system, my circulatory system (I had 'died' 3 separate times while that surgery was underway), my cardiovascular system (I now have a-fib quite often), my immune system (causing my hypothyroidism and psoriasis and Meniere's Disease to all "flare up"), and my limbic system (foggy thinking, tremors, slow to react), and every other system just sort of crashed. And so I'm still in recovery. I do feel like I have PTSD or something. I was very high for a long time on the pain meds, and I used ambien to get me to sleep, but when I came off of those drugs, reality started to set in. And I feel kind of lost, adrift, without purpose.
So I'm resting right now. I caught the flu, of course, and it settled in my lungs. Of course. So I have move around to avoid pneumonia. Other than that, I am down for awhile. I wish I could say otherwise, but my back still hurts. Not nearly as bad as it did, but a three-level fusion is often fraught with trouble. More later.
Report: Nov 5th, 2014:
I have an ache around the L2-L3 area so I try not to sit for too long. This is indicative of Adjacent Segment Disease. Arthritic conditions and dryness in the nucleus pulposa (the discs) make for trouble in many who've had this brutal operation. I drink quarts of water daily and this helps. But now the rain-snow season is here and the cold is not my friend. Both large toes also hurt, the right more than the left. This is also a sign that some of the nerves which have come on line are damaged. So wearing socks to bed won't work (even the pressure of the blankets on my toes is enough to keep me awake. I've come to chant this Litany: "Pain is in the brain. Control the brain and you control the pain." This does not always work, but it's better than being whacked on Norco (10mg vicodin). When I'm awake, the toes stop hurting as severely, but I have "drop-toe" on the right foot, which can cause one to stumble or shuffle. No more barefoot Contessa. Having drop-toe is better than having drop-foot, which renders a limb near-useless.
And that's the reality of this operation. If you whine about what you have lost you will whine until you die. If you compare results with other much less fortunate people, you will feel better. I feel blessed for having lived through it and for being functional for at least 7-8 hours a day. Then I am tired out but I carry on. And I can play! I'm looking for work actively. Music seems to be stifled lately, perhaps by both the political climate and the devaluation of art in the US. But people still miss it and so do I. House concerts, anyone? Call or email me
Report: Oct 6th, 2014:
Enough progress reports. I feel like I'm in the Witness Protection Program. I'm ready to play. The more I play, the better I'll feel. The better I feel, the better I'll play. If you have any house-concerts in the Washington State area for me to get my feet wet in, email me or call me. I'm ready. I've been practicing, writing new tunes, learning new ones and old ones. Let's start making people happy again!
What keeps me going? I figured it out at last . . . read about it (and you) here
Do I still hurt? I probably always will. Life goes on and I go on with what my job here is: to make music, make ripples in the Universe, make people happy, and to help people access their feelings and longings . . . in doing that, it helps me to access my own inner peace.
Report: September 1st, 2014:
You must be aware of the theft of my music and money in royalties by corporate entities like Google and Amazon and iTunes. I am hardly alone, as musicians much more well-known than myself would substantiate. That is enough for my economic report.
And about my physical realities . . . yes, there's pain, and sometimes there's not. I was 121 pounds only 4 months ago! Now, at 138, I'm starting to look good again. I actually look younger. Pretty, even! And I won't take Vicodin or Norco. I meditate. I don't watch the news.
I am determined to overcome as many limitations as possible. The operation I had was no small feat. I found that I actually died several times during it. I am so fortunate to have had a fine neurosurgeon considering the laundry list of things he had to do. I wrote 5 new songs last week and am getting ready to release some recordings of this material.
I may not be totally well yet, but I am one lucky girl to even be here. Life is a wondrous and glorious adventure, with no guarantees. We pay our money and we take our chance. I've taken many chances and regret nothing . . . and, speaking of money, thank you all for continuing to help. I would be literally dead without your help. Honest. You can donate here or buy CDs here. Either way, you're helping. That is the kindest, most gentle, most compassionate thing one human can do for another.
Report: August 12th, 2014:
Keeping one's eye on the prize, the ability to respond to adversity with confidence and optimism, the determination to stay creative and high-functioning in the face of obsolete assumptions and negative programming: that's the challenge for me and for all of us. You are probably not a billionaire and neither am I. The idea that only money can solve all problems is flawed. We are faced with limitations, and this happens to even the wealthiest of us. When I hear that something is impossible or that there "no options", I react by thinking outside of the boxes created by doctors and experts and "people who know things". It is very clear that doctors, at least in America, have "cookie-cutter" ideas, and they are programmed to regurgitate these ideas to their patients as "facts", or at least as probabilities. This causes morbidity, pain, sickness, and death. It also involves the transfer of huge sums of money to doctors, hospitals, health care franchises, insurance companies, drug companies, and billionaires.
I spoke with a doctor today (un-named here) who told me that no one, I repeat—no one ever fully recovers from a three-level lumbar fusion, particularly when the scenario is complicated by my own "disease picture" and the procedures done in my lengthy surgery:
- 1. L5-S1 posterior interbody fusion and posterior fusion
- 2. L4-5 lateral extracavitary arthrodesis
- 3. L4-L5-S1 pedicle screws
- 4. Posterior posterolateral fusion, L4-5
- 5. Smith-Peterson osteotomy, L4-5 and L5-S1
- 6. Neuroplasty, adhered nerve root, L5-S1
- 7. lnterbody cage, L4-5 and L5-S1
- 8. Bipedicled paraspinal trunk flap, not enough muscle/tissue to close
- 9. Triple Laminectomy with foraminotomies and medial facetectomy L4-5
Lots of stuff. So I'm supposed to quit? And this, I refer to as programming. "You're mom and dad died both at 70 from cerebral hemorrhages? You, also, will certainly die at 70 of a related condition." That is programming. "No one ever fully recovers from a three-level lumbar fusion." That is programming.
I am tired of being programmed. I am practicing every single day. I am working on new music. At 66 I am not dead nor do I have any intention of fulfilling such nihilistic prophecy soon. I've said this here before:
“When you change the way you look at things, the things you're looking at will change." It sounds like the new quantum physics, and it is to some extent. I sense the truth of it. The way we decide to view our experiences determines our futures and our happiness—or lack there-of. I see this as a teacher, and I am always learning. Suffering teaches as well as joy, and it has been a ride. Terrible and wonderful. Often, disease can change a life for the better. I sense this is true in my case, that the suffering has taught me a lot about who I am and my ability to become better, and aspire to higher levels of achievement.
As far as "brass tacks", pain is a daily companion, but so it is with many of us. It's manageable. I have my husband, who is a gem of a man. I have my little dog Angel, who is a gem of a dog. And I have my music, which springs from my whole self. Me. I am fully, totally, constantly myself, always evolving, always changing, always growing and learning.
Poo on programming!
Report: August 7th, 2014:
I've felt pretty OK for the past week or so. A lot of my hair fell out. A friend said that it was probably a delayed reaction from all of the drugs and anesthesia used on me. I didn't freak. Still enough hair to get by. It should be as long as it was by the time I'm 86. (I'm 66 now.) I think I'm being very strong about this. I would have gotten very depressed just a few years ago. But it's only hair. It'll grow back. Or not. Maybe my self-confidence is so much better because I'm not in the public eye at all, now. I think I could make two solo sets, but no work is there. And I guess the Universe is telling me to wait. My back is doing a little better and I sleep pretty well, but I still can't put my shoes or stockings on. My feet are numb, but I can walk! Some days are bad, some good. The biggest stress is where do I live? I don't have an income, don't get any money for my past music, don't own a house. I rent. And the rents are going up up up. Food prices are ridiculous. I'm concerned about that. That's all for now . . .
Report: July 17th, 2014:
I was hoping to be able to get on airplanes again and fly to the four corners of the earth and play my music. But I get tired and start to hurt after I'm up for 6-8 hours, and in my job as jazz musician, I was up and running like a mad-woman for 36 to 48 hours. No food. Just adrenaline. Plus I can't play nearly fast enough to compete with the new breed. They're amazing. Very physical. Some do karate or weight-lifting on the side. I grew up and played with people like Philly Joe and Charlie Haden, Stan Getz and Eddie Harris. We were strong in our music, but none of us were athletes. I'm learning my limitations. I'm 66 and wondering what my future holds. Maybe I can just make more music and release it on-line. But now that the corporations own my music I don't get a cent for even my compositions (see this) and I get ridiculous checks from Google (see this) for 0.02 cents. The biggest was for 0.04 cents.
(I found out that the down feelings are due to not enough thyroid medication. The doctor increased my dose and I feel optimistic and happy again. The thyroid controls everything in the body, including mood.)
I may have stated in a recent report that I do have a movie contract for the music for CYBER, a 2015 Legendary Films/Full Pursuit Films with distribution by Universal Studios. I am thinking that this may be much more than one single opportunity. I work with a team, get to use music software, and get to write for larger orchestras. Movie music is quite different from other forms. It must enhance the action, not interfere. Music is a prime ingredient in a movie's successful flow. This is exciting to me.
So still I wait, rest, exercise, play piano, try to eat well (thanks to all of you) and have hope and optimism. I am aspiring to another step in my musical odyssey. I am quite happy with the many cds I've released so far. Thank you all for the help and the love you send me.
Report: Jun 24th 2014:
A fellow wrote to me asking what my emotional state was.
I think I am pretty well-balanced, considering. I've lost motor facility in both feet starting 6 inches below the knees (paraesthesia) and have developed a drop foot, even a drop-toe, on the right appendage. This means that unless I consciously raise my feet or toes, I'll catch the carpet and fall down or hurt myself otherwise. So I wear loose shoes—even indoors—and this helps prevent that. Everything is worse at night, and this is no exception. It's 3.15 am right now and I've tried and failed to sleep. It presently feels as if razors are being sliced into the soles of my feet. So here I am writing while I should be sleeping. I also have a fanciful form of RLS, which causes my whole torso to quake as if from a suddenly-administered electric shock, at seemingly equally-distanced intervals. About every 75 seconds . . . this also renders sleep an inaccessible luxury.
The same fellow also asked me if I was alone, or if I had help.
And in that I am fortunate. I have my dear husband Duncan, who makes times like this bearable. If we go to store together I hold onto his arm for dear life. My feet usually hurt and often my walking is not my best. He showers me when I cannot, and he puts my shoes on for me. He puts my precious dog on the bed so I can play with her (Angel, the Boston Terrier). And he lifts her down to take her potty. He does a lot. I love to cook and often do, but when I can't, Duncan the Master Chef is on the case.
And the very same fellow asked that I publicly reveal my financial status.
This is delicate and difficult in an on-line atmosphere, but you, my friends and fans have helped me so very much in the past two years that I decided to be forthcoming: I do receive special help from the State of WA, and I received a grant from a foundation to help me pay my rent for the past year and a half. That has run out. I live on generous donations and occasionally I sell a CD or two at this website because I make nothing from sites like iTunes or amazon . . . see this article of mine about the true state of music in America circa 2014. I can't reveal my bank account but can assure you I have no stocks, bonds, annuities, boats, campers, investments, properties, houses, or off-shore accounts. I make so far below the national poverty level that I am not required to pay taxes. I am barely a thousandaire and often a hundredaire. I sold my big grand piano but don't cringe! I traded it for an NU-1 by Yamaha, an upright piano that sounds like a grand and has no strings. It really is an amazing machine. It looks exactly like an upright piano but weighs a fraction of a "real" one. I love it! And the 7-foot grand was hard to play and wore me out quickly. This way, I can play for hours.
Finally, this fellow demanded to know the state of my art.
This is harder to quantify. And I can only be honest. I am not who I was. At 66, I am slower and my feet fall off the darned pedals. I can't execute the lightning runs I once did. I'm like a female Dexter Gordon. You can hear that on my latest CD, WITH LOVE. This does not make me less of a musician, and I yearn to play again, but paying work eludes me—I have not been offered any work. Perhaps I kept too detailed of a journal here. I've tried to be as honest and to cover as much ground as possible.
In all, I am very optimistic for the future. There is nothing one can do about unremitting nerve pain: I was told up-front that it may be a companion for life, and it seems to be so. Yet there are days that I feel young and vibrant. Everyone agrees I look better and better every day. I am very isolated in this town (Olympia WA) as there is very little culture here and I have no local friends, but I have my husband Duncan, a wonderful dog, and all of this brilliant music I can listen to. I play every day and listen to music every day. I take it one day at a time and aspire to be better than yesterday.
Everything always works out in the end! And if things are not working out, it just means that it's not the end! We have a life and it is infinitely precious to ourselves and to those who love us, so I always try. TRY. This way there are no failures, only opportunities to learn. And I have had so many wonderful gifts and surprises in my life that I do fully believe in miracles. We're all of us miraculous.
If the fellow that asked me these questions seemed forward, well, he was. It miffed me a bit at first, but he had given me a generous donation and I felt that he may have a point and that I should try to answer, honestly and with little restraint. So I have. I'm hoping the nerve pain abates in my extremities. It is excruciating. But it is nothing compared to where I was two years ago. That is vast improvement, and that is what I seek: I ASPIRE to be better in all ways—physically, emotionally, and spiritually. Life has a lot in store for me still. I am not yet done. Sometimes the seemingly worst disasters can turn magically into the best things that ever happened! So I am pleased to report that while I sometimes suffer, I find great joy. I am simply blessed by the Universe. I have no arguments with its wisdom in this.
And tomorrow, I will be fractionally better than I am tonight! I keep going, keep playing through it all. My Music heals me. And others also. Fear holds us back. Where there is no fear, there is only life. And hope.
Report: Jun 20th 2014:
I played my first house-concert. I wore my corset for support and it helped, but a Steinway is still a Steinway, and it was rough on me. I played a lot of improvisations and slow tunes, and got some help from Nyaho and Richard, my two good friends, when I needed a rest . . . they both made fine musical contributions. I had trouble keeping the right foot on the sustain pedal, and after one ballad, it went and slipped, going "thump". But I had a beautiful audience full of glowing and loving people and they were very forgiving. All in all, everyone seemed very happy and supportive, and I felt that I did the best I could do. It wasn't like any concert I've ever given, but it was a new way of approaching my music, and it helped me form some ideas about what I want to do "when I grow up." I might form a band again, but it'll be a much more open-ended musical experience than previous bands, and it'll use technologies. That I do know. And I'll need musicians who are open-minded and inclusive and not hung up in old ways and old ideas. Ways change.
I was not in any pain for the evening (May 17, 2014) but my nerve pathways are wired differently, and I do have significant peripheral neuropathy in my feet. But, like I joked with the audience, "I can still walk", and I sit up very very straight. Occasionally I get an "intention tremor" in my hands, usually the right one, but I play through it. That's what this experience has taught me: keep going, keep playing through it all.
And a few days after the concert I walked my dog to the mailbox and she did her business right on the neighbor's lawn, right in front of him. I explained that I could not bend down to put it in a plastic bag and I explained about my back operation. He seemed a bit angry, but I got off with a scowl. Dogs bark and dump. It's no problem for me, but obviously it disturbed him. That's life!
I've rested up and am doing better. I need to write more tunes and meet some NEW people. Many of my old friends have fallen away because of my years of illness and inactivity. I was always the Golden Girl who played the heck out of the piano. I'm very lonely—I have a wonderful husband who does make my life a heaven, but one needs friends too. I'm sure I'll find some somewhere!
Report: May 1st 2014:
I have nerve-damage that affects me in the weirdest way. A "yes, this is all we need" moment. I have "intention tremor", something called cerebellar ataxia. It's unilateral (right side only) and just affects my right hand. If I don't think about what I'm doing it's mildly annoying but if I think about doing something like pressing a button or hitting a key, yes, I get wobbly. My fingers will dart off in every direction. I noticed it a year ago but thought it was anesthesia clearing my system. I'm 66 now, and most doctors say there's nothing to do about it except take vitamin E, B1, and B6. And don't stress. It means I can't intentionally play a piece of music. It must be "unintentional" . . . and I've had some rather startling musical moments since it's gotten bad. I have my first concert on May 17, 2014, and hope it's better by then. If not, the improvisations will be very very interesting. Just not intentional. Hypothetical cause: damage to a "long nerve" in the spine. There are millions of them. So I'm doing OK. Right? More as soon as I know more. Back seems good and strong now. Just after-effects. Parathaesia and motor ataxia. A fair trade for the pain I was in.
It certainly is leading to a new approach to improvisation. I cannot rely on any pre-set "licks". This is a good thing. All music is not licks and chops (rote-learning and technique) and my new improvisations sound really new and different. Some days the ataxia is not there at all. Others, it creeps in at times. It's "just a part of aging", which I am not doing with any grace. Like Katherine Hepburn, I am fighting until the end, with creams and moisturizers, age-defying makeup, and hoop earrings. My figure is still good, and I look good for my age. I refuse to give in. Hoop earrings! Really, though, isn't age a relative concept? Aren't we programmed to think that a certain age is "old"? I have de-programmed myself and live every single minute I have to the fullest.
Report: March 9th 2014:
Procedures that were performed:
- L5-S1 posterior interbody fusion and posterior fusion
- L4-5 lateral extracavitary arthrodesis
- L4-L5-S1 pedicle screws
- Posterior posterolateral fusion, L4-5
- Smith-Peterson osteotomy, L4-5 and L5-S1 (additional surgery needed to preserve nerve pathways after the removal of pounds of scar tissue and nerve root adhesions)
- Neuroplasty, adhered nerve root, L5-S1
- lnterbody cage, L4-5 and L5-S1
- Bipedicled paraspinal trunk flap (not enough muscle and tissue to close)
- 3 Laminectomies plus foraminotomies and medial facetectomy L4-5
A list of things I CAN do:
- 1 I can eat a lot of good food and not gain weight! My metabolism changed drastically.
- 2 I can walk about a quarter-mile if my shoes are right. The biggest thing is nerve damage in the feet. Paresthesia.
- 3 I can put on my pantyhose again! Game-changer! It took a half-hour the first time, but every time gets easier. I'm caring about how I look and dress, and that's a good sign, I believe.
- 4 I play ballads really well. Up-tempos not so much. I have some hand-tremors still. Perhaps they will go, perhaps no. But the way I play the ballads is so different, so . . . well, you'll hear a CD of it—with world distribution—soon enough.
- 5 I enjoy working on my movie-scores. I have one partial soundtrack coming up—I won't get paid until the 'paint is dry' and the studio releases it, if ever—but it's good for me and teaches me about story-boards and also reading my own writing. And using music notation software. And being part of a team, albeit at my computer.
- 6 I feel so very different. I wish that I had had this operation 20 years ago. But the medical technology was not there.
- 8 I can sit through dinner.
- 9 I can sit up really straight. Just that is a lot of fun for me.
- 10 I can stand up really straight. When I walk, it feels wonderful after years of slouching to throw my shoulders back and lift my chin and not stare at the ground.
- 11 A lordotic curve is concave (i.e. concavity towards the back of the spine), and is found in the cervical and lumbar levels of the spine. I have one now, which is good because it's the way a woman's back should be. This operation did much more than fuse vertebrae together. It changed nerve and even neural pathways, rearranged muscle attachments, and broke down old ways of doing things like moving, talking, walking, sitting, and—of course—playing piano.
- 11 I can enjoy what there is in life to enjoy. Some very fine things are in this world.
And a list of things I CAN NOT do:
- 1 My darned feet keep falling off of the pedals. I'm still working on the Velcro idea but when last I tried it, it was a FAIL. I have to watch my feet or they move gradually, and I cannot feel them.
- 2 My toes on the right foot go into spasms. I can't feel them, but they drop down or stick up and if I'm barefoot on the carpet I could fall or trip. So it shoes around the house, low, flat Mary-janes, made back when they made them to last. I bought several pair years ago and am glad I did.
- 3 I can't run. I'll never run. But then, I never did. I grew up on the East Coast. We never ran.
- 4 I can't ride a bike. That was fun but I was 12.
- 5 I still have trouble with turning at the waist, and always will. My body mechanics have changed. New rules now.
- 6 I am warned by my doctor that flying is discouraged—in a plane.
- 7 I still need a muscle-relaxant to sleep, and to get through most days. No more pain-meds though.
- 8 Stress makes my back hurt. I cannot watch news so the cable TV went a long time ago. Old movies are good. But no Internet tin-foil-hat fests for me. Too much stress.
- 9 Certain people must be avoided for now. And they can even be friends, but if they can't talk about anything except how bad things are, it gets me in the back. I send them to this video . . . I think that we've come a long way since Torquemada.
- 10 I can NOT pick up my 25-pound dog, nor can I get her on or off the bed. This is a problem. We tried doggie-stairs but she'll have none of that. She, after all, IS a Boston Terrier. But I used to love holding her. No more of that, it seems.
- 11 Eight hours is my limit for being "up" . . . then I need to lie down. Some days, five or six hours and I'm done in. Like now.
- 12 I can't sit in soft sofas or chairs . . . that just kills my back. I like straight-back chairs.
- 13 I couldn't go to a movie or a restaurant. Saves us money, though. Malls make me tired, and things that other people do—well, I never did much of what other people did.
- 14 Oh, heck. There's not that much to complain about. I'll think of something I can't do, but then I think of ten things I can do. So I'll stop right here. The future just is! And I'm lucky to have one!
All in all, I'm making real progress. In a few months I should be getting my "report card" from Dr Hanscom. He'll do x-rays and avoid CT scans. He worries about radiation levels, as do I. He is one great neurosurgeon, as is Dr Richard Rooney, the primary surgeon.
I don't feel disabled, I just feel different than I was before, and I truly am. I have a posture like Angelina Jolie and that's worth a LOT to my self-image. My sweetheart does most of the cooking (he's better at it than I) and life is falling into a pattern. Meanwhile, I am releasing some new music I like, as "new" to me means anything created in this century, including the latter part of the last one.
I think that my biggest problem is money. I won't be able to do the sorts of things I did to make a living—all the jet air travel, 48 hours awake, two concerts 3000 miles apart in two days, playing hard and fast with men I have never met before, a rehearsal at 2pm, starting the concert at 8 or 9, getting back to the hotel at 1am, staying awake until 4am, and catching a plane at 8am, not eating for days or weeks. OY! I get dizzy thinking about it. No wonder I broke down. I'm going to have to learn new things, new ways, and think outside the box. I'm glad that I'm a young 66, have acquired certain skills, and have good friends. Life is incredibly hard for so many, and ANY of us can "fall" from what we think is a permanent way of life. In very uncertain times, I'm glad to be here and alive and, so far, healing.
I am so lucky. I feel that I know love now. I never expected such support. It taught me to give more of myself. It taught me a lot about what life is, how incredibly precious it is. I am not "well" yet in a strictly medical sense, but I'm "weller" than I ever was! Thank you all. For all the continued and sincere help—I would not be here without you, and that is Truth. - JW, March 9th, 2014
Report: Feb 21st 2014: Today is a good day. I assumed I would never be able to do this or that. True, there is much I (probably) won't ever be able to do—but I am free to do much more in life than I have ever done because I am new and different, not the me I was. It reads like a contradiction. But there are many ways to climb a mountain, many ways to play music, many ways to write poetry, many ways to love each other.
On a purely physical basis (which is really just another way to divide body and mind) I am healing. In four or five months the bone-grafts will have set, and I will begin at something much different than before. We change constantly. Belief systems are barriers to living fully because life is so fluid, the patterns so unreadable. As Stilgar in Frank Herbert's DUNE said, "The future, Muad'Dib? It just is."
On the negative side . . . I can't think of anything to say except . . . no, nothing comes to me. A big aid to getting well: do not think, talk, follow, argue, or engage in the goings-on of the aristocracy. It's all "bread and cicuses." Without the bread. Spend your life living it fully! I intend to. Numb feet, sore back, metal screws and all! Thank you for all your help. I am getting there! - JW, Feb 21, 2014
Report: Feb 1st 2014: It is now officially 18 months since the back fusion, osteotomies, nerve re-sections and bone auto-grafts. I'm aware now of my limitations, but I'm doing everything I can to move forward with my new life. I call it new because it has little resemblance to the old ways of living I had become accustomed to. But as I have changed, so has the world. No longer do musicians make nearly as much money as they did (and we never really made much to begin with) as our music has been stolen and re-marketed by corporate Internet pirates with names like iTunes and Spotify and Pandora. Even if I could sit on a jet plane for 14 hours, I would be the one paying for it now and not the music promoters. I'd have to pay for the hotels, too. That's the new business-model for the music world. I'm sure that mega-stars like Justin Bieber and Beyonce have nice accommodations, but this is jazz, friends. Yearning for the old days and the old ways may bring a certain nostalgia or a feeling of unfairness about the new order of our world, but it's just a waste of our precious time here in this beautiful world to sit and stew about it.
The Universe just is.
Truth be told, I won't be able to sit on a jet plane for fourteen hours ever again, or even for four hours, even in first-class—and, for those who have romanticized about the music-life . . . we always flew coach anyway. That's all over and done, and that is the mainstay of a musicians life: Being on the road, playing concert after concert in city after city. Sometimes the tour itinerary didn't make a lot of sense: First I'd be in Ireland for one day, England the next, Japan for a week, then back to England for a day, and then on to Denmark. The day after that I'd be in Italy, the next day in France, and the next I'd be in Orly heading back to Heathrow for the "long-haul home." I haven't really seen much of the world even after all those hundreds of plane trips because I was never in a town long enough to see anything in it except for the hotel room and the inside of the concert hall. I always quipped that "getting to the gig" was the most difficult and harrowing part of the job, and it was. After two or three weeks on the road I was usually fried, with an aching back and a dangerous sleep-deficit.
Since I'd only do two sets of music in each city, it was getting very wearing. A lot of the musicians, the veteran "cats", seemed to take to it well, a few not really even having permanent residences or strong interpersonal relationships. They were the "road-dogs." They loved "the life." I did not. I missed my family, my home, my little dogs. I loved making LPs and then CDs, and many of those moments at the piano thousands of miles from home were golden. But that part is over.
I will still make CDs (although the music is changed as much as I) but this soon to be 66-year-old woman cannot fly around like a bumblebee anymore. With all this metal in my back and a certain set of body mechanics that have been altered enough that I could never sit in an airplane seat again without winding up either paralyzed or back in neurosurgery, new ways of living and being need to be established. Change is often a very good thing. Illness often teaches. When one thing becomes impossible, many new things may become possible. Optimism, flexibility, and determination are the only positive ways to live in a world of constant and rapid change. Our spirits are eternal (I think) and we have infinite resources if we open our minds and hearts to the many Universes all around us. We have only five senses, and that isn't much info to go on! So we work to vibrate at higher frequencies, and to help life live itself. Part of that is un-learning old programming.
Big news! I have recorded a new CD, the recording part of it finished just weeks ago, entitled "WITH LOVE" . . . it's dedicated, of course, to all of those who have helped me so far. It's introspective, totally honest, and very beautiful music, all solo piano ballads. I never played ballads quite this way before. I can personally guarantee that there is not one single "lick" or openly brazen display of virtuosity on the entire CD. This in itself makes it a milestone. There is so much space! It will be released on OriginArts in April of 2014. It's like nothing I've ever done before. It is truly "Myself when I am Real," an old Mingus improvisation on his wonderful album "Mingus Plays Piano," as that is the only avenue left open to me. It is a refreshing change and a new manner of self-expression.
I am also writing poetry (leave it to me to pick another high-paying pursuit) included here . . .
I admit to a certain frustration in simple matters: I must ask my darling to put on my socks or my pantyhose or my shoes for me. I must ask him to pick up an item (a napkin, a fork, anything I drop) as I cannot reach that far down. He even washes my hair for me, something else I can no longer do easily. As a consequence, our love has grown exponentially over the past few years, and continues to be the single most important facet of my life. We stay home most all of the time as we're both 'disabled' and never really enjoyed going out to eat or being on any "scene". We're just not joiners, I suppose. We both have our work: Making Art. This proclivity towards a cloistered, monastic life has several up-sides: It saves money, improves health, allows one to control what foods and are eaten, where the drinking water comes from, which vitamins are taken. Our one gift to ourselves is an occasional 2-3 dollar DVD or BluRay gotten from the bargain-bin at CostCo. Lots of old movies, circa 1930-1950. What wonderful movies they made back then. The African Queen. Mrs Minniver. The Best Years of our Lives. Mr Smith goes to Washington. Only Angels have Wings. Many more. I suppose people don't often watch those old movies anymore. Now all the movies are either zombie epics or end-of-days yarns with apocalyptic themes. I love science-fiction, but these movies are just too dark, too violent, and too negative. Why put bad ideas in your own head? It's like eating bad food. We won't do any of that.
Another frustration: I cannot sit up in bed. It's either laying flat, on my side or face up, standing, or sitting—and nothing much in-between. My feet, now afflicted with parathesia, keep falling off the pedals when I play. I cannot jump about or tap my feet as I am always sorry the next day. And I can't sit comfortably for more than an hour. Writing, this missive, I am thinking, "Go lay down for awhile, Jessica!" But it's OK. When you are loved as I am, everything is OK. We have evening after wonderful evening together. Sometimes it's dinner and a movie (at home, always.) Sometimes there's no time or desire for a Fred Astaire or a Cary Grant . . . not when you're as in love as we are. So it's OK. The money? I don't know where it comes from. Sometimes I'm lucky enough to sell a few CDs. Friends help. Donations are needed more now than ever. I am looking for new ways to work, using new skills and new tools. All I can do right now is say "thank you" for the incredible help. My new CD will be out in the spring. I'm going to do fine in my new life because of you, because of your continued help and support, because of love.
In my case, surgery was necessary. A very complex surgery on a very deformed back, which included: L5-S1 posterior interbody fusion and posterior fusion, L4-5 lateral extracavitary arthrodesis, L4-L5-S1 pedicle screws, Posterior posterolateral fusion, L4-5, A Smith-Peterson osteotomy at L4-5 and L5-S1 which is additional surgery to preserve nerve pathways after the removal of pounds of scar tissue and nerve root adhesions, Neuroplasty for adhered nerve roots, L5-S, interbody cage, L4-5 and L5-S1, Bipedicled paraspinal trunk flap - not enough muscle and tissue to close the surgical wound, 3 Laminectomies with foraminotomies and medial facetectomy L4-5, and full 3-level fusion including the removal of bone from the inner pelvis to structurally reinforce the screws, rods (radio-lucent), and internal instrumentation. Full dictated hospital report here
Report: Jan 1st 2014: I'm really excited about making changes, needed changes, in my life . . . more new music is coming in 2014 as I enter my 66th year here and my 62nd year as a true musician. I'm also writing some poetry here and here, and I'm painting too, making all kinds of art. This weather slows everything down in these colder climes so I am trying not to stress about the future, and trying to stay positive about it, too. I am very lucky to have come this far, and I thank you all for your patience and understanding. I try not to sit at the computer for too long so this will be a short report. My biggest complaint right now is the cold. It seems like the metal inside my back gets cold. I cover up like a hibernating bear at night with the heater turned up and my dog slowly cooks. She's at my side every moment, and has been all through this ordeal. She hurts when I hurt. I feel badly that I can't play Frisbee with her anymore, but there are ball-tosses (a few disasters narrowly averted) at night inside the house! I try to stand up as straight as I can and sleep as long as I can. Oh, and I have gained 6 pounds. I'm now at almost 140. For me that's great—I don't look as gaunt as I did a few months ago. I'll never be the same (old song title?) but I still have a lot to give. I will give and give and give, you know that about me. I am a very lucky woman to be alive and to have the friends I have. Meanwhile, thank you so much for your continued help!
Report: Dec 7th, 2013: The paresthesia seems to be gradually subsiding. Know something? Love is the greatest healer in the world! And holey moley am I loved. I'm pretty sure I'm disliked too, but I can't bother about that! This isn't a popularity contest—it's life! I am thankful to be here, and so very thankful that so many wonderful people continue to help me through this dark passage of pain. I am still unable to give concerts, and I wonder if I'll fly to other countries again, but in truth I still don't know what I'll be able to do 6 months from now. Maybe I will get on a jet again. Maybe I will be able to tour if I pace myself. I am amazed that I've come this far . . . for so long I was darned sure that I'd never be able to return to music, and now I'm recording my first album in two years, here at home, at my own pace. My spirit was pretty crushed. My body was blown apart. They say that time heals all wounds, or most of them. I'd add that attitude plays a big part, and love is the driving force of a good attitude: Being determined to do better every day, trying for things that weren't possible yesterday.
Below is an article about the dangers that may lie ahead. More stuff for me to worry about . . . mid-range outcomes in 64 consecutive cases of multilevel fusion for degenerative diseases of the lumbar spine: article here
Abstract: Multilevel lumbar fusion with instrumentation is associated with severe complications like failed back surgery syndrome, implant failure, and adjacent segment disease (ASD). Sixty-four patients were included in the study. We evaluated complications, clinical/radiological outcomes, and success of fusion. Flexion-extension and standing X-rays in two planes, MRI, and/or CT scans were obtained pre-operatively. Mean follow-up was 29.4±5.4 months. Average patient age was 64.7±4.3 years. Clinical outcomes were not satisfactory for all patients. Thirty-five of 64 patients (54%) showed signs of pedicle screw loosening, especially of the screws at S1. However, only 7 of these 35 (20%) complained of corresponding back pain. Revision surgery was required in 24 of 64 patients (38%). Of these, indications were adjacent segment disease (16 cases), pedicle screw loosening (7 cases), and infection (one case). At follow-up of 29.4 months, patients with radiographic ASD had worse ODI scores than patients without (54.7 vs. 36.6; P<0.001). Multilevel fusion for degenerative disease still has a high rate of complications, up to 50%. The problem of adjacent segment disease after fusion surgery has not yet been solved. This study underscores the need for strict indication guidelines to perform lumbar spine fusion of more than two levels. - Marc Röllinghoff, Klaus Schlüter-Brust, Daniel Groos, Rolf Sobottke, Joern William-Patrick Michael, Peer Eysel, Karl Stefan Delank
More than two levels of fusion are a hazard: And me, I had three levels fused. With lots of screws and hardware. And, at least according to these doctors, age 65 is elderly. I don't feel elderly. But I do greatly respect my elders!
Back to me, this operation and the subsequent months have been like a death and very slow rebirth. First wound up like a clock, then crazy, then coming down, then depressed, then a great feeling of loss, and finally acceptance—and now, a dose of optimism. What a ride! I can only hope that, in my future, I don't get Adjacent Segment Disease or loose screws.
I woke up this morning and thought, "Gee, this is like a new life I have here. I can do anything, be anything, go anywhere I want to. I'm free. If money went away and the world ran on giving and love rather than taking and money, what would I do, who would I be? The answer is that I'd do exactly what I'm doing and be exactly who I am and who I'm becoming. I'm perfecting my self.
I think I'm getting better. This operation usually takes 2 years before someone my age is healed (if at all, because there are so many failures) and it's getting close to 17 months for me. I've read that the success rates for multi-level lumbar fusions with internal instrumentation are less than 30 percent, with severe complications like failed back surgery syndrome (FBSS), implant failure, and adjacent segment disease (ASD). So I guess I'm ahead of the bell curve. I will always live with pain. But: I'm winning! It's because of you that I'm getting better, and because of my solidly positive attitude, and because of the love I've been surrounded by. But I don't think anyone can truly heal without love. And your love and support means so much to me. It is in all the music I am making now, slowly but surely. The album I complete will be for you. Thank you all!
Report: Nov 23rd, 2013: Actually I have paresthesia of the right foot now. But nerves are always changing with stressors, like how long I stay up and how long I sit—I can't sit more than 90 minutes and that is too long anyway. I have a disability now and it's hard to accept but it must be accepted. If I drop something on the floor, it stays there until my mate picks it up for me. Sometimes I can't sleep enough. I still have pain but it sure is less than a year ago. I can't move with fluidity . . . I watch old movies and see Katherine Hepburn and I say, "Wow. I wish I could move my body like that!" But that's past, and I sure am better than some people with similar problems. I can't put my shoes on by myself. My darling washes my hair and I sit in the shower. I have a way now to sit down, to get up. Lots of people can't get up, can't sit down! I'm a lucky one. The hardest part is the music I make. It's not possible yet to always play what I hear, but sometimes I do and that's a good day for me. Sometimes I can't but I try not to beat myself up for it. I have limitations. We all do. I try to play every day but some days I just rest. I can't do dishes because of the bending over the sink required. I can't lift the little dog onto the bed. I AM going to make music, though, that's for sure. I'm working on it all the time, even in my sleep!
I am thankful this Thanksgiving that I am doing as well as I am. So many suffer much worse fates than mine. And I am thankful for your ongoing love and generosity. Thank you, and Happy Thanksgiving, an American Holiday that gets overlooked, but I like it.
Report: Nov 2nd, 2013: This back operation left me unable to execute the sorts of machine-gun fast runs at the piano that I was known for. My music will change—change can be good. I have PERIPHERAL NEUROPATHY in both feet which makes pedaling a chore . . . my feet keep falling off of pedals as I cannot feel them. I am devising Velcro-soled shoes and a way to adhere Velcro to the pedals. I lost 50-plus pounds after surgery and have not gained one pound back. I am now 130 pounds. I am 2 inches taller now. No complaints, as I stand up straight now and sleep through the night. My pain was a "10" before this surgery, it is now a "2" or "3". See this page for the first pictures of me in over 2 years.
I saw my neurosurgeon on Oct 23, 2013 at Swedish Hospital and his report is:
- Study Result: FIVE VIEWS LUMBAR SPINE:
- Indication: L4-S1 posterior fusion. Followup.
- Jessica J Williams F 03/17/1948
- Findings: Again seen are changes from L4-S1 posterior fusion and intervertebral disc replacement. No malalignment or subluxation between flexion and extension. No acute fracture.
- DEGENERATIVE CHANGES ARE SEEN AT L1-2.
- 1. Status post L4-S1 posterior fusion, stable.
- 2. Pain at L1/L2.
- DR DAVID HANSCOM
- Preliminary result dictated by: Juan A Millan
- Dictated: 10/17/2013 6:16 PM
Report: Oct 21st, 2013: I saw my neurosurgeon on Thursday, Oct 17th, 2013. I'm having foot pain. On the soles of my feet. And this creates problems not only with walking but with piano pedaling. I have "peripheral neuropathy" — very common after lumbar fusions and Smith-Peterson Osteotomies — but it's not been this bad. It's very possible that it's nerves coming on-line. It's important to think positively, to not allow the pain-pathways time to "set". Most of these pathways are in the cord itself and in the brain. It does not mean that it's "all in your head" . . . it means that pain is a mind-body experience and that controlling it and working through it is far better than fearing it and "guarding against" it. That guarding behavior just makes pain worse. He said I'm healing well and was very happy with my progress. I should be able to give a concert of about 90 minutes in mid-2014. The bone-grafts are still healing but everything seems to be on course. I had 5 x-rays (the hospital, Swedish Hospital in Seattle, really needs to upgrade its x-ray equipment. It was the kind that takes 2'x2' negatives and has cross-hairs . . . a real pre-Korean War relic). So I am doing well and am healing. I won't be playing publicly for awhile yet, but I think I made it . . .
Report: Oct 6th, 2013: My doctor (Dr David Hanscom) wrote a book about this sort of thing. It changed the way I think about my back pain — or any pain. It's worth every penny. I had bought it before I met him, and then he gave me a copy, so I gave one to a friend. Dr Hanscom himself had a twenty-year battle with nerve-pain in the feet. Bad thing for surgeons, pianists, anyone. I need to work harder, practice more, do my exercises, and be very proactive about this. Nerve patterns can become habit, and the pain remains as a continuous echo. Take a CAT scan, and there's no deformity or cause. Consequently, many back operations need never be done. Especially multi-level fusions, with less than a 30% success rate. When there's a clear deformity and a clear "pain generator" — that's when we become candidates for surgery.
In my case, surgery was necessary. A very complex surgery on a very deformed back, which included: L5-S1 posterior interbody fusion and posterior fusion, L4-5 lateral extracavitary arthrodesis, L4-L5-S1 pedicle screws, Posterior posterolateral fusion, L4-5, A Smith-Peterson osteotomy at L4-5 and L5-S1 which is additional surgery to preserve nerve pathways after the removal of pounds of scar tissue and nerve root adhesions, Neuroplasty for adhered nerve roots, L5-S, interbody cage, L4-5 and L5-S1, Bipedicled paraspinal trunk flap - not enough muscle and tissue to close the surgical wound, 3 Laminectomies with foraminotomies and medial facetectomy L4-5, and full 3-level fusion including the removal of bone from the inner pelvis to structurally reinforce the screws, rods (radio-lucent), and internal instrumentation. Full dictated hospital report here.
I'm going to release a few new CDs soon but they're delayed because of this. You've all been very patient and I thank each of you with all of my heart. For those of you who've read this far, see this page for the first pictures of me in over 2 years.
Report: Sept 12th, 2013: It will be around 5-6 months before I should attempt to play a ninety-minute concert. This is on the advice of my neurosurgeon and it is also what my body tells me. I get tired quite easily. And just when I need to gain a bit of weight - I hover around 130 pounds - some of my lower teeth are going or need extractions. I am very lucky to live in WA State, as we have wonderful coverage by Medicare, Medicaid, and State-run Dental services. Your donations have continued to keep me going. I can't thank you enough for your kind patience and giving spirit. The donation button will evaporate when I am able to give myself fully on the concert stage. I am not there yet. Meanwhile much new music is being written, and it is quite new and different. I'll update soon, and thank you again. May Love follow you all.
Report: August 24th, 2013. I missed my appointment because of a bad tooth! But I will see Dr Hanscom on Sept 10, 2013. Let us hope everything is go. Good news: I woke up yesterday and played like the wind. No warning. Just . . . there it was! I know I was thinking a lot the night before about music in general and my life in it. I had visited McCoy Tyner's web site and was very inspired to see him sitting up so straight and playing so well after his own bouts of serious illnesses - his new album "Guitars" is out now. Then my friend and fine pianist/composer Cedar Walton died, followed closely by a real inspiration to me and also a friend, Marian McPartland. I have to get better, and I am. Truthfully, I have had my doubts. The worst part of this ordeal has been the STRESS. About . . . what else? Money. Money comes in but goes out twice as fast. I don't read the news. It makes me crazy to read about booming economies (ours) when nobody I know is booming. I still need your assistance, but soon the donations stop and I start. You are going to see and hear an older, more mature Jessica, one who may not be able to do cartwheels at the keyboard, but one who knows the value of good friends, a place where I belong, and a talent at making beauty. I just want to make people happy again. There is no reason we can't get back what we lost. We get through this together. Stay optimistic. It's the only option!
Report: August 2nd, 2013. I tried to put my left sock on because I stepped in a puddle in the bathroom. Bad idea. I must have pulled a muscle. I don't think I broke a screw . . . but ouch! So I called on Tuesday to make an appointment with my neurosurgeon. Hopefully we can just take an xray film and avoid another CAT. Too many CAT's already, and hard gamma radiation is not good for living systems. I'll see him on August 13th, and let you know the results when I get them. It's been over a year and the bone grafts haven't fully healed, but that is not unusual. This is morselized bone, taken from the inner iliac crest of my own hips, mixed with sort of goo to make it malleable enough to inject into "cages". It's all very unpleasant, and not something I want to do ever again. Many 3-level lumbar fusion patients are in line for many repeat operations as the problems travel up the spine into the thoracic and cervical areas. I don't want to walk around like a robot. So I eat well, sleep a LOT, exercise, play the piano as much as possible (45-50 minutes is my limit) and I walk.
Actually, I think that having Bilateral Meniere's Disease and having Clinical Hypothyroidism (yes, that would be me) is an additional annoyance. The Meniere's settled down after a two-month cycle of morbidity, but balancing the endocrine system is another, ongoing challenge. I do not use Synthroid as my body (and most women's bodies) cannot convert T4 to T3, the free and active form of thyroxine.
My next report will hopefully be more up-beat and contain some medical updates from my physician.
Report: July 24th, 2013. I can't say there's been any real change, bad or good. I suffer what there is to suffer and enjoy what there is to enjoy. Morselized bone grafts take forever to solidify, obviously. My neurosurgeon (now Dr David Hanscom) seems vaguely concerned but advises against making any predictions, based on the fact that my posture remains good and my spirits are up. I think I'll be fine . . . I just need time to heal. Many believe that a triple-level fusion with instrumentation is a dead-end operation, while others mistakenly think it's a discectomy or a laminectomy. Both of those operations are kid stuff compared to rods and plates and screws and bone grafts . . . not to mention the Smith-Peterson Osteotomy and the Bipedicled paraspinal trunk flap. So much scar tissue was removed that they lacked skin, fascia and muscle to close me up (a 12-inch diameter hole) and used advanced grafting techniques for closing.
Life is infinitely precious to me, and I look forward into a better future. My imagination works overtime to invent new and original ways to communicate my love and passion through my music. I simply will not be stopped. As I've said, "Never step back, never back down, feet on the edge, face to the wind". Beauty abides everywhere. This world is just too good to miss a minute of. I believe this operation has fashioned me into an intolerable optimist. - JW, July 24th, 2013
Report: July 1st, 2013. Saw the doctor last Tuesday. Not much to report. My pain starts about an hour after I sit here, so this is a short report, fortunately uneventful. I realize that this sounds limiting (it may be difficult to fly again) but we must adjust to our limitations. It takes up to two years for a "full recovery" but I'll never have the mobility or strength and endurance for long concerts and long-haul air flights. This will have strong implications on my future career, such as limited travel and concerts more in line with the length of my ability to sit for an hour or more. I have no longer the upper-body-strength to adequately compete with men, but I doubt that I ever did. My pyrotechnics and body gyrations are a thing of the past. Yet limitations often breed new, superior ways of functioning. I'll write some more on a better day. Today as most days, bed is beckoning.
Thank you Laurie, Carol, Mary, Jeannie,Margaret, Francie, Irene, Jim, Thomas, Stephen, and many many hundreds of others who are helping me get by. I think of you with such thankful affection. May love follow you all. - JW, July 1st, 2013
Report: June 1st, 2013. I think that my healing is going OK but I need a scan for that, and I drew the line at 4 CAT scans. Enough. It hurts to know I'm disabled. But I learn daily to live with things I cannot do. I focus on the things I CAN do. The last visit to the hospital (a few weeks ago) was pretty positive, except that the bone fusion still is not set. I was told this could take up to 2 years, because auto-graft morselized bone infusions don't always take. They moved bone from my inner pelvis to my spine. The doctor did say in his report that the fusion "appeared" stable even though he could see no bone mass. He said that what is holding me together are the rods and screws and "instrumentation", not my spine itself. I rely on the metal and hope that the screws stay tight and nothing bends or breaks.
I have to simply look around me to see people who are hurting much worse. Every day I am thankful.
I may sometimes be very fragile but I have a strong will and a 'best-case scenario attitude'. I do not believe anyone's predictions - how long I'll live, will the surgical construct last me a lifetime, and so on - and this is because I have never met a fortune-teller that could truly see the future. I believe that I have the strongest hand in my own healing and eventual health. Only I hold all of the Keys. Doctors may pass judgments but they rely on logic and statistics. Logic is blind and often knows only its own past. I take 2 pills daily of Norco (as this heals the pain increases. Not uncommon. I quit Zolpidem (Ambien, a sleeping aid) because I found out they've linked its use to cancer.
This week I haven't played very much. There is a stray nerve that leads to the bottom of my right foot that is either growing, healing, or compressed. So my pedaling is negatively affected. It's a matter of finding a pair of flat shoes, soft inside, but with harder soles.
Things I can NOT do:
- put on my stockings
- lift anything over 10 pounds
- hold my dog in my lap
- pick anything off the floor
- take a shower without assistance
- stand for longer that 30 minutes maximum
- sit for longer than 45 minutes
- bend over from the waist
- rotate my body more than 10 degrees left or right
- things too numerous to mention, small things I took for granted
I send my deepest thanks and warmest thoughts to all of you who continue to help me through this "Dark Passage" . Sit up straight and please get up and walk as much as you can. And pianists - no more postures like Bill Evans had. Your teachers were right. Sit up straight. Economy of motion. Let Keith Jarrett crawl around under the piano. He's an athlete. Most of us are mere mortals. Me, for one. -JW, June 1st, 2013
Report: May 1st, 2013. Hello, loving friends.
I play piano almost every day. I can play now for about 30 minutes before I need to lie down and rest. I listen to the radio. I've even grown fond of some of the "New Country" tunes. When I'm feeling tired or blue, I "put my Country on". I was born in Maryland, right on the Mason-Dixon Line, and spent a lot of time in Virginia, North Carolina, and Georgia... so it's a natural thing for me. I sing along.
I also listen to the classical stations. I love Bach, and I am immersed in the Russian composers, with Tchaikovsky at the lead. A true romantic for the romantic in me.
At 65, my life is tough but it's still my life. So I write down melodies of my own and work on them when I'm feeling strong. I don't have very much strength or stamina, but LOTS of ideas. I practice scales like a good student, just as John Coltrane or Glenn Gould did, and I record the music in my head, in rough form, onto a CD or I write it down. I went to a gym once, but almost fell off of the treadmill. My neurosurgeon admonishes me to stay away from gyms, and to exercise within my abilities. Walking is good for me, but I don't go very fast or very far. When I get home, I head for the bed for a few hours rest.
I always tried to keep up with the men. Now, I'm happy just being me and bringing my female self to all of my music. This music needs Yin and Yang. I think my struggle to "keep up" is one reason that my back gave out. We're built different, we think different, and we are different, so we must never be in competition with anyone for long. Our way forward is cooperation.
The hardest thing for me is what I am doing right now which is sitting at a computer keyboard and updating this chronicle. It still hurts enough that I can't sit for more than 30-40 minutes or stand for too long. It's a slow road back. This was one incredibly difficult and painful operation to have, with a recuperation period that can extend for several years. Morselized bone grafts do not heal in 6 weeks or even 6 months. Some people's PEEK cage grafts never fully solidify. So I still have the metal in me, the pedicle screws and the rods and the bolts and the PEEK cages. Dr Hanscom says that I will keep them for life or until a screw comes loose. I don't want any loose screws!!!
In summary, I just want to thank you all, from my heart, once again. You are helping me get through the hardest, most painful time in my life, and, although I'm not there yet, I am getting there! Blessings to you all. - JW, May 1st, 2013
Report: Apr 9, 2013. And how am I doing? Well, pretty good, considering. I hate taking pain meds. Sleep seems to be the best force for healing. That, and laughing.
I LOVE to laugh. Watched some great W.C. Fields — one of my favorites is "The Fatal Glass of Beer" and another is "The Dentist" — and then I went retro and immersed myself in the Austin Powers movies. All three. I think comedians are as important as artists in this world. And with your help and their help, I'm making it.
I got rid of TV because the programming was awful and the cable was too expensive.
I AM going to make more new music . . . I already am. This operation is NOT for wimps. But then, a life well-lived is full of all kinds of experience. I have a new neurosurgeon, one who tries never to perform unnecessary surgery, and always tries to avoid the "cascade" effect. He's a very famous and highly-respected neuroscientist — Dr David Hanscom, author of "Back in Control". I am here and I am winning because of your love and support. All I can say is thank you so very much for being tuned to my frequencies. We're in this together, and you certainly have all been there for me. - JW, April 9, 2013
Report: Apr 21, 2013. I saw Dr Hanscom a few days ago. He says that my posture is near perfect. My fluidity of motion is much improved. All of the function that I lost (ability to bend forward at the waist, put on my own socks, twist my body left and right without moving my hips) remain lost forever. But I am alive and happy to be here.
I am very pleased that I am not considered a "botched" or "failed" back surgery. There is a thing called FBSS — failed back surgery syndrome. There are people that have had 30+ surgeries! I am not one of those, but to secure my future I must always maintain a good posture and a flow of movement that I am now learning, every day. It relies heavily on the muscles of the pelvic floor. My face shows a few lines of pain and experience that it did not previously and my hair is now white. I have seen and felt a lot of pain, and I have watched others in my place become hopeless and go down with cascading facet failure and disc mis-alignment. It is so sad, and I will work to avoid that.
You cannot know how much love and caring you have given me. You have shown support such as I have never experienced. I am not just filled with gratitude, but also with awe at your graciousness and your supportive donations, purchases, gifts, and letters. You make my life whole again with your caring and concern. I feel the bond between us - myself and my partners and friends in this difficult yet amazingly miraculous time we live in. - JW, April 21st, 2013
I didn't know this, but we won't know about the complete success or failure of this operation until a final CT scan. Then we can see where the PEEK cages wound up and how the auto-graft bone (harvested from inside my pelvis) grew to support the spine above L4. I am thinking positive thoughts.
Pain is manageable with 3 (often 2, now) tablets of Norco [10/325] every day. It will be a year before I can play a concert again. This is now clear to myself, my PCP, and my surgeon. I try to walk at least a half-kilometer or more a day, depending on the weather. I am still too "raw" for PT, but I do Qi Gong, and try not to sit at the computer for long.
My neurosurgeon was Dr Richard Rooney, assisted by two other fine PA's and many gifted RN's. Dr Rooney has served two tours in Afghanistan and Baghdad both in Medivac and Field Hospitals, has won "Top Docs" for 2 years straight, is 6'6" tall, and has suffered 3 back surgeries. So he knows this pain.
There is no other pain such as this.
(Dr Rooney has since left Swedish Hospital. My new neurosurgeon is Dr David Hanscom)
My body was twisted and stooped — now it is straight. The pain was at 9. I was near death. Now, I cannot rotate easily at the waist — nor should I try — and this will affect my approach to the highs and lows of the keyboard. But critics had complained of my affinity for low-high extremes. Perhaps their rancor will be assuaged.
Dec 13, 2012 - CT (Computerized Tomography) was conducted today at First Hill Diagnostic. Full CT Imaging and report HERE - Meanwhile Dr Rooney is moving from the Polyclinic and will start his own practice, South Sound Neurosurgery, on Dec 4th. There may be one more surgery ahead of me — the removable of the metal instrumentation. Or I may keep it. It is up to the surgeon and myself. I feel I may keep the metal as it makes the spinal fusion stronger. The downsides are inner irritation, infection dangers, lesser range of motion, and overgrowth of spinal bone. We'll see. I'm very positive about this outcome.
Not only were the 3 surgeons (one team leader, 2 assistant PA's, plus the magnificent nursing staff present), but my attitude and my stress-handling techniques, learned at the hands of major stress producers (record producers) are of a high rank. I learn as I go. I grow through this.
Feb 10th, 2013
I am starting to understand what it is like to be suddenly confronted with a disability. I realized one night not too long ago that there were things that I would never be able to do again. Ever.
I'll most likely never be able to:
- Take a shower without sitting down
- Roll around on the floor playing with my dog
- Pick something up from the floor
- Stand for a long time (10 minutes maximum, 16 Jan, 2013)
- Sit for a long time (30 minutes maximum, 16 Jan, 2013)
- Sit through a long-haul plane ride
- Angle my shoulders at more than 15 degrees in relation to to my hips
- Play more than a one-set concert (which I was doing before this ever happened — if one set is long enough for classical performances, it should suffice for other serious idioms as well)
- Take long (or not-so-long) walks in the park
- Climb any number of stairs
- Dance, except at a very slow pace (not a problem)
- Put on socks, shoes, or stockings on my own
- Play piano with all those trademark acrobatics and hunching and low sitting postures. I can still play, though. I just have to sit up very, very straight. Like a proper piano student. We are all students, are we not?
- A thousand and one things that are too personal, banal, or mundane to post here
Ever. That's a bracing realization. I am not who I was. Oh, I'm Jessica. And I'm alive. My disability is insignificant compared to many, many others, and I still have the gift of music. I will be getting a piano soon (had to sell mine). But this is very like having been in an expensive and life-altering accident. I feel like I'm starting over, with certain limitations. And I know my limitations.
So, as Miles Dewey Davis said when he returned to the stage after 6 years of painting and isolation and silence, "I ain't playin' that heart-attack music." And truly, when I was 4 or 18 or 28, I didn't dream that I would be as successful as I was at "that heart-attack music". Now that I know what I wanted to do in the first place, which was clear when I was 4, it is MY TIME now to do it. I'll be back. But different. More me. I do know, after having visited a local piano shop, that I can still play like the wind. So don't worry. Whatever has changed, I am not slow.
Meanwhile, every dollar counts. I never asked for money before. I never asked for help paying for this mind-boggling (but life-saving) operation. I paid insurance premiums for years as my bladder and other internal organs were being crushed. I was down 2-plus inches from my usual height and now I'm at a regal 6 ft (1.8288 meters), just like when I was 16, and weigh in at 154 pounds (69.8 kilos). Skinny.
But I can't work yet. I still need your help.
For the misinformed: we musicians do not get pensions, unemployment compensation, 401K's or retirement accounts. We have no provisions for sick-leave. We are often uninsured. Our unions are infested with corruption and greed, and most of us reject membership. And me? No boats. No property. No home ownership. No estates. No cars. No investment property. No stocks. No hedge-funds. No visible (or invisible) means of support. Last week I talked to a nice lady at Medicare who said "What have you been thinking!?!"
PS: my attitude is way better now...
Comments about above comment (see above): I promise I will never say "I'll never do this or that again, EVER" - again. I know better than that. We create our Universe in subtle ways, and every action has a reaction. Words have power and belief has infinite power. Pain Pathways are memories, and they can be re-routed, un-memorized, de-programmed. I AM going to get better and better. Last night I picked up the dog's bone. I bent my knees but I DID IT. This heart and mind and soul here contains the Universe, just as the Universe contains me. "Never step back, never back down, feet on the edge, face to the wind" - that's from an old country song. And as far as my future, it's long and hard and easy and beautiful and everything anyone can imagine. I am determined to fully live until I die. If the doctors told me tomorrow that I only had 6 months to live, I'd do everything that I always wanted to do. And I've done most of that, anyway. No. I turned a corner, and I AM going to do at least SOME of the things listed below in my "bummer" list. My spirit has improved as I get off these pharmaceuticals, as I take less of them whenever possible. They're not a drug that abides a happy, serene, or evolved consciousness. - JW, March 15th, 2013
Etiology: I have had genetic musculoskeletal difficulties since early childhood, and several spine surgeries, though none this risky and severe. Hunching over the piano and poor posture for 50+ years also took its toll. Several months ago I was 5' 10", and now I am 6' - my height at age 16 - with NEARLY perfect posture. My neurosurgeon was Dr Richard Rooney in Seattle.
AGAIN: this is NOT a solicitation for help to pay for the surgery as my insurance has paid:
This request for donations is for the time AFTER surgery, the approximate year or two that I won't be able to perform.
Also, I sold my piano to help pay for the time I will be unemployed: but I have a line on one as of Mar 1, 2013, and I have a good feeling.
Without spine surgery I experienced trunk and leg paralysis, loss of renal function, and constant intractable pain. If it progressed up the spine and reached the thoracic and cervical spine, I would have lost movement and sensation in my arms and hands. This surgery is an interbody 3-level cage fusion with stainless steel pedicle screws and radiolucent rods to stabilize my increasing lordosis, scoliosis, and to ameliorate my intractable lumbar (lower back) pain (Surgical report here). Bone grafts were taken from my inner pelvic region to supply the autograft infusion for the cages.
It was like being hit by a truck. I was in the hospital for 8 days. I'm now home and am recuperating, already walking without a walker. Personal Progress Report HERE
I'm really happy that I can give back through my music. I know that you people who love my music are the kindest, gentlest people in the world. Your donations have been steady and generous and I believe in love and friendship more than ever! There are great people on this earth and I must know a lot of them.
And I need your help more than ever.
THESE DONATIONS ARE FOR LIVING EXPENSES - food, physical therapy, utilities, the necessities of life. Please make a donation of any size that you can afford. If you ORDER MY CDs, that'll help immensely. Every order and every extra dollar helps. And if you can’t afford it, I can understand that. We all share difficult times. Just keep listening and loving life if you can.
Thank you from my heart, with peace, sanity, love, and freedom, Jessica.
Pre-op (before surgery) - Scroll down for newest CT imaging/video
Click to enlarge. Above: L5/L4 compression and degradation (plate1) and my scoliosis (plate3) and disc deterioration. The middle plate shows the "seepage" of L4 and particularly L5, and the pressure placed on the dura, which is what causes the pain and increasing morbidity. Without intervention, organ damage, incontinence, and full motility loss can occur. These are my personal images.
Post-op (after surgery) - Scroll down for newest CT imaging/video
Click to enlarge. Above, 2 post-operative views, the first showing me from the front, with pedicle screws and PEEK bone cages and other "instrumentation. Slide 2 shows the left side, and the near-perfect alignment of screws and hardware. The pedicle screws are connected with radiolucent rods which makes them invisible to an xray. These are personal images.
New CT scans
Above: movie, CAT DICOM imaging, my spine after fusion - Dec 2012
Above: anterior view, CT, Mar 30. 2013
Above: lateral view, CT, Mar 30. 2013
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This site is dedicated to John Coltrane, Glenn Gould, Elvin Jones, Mary Lou Williams, Dexter Gordon, Miles Davis, Thelonious Monk, Philly Joe Jones, Tony Williams, and all who have devoted their lives and their souls to Music. "I want to be a force for good. I know there are bad forces here that bring suffering to others and misery to the world, but I want to be the force which is truly good." - John Coltrane