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40 years ago this weekend, I had my 12-vertebrae spinal fusion

June 11, 2012

An x-ray post-scoliosis fusion surgery – not mine

The vertebrae from between my shoulder blades, down to the base of my spine (sans one) were fused, with a Harrington Rod “emplacement.” The vertebrae were exposed, and then the first layer of bone was chipped away. The Harrington Rod operated a bit like an auto jack. One end was hammered into the vertebrae at the top, and the other end was hammered into the lowest vertebrae. A device that measured the pressure being placed on your spine was inserted into the cerebrospinal fluid, and then the whole device was ratcheted up. Once a certain level of pressure was reached, the surgeon – Dr. Hugo A Keim – had to stop, lest the patient become paralyzed. Then the whole ghastly mess was covered with bone chips (actually, more like matchsticks) that had been removed from my pelvic bone. I was kept in the hospital for one month, while it healed, and then put into a full body cast, which went from my chin, and around the back of my head, to my groin. There was a diamond-shaped hole cut out of the plaster right above my diaphragm, so that I could breathe. .The “procedure” was done at Columbia-Presbyterian Hospital, .and was state of the art at the time. Now, it seems almost medieval; the Harrington Rod hasn’t been used since the early ’90s.

I spent the summer in bed, watching the 1972 Munich Olympics (with their horrible and shocking end) and the Fischer-Spassky chess matches, as they were narrated live on Channel 13 by Shelby Lyman. In September, it was back to school, so I wouldn’t miss my Junior year. After nine months, I was cut out of the cast, and it was assumed that the spinal fusion and I would live happily ever after. Of course, things never work out that way, especially not with medical procedures. Eighteen months later, I bent over and picked up a box at the pharmacy, and heard a “popping” sound. Later that night, I tried to get up from my desk after an evening of pre-calculus homework, and fell right down on the floor. I had slipped the disc at the base of my spine, the one Dr Keim had left unfused for mobility’s sake. That slipped disc has bothered me ever since, but I am one of the lucky ones. Too many of the girls who had scoliosis fusions have had almost perpetual pain and difficulty with their backs for decades afterwards. Audrey, one of the girls I met  there and who became one of my closest friends, has even had to have the  Harrington Rod removed because it broke!

I had forgotten all about this anniversary until I heard the WNYC news reader announce yesterday that the Puerto Rican Day  Parade would be tieing up traffic uptown. I was in the hospital, lying in a bed by a window, on the day of the Puerto Rican Day Parade in 1972. Columbia-Presbyterian was way uptown; I could see the marquee of the Apollo Theater when I looked north out of the window. The Puerto Rican Day Parade went right by the building that day in June. At least I *think* it did, because I wasn’t able to look at it;, since I couldn’t get to the window to look out. . I wasn’t able to stand up post-surgery for three weeks. But I did hear the noise, the music, the cheering. The sound of celebratory happiness rose up to the 5th floor, where the Children’s Orthopedic Ward was located. (At 15, I was still a few months shy of being on the Adult Ward.But that is a different story.)

That happiness was a mocking contrast to my own situation at the time. I remember very little of the post-operative week, following the surgery, because it consisted primarily of pain and drugs. Th memories that I can recall involve my pain, or those of my roommates. At 15, I’d had some physical pain, mainly cut knees and a tonsillectomy at age five. There was certainly pain associated with the tracheotomy performed without anesthesia at 8 weeks, but it wasn’t anything I could consciously remember. I’d tried to prepare mentally for the pain that would inevitably follow getting your back opened all the way up, your spine scraped down to the cord, a metal device hammered into it and used to jack it up, and then getting it all reconstructed with bone toothpicks and thread. But how can any person that young understand excruciating pain, unless they have experienced it? I was in Catholic school, and pretty spiritual, even if it was  in a forbidden way, through iconoclastic study of other religions. I was even a pantheist and a Deist, having moved to the concept that there is One God underlying all religions, and in all Nature. (These are dangerous heresies in the RC church, because they eliminate the need for the entire expensive clergy, from priests to Pope.) I prayed to God for the strength to bear it all. I had a very particular prayer, that I clung to: “God, I will bear any pain that you will give me. Just give me wisdom in return.”

Being in the Children’s Ward, as the oldest child, meant that I was with children from newborns to 14 year olds who were suffering from severe orthopedic problems. There was a whole room full of cribs, each board-hard baby mattress occupied by an infant who needed orthopedic surgery to correct a birth defects hip displasias; spinal issues; problems with  their shoulders and arms, their ribcages, hips,their legs, their feet. There were children who were there only briefly, in and out, with one-day surgeries and swift releases home to concerned parents. There was a 12 year old girl in our four-bed room, who had come in for removal of a bone “bump” on her shin. It turned out to be the sort of aggressive bone cancer that took Edward Kennedy Jr’s leg in 1973, the following year Linda went into the operating room expecting a simple bone-spur removal, same as her family. The surgeons ended up taking her leg off above the knee. The scene where she awoke from her anesthesia, and was told by her mother and grandmother that her leg had been amputated, was pitiful. She screamed and sobbed inconsolably. Four days later, though, she was gamely trying to walk on her new prosthesis, and she cheerfully left the hospital two weeks before I did, There were the long timers, kids who had been on the ward for months, like the 10 year old who had fallen onto the subway tracks and lost both his legs. He rolled himself around the ward on a stretcher, stopping int to every room to chatter with the occupants. He couldn’t, of course, enter the room that required complete and absolute sterile conditions. That was where the 11 year old boy who’d lost two limbs to electrocution was recuperating. He’d been climbing a tree after a thunderstorm, and when he got about twenty-five feet up, he’d grabbed a live electrical wire instead of a branch. Not only was he electrocuted, he fell out of the tree, and suffered severe orthopedic damage.There was the boy, perhaps around 10, who also had scoliosis – the only boy I ever knew who had it. (For some reason, scoliosis seemed to be a problem mainly affecting girls.) This boy (I think his name was Tim) had dived off the side of a boat while he was on vacation with his parents in the Caribbean, back when he was 7 or so. Somehow, the propellers of ab oat (the same ones? I can’t remember) sliced open his back, cutting his muscles in the lower back. He healed, but as he grew, the muscles on that side knit together with far less give than those on the other side. They pulled his spine to one side, so that he had developed a very rapid and severe curvature. Why did he get a spinal fusion the length of his back, rather than treatment for the bunched-up, deeply scarred muscles? One can only guess.

Then there was Mickey, a tiny child of about three who had his right arm in an elaborate cast that encased his entire right arm and part of his body, with a metal rod embedded in the plaster that kept his arm extended and bent. He’d been in the hospital since his birth, because his drug-addicted mother had abandoned him when she was told the extent of his birth defects. Mickey had been raised by the nurses, had had eight surgeries, and was the happiest, sunniest, funniest three-year-old I’d ever met. He was in a little wheelchair, and rolled himself around the ward with his one free hand, hanging out at the Nurses’ Station, visiting in all the rooms, keeping up a practically endless flow of patter. He and I used to watch “Sesame Street” and “The Electric Company” together, which was something I did with my two brothers back home. I often wonder what happened to Linda, who had a cancer with an extremely poor prognosis, or to Mickey.

Being on the Children’s Ward was a blunt announcement to me: “You can’t feel sorry for yourself. There are people right here – much younger and more innocent than you – who have it much, much worse than you do. No complaining.”  I was familiar with the title “I Am A Camera,” because Cabaret had been released in February, of that year, based on Isherwood’s book  “Berlin Stories” and von Druten’s play “I Am A Camera.” I adopted that slogan as my purpose, and kept detailed journals of the whole journey, from my first diagnoses, through the search for doctors who understood scoliosis (which was not well known at that time), to the hospital, the surgery, and its aftermath. I haven’t been able to read them for decades.

When I actually had the surgery, and was suffering post-operative pain, I lost my ability to step back from what was happening, in order to journalize it. All I had strength to do was keep from crying out. Controlling myself so as not to scare the younger children was very important to me; I’d already been demonstrating to younger children that there was nothing to be afraid of, that there was a big kid who didn’t cry and didn’t scream, because it wasn’t that bad  or scary. That reassurance is very important to little children, especially when it comes from other children. Kids don’t believe grown-ups when they tell you about how much pain an event will cause, once they find out how often grown-ups lie about whether or not something is going to hurt. Children  have been betrayed by that promise (“Just a quick little pinch…”),, with its stupid lollipop reward for “being so brave” as the bribe that it supposed to distract us. What helps a child in pain is someone who says “I know; I understand,” someone who strokes them gently and comfortingly, and someone who tells them, “Yes, it really really hurts, but I believe in you. You can survive this. You can hold on through this. You will survive.”

At the time of my spinal surgery, there was no one in my life who performed that function except for myself. My father didn’t know how to. My mother had been hospitalized with a severe nervous breakdown, which we now recognize as bipolar disorder, three weeks before my surgery. My friends tried to help, but they were scared themselves. The fact that such misfortune could happen to me meant that misfortune could barge into their lives, as well. I worked hard to be strong for them, for the children in the ward, for the overworked nurses who were solicitous, but who had other, more injured children, to care for and comfort.

So my pain was something I kept to myself. It was supreme; it blotted out everything else. All I could do was writhe, with mouth clenched tight, with tears leaking down my cheeks. Since it was so overwhelming, I realized that the only thing to do was to let go into it, ride it like a wave, experience it, and then move on. So I had a mantra, one I have used all my life:

:This agony is disappearing even as you feel it. Each second you experience it is already behind you. Each moment you feel this pain is one moment you will never have to feel it again.

This is the approach I have used with every pain I’ve experienced throughout my adult life.There have only been two situations in which it didn’t work.One was the non-progressing labor I had when Jake was born. The other has been Central Pain Syndrome.

With non-progressive labor, your mind knows very well what is happening. In a highly specific and rather rare event, your body is turning itself inside out in order to give birth to another person. In order to accomplish this, your body will push and push and push, ever more intensely, until you either have your baby or die. That’s it: those are the only two choices your body gives you. Give birth, or die. It was almost a comforting thought, because I knew (in the conscious moments between the intense pushing) that the situation would end. There was a definite resolution; it wouldn’t be that long in coming.(Even so, I was in hard pushing labor from 11 at night until 5 in the morning, before my obstetrician called for the operating room.)  I was either going to have a baby, or expire. My life was saved that early dawn by a Caesarean surgery. But I found out the way that so many women, throughout human history, have died in childbirth. It was simply out of their hands. They either had to give birth, or die. If there was no medical intervention to save them, they died.

This is all backstory, to explain some of my prior involvement with extreme, even tortuous, pain. . Central Pain Syndrome is unlike any of the pains that I’ve ever had. I don’t know if having past pain can somehow prepare you for life with CPS, except as a matter of comparison. The comparison between Central Pain and all of these other events is not one of intensity or level. It is one of *psychology,* of the nature and purpose of pain itself. For one thing, there is no definite conclusion that you can see to CPS, as I could with the spinal fusion (you’ll “be healed and well) or childbirth (baby or rapid death). You are never healed from CPS; right now it is incurable. There is no medical intervention that can help you, as a Caesarean does with a “baby malposition..” You can’t get treated, not even with surgery, and relax, knowing that even as it hurts like a sumbitch now, that gradually the pain will subside until it vanishes.

Most of all, you know that CPS pain doesn’t mean that you are dying. It may feel as if you are dying. You may wonder why it doesn’t kill you. How can something that hurts so much, so intensely, mean that you aren’t dying? You expect that your heart will give out, or your brain will stroke, or you’ll lapse into shock, or some other system will stop. You may wish that you would die, even if it’s only to stop the sensations of feeling every pain that Man has ever described, all at once. That is obviously the reason that suicide has been the frequent finale of so many lives endured with CPS, even the life of the first woman to ever have her case written up clinically.

The biggest difference between Central Pain Syndrome and every other pain I have ever had is that my lifelong talismanic mantra doesn’t work at all:

Each moment you feel this agony is one moment you will never have to feel it again.

“Each moment” is now “Every moment.” The vision of a destination where the pain will be gone becomes the vision of Death itself, because there is no other place where the pain will stop, and you will be healed. Hannah Arendt made an memorable comment on torture’s inability to be described to another, that pain itself disappears as soon as we have experienced it. When pain is in the past, we can only recall that we felt it, and how horrible it was. But we cannot recall the actual sensations of the pain. With CPS, that moment of recollection never arrives, because there is never a moment when the pain itself is past.

Central Pain Syndrome is the Terminator of diseases. The way Reese describes that unstoppable force to Sarah Connor: is true of CPS: “Listen, and understand. That Terminator is out there. It can’t be bargained with. It can’t be reasoned with. It doesn’t feel pity, or remorse, or fear. And it absolutely will not stop, ever, until you are dead.”

In many ways, I still feel the sense of responsibility towards those in the same suffering condition that I inhabit, yet are too powerless, too weak, too overwhelmed to be able to do anything to protect or save themselves. A psychiatrist might say that it’s a pattern that I was born into, and have re-created. In the original family situation, I had no choice: my siblings and I were born into a house run by damaged and sometimes dangerous;  parents. But after that, I ended up visualizing myself in that situation, and re-creating that role of protector of the powerless and voice for the mute, whether as the model of fearlessness and strength for the children on the 5th floor Children’s Orthopedic Ward, or the person who could create a voice for the unrepresented graduate students in the Modern Language Association.

All this biography, then, is simply a run-up to the work I must do to make sure that Central Pain Syndrome survivors get recognition, respect, and representation, from both the general public and the medical profession. Thank God there are strong people on the tean, walking this road with me. For the first time in my life, I do not have to carry the burden all alone.

5 Comments leave one →
  1. Carol permalink
    June 11, 2012 2:40 PM

    I remember some of this. Much of it I did not know. You are right. I was a friend who did feel fear. I was afraid for you. But you are also correct in that you were brave. Very brave. I never heard you complain. You stood up to it and faced it. I felt badly as I do now that I was too ignorant or not enough of a close friend to support you.

    The hospital that you stayed in scared me. New York City was a very different place back then. I felt like you were in prison. I was afraid to be there. Afraid to touch you. Afraid that I would hurt you somehow. Columbia Presbyterian was filled with pain and all of it went straight to my core. A few years prior my mother spent a month there for back surgery. Though both procedures were considered cutting edge then, they seem barbaric now.

    I am glad for but also sorry for the stories of suffering that you shared. If you decide to track any of them down, I would love to hear updates.

    I will share that you always seemed so in control of yourself. Your biting sarcasm and quick wit were tools I thought at the time that were helping you. You saved yourself. Unfortunately your parents were incapable of helping you. Perhaps someday you may decide to share the story of your journey with them. There is a linkage in my opinion between them and your health that is transcendant of the medical decisions that they made on your behalf.

    And yes, I fully agree with you about the honesty part. In handling it in the manner that they did, some of your power was stripped away from you. Fear of the unknown in my experience is far worse than the fear of knowing the truth and then having the capacity to attempt to gain some control over it. I saw it as a hospital chaplain and I see it with my own kids who could easily be freaked out by my health problems. I am reasonably open with them.

    Am I surprised about your religious views from back then? Absolutely not. I would have thought that you were a witch! lol I often thought that your favorite sport was shocking people and indeed I think that you did. But it was also something that I admired. It bespoke of great intelligence and wise understandings. The minds of those who can think for themselves can serve to torture them or to nurture them. Often, both occurs. In many instances we were smarter than those who taught us. I say that without arrogance while acknowledging that my comment extends beyond the book knowledge that our teachers were imparting to us.

    Not knowing much about your personal history during high school and maybe having gain just a little afterwards, I would say that you and I had much more in common than you realize. I grew up in a household with high functioning alcoholics; both of whom were abusive. There was no physical safety in my home. In spite of what I think people perceived as being my sweet, perhaps submissive manner, I was called the Heretic in my household. I started challenging Roman Catholicism during First Communion and never let up. Should it be any wonder then that I am a Gnostic priest following 26 years in corporate finance? You were out in the open with your challenges; I waged guerilla warfare. And still do.

    I think that you do great work here. It is important not to hide any of this. Would you objectto me forwarding Bondings to friends or perhaps posting some of these to my Facebook page?

    Would you object to me getting the word out to healer friends of mine about your situation?

    Carol Ryan O’Rourke

    • June 11, 2012 6:00 PM

      Carol,please don’t feel badly that you didn’t know most of this. I didn’t want anyone to know how dysfunctional my family was. For a child, and a teenager, it’s incredibly embarrassing. I had also been sworn to secrecy by my mother, who was terrified that word would get around our small town that my father, the respected town pharmacist, was actually a pill-popper who drank too much, and mentally and often physically abused his wife and children when he was feeling like a loser. I think that the only person who ever knew some of the truth was Sharon. She was extremely strict with me, and wouldn’t stand for me to feel sorry for myself.

      You also have to remember that we were in a class with Nancy, who was the most perfect,cheerful,happy, smart, *normal *person in the world -and it wasn’t just an act. She truly was that way -never questioning, never worrying, never doubtful.It was obvious that she was the Perfect MSJA student, because she was treated as such. She was even blonde! I was never able to get up to her level of sheer good-natured optimism.

      I felt tainted with the Original Sin, the sin of Knowledge.(Wasn’t that apple supposed to come from the Tree of Knowledge?) Watching my parents taught me too much. Watching the customers at the pharmacy, and the communicants at St. Brigid’s and St. Elizabeth;s, and the nuns who taught us, and the entire edifice of the Church, taught me too much. Don’t forget that we also grew up in the age of the Civil Rights marches. I remember the “four little girls” burned to death in a church in Birmingham when I was 7 – their age. I had watched on television as Bull Connor had turned the fire hoses and the dogs on children marching in the same city that spring. That got jumbled up with our policy in Vietnam later in the decade, and the entire Nixon administration. By the time I got to high school, I was convinced that most of our leaders, like parents,lied to us in order to get us to behave. The world was much more complicated and painful than the version we were given by our teachers, preachers, and so-called leaders.

      I don’t recall ever wanting to shock anybody – you make me sound like I was a rebellious,filthy-mouthed, cigarette-smoking dropout! I always tried to be as “good” a girl as possible. I would never bring alcohol hidden in a mouthwash bottle on retreat,the way Barbara did! (Well, she admits now she wanted to be kicked out.) I don’t recall actually trying to shock anybody on purpose. But I do recall with some satisfaction the audible gasp that arose from the assembly when I won the “Betty Crocker Home Leader of Tomorrow” award in our Senior Year. The girl who argued for “Women’s Rights!” and called herself a feminist actually knew how to cook, clean house,take care of children, and fix things? Of course I did; I’d be taking care of my family for years, since my baby brother was born and my mom retired to the bedroom for the next 8 years.

      Yes, I know that a great many of my health issues probably were planted in my upbringing. But it’s 40 or 50 years later. What I want is health and a pain-free existence, to the extent that it is achievable. I want it for myself and for the other people who suffer, from both CPS and from all the other ills of the world. I can’t end war, or destroy society’s prejudices, or save the polar ice caps, or stop men in far-away countries from throwing acid on women who do something to irritate them. But I do believe that I,along with the friends I’ve developed in the CPS community, can make a difference in the way this one scourge is experienced in the world.

      I’m sorry that I didn’t know more about your situation at the time.You think I was trying to shock people? You always seemed extremely self-effacing, almost scared to participate. We were in tiny classes, in an all-girls school, certainly the safest place we would ever be to put forward our ideas and try on leadership roles. “If not then, when?” was always my attitude. How did you finally break out of that?

      All I can say is that I hope to the Godhead that I haven’t screwed up my own child so much that he gets sick in 30 years.

    • June 11, 2012 6:02 PM

      And no, I would be happy if you forwarded anything I have written, especially about CPS. The point of this blog is to try to reveal CPS to as many people as possible. It’s also where I can practice writing parts of the autobiography my friend Jim is always pestering me about 😉

  2. Carol permalink
    June 11, 2012 6:38 PM

    I’ll stand by the shock comment because I meant it from the standpoint of intelligence. While you were always respectful, you ran circles around people intellectually when you wanted to. Often they did not even perceive it.

    How did I break out? I was never really contained. In order to survive in a household where there was abuse and NO chance of getting away from it, I learned how to “take the temperature” of every situation and then become a master of cover-up, seeking to keep a low profile. At age 20 I was gone and married shortly afterwards to a husband who was similar to my parents. Ugh.

    Marianne and Sabrina may have been the only ones at school who had some sort of clue about my situation and even that, was neglible in the scheme of things.

    While you saw me as being self-effacing, in reality I was fighting for my life at home while still trying to maintain some shred of my integrity. My mother constantly accused me of being possessed by the devil. I too often made the mistake of questioning things like original sin, papal authority, the existence of God, abuse against women in the church and more. It was a side that few saw but a mantle that I took on by First Communion.

    I have always wanted to get along. Yet I could never reconcile what I perceived to be “truths” as I understood them. I kept that life hidden. When I finally announced after my father’s death that I was entering seminary, people were shocked. I did not share with anyone until my late 40’s that I had been “celebrating” Mass since elementary school. As I got older I redacted the parts that I disagreed with. At age 12 I began studying Buddhism. I took on Zen meditation which did not please Sr Angelica years later. At heart, I am a Celtic priestess and very pagan. I became involved in esoteric practices during my teens.

    I always admired you for being able to speak your mind during high school. I never forgot it. I went alternate route. I lived a life filled with such fear that it was the only way in which I could survive. Now, more often than not, I speak my mind and piss other clergy off frequently. Male clergy from many different traditions get absolutely apopletic with me. It is funny how the male energy cannot tolerate the common sense of the female. Oh well. That’s another whole story.

    Getting to the meat of it……. What you are doing is wonderful. The more that matters like these are brought out, the more help there will be.

    I would love to see discussions about CPS and suicide; CPS and depression; CPS and how to deal with the drugs and their effects. Much of what you write relates to me even though I have different diseases. The recent one on falling was particularly apt. The one on feeling like a drugged up zombie was another. For my own part, I do not trust the drug companies nor many doctors. I say it from personal experience. But these are things that can be talked about and you will if you think that they are of value.


  3. Gale permalink
    August 28, 2013 2:05 AM

    Hello, I also had spinal fusion on about 1973. I wore a milwaukee back brace whenever it was discovered that I had Scoliosis. The brace did not stop the curvature. So I had surgery, spinal fusion, and they put a rod in my back. I too had to stay in bed for weeks, actually months I believe. Anyway after some time I had to go get an x-ray to see how the fusion was holding, and the rod they had placed in my back was broken. Maybe the strain because I had a pretty significant curve. I am not really sure, especially now that I hear about other people’s rods breaking. They had to take the rod out, so that required another surgery. Then a few years later my left leg, which was longer than my right leg because of the Scoliosis was shortened. Again for the third time I had to stay in bed in a full body cast for months.Anyway it is a long story, it was just interesting to hear about someone else going through something like my ordeal. I sometimes felt like a pioneer in Scoliosis surgery, etc. This was back in the days before they checked kids for Scoliosis.

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