Disability: First, Do No Harm; Second, Listen

[Content Note: Surgery, Pain, Depression, Infertility, Mental Disorders and Ableism Language, Graphic Descriptions of Medical Mis-Care]

Ana's Note: This would normally be a Narnia day, but I wanted to take some time to talk about my 5/29 surgery in a couple of rambly posts.

"The most basic of all human needs is the need to understand and be understood. The best way to understand people is to listen to them." -- Ralph Nichols

On May 29th, 2012, I took a major step forward in my lifelong career of being Not Listened To by medical personnel by trusting that a white, male, privileged, American surgeon might put his needs ahead of my own in order to help improve the quality of my life.

And, to be honest, the jury is still a little out on that one. And will be for sometime. 

But let me first back up. When I was in my late-tweens/early-teens, I was diagnosed with scoliosis. My family and I didn't really know what that was and it sounded kind of serious, but the doctors seemed to believe that my version of the disease -- with a 45 degree of spinal curvature -- wasn't that bad. I'd need a little minor spinal fusion surgery, five vertebrae would be solidified into a single bone mass, a metal rod would be welded in place to provide some support, I'd overall lose some range of motion, but I'd be fine, really. I'd be able to grow up and have babies and take horseback lessons and ride roller coasters and play the piano with my bare feet. Certainly nothing to panic about, and because the world was young and we were innocent and Google didn't exist as part of our cultural vocabulary, this all seemed very reasonable and dealable with.

So we dealt with it.

The dealing with it was not, actually, all that fun. In the first night after the surgery, my pain medication IV popped out unbeknownst to the nurses and as I complained of higher and higher pain, the doctors and nurses scrambled not to fix my pain, but to explain it away. "Of course she's going to be in some pain; she's just had surgery," they chided my increasingly frantic mother. And thus were my complaints of pain something shoved aside, ignored, and ultimately not listened to. Probably my popped IV would never have been discovered at all except that finally -- hours after I'd begun to pass in and out of a gurgling semi-consciousness -- my pulse and blood pressure elevated high enough that a more serious investigation was launched at which point it was noted that the IV that had been taped into my back had fallen out some hours before. Whooops! Once the IV was reinserted in my wrist, however, everything was lovely forever, or rather it was supposed to be.

When I had my surgery performed as a child, that particular spinal fusion surgery was not the most long-established surgical practice in the world then but neither was it new -- indeed, it was old enough then that I was part of the last generation of children to receive the Harrington rod construction; soon the world would move on to newer and better things. So it really should not have been a surprise to medical professionals when pain began to encompass more and more of my life in the years after my surgery, due to the simple and utterly-foreseeable fact that my spinal fusion surgery had failed in one of the most common ways that spinal fusion surgeries are known sometimes to fail: I had pseudarthrosis.

And yet, inexplicably, it was treated as a complete mystery as to why my surgery didn't alleviate my back pain. I went to yearly check-ups at the childrens' hospital and mentions of my constant "background radiation" pain were met with exhortations to myself and my family that "of course she's going to be in some pain; she's had a back surgery." And once again, my complaints of pain were shoved aside as nothing more than histrionics, as attention-seeking, as something not worth listening to. When my parents persisted in their advocacy -- "but she's in so much pain, surely this can't be right!" -- they were told to go away and buy newer, better things: clothes, shoes, mattresses, cars, carpets, couches, wheelie backpacks. Clearly our problem was that we were buying the cheapest versions of these things, and spending more money for higher quality would make all the difference in the world. My parents, blessed with good jobs and good educations and good intentions, did the best they could, but the situation didn't improve.

When I was too old to visit the children's' hospital anymore, I was shuttled from specialist to specialist, all of whom did the exact same sequence of things:

1. Take yet another x-ray to verify that the metal spinal implants were in good condition.
2. Give me pain pills that failed to assuage my pain. 
3. Diagnose me with depression when -- after weeks of bullying -- I'd cry in frustration at being repeatedly told my pain was all in my head since the pills hadn't alleviated it and the x-rays had shown no cause for it.

And so now I had a documented medical history of mental illness and mental disorders, all because I stubbornly continued to insist that I was in pain even though I "shouldn't" have been. The machines taking the x-rays reported back that my spinal hardware was clean and operational; the experts measuring out the medication dosage insisted that no pain could survive the medical miracle science being poured down my throat. My statements to the contrary were not worth listening to, except insomuch as they provided a fascinating psychological profile as to how mentally disturbed I clearly was. 

---

When I went to a dedicated scoliosis center in 2010, I went after having seen over 40 doctors and specialists and after having been diagnosed with and medicated for depression dozens of times, simply because I felt pain that those doctors couldn't explain. I had, after all, had the scoliosis surgery. Everything was supposed to be all better and the x-rays indicated that the Modern Medical Miracle Science rod in my back was still straight and shiny and clean. Clearly my problem was mental, and in 2010 I was just about ready to accept that. I would make one final effort to be heard and diagnosed and if this newest guy said it was all in my head, I'd let it all go and start seeing a therapist for realsy. I didn't feel like I had the emotional strength to keep fighting to be believed.

When I met the man who would become my surgeon in 2012, the first thing he said to me was "I can tell you exactly what's wrong with you. I just can't understand why no one else has been able to when it's so obvious." And then he showed me, right there on all those dozens of x-rays, where little gray blank spaces lay between my supposedly-fused vertebrae. Vertebrae that, had they been fused into a single bone mass, would have presented to the x-ray machine only an unbroken white line.

I wanted to kiss him, right there and then, for finally validating what I'd known in my heart to be true all my life. I was in pain. And now, thanks to this man, I could prove it. People would have to listen to me now. People would be able to finally help. But the problem with the medical community is that it's Not That Simple. Here I had a doctor who finally understood what was wrong with me, but I wasn't anywhere closer to having a doctor who understood the importance of listening to me.

And this is important. Because people respect things that are wrong with you. "I have an upcoming surgery" has opened so many doors to me in the last few days that I wouldn't have believed possible. "I have an upcoming surgery." Bing! Government medical parking permit that I've been trying to get renewed since college. "I have an upcoming surgery." Bing! Extended company medical leave that some of my friends in the same company have been struggling to obtain for their personal needs for years. "I have an upcoming surgery." Bing! Extreme pixie cut with bright red highlights without even a whisper of the obvious but-you-have-a-fat-face caution from the hairstylist.

But even though many people, and most doctors, respect what is wrong with me (once diagnosed as such by the proper medical authorities and not merely a function of my own personal experience and intuition because obviously that is woo and is not to be trusted), that doesn't bring them automatically closer to listening to me. And the same unwillingness to listen to me that kept me from being correctly diagnosed for over a decade of my life reared its ugly head again from the moment I checked in for surgery in late May to the moment I was released to go home in early June. 

---

The weekend before my surgery was spent at the hospital, as part of what they call "pre-op". And let me just say that the genius who came up with this plan needs some serious quiet time to go sit in hir room and think about what zie has done, because here is how pre-op works here: you show up at 8:30 am to be checked in for a chest x-ray and blood work, then you go over to the doctor of Internal Medicine for an EKG and to be generally cleared as healthy enough for surgery, and then you go over to your specialist surgeon to finalize the approach for what precisely they will do to you in surgery, and then finally at around 2 pm you and your family will receive a tour of the facilities where you will be staying along with a list of rules about visiting hours and locker locations and you will have a nice chat with an occupational therapist who will tell you what items you need to bring for "practice" (shoes for walking, clothes for dressing, underwear sized up for water retention, etc.).

And there is literally nothing that is not wrong about this stellar plan because:

• You are not given time for lunch, so you're absorbing a lot of high-mental and high-emotional level material on a rapidly dropping blood sugar level.
  
• You are expected to duplicate everything from the eight different allergy forms filled out to the multiple different x-rays for different departments and really I have had SO MUCH RADIATION EXPOSURE IN MY LIFE and WHY CAN'T YOU PEOPLE SHARE THESE THINGS.
  
• You are given pretty much no time to roll with the punches, such as the bombshell dropped on me by my surgeon that not only would he not be taking the old-and-no-longer-providing-structural-benefits metal OUT, but he would also be adding new-and-therefore-associated-maintenance-risks-for-the-future IN. And he would be doing all this through a new scar going from shoulder blade to tailbone instead of going through my old scar that zips from shoulder blade to hip which means I now feel irrationally lop-sided.
  
• You are doing all this literally days before surgery, and long after having been cleared to take time off for work, which means that if the Internal Medicine guy refuses you clearance, then you've wasted a LOT of time and effort getting to this late in the game...
  
• ...and even if you are cleared, the whole "buy button-up shirts and sized-up underwear between now and then" guarantees that the pre-surgery days are going to be stressful and packed with emergency shopping that could have been taken care of long before if only you'd known you needed to.
  
• And for all that, most of the information ended up being wrong: in actual playthrough, OT wanted me to walk in my socks (sans shoes) and leave my hospital gown on (sans button-up shirts) at all times (sans underwear) for various unimportant reasons.

But you know what? Whatever. Que sera sera. This isn't a post about inefficiencies in the medical community and how I could schedule everything better if they put me in charge because yeah, no. Instead, I mention all this so that I can tell you what happened in the office with the Internal Medicine Guy who was charged with clearing me as healthy enough for surgery. Because the Internal Medicine Guy looked me in the eye and asked if I had any preexisting conditions not listed in my chart that they might want to know about going into surgery. And I thought for a very long moment before deciding that I did in fact have one that he needed to know about. And I said, very carefully, "Well, you will probably want to write down that I've been diagnosed with Chronic Fatigue Syndrome based on extremely high elevated levels of Epstein-Barr virus in my blood."

And he smirked at me.

"These doctors," he said, with a conspiratorial shake of his head and a mischievous wink of his eye, "they don't understand that everyone on earth has Epstein-Barr virus in their blood. They'll diagnose anyone with CFS these days, I swear. I really don't think that you need to worry." He didn't quite pat me on the head, but the offer seemed to be on the table.

I stared at him, a little perplexed and not at all sure how to clarify the situation. Yes, I said, I knew that everyone on earth had low levels of the Epstein-Barr virus. I explained that my doctor had diagnosed me based on extremely elevated levels within in my blood, as well as a number of supporting symptoms as well. The diagnosis had been with me for two years and had seemed to have been borne out through home care and lifestyle treatment. I'd additionally read that CFS could cause complications in surgery and with blood transfusions and I thought it was worth writing on my chart.

This didn't seem to be what the doctor had been planning to hear. He became testy with me, explaining that maybe I did have CFS, anything is possible, after all, but it wasn't like a world-renowned leader in CFS studies hadn't worked just two floors above him until his recent death and it wasn't like they hadn't been close enough friends for the CFS-expert to recommend "The Girl With The Dragon Tattoo" to the Internal Medicine Guy as worthwhile reading, so it wasn't like he knew anything about all this, but all he was saying was that he really didn't think I needed to be so worried about it.

And at the end of all that, the words "Chronic Fatigue Syndrome" didn't go into my chart. It was almost as thought I'd never said them; certainly, no one in the room had been ready to listen to me.

---

Later that same day in pre-op, we met with my scoliosis surgeon. And though we'd been planning this surgery, he and I, for two years almost to the day at that point, and though I'd been adamant throughout that I wanted no new metal attached to my spine (I wanted the old metal taken out, but he'd felt it would be unsafe to do so and I'd capitulated), on this last final visit before my surgery, he announced that more metal would go in.

Period.

I wasn't given a chance to discuss it. There wasn't the time: he had to go off to see another patient, and at that point what could I do? He was the expert. I was the patient who'd filled out reams of leave-of-absence forms for work and made hotel reservations and made a thousand other plans, none of them easily unmade. No explanation was given for how much more metal would go in, at no point after the surgery would the new x-rays be brought in for me to see, at no point was my consent or my opinion in the matter considered even remotely of value. I was left numb, shaking, and biting back tears.

Before he left the room, my surgeon off-handedly noted that we might have to do a third surgery at some point in the future and that we'd "just have to see". After he swept out of the room, I looked at Husband and bleakly asked if he thought my surgeon had ever heard anything I'd said to him in the past two years worth of planning.

---

On the day of the surgery, I arrived at the hospital at 5:30 am, nervous, shaking, and having had zero food or liquids since midnight the night before.

I also arrived not pregnant. 

At almost every moment within the last two years, I have been intensely conscious of the fact that I am not pregnant. My husband has had a vasectomy. I am infertile. I have periods that are so irregular that I can't swear to ever having the same cycle length twice in my lifetime, let alone twice in a row. I barely bother to even map the cycle dates anymore because doing so reminds me that I am not now and will never be pregnant. But I simply cannot visit a hospital without getting the Spanish Inquisition about the state of my uterus. The last time I was at my local hospital for a routine x-ray, I had the question popped on me whilst I was naked-under-a-gaping-gown and alone with two very young male x-ray technicians, who kept confusedly asking me if it would help if they "got me a calendar". There are not enough teaspoons in the world for that situation.

Now not thirty minutes before going into my surgery this time, a wild-eyed nurse barged into our waiting room with me in full-gown regalia, IV drip already in place, and having fasted the night before (so therefore not a lot of urine available for me to give) and dramatically announced that my surgery would have to be canceled if I couldn't PROVE right there and then that I wasn't pregnant. "It's okay," I said, I little relieved to have a ready answer. "My last period was six days ago." This was not good enough. "And I'm infertile." Not good enough. "And my husband has had a vasectomy." Still not good enough.

If it were not hard enough to be childless-not-by-choice, I have to go through this Every Single Time I experience healthcare. This surgery had been on the books for months, but I couldn't be trusted to make sure I didn't get pregnant in that time period. They were just about to start drawing blood for a blood test -- blood that I very much needed inside me in preparation for the upcoming surgery -- when I finally managed to produce some urine that could have been my husband's for all they knew since it wasn't like they monitored me giving it. "Good news!" one of the nurses crowed cheerfully from the bathroom where she was dipping the pregnancy test into my Dixie cup. "You're not pregnant!" So now cue me biting back more tears.

And, once again, in the name of Lawyers Everywhere and Unborn Unicorn Baybees, one more patient is traumatized for owning a non-working uterus and for living in a world that simply refuses to prioritize listening to patients.

---

After I woke from my surgery, I was in pain. Horrible pain. The worst pain I have ever been in, bar none. Full-on, no-holds, please-kill-me Aliens-style pain.

"I am in pain." I informed every nurse and every doctor that walked in that ICU room for the next twenty-four hours. "I am at a Pain Level 10." And each-and-every one explained to me, very patiently as you would to a particularly dense child, that, yes, I had just had surgery and that I would experience some pain now. And that that was very, very normal. And did I want a pat on the head, presumably. And each and every one of them would not listen to me.

"I know I have had surgery." I would reply very calmly. "I have had this exact surgery before, many years ago. I know the difference between normal post-surgical pain and abnormal post-surgical pain. This is the latter, and there is something Very Wrong." And each-and-every one would gently explain that every surgery is different and you can't compare one with the other and that it simply is not possible to take away pain entirely after a surgery. And each and every one of them would not listen to me.

"I want you to check my IV." I explained that all this had happened before, when I was a child, and that I believed that maybe the IV had come loose or that something was wrong with the drug delivery system. And each-and-every one of them assured me that the IV was fine without bothering to even check it, and that everything was wonderful, that my blood pressure was just fine and didn't indicate high levels of pain, and that the pain I was supposedly experiencing was actually all in my head and not real at all and I needed to relax and stop working myself up into a frenzy. And each and every one of them would not listen to me.

Because of course I am too childlike to understand the difference between appropriate-pain and inappropriate-pain and I was instead, obviously, just bucketing all pain in the Do Not Want bucket of inappropriate-pain. And of course I am too mentally disordered to be able to experience any non-psychosomatic pain and I was instead, obviously, just mentally conjuring up pain because of female hysteria or something. Because the alternative was that the machines might not be working or the patient might be unique and what with both of those things being unthinkable, each-and-every doctor and nurse in the lot of them could safely ignore whatever came out of my mouth to the contrary.

---

Twelve hours after my surgery, while I still writhed in pain and begged someone to diagnose why my pain was so excruciatingly high, my husband was asked to leave the ICU and "get some sleep" since there weren't any cots in the ICU for him to rest on and since visitors weren't really supposed to spend the night there anyway. I wasn't thrilled about being left alone for the night while I was still in excruciating pain, but I told him to go on and that I'd call him if things got worse.

On his way out, I had the pleasure of meeting my night nurse. My night nurse -- a nurse I shared with one other patient, due to the ICU ratio of one nurse to two patients -- was very young and very brusque. When I'd asked if she would check if my IV was operating properly (I'm so sorry to be a bother, but I'm really hurting really badly), she'd briskly reprimand me that "of course you hurt; you've just had surgery" and then left the room without checking the status of my IV. When I asked her the current time and when the pain specialist might be expected to arrive, she'd picked at her nails and said in a bored tone that she didn't know and I'd have to "ask someone else".

But the turning point of the evening came when the medicine in my IV ran out and my monitor beeped for seven minutes straight with no response from anyone on the floor. As my already-high pain began to escalate further, I began to panic. No one answered my "nurse call" buzzes or weakened vocal pleas for help, so in desperation I started carefully-and-gently banging my Nurse-Call-slash-Bed-Remote-slash-Television-Control on the side of my bed rail for a loud clang sound that I hoped might resonate down the long hall. That got my nurse's attention, and she strode angrily into the room within less than a minute after the banging started.

"What do you think you are doing?" she demanded.

"I --. My IV is out of medicine. I didn't think anyone heard the beeping or the call button, so I --"

"We can all hear your IV. That doesn't mean you're the most important person here because you're not."

"I'm sorry," I stammered. "I didn't mean to be trouble, I just didn't know how else to get help."

"You wait."

I thought about that for a moment while she surlily replaced the bag of medicine in my machine. My mouth felt dry; I hadn't been allowed to drink anything for going on twenty-four hours. I felt miserable and tired and in so very much pain. I decided to swallow my frustration and try to be as meek as possible. "I'm sorry. May I please have a sponge of water?" I gestured at the little water sponge popsicles I'd been allowed to suck on once every few hours.

She glared at me. "Just one, but then I have to go deal with my other patient and you have to stop calling me in here for every little thing just because you're bored."

And that was when I made a decision. It wasn't one I could have made years ago, and it's not one that everyone has the privilege to make. But I had the privilege and I was too scared and too pained to worry about social Good Girlism any longer and I heard myself saying:  

"Will you please call my husband and get him back up here?" 

There's not a happy ending to this story, by the way, where suddenly I grew a back-bone two sizes too large and everyone started listening to me and I stopped being pushed around by the Patriarchy forever. I'd asked for an advocate (and, in doing so, asserted that the hospital was failing in their duty to advocate for me) and I'm proud of myself that I did, but that doesn't change the fact that my nurse flat-out refused to do so.

She pointed out that it was 4 am and that my husband was "probably sleeping" and that I had "no reason or right" to disturb him at this hour. I argued that he could get me the water sponges that she didn't have time to get me, and she countered that with shaming: I might be a bad enough wife to insist on my husband being woken up over a little thing like my being thirsty in ICU, but she wasn't going to be a party to it. But because I simply couldn't bear to be in pain and alone for a moment longer, I clenched my teeth and told her that he was my husband and she would call him for me whether she agreed with my decision or not, thank you very much.

She left the room. When my medicine needed changing out an hour later and she popped back into the room to turn off the beeping machine, I asked her if she'd reached my husband. "His phone was off," she said shortly. That didn't surprise me; he'd probably turned it off without thinking before falling into bed. "Then I need you to call my parents," I said. They had the hotel number where Husband was staying and they could get through to him or they could come down and advocate for me in person. Once again, she refused and at this point -- almost 24 hours from being cut open by a surgeon and in the same searing pain I'd been in since the moment I'd woken up afterwards -- I finally and simply passed out cold. I literally didn't have the ability anymore to try to make them listen to me.

I have two memories after that one, so hazy and close together that I can't remember which came first.

One memory is of Husband gathering me up in his arms and promising not to leave me again, no matter what the ICU people told him to do. The second memory is of an older man asking me if I'd ever taken anything that might impact the behavior of my internal pain receptors (possibly marijuana or some other recreational drug?, he suggested sternly) and my dazedly insisting that if I had, I'd happily tell him so if it would help him stop the the pain, but I hadn't.

Both these incidents -- the summoning of my husband by the hopsital and the arrival of the pain specialist -- had the same root cause: after my final fainting bout, my blood pressure had tanked to the point where my pain could finally be taken seriously. Once again, I could be recorded respect because there was something officially wrong with me: the machines said so! But once again, a tremendous amount of harm could have been avoided if only people had just listened to me from the get-go and had started working on my pain based on what I was telling them and not based on what they thought the machines were reporting.

It turns out that I'm one of those rare people whose pain receptors don't function in the same way as almost everyone else's. I have normal pain tolerance -- what makes you say "ow", makes me say "ow", too -- but I have really bizarre pain medication tolerance in that what provides relief for most people does nothing for me. We were finally able to stabilize me, according to my surgeon, by putting me on a level of narcotics that would "kill most grown men". And my surgeon might have known to expect that in advance if he'd taken note of my forty previous doctors who'd prescribed me pain medications and then marked me as either "Liar" or "Lunatic" when I reported that the pain pills weren't doing anything for me.

Isn't it odd, though, that this problem with pain medication has been something that has been with me for much of my adult life and yet wasn't with me during my early hospital visits as a child? That could indicate that the cause of my condition isn't genetic, but rather something that I accrued in my adult life. And it just so happens -- as an interesting little data point to throw out there -- that people with CFS may have a high correlation with strangely behaving pain receptors. Which is the sort of thing the Internal Medicine Guy might have wanted to know about before going into surgery.

But knowing about my history with pain medications and knowing about my issues with Chronic Fatigue Syndrome requires more than a fancy degree and expensive machines and shiny doctor coats. It requires listening and I'm still far from convinced that that particular trait is one that is in any kind of supply among the surgeons down here. I pray nightly that this surgery will help me and won't turn out to have been a huge waste and a big mistake. But we're not off to the best start so far.