Wednesday, January 20, 2021

How Sexism and Anti-Semitism Almost Killed Me

Last May, I was rushed to the Emergency Room with what turned out to be severe, acute pancreatitis. I was close to death. I was in the hospital on morphine for a week just to stabilize me enough for the surgeon to remove my gallbladder. Only then was it safe to send me home for my long, painful recovery (also on opioids, a very triggering experience for me, a child trafficking survivor who'd been forced to take heroin).

I'd had the same symptoms before, and even ended up in the ER six years earlier, but a male doctor had told me there was nothing wrong with me. 

Later, I learned that pancreatitis attacks (caused by gallstones) run in my family, something I would already have known if 20th century antisemitism had not ripped my family apart.

In other words, in a very real way, sexism and antisemitism almost killed me. 

As painful as it is to revisit the trauma of May, the years of suffering that preceded it, and the months of painful recovery that followed, I feel it's a story that should be told. Because I know it's not just my story. Stories like mine are legion. 

And not everyone is lucky enough to live to tell the tale.

I don't think I need to explain how sexism negatively impacts the quality of women's medical care. I know that many of my readers are like me: female sexual abuse survivors, suffering from chronic pain. Sadly, then, I assume that you already know how often women in pain are disbelieved or misdiagnosed by doctors, and how we're even less likely to be taken seriously if we have a trauma history. (For more on the topic, click here.)

No, I don't think I need to explain any of that to you.

My only image of my great-great grandmother from the Ukraine. None of her American family has been able to learn the fate of her relatives in the Holocaust.

But I would like to give you a quick, simplified overview of why so many eastern European, Jewish families were torn apart in the 20th century. Even if you're Jewish, there's a good chance you don't know this history. I didn't, not until I started the very difficult job of doing my genealogy a few years ago. 

Starting in about 1890, a huge wave of Eastern European, Jewish immigrants began arriving in America. Many, perhaps most of them, were what we would today call refugees, running from the pogroms in the Russian empire. Pogroms were extremely violent, government sanctioned, antisemitic riots in which rioters destroyed Jewish property and shops, raped women, and beat and killed men, women, and children. 

You can just make out the scar on the left side of my grandfather's forehead. It was caused in Lithuania, when a Cossack's horse kicked him when he was a toddler.

Even those Jews "lucky" enough to not be the victims of pogroms suffered multiple forms of terrible, systemic, antisemitic oppression and persecution that kept them in danger and extreme poverty. My own grandfather had a crescent shaped scar on his forehead from the kick of a Cossack's (Russian soldier) horse when he was a toddler. I'm imagine this contributed to his parents' decision to move to New York.

One of my Lithuanian, family branches in South Africa

This wave of Jewish refugees to America continued till about 1920, when the attendant, growing, American antisemitism led to a change in immigration policies, specifically to reduce the number of "racially inferior," Jewish and Italian immigrants. This is when Jews began to flee in larger numbers to countries like South Africa and Argentina where, with great effort, I have found family branches.

In all of these new countries, some in the older generations simply did not talk to their children about life in "the old country." It was too painful. They wanted their children to have a fresh, trauma-free start. Family knowledge was lost.

One of at least two cousins (probably more) executed by Stalin on trumped up charges of treason. His last contact with American family seems to have been in 1934. We can't figure out who that family was.

At about the same time, Stalin rose to power in the Soviet Union. The regime was already antisemitic, but Stalin's paranoia made it very dangerous to have any western (ie Capitalist) family. Since so many Jews had relatives in western countries, this put them in further danger. To protect themselves and their families, elders simply stopped talking about western family. They often also terminated all communication with those relatives. Again, family knowledge was lost.

My cousin, Ilia, in Latvia, whom we assume was murdered in the Holocaust. We may never know for sure.

And then there was the Holocaust.

This is not something I care to dwell on now, but suffice to say that a lot of my relatives were murdered. Letters to Jewish families in America, South Africa, South America ... they just stopped. In the chaos that followed the war, survivors and family overseas sometimes never found out what had happened to their relatives. Those elders who did know often chose not to tell their children, to protect them from the horrors. It would seem that this is what my own great-grandfather did.

My cousin, Berka, and his cousin, Bela, in Lithuania. Both of  them survived the Holocaust. Amazingly, I have been able to trace Berka's descendants, and to make contact with Bela, who is alive and well in Israel.

The survivors? They were Displaced Persons, without addresses, trying to figure out what to do next. Some went to Israel, if they could. Some who did still have contact with western family moved to places like America. Some either chose to stay in the USSR, or had no choice - and felt it safest to have no contact with family outside of the Soviet empire. Family knowledge was lost by the time Soviet Jews were finally able to escape to Israel in the late 60s, and the early 90s.

(Please don't think the problem of antisemitism is all in the past. It's not. It's on the rise yet again. In the past four years, I have been on the receiving end of numerous, antisemitic attacks, including Holocaust denial, and I have seen neonazis, boldly displaying their badges in my liberal, urban, Canadian neighbourhood.)

From Knee Deep in Shit: Insurance Companies and My Fight for Survival

All this is why, as my digestive health got worse and worse, I didn't tell my doctors, "My family has a history of gallbladder trouble. Maybe we should test for that." 

I didn't tell them because I didn't know. How could I? How could any of us?

So that's the backstory. Now on with the story itself.

If you read my blog, you know that I've been struggling with digestive problems for a long time, decades actually. Unbearable indigestion, daily diarrhea, sick stomach, frequent inability to eat a balanced diet without unbearable pain... 

Me, at about 32. From Gym Bunny to Cripple: How Child Trafficking Destroyed My Back

When I was younger, these problems (combined with excessive exercise) had caused me to become underweight at times, till I asked my GP for a prescription to control my stomach acids enough that I didn't keep turning away from food in disgust. 

That did make it possible for me to keep from losing too much weight, but I was still often up in the middle of the night with severe "indigestion," thinking I might vomit, eating yogurt and antacids to try to calm. I always had various remedies on hand: yogurt, mint tea, dry crackers, ginger-ail, antacids. Nothing really worked.

I also often had diarrhea. Until I became disabled, I was very physically active, often walking or jogging home from work, and I'd memorized all the public washrooms along the way, especially those that afforded me some privacy. Having diarrhea in a public washroom is humiliating!

I told myself it was all just stress. Isn't that what doctors always tell women when they're in pain? It's just stress?

Things got worse over time. When I first became disabled, loathe to take the offered opioids, I took a prescription anti-inflammatory several times a day for months. That did not help. Though I finally stopped taking them, my problems with diarrhea did not go away.

Almost seven years ago, I went to the ER with a terrible pressure in my stomach. You could literally see it: my stomach was visibly distended. The male, ER doctor ran a few tests, including a CT scan, declared me fine, and sent me home with Tylenol.

Yes, Tylenol.

As I describe all the physical and emotional suffering that followed, remember this: It was all avoidable. None of this had to happen. If I'd had a proper diagnoses sooner, my body and my soul would not have had to go through this horrible, endurance test.

But I didn't know that then.

The thing is, as a woman, as a woman with a trauma background, as a woman with fibromylagia (which it took 30 years to diagnose), I was used to being dismissed and patronized by doctors. I'd had a lot of variations on "It's all in your head," for so long, I'd started to believe it.

I left the ER that night nearly seven years ago thinking, "I'm so embarrassed. I made a big deal out of nothing. It was just stress, that's all, and it gave me a tummy ache. Of course there's nothing they can do for me at the hospital - because there's nothing wrong with me. I just need to pull myself together."

I kept telling myself that for years.

Over those years, my symptoms worsened. There was often an unbearable pressure in my stomach, that no antacid would touch. Sometimes that pressure created a band of pain around my back that made it hard to breathe, or sit, or lie down, or do anything. I feared leaving the house in case an attack of diarrhea hit while I was out, and I couldn't get to a washroom. Even if I could, it was humiliating to spend so much time in public washrooms. I couldn't eat a balanced diet because so many things aggravated my guts. I felt dehydrated and malnourished a lot of the time.

From Disability Style: What I Wear When Everything Hurts

I could no longer wear pants, skirts, leggings, or tights, because the pressure of the waist band on my belly made me sick. Some days, even a non-elastic waistband on a dress was too painful.

From Disability Style: What I Wear When Everything Hurts

I had to get creative.

My GP, not knowing about my family's history with pancreatitis, and seeing that the ER doctor had given me a clean bill of health, diagnosed me with IBS, Irritable Bowel Syndrome. This wasn't a huge surprise, since IBS is a symptom of Fibromyalgia, which I do know that I have. She prescribed two low doses of Imodium a day. 

It helped, but didn't cure. Instead of running to the bathroom ten times a day, I was running to the bathroom a few times a day, at least on good days. I was still having trouble eating some foods. I'd still get that strange pressure in my stomach, and band of pain around my back.

I thought I just had to learn to live with it.

Meanwhile, I started to bloat. 

From Fat Shaming, Victim Blaming, and How Disability Twitter Made Me Feel Like a Superhero

A lot. 

I'd always had an hourglass figure, no matter what size or weight I was. But now, my belly was growing disproportionately to the rest of my body. I thought my changes in weight and shape were down to menopause and my inability to exercise. 

I thought I just had to learn to accept it.

And, man, did I ever try. But it took a terrible toll on my self-esteem. I didn't feel that I looked like myself anymore. I felt guilty and ashamed: What was I doing wrong to keep gaining weight like this?

Meanwhile, more and more, I had an overall feeling of ill health. I often told Beau that I felt poisoned, like the fluids in my body were composed of green battery acid, that caused my flesh to feel prickly and puffy. Even my limbs felt leaden, almost feverish,  infected.

I was pretty much right about what was going on. Bile is, "a bitter greenish-brown alkaline fluid that aids digestion and is secreted by the liver and stored in the gallbladder" [definition from Oxford languages]. My body had stopped processing bile properly.

The main thing was that I felt poisoned.

By April and May, I was getting alarmed about my belly. It just didn't look right, and it didn't feel right to the touch. It was big and round, and very hard, not soft like fat. My belly didn't look fat really. It it looked swollen, misshapen, distended. 
What could it be?

Remember, Covid lockdown had just begun. I vowed to check with my doctor once Covid was over, which I thought would in a few months.

And then came that night in May. The pressure in my stomach felt like an expanding ball of steel, pushing outward, and extending in a band around my back, simultaneously squeezing my ribs, and pushing them outward, till they would crack. We took this photo that afternoon. I can see my pain and bloat in the way I'm sitting.

But, no matter, I said, I'd had these symptoms before. Many times. I'd be fine.

But, by about 10:00pm, I found myself remembering a friend's description of pancreatitis. We looked up the symptoms and ticked many of the boxes. But I didn't yet have a fever, and I hadn't thrown up, so I decided I was fine.

Sometime around midnight, I had my first experience with projectile vomiting. It didn't feel like throwing up. It felt like poison exploding out of me.

I ended up on the bathroom floor, lying in my own shit and vomit, screaming to Beau to "HELP ME! MAKE IT STOP!" 

Except, Beau told me later, I wasn't screaming. I was whimpering. 

Through my entire, extremely painful life with disability, I have refused opioids. By the time I was twelve, or even younger, my smother was often forcing me to take heroin. It helped her control me as she continued to sex traffic me. I went through painful withdrawal on my own at 17. 

No way I was going through that again!

But five minutes on that bathroom floor, and I was telling Beau, "I need morphine."

I have since had three women tell me that pancreatitis is more painful than giving birth.

This is not my EMT, but this how they were dressed.

Beau called 911. Remember, this was all happening during Covid, so the EMTs arrived in full PPE. They had no doubt that I needed to go the Emergency.

When they told me that Beau couldn't come with me in the ambulance, I was so scared, I started screaming, for real this time. Without Beau, I knew I would not be able to endure this much pain, my fears of morphine, and my fear of the Emergency Room during Covid, all at once. Beau told them I have PTSD, and that he's my caretaker. They relented and let him come with us.

First, though, they had to get me to the door. They kept telling me I had to stand up, but I knew I couldn't walk at all, not even with my walker. I kept blacking out from the effort of trying to explain to them a method that might work. Eventually, I explained enough for one of the EMTs to suggest I grab her calf so she could literally drag me out of our tiny bathroom to my walker. (I'll always remember saying that her extremely muscular calves were down to her love of hockey.) I then got on my knees, elbows on my walker seat, and crawled to the front door. 

Somewhere during this, they put a mask on me, my first. It quickly came to smell like vomit. I had to wear it for 18 hours straight.

Remember, all of this was avoidable. 

In line to be admitted into ER, I whispered to the EMT that I'd been drugged and sex trafficked as a child, and I was terrified of the morphine. She elbowed her way to the front of the line and yelled, "Let this woman's husband come with her!" 

Bless her.

So ER. Morphine. Pain. More pain.

During Covid. I heard them test a man for Covid while we were there. It was fifteen long minutes till I heard them say his results came back negative.

My first indication that the morphine was working was sudden blurred vision. Then I realized that I felt calmer, and the pain wasn't quite as intense. I tried very hard not to let this "high" scare me. 

Beau remained by my side this whole time, eighteen hours. Sometimes he'd put his head down on the bed railing, and sleep a little bit. As I write this bit, tears are in my eyes, I love him so much.

By now, we all suspected I had pancreatitis. The surgeon later told me that I'd given her the most perfect description of acute, severe pancreatitis she'd ever heard, like it came straight out of a textbook. She said she wished she'd had her student doctors with her. That gave me a sad chuckle. Ever articulate Charlotte, even then.

Anyway, the doctors and nurses kept asking me if I drink a lot. I don't. I've since learned that excessive alcohol consumption is a main cause of the gallstones that cause pancreatitis. When I kept saying that I don't drink a lot at all, they were baffled. (The explanation of this mystery would be revealed much later, when I talked to my newfound family about it.) But they believed me.

I'm very lucky the nurses and doctors did believe me. I'm absolutely sure that, if I were Indigenous, they would not have done so. Being female had led to my not being believed six years earlier, but now, with female EMTs, female nurses, and a female doctor, they believed I was really in severe pain, and, with my white skin, they believed that I don't drink a lot.

(Years earlier, I'd accompanied an Indigenous friend to the ER after her girlfriend had kicked her in the head, and she was displaying signs of a concussion. Every single medical professional there asked her what drugs she'd been taking. Every single one. She never drank, and never took drugs. Ever. But nobody believed her. I have heard many similar stories from Indigenous people.)

And so, after several painful tests, lots of morphine, no food, and 18 hours in ER, I was admitted into the hospital for emergency surgery. All non-emergency surgeries had been cancelled because of Covid, so I knew it was serious, but I was so relieved that there was a solution to my pain, I barely registered the fact that I was near death.

Beau was not allowed to stay with me or even visit me from that point forward. He was very worried about me. I laughed and said I'd be fine on my own. Looking back, I'm reminded of how he laughed at my concern when he first came out of surgery a few years ago. He looked like death, but he was so drugged, he thought he was fine. That was me, now.

One of the first things I realized after Beau had gone was that we'd forgotten to tell anyone I'm disabled! It became very clear to me that I was going to hurt myself quite badly if I tried to do the little things that non-disabled patients could do, like unplug my monitor long enough to stumble to the bathroom a few feet away.

It also quickly became clear that an IV needle in the hand does not mix well with using a walker. I couldn't bend my wrist properly! I don't recommend trying it.

I called Beau in tears, sure that the nurses would be nasty to me if I told them I needed more help, but, on his advice, I called the head nurse in, and explained, "I'm disabled. I need help!" She was so nice! She was relieved I hadn't called her in to complain about something, and I was relieved that she wasn't mean to me. I'm used to be people being nasty about my disability. If you're disabled, you know what I'm talking about.

Because of Covid, each patient had his or her own room. 
My view was spectacular, though it was hard to take it in on so much morphine, and in so much pain. Beau and I had paid good money to have this same view on our in-town honeymoon, and now, here it was again, and I barely noticed it.

Since my room was designed for multiple patients to share, it felt huge. I'm an introvert, and having my own room helped a lot. I even had my own bathroom, which was extremely helpful, since I couldn't use my walker while hooked up to an IV pole. With the bathroom so close, I devised a way to get into it while leaving my IV pole and monitor beside my bed.

Having my own bathroom also meant that I could shower each evening, though it was very hard, because I was attached to so many cords, and because I was so weak. But I think being able to shower helped me cope.

I seldom saw any of the other patients. I mostly just heard them moaning and crying out in pain, just as they heard me. The ward felt haunted.

When we did see each other, we eyed each other with fear: "Will you be the one to give me Covid?"

Meanwhile, I sometimes saw the Medivac helicopter landing, and always wondered, "What's wrong with that person? Is it Covid?" It was a horrible thing to witness.

Every single person who came into my room wore a mask. I never saw a face the entire time I was there. I often couldn't tell which nurse was which. It was extremely disorienting.

It didn't help that doctors had to put me on a "liquid" (ie starvation) diet to calm my gallbladder. I was only allowed watery broths, tea, and... that was about it. They said I was allowed sports drinks and miso broth, so Beau sent some of those in to me. The nurses kindly made me some miso broth several times a day. 

Without this starvation diet, my stomach simply would not stabilize enough for me to be able to withstand surgery. But, of course, it left me weak and lethargic, and very hungry. They kept testing my blood to see if I was missing any nutrients. Sometimes I was and they'd add yet another tube to my IV feed.

For a few of those days, they did let me eat ... I forget what they called it, "liquid solids?": tiny portions of strained mushroom soup, milk, oatmeal, pudding. I cannot tell you how delicious they were.

I was in a lot of pain throughout. The first night I was admitted was the worst, because I didn't ask for extra doses of morphine through the night. I didn't know I was allowed to. I felt like my chest, belly, and back were black with deep, dark bruises that went all the way through my body. This pain never went away, the whole time I was there, but the morphine did help.

Between the morphine, my IV fluids, and extra IVs for nutrients, I felt like a fucking pin cushion and it scared me. It was all so horribly reminiscent of being forced to take heroin as a kid. And now, here I was, frequently asking for more morphine, gratefully offering up my veins for relief. I felt like a junkie. The morphine messed with my head, yes, but so did the idea of the morphine. 

The nurses were wonderful, like angels. They took very good care of me, and this included taking my PTSD seriously. I'd never experienced that before. I told them this whole experience was triggering as hell, and they were very gentle, tender, and kind.

God bless Canada's socialized medicine! Nobody who treated me was in it for the money, and I think that really improved the quality of my care. And I never once had to worry about how I was going to pay for all this - because I wouldn't have to pay for any of it. Universal, socialized, health care is the only humane way to go.

Despite all this care, I was not strong enough for surgery as quickly as they'd hoped I might be. I was admitted on a Sunday night, and they'd thought I might be well enough for surgery by Wednesday. I was not. So I knew I'd remain in the hospital till at least Friday.

I did my best to create a little bit of a routine for myself, because I find that calming. Though I was very weak, after "breakfast," I'd try to catch up on my social media. In the evenings, I'd shower, watch Blandings on BBC, and read some PG Wodehouse before sleep. Things like that. It did help.

Meanwhile, Beau was doing his best for me from home. He brought me care packages that the nurses would pick up downstairs (where anxious family and friends of other patients also stood with care packages). He found a way for me to watch BBC on my laptop. He soothed me on the phone, sending me photos of the cats. He promised me that he was feeding the crows. It must have been very hard on him.

The face of extreme pain, and heavy drugs

I was vaguely aware that I was pretty indifferent to my morphine high. It was fine, but it wasn't lovely or anything. One of the things that had kept me from taking opioids in the past was a fear that I might like them too much. I didn't. I didn't hate them either. They were just kind of meh.

Yes, I was still scared. But I know the morphine did help. And my extreme pain dulled my emotions too. I was in pure survival mode. All I had to do was exist, and that's pretty much all I did.

The doctors warned me that recovery from my surgery would be painful, but it didn't sink in. I wasn't too concerned about my recovery. I've lived with chronic pain for a long time. How much worse could it be than my every day? Besides, I'd had surgery for endometriosis (which also turns out to run in my family), and that recovery wasn't all that bad. I was soon to learn that I had not really understood what the doctors were trying to tell me, but we'll get to that later.

But, on Friday morning, you can bet I was terrified. Things grew even more terrifying when they took me down to the pre-surgery room. I was in a bit of a cubicle of my own, but social distancing was totally impossible. The place was very big, and very crowded, both with terrified patients, and with medical professionals, all of whom were in full PPE.

I was absolutely shocked when a nurse who was prepping me asked me if I thought I would feel triggered as I came out of surgery, and if there was anything she might be able to do to help me with that. I was silent for a while, and explained that my mind was going blank because I was so shocked that she even cared about my PTSD! Finally, I told her that, yes, I'd been drugged a lot as a kid, and it would be very helpful if she would repeatedly tell me where I was and what was happening as I emerged from the anesthetic. 

And then I was wheeled into the operating room, where my friendly doctor told me about the incredibly bright light above me, a light that casts no shadows. If I'd been less freaked out, I might have used that light as a metaphor for something.

They told me to count back from 10. I began, briefly terrified that I was at 8 and still conscious...

... and then I started to wake up in the recovery room.

Twelve year old me

It was awful. I felt extremely drugged, which, of course, I was, on both morphine and anesthetic. It was taking me straight back to my very early adolescence, when I was often drugged before a rape or gang rape. There I was, on a bed, with people all around me, too drugged to escape, and nowhere to go if I did, and sure I was going to be gang raped. I could not surface enough from the drugs to understand what was real and what wasn't. This inability to sort out what was happening was also familiar; that's what being drugged as a child had been like.

I would briefly emerge from the drugged fog, and remember where I was. I'd remember that I was safe and no-one wanted to hurt me. And then I'd sink back into childhood terrors once again. 

I kept banging my arm on the bed rail beside me, hoping the physical sensation would keep me in reality. It didn't. 

I was intermittently aware that there were other patients in the room too. I could see one, who will haunt me forever: a young woman right in front of me, bald from chemotherapy patient, suffering terribly.

Again, everyone was in masks. The medical workers were in full PPE. Nobody was allowed any visitors to help us with the difficult task of returning to reality. This was the time I missed Beau the most.

A hospital stay during Covid is no picnic, that's for damned sure.

A nurse, probably the one who'd talked to me about triggers before my surgery, did keep coming over and reminding of where I was and what was going on, but it just wasn't working.

A crow flew by outside the window, and I wished to God that it were one of my crows. I wished it knew me the way my crows know me. I needed to be seen and known. I needed a friend to help me back to the here and now, away from the there and then when I was raped and raped and raped, and felt sure I was about to be raped again.

My nurse friend, as she looked that day

Then someone in full PPE was standing quietly beside me, looking at me calmly. I couldn't understand. All I could see were her eyes, but it seemed like she knew me. I thought maybe she was one of the nurses who had been taking care of me that week? I felt it was very rude of me not to know who she was.

"Do I know you?" I asked, drugged.

"I don't know," she replied. "Do you?" Then I looked at her name tag, and looked back up at her face, and realized that I did know her. She was my high school friend's wife, whom I'd forgotten was a nurse. My high school friend had told her I would be there today, and asked her to look out for me. Bless them both. What a relief for someone to just know me, someone from my social circles, someone from my life outside of this place, this illness, these drugs.

Forgetting about Covid, I reached out to hold her hand. When I felt the warmth of her palm against mine, I knew I was going to be okay. I knew what year it was, where I was, and I knew I wasn't going to fall back into the the past again. Apparently, I held her hand for a long time. I don't remember her leaving.

Finally, I was back upstairs in my room, very groggy, but awake enough to fully distinguish reality from memory. This is the photo I sent Beau to show him that I was just fine. As you can see, I was not just fine at all. It hurt a lot just to lift the phone to send the message, and talking for even a few seconds was tough. Beau told me that the surgeon had said I'd been far sicker than they'd realized, but I didn't know what that meant.

I was on oxygen. They gave me some contraption to practice breathing, to open up my ribs, or lungs, or something. I had a drain tube coming out of my belly which was already starting to hurt. The tube was attached to a little, clear, rubbery pouch that collected whatever it was that was coming out of me. I was told that pink and red ick coming out of the tube was fine, but, green ick was cause for concern. They were talking about bile, I assume, the stuff that had been making my whole body feel poisoned for so long. 

The doctor had instructed the nurses to give me my morphine straight into my muscle. It felt like a bee sting each time they did it, so they put yet another port into my arm, this time on my shoulder. Ports and needle marks everywhere!

Even so, the pain grew very intense. I couldn't really move at all. I wasn't surprised when they told me I'd have to stay another night in the hospital. But, even with all this pain, I was very excited when they told me I could finally eat a little bit of solid food. I was so hungry!

When I was clear-headed enough to talk to the surgeon, she came into the room and told me that my gallbladder had been "a mess," and told me that, "It wasn't pretty. You wouldn't have wanted to see it." I wondered what on earth a "pretty" gallbladder looked like. She said my gallbladder had literally been fused to my liver. I'm no doctor, but that sounds pretty serious.

She nearly cried when she saw that I was eating my first real meal with a raging appetite.

She could not believe that I'd managed to go on with that much pain for that long. I just shrugged and said, "I'm used to pain." 

She made me feel like superwoman. 

She also wondered why I hadn't ended up in ER sooner. I told her that I had, six years ago, and that I'd been told there was nothing wrong with me.

Sexism in medicine is real. It's killing women.

That night was brutal. The pain was intense. 

This too, could have been prevented.

The next day, there was still no green stuff coming out of my tube, so, they took the tube out. Beau had had something similar taken out of him two years earlier, after his surgery, so he'd warned me that it would be very unpleasant. It was the grossest, slitheriest sensation I've ever had the misfortune to experience, like a fast moving snake in my insides. But, as soon as it was out, my side hurt less.

And so, it was finally time to leave! I was able to snap this picture of one of my lovely, angel nurses, and my lovely Beau as I left.

Thus began my long recovery.

I'd missed the cats terribly and was looking forward to cuddling them, but, at first, they were scared of me and all the odd smells on me. Chuti in particular has always been very sensitive to the smell of infection. She can detect it before we even know we have an infection. So, when she lay on my wounded and bandaged belly that evening, I knew things were okay.

Still, it was a long, slow, very painful recovery.

The first week was the worst. I was still on morphine, barely able to move at all, barely able to think, unable to eat much, and, obviously, in a lot of pain. I had to prop my arms on pillows as I lay in bed, just to keep their weight from pulling on my internal wounds (something I'd keep doing, off and on, for months).

I had four scars, and they all hurt like hell. They were taped shut, gauzed over, taped again... It took a month before I was even allowed to take a bath. Beau had to help me shower, so the wounds stayed dryish. Worse, though, was the way they felt internally. They felt like deep stab wounds. I guess they were, in a way. 

Worst of all was the internal pain under my right breast, where my gallbladder had been, like someone was reaching into me, hooking their fingers under my ribs, and pulling - hard.

Me at thirteen

Being on morphine was also extremely difficult for me. My arms and shoulders were still covered in track marks from my stay in the hospital. I felt like it was 1983 again, and I was a sex trafficked teen, kept in line with drugs. 

Being forced to take heroin is like somehow staying alive with someone pushing your head under murky water. I still have nightmares about that feeling of being unable to surface, unable to clear my head enough to clearly see my own situation, unable to ask for help or somehow break free.

Only this time, I was taking the drugs by "choice." I kept telling Beau, "I'm a junkie. I'm bad. I deserve to be sold. I don't want anyone to hurt my body anymore. But I'm just a junkie whore. Just a whore."

I'd close my eyes and see the streets of Vancouver as they were in the early 80s at night: dark, wet, dangerous.

Needless to say, I was pretty fucked up. 

I was so afraid I wouldn't be able to get off these drugs!

Me, 17, just after high school graduation, and about two days before I left home

I'd quit opioids - heroin - once before, around my 17th birthday, and it had not been easy. The shakes, nausea, paranoia, insomnia, inability to eat, a burning sensation in my guts, constant terror, sweats. What if it was like that again?

After about a week, I was switched to Tramadol, which was a bit better emotionally, but not much. I was still really freaked out, so I cut my dose in half long before I should have. Doctors were shocked that I was even able to do this, and advised me not to further cut back yet or my pain level would increase so much, it would impede my recovery, and might even start a new, fibromyalgia, pain response loop that would never go away.

I watched the weeks on the stuff tick by and worried and worried. After a certain number of weeks, wouldn't my body be addicted regardless of intent? Then what?

Of course, it wasn't just PTSD that was clouding my ability to think clearly about all this. The drugs themselves were doing that too. They were making me pretty stupid, to tell you the truth. I can see that now, but I couldn't see it then.

Beau and I did our best to keep me comfortable and sane. While in the hospital, I'd rediscovered the very funny, British show, Blandings (based on the PG Wodehouse novels), and I introduced Beau to it.

I binged watched CSI and then CSI: NY, one episode after another, till I got so sick of female cops dressing like this...

... and female corpses being found like this ....

... while male corpses were found like this, that, even in my drugged state, I just couldn't take it anymore. We had already taken to calling CSI "the dead hooker show," 

... with all dead "hookers" looking like this ...

I don't know if April here is herself a prostitute, but I know her situation is like that of many prostitutes in my city.

... when, in reality, even hookers who are alive tend to look more like this.

Given that I'm a child sex trafficking survivor, given that sexism had almost killed me, it was all just a bit hard to take.

Anyway, we did other things to get by. Once I could sit up, we played a lot of cards ...

... mostly with Chuti.

We fed me whatever my confused and struggling body could manage. I've never had so much pudding in my life.

I tried to take pleasure in tiny beauties, like the buttons on my nightgown ...

... and the pink legwarmers I wore to keep my legs warm when even a onesie put unbearable pressure on my surgical wounds.

I continued to be freaked out about being on opioids so, eventually, my GP, who knows my history, helped me create a step by step, day by day plan to get off them. 

After six weeks on opioids, I was off them entirely. I'd had no withdrawal symptoms at all. It was a huge relief to be off those damned things, and a self-esteem boost too.

The pain was not gone, of course. That would take several more months. But the pain was worth it, just to be off those pills.

Throughout all of this, my digestion was rapidly improving. Though I hadn't taken any imodium since the day I went into the hospital, I was not having anywhere near as much diarrhea as I'd had before my surgery. I wasn't getting pains in my stomach, and I was getting fewer pains in my guts. I didn't have any acid reflux. I was slowly introducing foods back into my diet that I hadn't been able to eat for years: beans, huge salads, whole grains. My IBS was going away.

All this time, it hadn't been IBS at all? (This is still an open question, but, if I do, the symptoms are much better than they were.)

I mentioned to a long lost, second cousin whom I knew had IBS, that she might want to get her gallbladder checked, given what I'd just gone through. Her response amazed me: Oh yes, she said, it's hereditary. She'd had hers removed a few years ago, under circumstances almost identical to my own. So had her mother years before that.


So I wrote a note in my family Facebook group, asking if anyone else had gallbladder trouble. Notes came in literally from around the world: Russia, England, South Africa... Oh yes, I have! Me too! Definitely.

My God. Why hadn't I known this? 

Well the answer lay in why I hadn't even known these cousins existed in the first place: the pogroms, the Holocaust, Soviet repression, antisemitic immigration policies. 

Several of us had, at some point in our lives, been rushed to ER, in excruciating pain, nearly dead, all of us with severe, acute pancreatitis. If we had grown up knowing each other, if our parents and grandparents and great-grandparents had known each other and/or been able to stay in touch, none of this would have happened. We would have known it ran in the family. We would have known the early warning signs. But that was not a luxury our Jewish family had been afforded. We didn't know each other. We couldn't. It was dangerous, or impossible. And besides, so many of us had been murdered.

Had any of us died from this, I wondered? It seemed likely.

The legacy of antisemitism had traveled down the generations in a very unexpected way. That's how systemic oppression works.

I would not have come to this conclusion if it were not for the Black Lives Matter movement. As my brain cleared from the morphine, and I was able to look around me again, I was, like everyone else, taken up with this movement. 

As I've tried to do for several years, I was listening to what Black people were saying, but now, their voices were more amplified than they'd been before, so I heard more. Among other things, they were talking about how systemic oppression affects Black people's health and medical care. They were talking about how this is relevant to why more Black Americans than white Americans are dying of Covid.

My situation is not the same. I'm white. I already know that being white led to my being taken more seriously in the ER. But I did think about what my Jewish family has been through in the past and how that global, systemic oppression led to my ... nearly dying.

I nearly died. I really did. That's still sinking in. I nearly died and it was entirely avoidable.

About four weeks post surgery. I think this was my first outing, just around the block. It hurt!

But now let's return to the good news parts of this story. Not only was my digestion improving, but my overall health began to improve dramatically too

Maybe eight weeks post surgery? I'm not sure.

My skin was clearer, my digestion better. My limbs no longer felt heavy and prickly. I didn't feel poisoned anymore! 

I felt so much better that, for a while, I wondered if my disability might disappear altogether. Of course it didn't, but that gives you a sense of the transformation in my health.

About six weeks post surgery

And, though I was not dieting, and I was even more inactive than usual, I was shedding pounds like magic. The bloat was just melting off me. I kind of noticed it while I was still mostly bedridden, but I first really noticed it in looking at pictures of myself in this blue skirt and top. The skirt was falling off me! 

Seven weeks post surgery, give or take

I had a waist again!

Clothing that hadn't fit me in years, suddenly fit me again. I could not stop staring at this photo. Was this really me

From Fat Shaming, Victim Blaming, and How Disability Twitter Made Me Feel Like a Superhero

By the end August, I'd gone from this ...

... to this. 
I had my hourglass figure back. I kept telling people that I was "me shaped" again. 

I wore this outfit the day I had a follow up appointment with my surgeon. She was amazed! I told her about my improved digestion, my overall feeling of improved health, the sense that I was no longer being poisoned, and, of course, about my weight loss. She was so happy for me! 

I'm still losing weight, more slowly now, at a healthy rate, but I am still shedding pounds... or bloat... or whatever it was. 

What's become very clear to me is that I had not gained that weight/size because I was doing something wrong, or because I'm disabled, or because I'm middle aged.

I was gaining all that weight because I was sickreally sick.

And that could have been prevented. All that struggle with self-esteem? It could have been avoided if I'd gotten proper medical care from the start. All that digestive trouble, all that running to the bathroom? A proper diagnosis, maybe decades earlier, could have saved me from that.

I'm not going to forget how sexism and antisemitism nearly killed me. I think the lessons learned are important lessons - for myself, yes, but also for others who might find themselves in similar situations.

December, 2020

But you can bet I'm going to enjoy my improved health too! Man, did I ever earn it.