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. |
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. |
One of my Lithuanian, family branches in South Africa |
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.
My cousin, Ilia, in Latvia, whom we assume was murdered in the Holocaust. We may never know for sure. |
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.
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 |
Me, at about 32. From Gym Bunny to Cripple: How Child Trafficking Destroyed My Back |
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 |
From Disability Style: What I Wear When Everything Hurts |
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.
From Fat Shaming, Victim Blaming, and How Disability Twitter Made Me Feel Like a Superhero |
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.
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.
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. |
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.
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.
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?"
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 |
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.
"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.
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).
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 |
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.
... 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,"
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. |
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 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.
What?!
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! |
About six weeks post surgery |
From Fat Shaming, Victim Blaming, and How Disability Twitter Made Me Feel Like a Superhero |
By the end August, I'd gone from this ...
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 sick, really 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 |