Got any updates for me? -B
I had a seizure. -Me
It was April 12, 2018; 17 days after giving birth and 11 days before my birthday (an important aside). This story is about the events that led to me sending this text to my wife, which unavoidably details my experience of being a Black woman in a medical crisis. I am able to have so much detail here because I was texting my wife throughout the entire experience and these texts now serve as a journal of sorts. In sharing my story, I not only hope it will be cathartic for me, but that it will also help to spread the warning signs for others to recognize in themselves, in those for whom they care (cough couch…medical professionals, this one’s for you), and in friends and loved ones.
I knew about preeclampsia for as long as I could remember. As the story goes: my mom, 19 and pregnant at the time, went to the hospital 3 months before her due date and needed to have an emergency cesarean because of preeclampsia. It was only then that she learned that she learned she was pregnant with twins (I’m not one of them, sadly enough). My sister, one of those twins, also had preeclampsia and had to have a cesarean before her due date. So, naturally, I and my OB/GYN were monitoring the hell out of my blood pressure during my entire pregnancy. I was even taking baby aspirin. She reiterated all of the warning signs to me each visit and I watched out for them daily.
A quick, but important, detour from my story. Preeclampsia is a pregnancy complication characterized by high blood pressure and signs of damage to another organ system, most often the liver and kidneys. It usually begins after 20 weeks of pregnancy in women whose blood pressure had been normal prior. If a someone has preeclampsia, the most effective treatment is delivery of the baby. Read more about it here.
Okay, back to my story. Incidentally, my blood pressure was perfect the entire 39 weeks. It actually ran low; it never even reached the normal reading of 120/80, let alone got too high. Overall, I have an uneventful pregnancy. I had a healthy (8lbs!) baby boy on March 26th via planned cesarean (breech) and my blood pressure was monitored in the hospital for four whole days afterwards. Things went as well as they could have possibly gone.
When we got home, I continued to recover from the cesarean with relative ease and we started to get into our routine of baby care. Again, things were going so well that we were getting a bit of cabin fever. At my two-week follow-up appointment on April 9th, my blood pressure was perfectly fine. I did, however, mention that my feet were swollen. She said that since they were both evenly swollen, it was normal run-of-the-mill postpartum swelling.
So, I was in the clear, right? Preeclampisa is when you’re pregnant and the fix is to deliver the baby. I even had normal blood pressure TWO WHOLE ASS WEEKS later, so done and DONE! [Imagine me dusting off my shoulders here]. NOPE!
See, there’s also this thing called: postpartum preeclampsia. So, not only is preeclampia relatively rare considering how many pregnancies there are (about 200,000 cases/yr) but postpartum preeclampisa is even more rare. But, even when postpartum preeclampisa happens, it’s usually within the first 48 hours. Late postpartum preeclampsia, even rarer, happens after 48 hours and has been known to even present itself up to 8 weeks after delivery. The catch: it can happen to anyone. Sure, there are certain things that make people more “at risk” (which just means they find that people with these characteristics experience it more than those without them), but nobody is immune from it. There isn’t something someone is doing; you can’t give yourself postpartum preeclampsia, contrary to what some of my family members implied [side eye], nor is there a whole lot someone can to to prevent it.
I woke up on April 10th feeling a little funny. It was a bit of a hazy feeling, almost like I had a head cold. I just felt off. I thought maybe those middle-of-the-night feedings were catching up with me or that I was getting sick or something. That weird feeling slowly turned into a splitting headache by that afternoon/evening. I interpreted this as a migraine, which I have had before and often starts as a weird feeling. I found myself crying, at the time it wasn’t from the pain, but from frustration with being in pain and feeling like “how am I going to take care of my baby if I’m having migraines?!” That night, I took a Tylenol PM and B took care of the baby, so that I could try to sleep it off.
The next day, the pain was worse. I tried my best to distract myself by finishing a Lego set I had started before the baby was born. I was taking over-the-counter medicines with not impact. At one point, I went in our bedroom, threw a sheet over the window, put on slow piano music, and tried to just find a happy place. It did not work.
That evening, B sent a picture of the baby to a friend of ours, which ended up saving my life in a way. It was just picture of him using the pacifier she’d given us, but this friend incidentally asked how I was doing. B mentioned the headache and our friend who suggested that I check my blood pressure. I decided to go to bed, because….well, honestly, because we can’t have nice things. B made me promise to go to CVS or Walgreens the next day and use of the those machines as she kissed me goodnight.
The next morning, April 12, still in pain, I called my OB/GYN. I was thinking maybe they could give me a prescription to help with the migraine; maybe it was common after delivery to have terrible headaches like this, right? They told me to go to the ER, which was the last thing I wanted to hear. Not because I was afraid that I was having an emergency (remember, I still thought I was having a migraine), but because I, like anyone who doesn’t suffer from munchausen syndrome, hate the ER. I also had ZERO interest in leaving my fresh new baby for any reason.
Because he was so brand new, I was feeling weird about leaving him with someone for such an extended period while I only got treated for a migraine, so I told B to just drop me off. An obvious mistake, but look….I was chock-full of hormones and in crazy pain, so rationality had left long ago and Senora Loca had come to stay for a while. So even though B tried to get me to just let her call someone, I wasn’t hearing any of it. So I walked into the ER, alone, at 11:30am.
It’s empty. There is one older man in a wheelchair with a younger woman standing behind him. He’s being seen by the triage nurse. It’s empty because the nearest ER to us is in a “nice” area of town. I’m standing there waiting to be called up to the counter. The receptionist glances up and asks me to wait one minute. There are two men explaining something to her on her computer. They’re wearing EPIC shirts. She’s still confused, but tells me I can fill out the form. I’m tearing up already because I started to miss my baby and to suddenly start to feel extremely alone, not to mention I am in pain. I stand at the counter. Name. Birthday. Complaint. It takes me only about 42 seconds to complete this tiny sheet of paper. She’s still confused about her computer. I am just standing there. Finally, I just go sit down, irritated that she is just making me stand there, like this isn’t an emergency room and I continue to fight back tears in my seat. She calls me back up. Not once does she apologize. She confirms with me that I am there for a headache. I also tell her I just had a cesarean, thinking maybe the medicine or epidural triggered this headache. She puts on the plastic band. The triage nurse is sitting behind her; he is already done with the older guy and is just hanging out, so she sends me around the counter to sit with him. He asks me about my complaints. I have a headache. I just had a baby. He takes my vitals. He takes my blood pressure. He takes it again. He tells me to follow him, puts me right into a bed (remember it’s empty in there), and tells me a doctor will be with me soon. It is 11:44am. 14 minutes has passed from the time I walked in the door.
The doctor comes, but not for me. The man next to me, who came in after me, is having chest pain. I can hear everything; he is fine. All the while, I am texting B. She is updating me on random things related to the baby and sending pictures. He is wearing a cute outfit. I hear the doctor talking to another man. I see him walk by, to head to another room. The nurse comes in. She starts asking me the same questions. My head is hurting. I just had a baby. I start crying because my head feels worse. I am self-conscious of my crying because I hate crying in front of people. The nurse asks me why I am crying. Let me repeat that. She asks me WHY. I. AM. CRYING. As if I am not in the emergency room complaining of severe head pain. When I tell her, she asks if I am sure that is all that’s bothering me. She leaves and tells me the doctor will be in soon.
I am lying on the bed and my left foot jumps. Hmm? I watch it. It jumps again. And then a few more times. I think maybe it’s my imagination. I sit up. I start to cry again. Someone, another nurse maybe, sees that I am crying like I am and asks the doctor when he is getting to me. Not yet, there is yet another male patient who needs to be seen. He doesn’t say “yet another male,” but I can also hear the conversation he has with the patient. He had chest pain when he was lying on the couch.
At 12:45, the doctor comes into my room, an hour after they put me in the bed. He’s young, White, and rushed. I sit up in the bed. For some reason, I feel like I need to do this in order for him to take me seriously. Even in extreme pain, I am thinking of how I will be perceived as a Black woman. I tell him how I just had a baby and I initially thought it was a migraine, but I’m not sure now. He asks if I have a history of migraines, to which I reply yes, but this feels different. He wants to know how. I tell him it is far worse, the worse headache I have ever had. He seems to doubt what I have said. In general, he seems bothered that he has to deal with just a headache. I know he is probably irritated that “these people” don’t understand the health care system and when to use the ER and when to go see a primary care physician. He tells me that if this really is the worse headache I’ve ever had, then he needs to give me a spinal tap. His tone is almost snarky. I tell him no. He looks outright surprised at my refusal. He wants to know why. I tell him I just had an epidural and he wasn’t about to let him stick something in my spine again. I also do not think my complaint warrants a spinal tap. He then says that if I don’t want the spinal tap, he is going to give me some [mild pain medicine] and we’ll see what happens. I can’t help but feel that he’d only offered the spinal tap in an effort to try to call me on my bluff. How did he go from spinal tap (investigatory) to pain meds (cover it up) so quickly. Either that, or he was just that upset that I had refused his suggestion and wanted me to suffer until I begged him to help me. This was about a five minute conversation.
On his way out, I ask him to tell me my blood pressure. He says he doesn’t know. I say that I would like to know. I can tell that he thinks it’s some kind of weird test, but I had remembered my friends advice from the day before. He asks the nurse, you know, the why-are-you-crying nurse. She also has no idea. A few minutes go by and I hear things getting a little hectic outside of my curtain. Someone comes in and is fiddling with the blood pressure machine in the room, “no not that one,” “was it working?” I am still sitting up, in my strange attempt to garner respect, on the edge of the bed looking down, when the doctor returns. He leans downs close to me and says, “Your blood pressure is at critical levels. How did you know?” I start crying again. He isn’t apologetic. He isn’t warm. He is almost accusatory, as if I was purposefully withholding information. “I didn’t know,” I muttered, “my friend, a PA, told me to make sure to check it.” At 1:04pm, one hour and a half hours after I my arrival, I, and the rest of the medical team, learn that my blood pressure is 196/121.
A normal blood pressure reading is 120/80. A person has preeclampsia starting at anything higher than 140/90. You are in an emergency crisis at anything higher than 180/120. I am in full-fledged crisis. I text B that it’s time to let my family know I am at the hospital. The medical team comes rushing in. People are moving fast all around me. The same why-are-you-crying nurse tells me to take off all of my clothes and put on a gown. All of this time, I have been in the clothes I walked in wearing, shoes and all. I am still bleeding from having given birth two weeks prior and I am leaking breast milk, plus I do not like her, so I decide I am not going to take off all of my clothes. It’s literally going to do nothing to her, but my brain was boiling ya’ll! As soon as the gown is on, over my panties and bra (fuck you!), the same woman who attempted to get the doctor to check on me sooner than he did, rushes in and tells me to take out my piercings because she is going to take me to get a CT. I have eight in my ears, one in my lip, and I have never taken them all out myself. She hands me a piss cup, but does not wait for me to finish before starting to wheel my bed to the CT scan. Then it happens.
We are in the hallway and I am in the middle of getting an earring out of my left ear. My left foot starts to feel like it has a cramp in it. Then it starts to feel like it’s being smashed into a ball. Ahhh, my foot. I don’t yell this particularly loud, but the woman wheeling me back stops. “What’s that?” “My foot,” I say somewhat louder this time. Then my left leg starts to feel like it is being twisted up like a pretzel. I yell again. “Ahhh!” “What is it?” “My leg!” Then it moves up my entire left side and I feel myself flipping over to the right. The last thing I say is “Ahh! My body. Help me!”
I wake up in the same room I had been in. There are things in my mouth and nose. Oxygen? I look over and the same why-are-you-crying nurse is there. She tells me I had a seizure. I have an IV. She tells me it’s dilaudid and some kind of blood pressure medicine. My bra and panties are off. She fuckin won. I feel my fitbit buzz a couple of time. I look at it and see a message from B. It said: “Baby.” I look for my phone. She had asked if they had moved me at 1:51pm and I responded “No,” then she had not heard from me again. It is now 3:18pm. She is worried. I know she is worried. I know her anxiety has given her a multitude of possible scenarios and for once, it’s not wrong. I somehow get a hold of my phone, it must have been in the bed with me still, and send her the now infamous reply “Hey.” “I had a seizure.”
The rest of my story I can really only piece together from the text conversations that are on my phone and from what others have told me. I have almost no memories of the two days that followed and only vague memories for three to five days after the seizure. I was in ICU for two days. The baby was not allowed to visit and, while I don’t have an actual memory of missing him, B tells me that all I kept talking about was missing him. One morning, I texted B that I had a lovely visit with a priest (I’m not Catholic). Another time, I texted her that I had a cool nurse who let me have a turkey sandwich “for my sister.” (I was on a clear liquid diet). My brother came and spent the night with me, my mom sat a day with me, my sister sat with me, I talked on the phone to several people (based on my call history). My OB/GYN called B from the airport on her out of town and left about a 2 minute voicemail. Her on-call colleague, who we already knew, came in and spent some time with us. I literally remember none of this.
I was transferred to the maternity ward, where I spent two more days, of which I have some memory. The hospital placed me there so that we would be able to be together as a family. All I wanted was my baby. I wanted to smell him, hold him, hear him. Though I had no conscious memory of missing him, I went into overdrive when we were reunited. This feeling stayed around for a while; I would miss him even if he was in the same room with me.
The neurologist said I had eclampsia; they drop the pre when you have a seizure. He said there was swelling on the right side of my brain, caused by elevated blood pressure, that would eventually go away. I wasn’t really well then, but had I been, I would have asked a dozen or so questions. Like, how long will it take the swelling to go away? Will I have short-term, or lasting, side effects from this? Should I follow up with a neurologist? What happened when I had the seizure? Can you tell my why my throat is hurting so bad or why my tongue is sore on both sides? Did I fall off of the bed in the hallway?
I left with blood pressure meds and we bought a blood pressure cuff for home. If it got high again, I was supposed to go straight back to the ER. It didn’t. I eventually stopped taking the meds and my blood pressure is just fine now. But that’s just physical. For weeks, I’d wake up crying in the middle of the night. I would have had a dream that I was having the seizure again; I would feel my body contorting in the dream the exact same way it felt when it happened. Some days, I would get a cramp in my leg and immediately have flash backs and burst into tears. My head would start hurting and I’d start to panic. Today, Oct 12, marks 6 months to the day and just two weeks ago, I had a dream that I was in a van, you know the kind you ride in to-and-from the airport, and the driver had a seizure behind the wheel. I could see his head convulsing, but there was nothing I could do. The van went off the road, into a mountain, and started to roll. Midair, slumped over in the position they tell you to get in during a plane crash for some crazy reason, I was thinking that I was going to die because of this man’s seizure. I was wondering if it would hurt or if I would die or pass out before I felt any real pain. Then, I told myself, this is a dream silly, wake up, and I woke myself up before the van made impact with the ground. And for that I am grateful.
I am grateful that I can wake up. That I am alive and that, like so many other women, especially Black women, I did not die that day. I am so grateful that I spoke up. I told four people in that emergency room, the woman who checked me in, the triage nurse, the nurse in the emergency department, and the doctor himself, that I had just had a baby and was having a severe headache. One of these people took my blood pressure and failed to alert anyone that it was at critical levels. Had I not advocated for myself in there, my story could, would, have been different.
But I did, and so here I am.