A mysterious sickness has control of my body. And I’m unsure if it will ever leave

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Illustration by Domonique Brown For The Times. Rembert Browne for issue 07, Image magazine.
(Domonique Brown/For The Times)

This story is part of Image issue 7, “Survival,” a collective vision for the L.A. of our dreams. See the full package here.

Day 1: I was just walking, but now I’m on my mom’s carpet. I don’t know how to describe it, but my right leg just gave out. Getting older is weird.

Day 8: It happened again. Same as last time, a numbness for around 10 seconds in my right leg. It’s probably time to go to the doctor.

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Day 9: Something’s off. My brain feels foggy. I’ve never had vertigo, but it seems like that’s happening too. And I think it’s only noticeable to me, but I’m not sure. Also, something strange is happening with my speech; my words are slurring and I trail off before I’m done with whatever the hell I was saying.

Day 10: I haven’t had another episode, but I feel like it’s always on the verge of happening. My anxiety is through the roof, especially when I’m driving and using my right leg. I might have to only be a passenger for a while.

Day 11: After two hours of virtual work meetings, I go see a doctor. He thinks I may be having mini strokes, but he’s just not sure. He also said it might just be stress. Asks me if I’ve ever gotten an MRI. I haven’t. Forty-five minutes later, I’m back on a call about copywriting.

Day 12: I won’t lie, when it comes to tests, MRI is pretty high on my list of “procedures to get.” They gave me some headphones. Played me some jazz. And I fell asleep for what felt like an hour but was only seven minutes.

Day 13: The scan results came back. They saw some things … on my brain. The report was a few paragraphs long, with a variety of possibilities of potential culprits, but I only saw two words, which terrified me.

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Day 17: I visited the doctor again. He thinks this is above his pay grade. Suggests finding a neurologist.

Day 19: The walk to the car from his office was tear-filled. The neurologist has me convinced: Something is wrong. And whatever it is requires urgent attention. I’m wired to trust authority figures who went to school for a long time, but he kind of seemed manic and insane, which was confusing. The piece of paper he handed me resembled a prescription. Had scribbles and other musings.

Day 21: I’m in the hospital, 400 miles from home. The thing happened again, but this time it took over the entire right side of my body. It started in my arm, and then jutted down my leg, and then the right side of my face started to droop, which both felt and (as I’ve been told) looked terrifying. After a three-hour phone ordeal with our neurologist, it’s clear we needed a new neurologist.

Day 24: Whatever they are — strokes, seizures, who knows — I’ve had three of them in three days. It’s terrifying. Just the idea of moving my body is stressful, because with each movement I worry it might happen again. And the speech thing has gotten bad.

Day 25: Told my superiors that I need to go on medical leave; it’s hard to do meetings when you’re no longer reliably saying full sentences. Found out how to go on medical leave, which is a whole thing. So many papers. Government papers.

Day 27: Talked to some friends and co-workers about what was going on. Struggled through two long video chats, one for my job and one for a project. On the third call, I started talking and then, suddenly, I was unable to spit my next word out. I did the first thing that came to mind: I turned my camera off. (How terrifying did my face look? Were my eyes doing a thing? Rolling back, hunting for the words in my head?) I kept trying to get the word out, but it still didn’t come. I logged off and walked outside. Logged back in and returned to the call five minutes later. Told the room that my internet had gone out.

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Day 29: I’m definitely getting more forgetful. Gripping a pen and writing isn’t always challenging, but sometimes it is. And this new, weird thing happened: I couldn’t get the house key in the hole for like 45 seconds. Seriously. I’m kind of falling apart, which makes me more anxious, which makes me fall apart more. Which is rude.

Day 35: On my fifth day of medical leave, I got an appointment with a specialty doctor in the neurology wing of a hospital. I was overwhelmed by the system but filled with gratitude for what could come next.

Day 38: Met my doctor. I need this woman to save my life. The first step was of course more tests.

Day 41: It’s been more than a week since the last time the right side of my body went numb, which is great. Every now and then, my leg feels a little hesitant to do normal leg things, but it doesn’t feel like my body will go into a full episode. I’m still unable to speak well, which has overshadowed the leg. The speech impediment has taken me to a dark space.

Day 43: Someone at a store asked me for my phone number and I couldn’t say it back. Rewards programs shouldn’t be this hard. And y’all know my Black ass was here last week. Why not just give me the discount? I know my bodily mobility stuff came and went, but I don’t know if this speech thing will follow suit. This feels more permanent. This might be it, soon, for a lot of things I love to do.

Day 44: Bruh. I really can’t believe this is happening to me. That’s so crazy, how it just showed up one day. And might just stay.

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Day 45: You truly are wild for that, brain.

Day 46: Medical leave is over. They would have let me take much more time, but while I’m waiting it’s helpful to feel productive. Sometimes you just want to feel useful.

Bruh. I really can’t believe this is happening to me. That’s so crazy, how it just showed up one day. And might just stay.

— Rembert Browne

Day 48: My wife and I saw a friend in town. The world is opening back up, and outdoor patio hangs are a thing. And it was nice to see him, but it was stressful to be around a person who knows you to be one type of person, and then you present as someone totally different — shy, mute. Each time my speech trailed off — most of the times I spoke — my wife effortlessly finished my sentence because she knew what I was going to say because she’s been carrying the load for the both of us. Plus, we’ve spent 15 straight months together.

Day 55: The main reason I came back from medical leave is because I’m interviewing for a new job. Considering everything that’s happening to me, I probably shouldn’t be doing this, but I am. Today was the last day of interviews. I asked my future boss to let everyone know that I was dealing with a speech thing, and each time something happened while answering a question, the person on the other side smiled patiently and let me spit it out. They were the best, but this is just the worst.

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Day 62: The tests are here. I’ve got three procedures in four days — feels like I’m on a baseball road trip.

Day 63: I just got an EEG. They put discs all over my scalp, which was funny because my hair has never been longer. It was nice, harmless.

Day 65: I just got another MRI. I take back every kind thing I said about these people — their line of work, while crucial to my survival, sucks. The days of 10-minute naps are over. Today, it was 45 awake minutes in a vibrating, pulsating casket.

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Day 66: I’m in the fetal position, being chatty with my doctor, as he cleans the sword he used to extract four test tubes of clear fluid from my spine. The technical term is “lumbar puncture,” but the streets call it a spinal tap. The pain is manageable but the anxiety around what that doctor is doing to you, because you’re awake the entire time, is unbearable. I wish it on no one.

Day 68: After lying on my back for two days, I sang a whole song. Top to bottom, no slur, no nothing. It was “7” by Prince, a song that I love, a song with lyrics that I will never understand. Maybe I’m over the hump?

Day 69: Made it a whole day without a speech thing. MAYBE I’M OVER THE HUMP???

Day 70: Happened once. But it was at the end of the day. Actually, it happened as I was waking up from a nap. I feel like it doesn’t count.

Day 73: My neurologist called. I told her I was feeling better, and my speech stuff seemed to be resolving itself, which she was happy about. The conversation ended with her telling me to pick up a prescription for anti-seizure medicine. Buzzkill.

Day 77: Just exchanged some messages with my neurologist. I asked if I could hold off on taking the medicine. She said to wait for a few weeks, until all the test results came back.

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Day 84: Just made a speech at one of my best friends’ bachelor party. It was fine. I’m only staying one night, so I had to get all of my emotional stuff out in one swing. This is the most social thing I’ve done since I’ve been sick and since the pandemic began. I knew most of the people there and let folks know what I was going through, and the result was a night that felt normal, for the first time in a long time.

Day 85: I’m sitting in the corner of a wedding reception, shirt fully unbuttoned. In the past, this would be an attempt at sexy, but now it’s purely because I can’t stop sweating. I’ve been overheating, in a way that I’ve never experienced. I don’t know if this is the next new thing, but it’s definitely new.

Day 86: The newest suddenly difficult task: wearing a mask. It’s hot in there and it feels like there’s no air to breathe. And don’t introduce a staircase or a hill. But I’m still wearing one, what I look like, Kyrie? Nah son.

Day 87: Just left the hospital. Today was the day we found out everything. We think we might know what’s wrong. And we think we might know what treatment path we should take. But to be exactly sure, we need more tests. A second opinion. And, probably, a future of waiting and seeing.

Day 93: Two friends came over and sat with me. I feel better, but I’m sad, because I don’t know what’s next. It’s nice to find out it miiiiiiiiiiight not be the worst-case scenario, but it’s cruel to live with every option seemingly still on the table.

Day 98: Driving home from tennis. It was nice to give it a shot, my favorite activity, but my body’s not ready. And that’s hard, because even at my most out of shape, my body has always responded well to running around, swinging a racquet.

Day 99: Sitting in the car, crying, after surviving 10 minutes of pickup basketball. Had to ask for a sub and spent the next hour watching. The gym felt like it was 800 degrees, and I reached a new level of overheating quickly. This isn’t hitting me as hard as not being able to speak, but it’s damn close. Even though it was nice to be able to hang out comfortably — something I’ll never take for granted again — I’m not going to put myself in a position to be this sad for a while.

Day 100: My body is struggling but my brain is working. Right now. And I’m not sure how long this good period will last. Experiencing both falter — brain and body — it feels crazy to prioritize one over the other. But right now, on a day when the only thing I’ll ask my body to do is be still and relax (also: tomorrow), nothing feels more special than thinking of something and being able to say what I feel.

Rembert Browne is a writer from Atlanta. He lives in Los Angeles.

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