Being Sick
The health-care system in America is broken. If the end of that sentence bored you, that’s fair. I used to groan at the thought of talking about rising premiums, preexisting conditions, and misdiagnoses, too. Turns out, though, that when you almost die begging for a doctor to help you, these things all become SUPER fascinating.
In the spring of 2016, I got a rash. It was just about as glamorous as a rash can be. After working out on the elliptical for an hour, I was the most exhausted I’ve ever been. I walked the few blocks home, dropped my gym bag, took off all of my clothes, and lay naked on my bed for two hours before having the strength to take a shower. I was planning to shoot a video that evening, so between dramatizing what I thought was a cold and texting to push the shoot back one, two, four hours, I washed my body, put on my face, and headed to Tim’s.
We shot a video about how patronizing articles about #millennials are, and the time I usually spent afterward watching new shows and brainstorming for our next shoot was spent lying on his couch trying to explain just how tired I felt.
Days later I had a full-blown rash and swollen lymph nodes. I was on a flight to LA for the first YouTube Black program ever, and I would be interviewing Mara Brock Akil, one of my Sundance advisors, in front of an audience of the most successful black YouTubers ever.
I made it through lunch, and through the interview, but I felt terrible all day. I bought some aspirin during a breakout session and hoped it would help. After feeling like I was having a heart attack repeatedly, an ambulance had to come and take me to the hospital.
It was clear that this was serious, but there was nothing that could be done without a visit to a doctor first. I came back to New York. I committed to figuring out what was happening to me.
Imagine the most frustrating day of your life. This is a day where everything is inconvenient and taking too long, is too expensive, and is filled with miscommunications. Every day of the following month was like that. I saw a variety of doctors. I spoke with my friends’ parents who were health professionals. My bank account was hemorrhaging. I was getting sicker and sicker, and doctors stopped wanting to give me painkillers to deal with the pain for fear of an addiction that would never come. One doctor offered me Xanax, as if I could relax my way out of whatever was causing the intense pain and fatigue.
Lying very still in the MRI machine, I heard a doctor’s voice come over the speakers.
“Hold tight, we need to do some more imaging.”
They’d said a lot without saying much at all. I’d had CT scans and MRIs after car accidents and chest pains. They were always the same. But this time they would have to do it again. I knew they’d found something. I couldn’t be sure, but the tears believed it was cancer.
A day later I would get a phone call from a third doctor.
“Is this Akilah?”
“Yeah.”
“Okay, so we have your imaging results.”
I tried to sound calm on the phone, but I was pacing my living room with the phone on speaker. How bad was it? How long would I have to live? Would I lose all my hair? I tried to quiet the thoughts, but I knew bad news was coming.
Tumors. Three of them. Benign, but two are classified as “giant,” all of my worries were confirmed.
“I’d recommend surgery, but it may be difficult to get someone to operate. It’s a major surgery, and you’re so young.” He choked up. It was the catalyst for me sitting on the floor and crying for the rest of the evening. Soon I’d schedule more and more appointments.
A doctor who had taken the “completely removed” approach to bedside manner explained my predicament.
“One tumor is the size of a golf ball. The other—your pinky nail. And then there’s the large, excuse me, giant one. It’s classified as giant if it is larger than ten centimeters, and yours is just larger than that. Think grapefruit.”
And with all of this knowledge, all of these expensive tests, all of the confirmations that there was, in fact, a real problem, I still couldn’t find a doctor to sign off on surgery. I couldn’t keep living like this. My days were short because I had to sleep to avoid the pain without prescriptions. I was basically at that point in Groundhog Day when Bill Murray’s character is so sick of reliving the exact same day over and over again that he just drives off a cliff—but even that doesn’t help.
It’s difficult sleeping with IVs in your arm. My doctor swears that once the IV is in you can’t feel it, but that’s not true. I feel every pull, poke, and rub against them. And there are at least five of them. There’s pain and confusion but then I remember where I am: I’m lying in bed in a room that’s as dark as one can be when the door is open and there’s a light on in the hallway. This time I remembered to bring my sleep mask and earplugs to quiet the incessant, unnatural beeps reminding anyone that the stranger on the other side of the curtain and me—we’re both still alive.
My veins are small. Dainty, I guess. Every time I’ve ended up in the hospital (and my visits were becoming more and more frequent), I get stabbed at least five times, causing otherwise confident nurses to reevaluate their training. This time I’ve lost count of how many times blood has been drawn and how many times I’ve been given a spiel about how the fluid for the CT scan will burn through my veins and make it feel like I’m peeing myself, but I’m “probably not peeing myself.”
“My head is killing me,” I whined to my mother through the phone.
“Where does it hurt?”
“Kind of like there’s a knife sticking through my forehead?”
“Take some aspirin and go to bed, Kilah,” she said as if she were in the room hugging me rather than hundreds of miles away in Kentucky. I took the aspirin and I went to bed.
But the headache was still there when I woke up.
Until I got sick I thought sleeping solved everything. But lately it was just an interlude to more fear, a short break from being on the verge of tears. I never could fully accept that my life might never be normal again or that it might not last very long at all. I’d taken an Uber to the emergency room. If you call for an ambulance in New York you’re never really sure which hospital you’ll be taken to, so I found a favorite and stuck with it.
The doctors there ran through the normal questions: What’s your name and birthdate? Are you allergic to anything? What’s your pain level? What are your symptoms? And regardless of how I felt, they’d hook up an IV. I was very calm as I explained that I had a severe headache and also that for the past six weeks I’d been dealing with everything ranging from a rash to swollen lymph nodes to a strange electric shock sensation every time my body temperature changed even slightly, and, oh yes, I had a giant liver hemangioma that no one wanted to operate on because it’s a major surgery and it was benign.
The CT scan results came back about an hour later as I lay in bed on my phone watching Snapchat stories from friends and choosing filters for my own.
“We’re going to have to keep you overnight,” the doctor said. “You said you had a headache?”
“Yeah, since last night,” I reiterated.
“Well, we did a blood test, and a normal range for D-dimer to come back would be fifty to three hundred. Five hundred would be high. Yours was at three thousand.”
“Okay?” I don’t remember what test this was called or what it was used for, just that I was still alive, but this didn’t sound promising.
“The CT scan showed a pulmonary embolism,” he said.
He said a lot more things about the painful blood thinning shot I’d have to take and where I’d be admitted (New York has a lot of emergency rooms that aren’t attached to a main hospital), but I just pretended to listen until he left my curtained area so I could call my mom and cry. To tell her how I’d just cheated death again. How things were more serious than ever. I tried to make her understand that there was a wall between me and the rest of the world, the dead and the living. I could feel my time running out. I was no longer hopeful, even when she told me to be. It’d been two months. My health had never been worse. I couldn’t see the point in playing a game I was bound to lose.
The two EMTs loaded me into the back of their ambulance. I felt their sympathy and avoided making eye contact. It’s difficult to look at anyone sick enough to be in a hospital, but there is something about a young person being ill that reminds us that death might be coming sooner than we planned. It’s enough to make anyone uncomfortable.
Being on the other side of those stares was still alien to me. Staring out the back window of the ambulance, my wet eyes made the streetlights and headlights blur until I blinked and then repeated the process all over again before the doors opened at my overnight hospital.
It’s now six a.m., and the nurses’ station is roaring through the shift change. A doctor comes in and turns on a very bright light and tells me that after breakfast I’ll have a sonogram of my legs to figure out where the clot originated. He doesn’t turn off the light when he leaves.
A misconception I had about hospitals was that people got to sleep as much as they wanted there. That’s not true. It’s like a competition to see how many times a person can be woken up before they get angry. I concede my loss and turn on the TV, feeling sorry for myself.
Only a couple hours later, my friends Ashley and Isha show up to keep me company. They come bearing magazines, coloring books, laughs, hugs. The heavy doses of painkillers and camaraderie almost makes me forget that a lady is literally rubbing goo onto a piece of machinery and further rubbing that machinery up and down my naked body in front of them. She does ask me if I want them to leave the room, but this is the first time I’ve smiled in weeks. If the price of happiness is my bare ass being seen by people I love and respect, so be it.
Asking for visitors, or help, or company is something I still struggle to do. My friends sensed this and just told me what time they were on the way and if I could please tell them what room I was in that would make it a lot easier for them to get in. I was grateful. I’m still grateful. I can spend my entire life alone, fearing that I’m putting someone out by asking for them. And in those moments when I didn’t know exactly if a future was a thing I needed to worry about, I needed people stronger than me to see through my bullshit and just make the quality time happen.
It’s Memorial Day weekend, and the food all follows a theme: bland and patriotic. The modestly iced red, white, and blue cookies taste like communion wafers and add insult to injury.
It’s counterintuitive but helpful to watch films more depressing than my own life at this point. I wince at Black Swan. I bawl to Amy—the documentary about Amy Winehouse. She died at twenty-seven. I’m twenty-six. Of course I draw similarities where I can. But mostly I just watch to gain perspective. No matter how bad the exhaustion, or bloating, or aches get, I am still here.
The summer solstice hits the city, and what used to be my favorite time of year feels like an eternal winter. Whatever is happening with the sun and the moon and the crops—I want the opposite. All I want to do is hide in the dark, and for Mother Nature to normalize my lack of activity.
I start a GoFundMe, because even with my savings of around $10,000, the multiple CT scans, MRIs, doctor’s appointments, and hospital bills drain that money quickly.
“Why did you post that?” my mom asks of my promoting the fund-raiser on Facebook. She doesn’t mean to, but she’s judging me. She’s embarrassed that people know I can’t afford treatment. I’m embarrassed, too. I cry.
“I don’t know what else to do. I can’t afford to keep paying for this, and I can’t work a job because I pass out if I’m up for more than ten minutes at a time.” I break down. The shame of being financially inadequate on top of being scared to death of having to move back home and give up on my dreams, or worse, dying, is too much.
But people give. They are so fucking generous. They give and give. People I admire and have never met donate hundreds of dollars. People I admire and have met give even more. The shame falls away. I haven’t held a gun to anyone’s head and demanded they hand over their wallets. I just detailed the hole that I’ve gotten stuck in, and people responded with empathy and understanding. I still feel ashamed. Maybe it’s because my mom worked so hard my whole life to help us appear less poor than we actually were, and here I am, announcing that I am now broke. You know that girl you look up to who left her hometown and is working for big companies in New York? Yeah, can you give her five bucks?
But the reality is I wouldn’t have survived that time period being even more stressed about not being able to afford rent or the variety of medications doctors kept giving me in lieu of surgery.
Lyle, a friend and artistic partner, posted a picture of me on Instagram and I hate it. It isn’t the fact that I look bloated and my eyes do that thing where they disappear because I’m laughing; it’s the fact that I haven’t looked like myself to me in months. It’s the fact that I’m starting to not look like me to other people.
We all get used to our flaws. We learn to accept them, tolerate them, or at least find some good light and a flattering angle to hide them. So it was jarring to me to see all of my health problems reflected in a body I was already working on tolerating. Cheeks that look like they’re winning the Olympic “chubby bunny” competition, curls I’ve been too tired to tend to, and clothing that fits awkwardly—somehow both too big and too small at the same time and in all the wrong places. More than disliking the way I look, I don’t recognize myself.
That had become the theme of being sick. This isn’t happening to me. This isn’t me. Because it if it were me, I’d have to admit that I hated myself. That all of the horrible things this body was doing was me doing it to me, and rather than slaying some dragon, I was going to be cutting out a chunk of my body and hoping that all my organs could just stay chill for the duration of recovery. That’s a scary thing to absorb.
I look terrible. I will still be this person even after I pay someone to stab me in the stomach and remove some lumps. Everything that I hate right now is actually happening and it’s not happening in the past; I’m drowning in it right now.
People who mean well give me words of encouragement like:
“You’re so young. In the long run this will seem like a tiny blip in your life’s story . . .”
and
“We miss you!” shouted at varying decibels after midnight in a Snapchat from what looks like the best party ever—every time. Nothing helps. I start to realize that physical pain is less agonizing than watching everyone living out my days and theirs while trapped in a body that is giving up on me.
The only thing I regretted when I found out how bad the tumor was was dieting. I wished like hell that every birthday party I had eaten the cake, every movie I’d tried the popcorn, and every flight I took the damn pretzels, cookies, or peanuts. It was almost funny, really. I had gone from working out every day, counting calories, and comparing myself to literally every woman who passed me to realizing that regardless of if I was skinny or overweight, my ass was gonna die. I thought I was going to die. And I thought that I’d treated most people fairly and made amends for the things I’d gotten wrong, but mostly, I wished that I had been easier on myself.
There’ve been countless nights since the surgery that I thought I might be dying. From the first night, when I rang the bell for more medicine for so long that my neighbor in the recovery room hit their button for me, too, to the night I lay awake crying while my sister and mom lay in my living room, me being too ill to use the restroom by myself.
Healing was a long process. It took me a year to be able to feel strong enough to work out again. The scar is large and noticeable, but I’m not embarrassed. I would take four or five of those scars if it meant I didn’t have to look forward to another period of my life being so horrible and isolating. But now that I know how bad it can get, I worry a lot about it happening again—the illness, the reluctant doctors, and the wishy-washy insurance. Every achievement is marred by the thought that at any moment I could feel very tired and it could be more than a cold. I don’t know if I’m a strong enough person to overcome something so painful and absolutely incomprehensible again. I don’t think I should have to be.
I’ve gone to the emergency room a number of times since getting out of the hospital simply because I had a sharp, phantom pain that I thought might be an embolism. It’s madness, but caution feels warranted.
I don’t know how to end this essay. I’d like for you to know that I’m also taking major advantage of having energy and good health. As much as this experience scared me, it also made me want to achieve as much as I can as fast as I can, because that loss of time felt like having my wallet stolen. Literally and figuratively. I will do everything I want to do the way I want to do it, because that’s all there is.