Ijeoma Oluo - Ijeoma Oluo

 

I didn't think much of the letter when it arrived. I looked at the plain white envelope from the blood bank, and I figured it was probably just a thank you for donating cord blood from the birth of my first child, a few weeks earlier. I figured it would probably say something like, “Thank you for your life saving donation,” or maybe even, “Ijeoma Oluo, local hero.” [audience laughter] But I opened the letter, and the first line jumped out at me in bold print it said, “This is not about AIDS or HIV.” 

 

Now, it was 2001, so we were still really in the AIDS crisis. But I really hadn't thought it would be about AIDS or HIV. [audience laughter] But now, I was like, “Are you sure? Are you sure? Are you sure?” But you know, I kept reading and it wasn't about AIDS or HIV. In simple text, the letter informed me that the blood I had donated had tested positive for hepatitis C, and I should contact my doctor for more information. That was about it. I held the letter and I was like, “What the hell is hepatitis C?” But I figured it probably wasn't that big of a deal. I mean, if it was, someone would call, right? 

 

I did make an appointment with my doctor, like the letter had said. And by the time my appointment came around, my doctor was able to confirm what my own internet research had shown, “Hepatitis C is a blood borne infection affecting millions of Americans, Vietnam veterans, IV drug users, people co-infected with AIDS and HIV. People who had received blood transfusions before testing became available in the mid-90s. Health care workers.” It attacks your liver, it causes cirrhosis, liver cancer and often death. So, I guess it was a big deal. 

 

I was sent to a specialist for a barrage of tests. I waited two agonizing days to find out if my newborn baby had been infected with this disease that I had just discovered I had. I held my mom's hand as I sat through a liver biopsy so painful that I went into shock. I was 20 years old. I was still a baby myself and I had this brand-new baby. I was trying to figure out why my world had just turned completely upside down. After all of the tests, I sat alone with the specialist and she reconfirmed my diagnosis, yes, I had this disease. I had probably had it my entire life. She said, it was most likely I had gotten it from a blood transfusion shortly after my premature birth. But there was nothing to be done. 

 

Treatment at the time was really expensive, often more deadly than the disease itself. And only had about a 20% chance of working. I wanted to argue with her. I had gone through [chuckles] all this pain, all these tests, and I wanted to be cured. But she cut me off and she said, “Do you have anyone to take care of you? Anyone to take care of your child? Do you have anyone who can support you financially if you can't work?” I had to shake my head, no. I had a new baby and I was getting ready to leave a bad marriage. I had never felt as alone as I did at that moment. “Well, then I recommend waiting,” she said. “I mean, there's likely to better treatments down the road, and I don't think you'll die before then.” 

 

I was sent home to deal with my new reality. I dealt with it the only way I know how. See, I'm a talker. I am a walking overshare. [audience laughter] So, I [chuckles] just started telling everyone. I was telling my friends, I was telling my family, I was telling old high school classmates, I was telling my co-workers, I was telling my neighbors. And the response I got was confusing. It was underwhelming, to say the least. But I'm stubborn. And also, I really can't take a hint. [audience laughter] So, I just kept talking about it. 

 

One day, a co-worker pulled aside a close teammate of mine, and he said, “You have to tell Ijeoma to stop telling people about her hep C. It's not something she wants people to know about. It's a disease for dirty people.” See, you know, hep C is a disease you get if you use dirty needles or have risky sex. If you get it, it's because you deserve it and you deserve the shame that goes along with it. I stopped talking to people about it. For the next decade or so, I lived in fear, fear that this disease would pull me away from my precious babies, but also fear that I would be found out and I would be cast out. Not only would I die, I would die alone. 

 

This fear was reconfirmed every time I went to a medical provider. When I would disclose my status to doctors, nurses, even dentists, they would all give me the same look. And a few would even say it, “You don't look like someone with hep C.” What they were saying was, I didn't look like a dirty person. I didn't look like someone who made really bad choices. But they looked at me like that afterwards. I wanted to shout, “Not me. No, I'm a good person. I got this from a blood transfusion. I'm a really good person.” But I had never before used someone's drug history to determine whether or not they were a good person. And as a godless feminist, I know I certainly never used anyone's sex history for that. [audience laughter & applause] 

 

So, I wasn't about to start just to save myself a little pain and reinforce that stigma. I really, really resented the impulse. For a few days in 2010, everyone was talking about Georgia Congressman, Hank Johnson. He was talking to a Navy Admiral about the possibility of sending additional troops to Guam. He theorized that perhaps the added weight from the troops might be enough to capsize the tiny island. [audience laughter] People shared video of this. They were laughing hysterically. But I wasn't laughing. I was terrified. I mean, y' all, I love laughing at congress as much as any other American. [audience laughter] But it had been revealed shortly after this video went viral that Johnson had long been suffering from Hep C, and it had been affecting his speech and cognitive abilities. So, I sat there wondering, would that be me? Would I be left with the inability to effectively communicate, and be mocked and laughed at by my peers?” I sat alone in my apartment in the middle of the night and just watched that video over and over, and I cried. 

 

A few years later, it was announced that a new, safer and more effective treatment for Hep C was being developed. I set up Google alerts. I did a bunch of research. I finally had some secret hope that maybe I could be cured before anybody knew I had this. As soon as it was more widely available, I made an appointment with my doctor. I was sent to a different specialist this time for the same tests, and largely the same result. Yes, I still was sick. I was more sick than I had been, but not very sick. This disease takes decades to kill. But also, like before, there was nothing to be done. “There is no way,” the doctor said. Like, I had asked for world peace instead of medical treatment. And he explained, “These pills are $90,000. You have to be practically dying to be approved. Come back in a few years.” 

 

Now, I personally have not died myself, but I think it's safe to assume it's not fun. But death from Hep C is particularly awful. You die scared and confused as poisons that your liver would normally filter out, impacts your brain. You die yellow with jaundice, with your belly distended like you're nine months pregnant. You die drowning in your own fluids. I needed to get closer to that if I wanted to be treated. I went home and I cried for about two days. But I just got back to the life I'd always known. I focused on raising my sons. I bought a house and I started a writing career. I became known for my frank and open style about really personal and tough issues, that walking overshare thing, but paid. [audience laughter]

 

Even though I was known for this, not once did it occur to me to write about my Hep C, and the more well known I became for being open and honest, the more terrified I was that people would find out that I had been lying. It's ironic that as I began to be known for my wits and my wisdom, that the dreaded Hep C brain fog would set in. A lot of people who have been suffering from this disease from a long time, start to suffer neurological impacts. My anxiety and depression increased, my ADD became completely unmanageable and I couldn't remember words. I would stare at sentences for minutes that felt like hours trying to remember what I was trying to say. I couldn't read anymore. 

 

I hadn't read a single book in three years, and I was scared to tell anyone. But it wasn't until the physical effects set in that I realized I had to do something. When my hair started breaking off and my joints started hurting and I spent way too many nights on WebMD saying, “Why do my feet itch all the time?” that I realized I had to be honest. I had been tested for just about every other possible medical cause for these ailments. But I finally had to say to my doctor, “I do think this is my Hep C.” 

 

Now, my doctor, this is the same doctor I had called 15 years earlier when I got the letter. I prepared for her to tell me there was nothing to be done. But instead, she lifted her eyebrows and she said, “Huh? Why haven't we treated you for that?” Notification of approval of my treatment was really just as hilariously unremarkable as notification of my illness had been. I got a call from an 800 number and an automated voice says, “Your prescription request has been approved. Thank you for doing business with us.” That was it. I honestly thought it was for a change in my ADD med. I was like, “Okay, whatever.” 

 

It wasn't until the next day that I realized it might be for this treatment. So, I called the insurance company and I waited on hold for 30 minutes while they looked through all the records. And finally, a guy said, “Oh, I'm seeing an approval for a Harvoni? That's a really expensive medicine.” I thanked him, and I hung up the phone and I cried. I cried more than I ever knew was possible. I cried for 15 years of pain, and shame and fear that I was going to be free of. But that elation didn't last long, because we live in the internet age. I immediately started googling, what's the worst thing that can happen to you if you take this medicine? [audience laughter] I realized that while most people were just fine, a not insignificant amount of people had really disastrous side effects. Some people even died. And I was scared. But finally, I had enough. 

 

I had lived with this disease alone for 15 years. I was not going to go through the treatment alone as well. So, I gathered up whatever courage I had left and I did what you do nowadays, which is I got on Facebook and [chuckles] I made a video on a Wednesday at midnight, [audience laughter] friends only and I explained what I had been living with and the treatment I was going to be undergoing and how scared I was and then I just went to bed. The next morning when I logged on and I realized that people weren't condemning me. They were in fact concerned and loving. And some were really excited that I was going to get the treatment I needed. I made it public. Just like my fear of people's responses, my fear of treatment was overblown as well. I was sick for one day and then I was fine. In fact, I was better than fine. I was thinking more clearly than I had in years. 

 

I was also seeing this disease more clearly, because once I came forward, other people came forward as well. People I had known for years started telling me about their moms, their dads, their aunts, their uncles who had died from this disease. People told me how long they had been keeping their diagnosis a secret. One woman told me about how even on her mom's deathbed, she refused to let anyone know what was killing her. There are 3.5 million of us [sobs] and we shouldn't have had to be alone. But we weren't just hiding from society. We were hiding from each other. 

 

I am one of the lucky ones. I have been approved for treatment. I'm about halfway through. I don't know if it's working, but the odds are definitely in my favor. If it doesn't work, I'm going to be sad, I might be devastated, but I won't have to go through that alone. For 15 years, I was dying [sobs] alone. But now, even if this disease does kill me, I get to go out yelling and laughing and crying with my friends and my family and my whole community. And that, my friends, is actually living. Thank you.