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A Virus Killed My Mom. It Took 30 Years. Nobody Knew What Was Wrong.
Now I can finally forgive her.
It started sometime around my fourteenth birthday.
My mom began acting stranger than usual. She said things that didn’t make sense. She didn’t seem to understand what year it was. She talked about things that happened decades ago as if they’d happened yesterday. She remembered other things that had never happened at all. She said she’d lived in Paris.
My dad got frustrated and went to bed early.
He asked me to keep an eye on her and my brother, who was seven or eight at the time. “See if you can get her to talk sense.”
Somehow I took it as a personal mission to lead my mom out of her fog. I listened. I tried to see if she was playing some kind of game with us. Maybe she was acting confused on purpose. Maybe she was angry about something and wanted me to figure it out. I stayed up with her until two or three. Then I crashed.
The next morning, she was still up.
She hadn’t slept.
She’d spent all night smoking cigarettes and drinking black coffee, sitting in pretty much the same place, barely responsive.
That went on for a couple of days, into the weekend. My dad made sarcastic remarks. Then he started giving her commands. He told her to stop acting weird. He told her to go outside and get some fresh air.
He made threats.
Finally, I convinced him to take her to the hospital. He treated it like a punishment, and an inconvenience. He acted like he was calling her bluff, that faced with a night in the ER, she’d admit it was all an act.
I remember walking my mom into the emergency room on a Friday night. She moved like she was underwater. It just seemed to make my dad even angrier. He walked so far ahead of us that I lost sight of him.
He acted embarrassed.
We spent all night there, waiting for the doctors and nurses to do interviews and run tests. They tried to send her home with us several times, but my dad insisted they do something to “fix” her. Somehow, we managed to get her committed to a mental health hospital. It was temporary.
She was there a week, maybe two.
We all tried to act as normal as possible. We kept up our normal routines. We didn’t tell anyone what was going on. Not friends. Not teachers. Not coworkers. If anything, we worked overtime to pretend we were fine.
We felt ashamed.
She came back acting like a new person. Relatives visited to welcome her home. She was happier than I’d ever seen her. As the days went on, it became clear that her newfound happiness was an act. She was trying to fool us, because she didn’t want to spend the rest of her life in a mental facility. Inside, she was deeply hurt and angry at all of us, including me. It all came slithering out.
Things got back to normal for a while, more or less.
For my family, normal meant a lot of yelling and fighting. We excelled at that. Even before the strangeness, my mom threw things at me. She broke a bowl over my dad’s head. She slammed cabinets and screamed. She talked to herself out loud for hours. My brother kicked my mom. He kicked me.
We convinced ourselves that everything was fine.
Then it happened again.
About a year later, her mind went rogue again. This time it was worse. She got violent. She turned over furniture. She tried to bake bread and almost started a housefire. She refused to go to the hospital this time.
My dad had to call the police three or four times before my mom finally pushed my brother down the front steps. That was enough for them to arrest her. I’m not sure if you’ve ever watched the police arrest your mom. It became a regular feature of my adolescence. She was not graceful about it.
She fought. She begged.
I can sort of understand why she started to hate me. Every single time, I just sat there and watched. She probably saw the look on my face, that I wanted it to happen. I wanted them to take her away.
After that second time, it started happening every few months. It just kept getting worse. The delusions evolved. Suddenly my dad was a secret agent. I was an alien clone. She couldn’t trust us. She started sneaking into our rooms at night and threatening us. She said she was going to kill me.
I know what it’s like to downplay and minimize risks. When my mom tried to wrestle me to the ground and suffocate me, I told myself it wasn’t that big a deal. She wasn’t that strong. I fought her off.
She only sort of tried to kill me.
Social workers came to my school. They called me out of class to ask questions about my living situation. They showed up at my house. Back then, I didn’t understand that they were there to help me. It felt invasive.
So, I lied.
I told them everything was fine. I thought that’s what you were supposed to do. If I told them the truth, it meant that I was a failure. It meant that I wasn’t capable of dealing with the problem myself.
I was 16 years old.
My dad tried to achieve normalcy at all costs. He even planned vacations. One time, he drove us nine hours to the beach. My mom was in the first stages of another mental breakdown. He didn’t listen to me.
“She tried to put her shoes in the freezer,” I said.
“We have to cancel the trip,” I said.
“She’s not okay,” I said.
We went anyway.
It turned out to be a huge mistake. Of course, her condition got worse. The stress of travel brought it on at warp speed. That was the weekend she became convinced there was a hurricane coming. Somehow that turned into the apocalypse. My dad wound up fortifying himself on the balcony with his cigarettes.
He told me to take her for a walk on the beach.
Later that night, she took off her clothes and tried to climb into bed with my brother. Fortunately, it woke us up.
Imagine being on vacation nine hours away from home, your mom is having massive hallucinations, and your dad just wants to smoke and complain about how he never gets to enjoy any time off. The local police wouldn’t lift a finger to help, so we had to drive back with my schizophrenic mom in the back seat, just hoping she didn’t do something to cause a major traffic accident.
By the time I was 17, any glimmer of a social life was gone. My dad didn’t want anyone coming around to see my mom.
Neither did I.
My dad often asked me to cancel dates and skip parties so I could help him manage her fits (and my brother’s). I was the only teen I knew who cooked meals and did laundry for the entire family.
I also bought groceries.
It was around then that my dad found out about my mom’s secret post office box. That’s where he discovered the credit card bills.
About forty thousand dollars…
Soon after that, he lit a cigarette and asked me to sit down. He explained that he was going to have to cash out my college fund to pay off the debt. If I wanted to go to college, I was going to have to get a full scholarship for everything. I would probably have to go somewhere close to home.
“What about Emory or Cornell? I have the test scores and GPA. I thought I was supposed to go to the best college I—”
He closed his eyes and blew smoke at the ceiling.
“Don’t even think about it.”
The doctors gave us no answers. They offered diagnoses and drugs, and none of them helped for very long. Life revolved around her chronic illness. Even after a night of wiping her urine off the floor or scrubbing her number twos out of the carpet, I’d go to school and act like everything was fine.
Teachers would catch me sitting alone.
They’d tell me to smile.
They couldn’t possibly understand what could make a 17-year-old so sullen. It must be hormones, or a sense of entitlement. One afternoon I was driving home and wound up behind an ambulance on the way to my own house. The paramedics saw me pull up next to them. They were confused.
“Yeah, I live here.”
All kinds of strange things happened. One afternoon my mom believed someone had kidnapped my brother. She called the police. We spent an afternoon convincing the officers that she’d imagined it.
All of this haunted me well into my 30s.
I had trouble sleeping. I had nightmares. I had trouble forming relationships and trusting people. I hadn’t had a real conversation with my mom since I was 13. Her brain couldn’t handle it.
By her late 40s, she could barely walk. My dad hired nurses and physical therapists. They all lost their patience with her.
“She just doesn’t want to get better,” they said.
We believed them.
Toward the end of my 20s, she wasn’t a threat to anyone anymore. She took up a permanent spot on the couch. She stopped eating. She stopped bathing. By then, I’d long since moved on. I was working on my PhD. I was just trying my best to beat myself back to life. Whenever I came to visit family for the holidays, we did our best to include her in things like gift opening.
She just sat there, staring at the floor. Sometimes she’d say something. Usually, it was a random comment, or a complaint.
Mostly, she slept on the couch and watched Fox News.
I said I never had a real conversation with my mom after turning fourteen. That’s not entirely true. I remember the last real conversation with her. I was in my 20s, in town to visit friends. She tripped and fell in the bathroom.
She cut herself pretty badly.
We had to take her for stitches. I remember when we got back, she started crying. She told me, “Sometimes I think about killing myself.”
“Don’t be so dramatic,” I said.
Yep, I said that…
To my mom.
Finally, it got too much for my dad and brother. We started looking for long-term care facilities. Only one place in the entire state would take her. Insurance did their absolute best to avoid paying. After years of work, my dad finally gave them enough documentation to get partial reimbursement.
A few years later, she died.
She died alone in that care facility. Again, the doctors couldn’t explain how. They blamed natural causes. Natural causes included a bout of flu, followed by pneumonia, followed by a series of seizures.
I never said goodbye to her.
I never had any reconciliation. My mom didn’t attend my wedding. She barely knew I was getting married. She wasn’t there for any of my milestones. I could never ask her for advice about anything. Not relationships. Not boys.
It’s weird to watch something kill your mom for thirty years and have no idea what’s causing it. The doctors blamed everything. They charged us a fortune to throw out diagnoses like darts, hoping for a bullseye. They got irritated when we asked for them to return our calls or send lab results.
It wasn’t until a couple of years ago that I started seeing articles about Epstein-Barr virus. I remembered that my mom had gotten a pretty bad case of mono in her teens, from a boyfriend. She mentioned it a few times.
As it turns out, EBV dramatically increases your risk of multiple sclerosis. An abnormal immune response to EBV is also linked to schizophrenia. Those were both the leading diagnoses for my mom’s chronic condition. So here I am, years after my mom’s death, and I finally have answers.
It took a while to admit.
A virus killed her.
It took its time.
It didn’t give her a swift, merciful death. It turned her body against her, and it slowly took everything. It ruined her life. It destroyed her marriage. It crushed her sanity. It turned her children against her.
It tore her apart.
So, this is why we should pay attention to pathogens. This is why we should be kinder to each other. This is why we should listen to experts and stop downplaying the longterm impact diseases have on “a small percentage” of the population. When you’re part of that small percentage, that’s not comforting.
People laugh at the idea of social murder. It’s not funny to those of us who’ve been victims of it. My mom spent 30 years dying because some guy couldn’t keep his germs away from her, and then the medical system treated her like a source of income instead of a human being with a right to health.
My mom was socially murdered.
I have a photo of her from her early 20s, when she was just a pretty young thing who answered the phone for millionaires. She could’ve been anything. Sometimes she talked about going back to college, maybe becoming a teacher. Instead, she lost it all, and she lost it in one of the most painful ways anyone could imagine. She endured the scorn and judgment of everyone around her. They kept telling her that she was causing it somehow. If she just did this, if she just did that, she would get better. Nobody ever understood what was actually going on inside her, because they didn’t want to. It was easier to erase her.
This is why many of us get so angry at the downplaying and minimizing that goes around various viruses, especially now. It drives us crazy to hear so-called medical experts offer opinions about who should and shouldn’t be worried about the long-term impacts. It’s almost staggering how they can continue to be wrong with such bold confidence, without the slightest care about who it hurts.
As for me, I can finally forgive my mom. I finally know what happened to her. It provides a strange sense of symmetry. In fact, I owe her an apology. If I’d known better, I would’ve been so much kinder. It makes sense for the people who’ve had their lives permanently altered by disease to be vocal. We’re doing our best to spare other people from the pain we’ve lived through.
Now thanks to these last few years of hopelessly reckless policies, there’s going to be millions of people who have to go through what my mom did, and it’s going to leave deep scars on everyone around them.
My mom didn’t do anything wrong.
It wasn’t her fault.
She got sick.