Advertisement

At 24, Encephalitis Almost Destroyed Her Life

Photography and art direction by Marisse Caine. Natalie Ho is 28-years old this year. Her brother Christopher, who is five years younger, doesn’t have many kind words when it comes to describing their relationship. Over the phone, the words ‘slut’, ‘pity mongering’ and ‘bitch’ come up multiple times when I’m speaking to him, and I feel as though I’ve caught him on a bad day. “I’m not going to mince my words,” he tells me, with a half-hearted laugh. He goes on to recount an episode from around three and a half years ago during which his sister experienced a violent meltdown and he had to help restrain her. In the process, she scratched him all over both arms. “She even tried to hurt our dog,” he adds, “I was so affected by it.” Eventually, Nat blacked out, and would go on to be hospitalised for the following six months or so, transferring first from Tan Tock Seng Hospital to the Institute of Mental Health (IMH), and finally to Mount Elizabeth Hospital. As for Chris, he had to see both a psychologist and a psychiatrist to deal with the trauma. Before he enlisted in National Service, he stopped therapy for about a year because it seemed like everything was fine. But then a series of panic attacks caused him to be certified ‘OOT’ (out of training) during the Basic Military Training portion of his National Service. Today, he’s back on antidepressants and has resumed therapy. When I ask if finding out that Nat was physically sick and not actually crazy made a difference in how he’s perceived what happened, he replies, “As far as I know, this is how Nat’s always been. Before she left for Australia, when she was there, and even when she came back, she was always just getting shit-faced and yelling at everyone.” In response to this, Nat says, “When I’m shit-faced I go to my room and hope nobody notices. But yeah. I guess that’s just what he sees maybe? I never was at home a lot.” Then she adds, “I’m just an angry person. Since the beginning of time!”

Nat knows that someone in her position shouldn't be smoking anymore. But it's also understandable why she might be beyond caring. Encephalitis is not a common condition, with approximately 1 in 200,000 people affected by it every year. It’s essentially an inflammation of the brain, and the onset of it includes symptoms such as confusion, headaches, and even seizures. When Nat was transferred to IMH after blacking out, it was with the expectation that she would be discharged in a few days. Her mother Josephine shares that at IMH’s high dependency ward, where Nat stayed, a typical stay lasted between three to five days. In comparison, Nat was there for two weeks, after which they switched doctors in the hope that someone more senior would figure out what was wrong. “And of course, throughout, we asked, why? How come this happened to us?” she says. Throughout Nat’s entire stay at IMH, she had to be restrained to prevent her from hurting both herself and the nurses. Throughout this entire period, she felt as though there was a conspiracy afoot to keep her imprisoned. She shares: “You know how hospital food comes all separated into sections? I thought that each section represented a part of my family that they cooked with. Even my dog. When the nurse asked if I wasn’t hungry, I just thought, you can’t fool me! I know what you’re trying to do!” After being moved to Mount Elizabeth Hospital, she was diagnosed with autoimmune encephalitis, a strain which includes symptoms such as psychosis and memory loss. At Mount Elizabeth, she tells me, she was again restrained to prevent her from punching and drop-kicking the nurses—actions she only very vaguely recalls. She describes her time in the hospital as like being in a movie, where everything had a dreamlike quality. Even now, a lot of what she knows has been pieced together from what her friends have told her. Amongst what she does recall is how she was always in pain, and how she would constantly ask her nurses to marry her. “Even now, there are actually a lot of things that we haven’t told her about,” Josephine says, before declining to elaborate on what these things were. “At the time, we just didn’t know if she would get better. Between 3 months and 3 years, we didn’t know what kind of recovery time frame. Thankfully it was just a very bad 9 months. But even now, when we think about it we want to cry, so we haven’t really brought it up.” Nat echoes this, saying, “I guess part of the issue I have is that I don’t even know proper facts on what was wrong with me because I wasn’t present and nobody seems like they wanna talk about it.”

While she was sick, she had no idea why she wasn't being allowed to leave home, and that her parents were simply trying to keep her safe.

Because she was home so often, she ate a lot, and consequently put on an unprecedented amount of weight. Nat then tells me about an incident that happened after she was allowed to go home and her condition had somewhat stabilised. “I thought I was a lot better and I wanted to stop taking my medication. But my Dad refused to let me stop and to let me leave the house and I freaked out. I started trying to cut myself with my house keys and I actually called the police on my parents. When they came, I told them to look at the cuts—what my parents had done to me. But of course they didn’t believe me because our helper had seen everything.” Laughing a little, Nat goes on to share that when the police refused to arrest her parents, she even said to one of the officers, “This is why no one likes the police! You guys can’t even do your job!” Tears streaming down her face, she then dashed out of the house to a nearby petrol kiosk where she wanted to buy cigarettes. When the cashier asked if she was okay, she said something about having a flu before throwing in a packet of tissue paper. “I continue to believe that that person was not me,” Nat says, “But this hasn’t absolved the guilt that has come with all the things I did to hurt all these people. It doesn’t change what happened. And although I caused everyone pain, I myself was in a lot of pain.” At the time, Nat’s room had been modified and rearranged to prevent her from hurting herself, and she believed again that these were attempts to imprison her. Josephine adds, “She mentioned that we didn’t let her friends see her. But actually, she was doing a lot of funny things so we didn’t want people to see her in that state.” And so the above incident arrived partly also as the result of everything Nat had experienced up to this point: frustration at her parents for restricting her movements, frustration at what her medication had done to her (they caused her to gain weight and break out in acne), and frustration at having to live like this for what had been almost a year. Looking back on this time, Chris says, “I was just really angry at her all the time. And then one day I came home and the police were there. Like, what the fuck? What the fuck is wrong with this crazy bitch?”

The petrol kiosk where Nat ran off to for cigarettes. After speaking with someone who made her realise that what she currently lacks in life is spirituality, Nat has become acutely aware of the difference between who she is now and who she was before she fell sick. “I used to care about shit. But my illness really made me realise that none of this means anything. Things just happen, and all this stuff about purpose is just what we tell ourselves so we can feel better about life. I don’t believe that there is a god or that everything is connected, or whatever. I just don’t.” While she was once a promising junior art director at an advertising firm, she had to leave her job to recover from her illness. When she wanted to and was finally able to go back, the position was no longer available. In the past few months, she has switched jobs twice. “Now, I’m almost 30, and yeah I know what I want to do that I will enjoy like riding my bike and stuff. But I’m also really aware that I’m supposed to be making something of my life and I have nothing to show for it.” She also explains that she’s now afraid to be unhappy or to be exposed to anything that might cause her anxiety. After all, there remains a possibility that a relapse could be triggered. “So now I’m just trying to get through everyday without succumbing to some explanation for why life is not worth living. I already lost a year to my illness, and I still struggle everyday to see the positive side of everything that happened.”

Chris eventually tells me, “I guess I got to a point where I just got tired of constantly hating. And then my family just dealt with all this and got through it, as families do. Or at least my family did.” On a Tuesday evening, when he comes home to see Nat in the middle of the photoshoot for this story, he blurts out, “You? Modelling? Seriously?” He sounds a little sarcastic, but also more playful than malicious. In typical sibling fashion, Nat retorts, “Shut up go away!” “OK BYE,” he then exclaims, before bolting to his room. A few weeks later, during a lighter moment in our conversation, Nat shares about Chris seeing a therapist before going on to criticise him for being spoilt because he drives the family car to report for his National Service everyday. This is despite how close they live to his camp. On her phone, his contact is affectionately named ‘brotopher’. And even though Chris says that they’ve always “pretty much lived separate lives”, and that their relationship right now is basically what it’s always been despite Nat’s illness, I see that he has tagged her on Facebook in a collage of his dorky, contorted faces with the caption, “My mum made this.” Nat confides that while it took them some time to deal with how affected Chris was by what happened to her (and as a result, him), they now have a better relationship than before. “I learnt to see him as a person rather than just my little brother,” she says. And contrary to the language he uses, they really do have a good relationship now. “I think you did actually catch him on a bad day,” she adds, “I mean. We fucking go for foot massages at 1am together. Which I pay for.” At the same time, Nat has found little consolation in having survived and recovered from her illness. There is no silver lining, and there is no story about how this happened and she came out stronger because of it. She doesn’t know for sure that everything is okay, and still finds it difficult for others to relate to her because she’s “literally been to hell and back”. If she once felt lonely, she now, more than ever, feels like a misfit. Josephine shares that for a time during Nat’s illness, she started behaving like a child—“like a baby”—and it was though she was growing up all over again. Even then, she admits, “Now she’s back to her old self, and I think it’s better. It’s better for her to be herself.” And for Nat, this self is the Nat who says, “If I had a choice, I would still have rather none of this happened, and that I was still living the life I used to.”