Features

Frustrated by how frequently those suffering will be told to "think positive" and pray, or be blamed for having bad karma, Lucy Hunter delves into the struggles of Zoe, a young woman living with a chronic auto-immune disease.

Zoe was 15 when she was diagnosed with Granulomatosis Poliangiitus (GPA, formerly known as Wegener’s Granulomatosis, changed name because of Wegener’s Nazi past). GPA is a chronic auto-immune disease which affects one in every 100,000 people. It commonly attacks the kidneys, lungs, and nasal passages. Untreated it can cause facial disfigurement, blindness, amputation, organ failure, and death. Zoe’s body was shutting down.

Medication and treatment are extremely dangerous and debilitating. Zoe says her treatment was, initially, “Really difficult on the body. It’s essentially like chemo, which is sort of taking you as close to the point of death as possible without actually killing you.” As her body wasn’t responding as expected to steroids and immune suppressants, Zoe eventually had to have intravenous chemotherapy. She has now finished, but had more treatments than she can remember over the course of about nine months. She describes what it was like: “I couldn’t walk after each treatment. I had to get a wheelchair down to the car. I’m not an overly emotional person, I don’t cry often, but there have been times when, with chemotherapy, you just start picking up and you get slammed back down so many times. It’s hard to keep going, alright, let’s go another round, let’s keep doing this. You wonder if it’s even worth it anymore.” Zoe missed nearly her entire seventh form year because of her treatment. Now 18 and starting university, she describes her usual health as “below average,” but says, “it gets much worse than that.” She had to decide whether or not to freeze her eggs at the age of 15. She suffers daily frustration at her limited physical freedom. She has to strictly limit her intake of alcohol and time spent socialising. She can’t get any piercings or tattoos, have a job while studying, or move into a flat. Her mum always has to know where she is. Her daily medication makes her feel awful. A class, short walk or coffee date can exhaust her for the rest of the day. Though it is currently in remission, she will have the disease for the rest of her life. What could Zoe possibly have done to deserve this, and what reason could be good enough to make it worthwhile?

The world is wonderful. It is also screwed up in lots of ways, and people have different ways of coping with it. When someone is having a crisis in their life that they are struggling to deal with, it is ridiculously common to hear people give them advice like “what goes around comes around,” “everything happens for a reason,” “the universe is trying to teach you something,” “I will pray for you,” or “God works in mysterious ways.” They can even be told that it is their bad karma coming back to them, and they should be happy to get it out of the way so that good karma can return. This is usually said with an air of certainty, wisdom, and calm, as though the matter is closed. And, of course, people tell themselves these things all the time. These ideas are loosely called “magical thinking,” the idea that your thoughts can change the world around you. They assume that there is a guiding intelligence at the heart of the universe that is there to help you personally. I think there are assumptions that go with this kind of thinking that are not only illogical, but immoral and potentially harmful.

Think of people even worse off than Zoe. Think of torture victims. Think of babies who are born, live a few miserable years, and then are murdered through abuse or neglect. Think of people who die cruelly and pointlessly. Think of Josef Fritzl’s daughter Elizabeth locked in his basement for 24 years. What possible reason can there be that is good enough to justify these things? To make them better people? To make you appreciate your own cushy life? And then you break up with your partner or get fired and you “wisely” say how everything happens for a reason, that our trials make us stronger? If someone dies needlessly, how can it work out ok for them? What kind of plan is that? How can being tortured make you a better person? Maybe some people come out of unspeakable horror and find peace, wisdom, or direction in life. Many others come out with permanent disabilities and PTSD. You can’t justify atrocities. Even if everything turned out okay in the end, the means are too awful to be justified in any way. If this was someone’s plan, that someone is callous and cruel. And if the idea of it is horrible to humans, then why not to an all-powerful, all-loving, all-knowing God or life-force?

Don’t get me wrong – I think that psychological health is an extremely important part of human well-being. If meditation helps you clear your mind of anxiety or sadness, then that’s wonderful. If praying helps you collect your thoughts and sort out your priorities, then that’s a good thing. If positive thinking makes you a better, kinder person, then that’s just excellent. Just don’t think you are going to change the world with them.

Having had her life narrowed to the task of staying alive for so much of her youth, it is difficult to grasp how anyone would have the nerve to suggest that Zoe should be taking a different approach to her health. So when people tell her that she is not taking the right spiritual path to good health, she gets angry: “I don’t have the strength to educate people with what’s going on with me. So when I get the advice – to pray to get better, to just be positive, or that I just have to choose to be happy – I really resent that kind of advice from people because it feels like a criticism.”

Why would a superior being, all-loving and all powerful, make a teenage girl who doesn’t believe in it so sick that she would go as a last resort to a church to beg for mercy? And then choose whether to listen to her or not?

People suggesting prayer as a way of curing illness really believe it does what they say. There are many anecdotal stories of the miracles achieved through prayer. But, sadly, scientific studies have failed to reveal any evidence for its efficacy. “The Great Prayer Experiment” was a massive study funded by the Templeton Foundation in 2006. The $2.4 million experiment involved 1,802 patients at six different hospitals, all of whom were receiving coronary bypass surgery. They were split into three groups – one group who weren’t being prayed for and didn’t know it, one group who were being prayed for and didn’t know it, and one group who were being prayed for and did know it. Congregations of strangers were given the first name and initial of the patients they were praying for. The published results showed there was no difference in recovery time for the patients who didn’t know if they were being prayed for or not. The difference came in when the patients knew they were being prayed for; they suffered significantly more complications than those who didn’t. It would appear that the pressure of being expected to benefit from the prayer was doing more harm than good.

While she appreciates the thought of her Christian friends praying for her, Zoe knows about this unnecessary pressure. She says “I’ve had people tell me that if I could give them time, if I would come to church with them, that they could heal me. [If it didn’t work] I would have done something wrong, like I didn’t want it enough or didn’t have the faith. But it wasn’t really feasible for me to be giving that much time anyway. I was kind of busy doing treatment that was having an effect.”

Positive thinking, Prayer’s less “religious” counterpart, does something similar in putting the onus on the sick person to get well. Zoe sees it as a kind of sick (in both senses) competition. She says, “I really am so against people comparing someone who’s sick to someone else who’s been sick “better” than the other person. I hate that sort of competition. It’s all shit. It’s maybe different levels of shit, but it’s all shit. I just think that if you can’t give support, don’t make things harder.” I ask why she thinks people suggest positive thinking to a chronically sick person. She says, “It’s a way for them to deal with it. They want to think that it’s something that you can fight against. That’s why they use words like “the battle” against cancer. They want to think that in every case there is a possibility of winning.”

Maharishi Mahesh Yogi was the creator of “Transcendental Meditation” (TM), and was one of the first Indian holy-men to come to Europe and introduce Indian spirituality into popular western culture. He had many famous followers, including The Beatles, giving him certain popular credentials. Though he died in 2006, millions of followers still subscribe to his wisdom. He promoted the idea that meditation through mantra-chanting will cause “yogic flying” (levitation while meditating) and global peace. His project for global peace started in the late 1950s. In 1962, India was at war with China. Two years later, they were at war with Pakistan. In 1970, another great war created Bangladesh. Perhaps without TM the situation in India would have been worse. A cynical view would be to say that it did nothing to help.

Positive thinking, quantum healing, the secret, or transcendental meditation is based on the idea that there is positive and negative energy that can be directed to or from your person with the power of the mind. But the idea of disease as a negative thing that can be eliminated is just wrong. Zoe’s body isn’t doing something good or bad, it’s just functioning the way that it always has. She can no more psychically change the function of her immune system than she can change the colour of her hair or the length of her limbs. She explains, “It isn’t like an evil parasite thing; it’s just an imbalance. It’s not good, it’s not bad; it’s just there. I had to realise that my body and this disorder were one. I just have to deal with it. You just want to take out the bits that are making you sick, you feel like you’re not clean. But my system is already fighting against itself. I don’t need to fight against myself. It’s not malicious, [it doesn’t] have emotions. People attach emotions to it so they can feel like they have some power in it.”

Positive thinking contains the malevolent implication that people who seem to have “bad luck” have somehow attracted bad things to themselves through negative thought patterns. It is making out that the person is somehow to blame for their own misfortunes. This is sometimes called the “Just World Hypothesis” – people don’t think bad things will happen to them if they are “good.” Zoe has endured many “unlucky” disappointments with her body’s reaction to her medication. She explains, “I’ve heard so many times about things that should work. It’s very rare for this not to work and it’s very unlikely this will happen. But I take everything with a grain of salt because even if there’s a 99 per cent chance of this not happening, there still has to be someone in the world for it not to be 100 per cent. And what makes me more special than somebody else to not be that 1 per cent?”

Perhaps she has bad karma. While prayer, meditation, and positive thinking can be good, harmless things when not given more credit than they deserve, karma is just nasty. According to Wikipedia, Karma refers to “the principle of causality where intent and actions of an individual influence the future of that individual. Good intent and good deed contribute to good karma and future happiness, while bad intent and bad deed contribute to bad karma and future suffering.” In other words, if something good or bad happens to you, you deserve it. While the influence of karma is positive, if it encourages people to be kind to each other, the flipside is downright sinister. I asked Zoe, “What could you have done to deserve all this suffering?” She shrugs and says, “I don’t know. I can’t think of anything. I haven’t stomped on any kittens or anything.”

But she may have done something in a past life. Or she could have inherited bad karma from her parents. These are the justifications given for innocent people who have awful things happen to them. A baby born with a hideous, agonising disease? The little shit must have been an arsehole last time. People living in terrible poverty with no reliable access to the necessities of life? They are lucky, because next time they may get something better. Just typing it makes me angry. It is horrifically irresponsible and arrogant to presume that huge numbers of ordinary children and adults deserve suffering worse than the punishments the worst criminals receive in prison. Imagine if we were to sentence all the rapists and murderers in our prisons to death by bone cancer. It would be rightly seen as too cruel and heartless, even for them. What could an innocent child have done to deserve it?

What does help Zoe is obvious: the support of her friends and family – particularly her mother who has been with her at every single appointment and seen her through the worst days and nights of her illness; an online community of people with her condition; modern medical treatment which, 40 years ago, would not have been advanced enough to save her life; living in a country with a partially socialised health system that pays for her treatment rather than burdening her and her family with unpayable medical bills; and her body that has responded well to chemotherapy. “They do know that this does work, this has worked. It’s the treatment they save till last, till they have to. They started seeing improvements in my blood tests. They’ve been really careful and I’ve got total experts in the field – I’ve literally trusted them with my life, and continue to do so. I finished chemo just before Christmas last year.” After chemo, Zoe had to inject herself weekly, with side effects being a day of intense nausea, flulike symptoms, fever and chills, extreme exhaustion, and headaches. She is now on weekly pills that are easier on the body. She takes them into the weekends, cutting into her own time so she can keep studying and lead a “normalish life.” A lot of energy goes into maintaining an outwardly “normal” appearance – you couldn’t pick Zoe out on campus.

It would be wonderful if we could pray to something and end the suffering of undeserving people and animals; if life were fairer, and everybody got what they deserved based on their actions; if thoughts could attract positive or negative manifestations of reality, or meditation did bring global peace. But the world just doesn’t work like that. Liking the idea of something doesn’t make it true.

We have Anne Frank’s diary; it doesn’t justify her suffering. The people who died in the concentration camps didn’t deserve what they got. Maybe last year’s national uproar over the Roastbusters in Auckland drew extra attention to date rape. It doesn’t mean it happened for a reason. The girls and women victimised shouldn’t be pleased to be a part of a revolution. Maybe Zoe has become a better person because of her hardships. That doesn’t come close to making it ok. Some things are life changing, some things are cool, some things are just utter shit. None of them happen for a purpose. They are not divine rewards or punishments. You didn’t attract them to you through positive or negative vibrations. Magical thinking is not virtuous. To believe it is cruel, arrogant, irresponsible, and patronising. It puts pressure on people who have lived through hellacious events to look on the bright side. It is saying that it is ok for people to experience horror and then die pointlessly to help make you a better person. No god or intelligent creator would be witless enough to put that kind of system in place.