SHAKEN IN MY SENSE OF WHAT IS RIGHT

Katelyn I. King

What to say, where to start? The thing I’m struck most with at the moment is how shaken I feel my sense of what is right. Actually, I’ll probably get anxious just writing about it. It’s kind of ironic, because I feel like I’ve been growing tremendously in terms of spirituality this year. You would think (at least I did), that as a result, things would become clearer, the "right path," so to speak, would be more illuminated.

Once again, my assumptions have proved false, and I am again stuck in the pit of constant questioning, constantly feeling uncertain and constantly feeling like my role here is incredibly difficult to understand. What is the right thing to do as an outsider? What is the right thing to do as a person who is working every day in the HIV/AIDS field and has enlightening information to share? What is the right thing to do as a fellow human being? What is the right thing to do as a Christian?

Are my motives selfish? Or are they selfless? (Well okay, true selflessness seems totally impossible to me, but you get the drift.) Am I making decisions based on what will let me maintain my peace of mind, or am I making decisions based on what I believe is right—though I don’t even know what is right anymore? These are the questions that are constantly intruding into my mind, and I find them to be the most persistent at night.

Even two months ago I would have said that in terms of the AIDS situation here, my role was pretty clear: encourage people to get tested, encourage people to accept their status, and encourage people to seek the truth, because the truth shall set you free, right? And because life is precious and should be preserved, right?

Because based on my experiences, it seems like knowing my status, however grave the consequences of that knowledge may prove to be, would be worth it. Facing your fears, while initially terrifying, ultimately proves to be incredibly healing . . . at least that’s what my experience has been in the past.

But then you’re in the middle of the warzone, right smack in the middle of what is probably the worst disease of the present day . . . and you know people who have this disease. And you know people who are affected by this disease. And you realize that the answer isn’t simple.

Why would I think it’s the best thing to get tested? Because I have parents who love me and accept me no matter what. Because I belong to a church whose members would be willing to join in my pain and would be willing to walk with me through the suffering until I came out on the other side of it. Because there are plenty of psychologists, counselors, pastors, and more whom I could go to for support. Because I have the financial resources and medical facilities to get the best care and know that I probably have those resources available to me indefinitely.

Because I have parents who have always had honesty at the center of their relationship and who have always had honesty at the center of their relationship with me, a value which is now so deeply embedded into my personality that it’s very hard for me to see a perspective that does not include that as one of its foundational principles. Because I have a certain internal disposition that interacts with all of the above mentioned factors and influences my thinking and my decisions. And the list goes on and on.

So then what happens when you’re here, and you start to really understand the situation and you start to develop close relationships with some of the people that are right in the thick of it all? Let me try to paint a bit of a picture.

Say there’s a woman in South Africa, or one of the many other countries, in Africa and elsewhere, living her story. Say she’s married and has four children. Her husband passes away, and she doesn’t know why. She may suspect that he died because of AIDS. At this point in many countries on this continent her story is the story of thousands, hundreds of thousands, more. Thus it’s quite likely that a widow is a widow because her husband died of AIDS.

But who can she talk to? If she even brings up the possibility that he died because of AIDS, automatically, even if it’s subtle, there’s an implication that her husband got AIDS because of infidelity.

Suppose he’s a Christian. It’s bad enough to be unfaithful to your wife, but when you belong to a church, it’s even more of an abomination. Do you live in fear for the rest of your days because the risk of even talking to someone about it is too great? Do you live in fear that a very scary death may be on its way in the next few years? And that’s just the first stage. Some people never get past it.

Then say this woman decides that she needs to talk about it with someone or someone decides to talk about it with her. Suppose she admits that she’s very scared her husband may have died because of AIDS. She knows she should probably get tested, but she’s terrified to get her results.

"Why are you scared to get the results?" you may ask. Most of the time, the answer is some variation of the following: "Because I’m afraid I won’t be accepted." Working with home-based care, I have heard many such stories and answers.

As a person so foreign to this culture, my early response in talking to such women, who had felt so isolated in their fear and inability to find a safe place to talk about what was on their minds for so long, I’d immediately jump into it: "I will go with you to get tested. I will be with you when you get the results, I can connect you with people who can help, I can try to set up a support network for you. . . . Get yourself and your four children tested. You will find a way through this."

Obviously the right response, not? Looking back, I’m not saying that it was the wrong response, but I do think having a deeper understanding of how best to be a support requires a lot more careful contemplation and patient waiting amid what is often very frustrating ambiguity. I don’t know if I really will ever be able to convey the complexities of the situation, but I’ll attempt to give a little more of a glimpse. . . .

As I’ve talked to such women and continue to spend countless minutes of every day swimming in my own sometimes panicky thoughts in regard to such situations, a lot of realizations have started to emerge for me. I’ve been forced to ponder lessons to be found in confronting both the reality of many people’s lives here and my role as a service worker (and human being, and Christian, etc. etc.) amid that reality.

Say a woman does finally start coming to terms with possibly being HIV positive. Does she decide to test? If she tests, and the results come back positive . . . she will have to tell someone, won’t she?

And what if the people who she relates to most directly can’t accept it? Their lives, at least initially, will literally fall apart if someone in the family tests positive. Will she be able to handle that breakdown along with her own HIV-positive condition? Will she have enough internal strength, enough initiative to get outside help if need be, to take that risk? Can she hold on long enough for the worst of it to pass? And what if her loved ones just can’t accept it? Will she live in isolation? Will she always have a feeling of being now on the "outside"?

But then the flip side: What if they did finally accept it? Because I’ve seen that story unfold too. More and more, it seems. And when the story turns into that of a woman whose family accepts her HIV-positive status, then she has the support she needs to keep functioning, to maintain a higher quality of life. And ultimately things are better after she tests positive than before she tested positive—because the healing comes when you go through the pain—because the healing, if it ever comes, comes when you go through the pain.

But until a particular woman’s story turns into one that includes support after she tests HIV-positive, she faces great risk. Some families will reject. Is she willing to risk that? If the worst happens, can she handle it? I can’t make that call for her.

Then say a woman has a child she decides to test. Say that child’s test comes back positive, as I’ve seen happen. What then? At least some people will have to know, because the child will have to miss school for monthly (or more than that) appointments at the clinic, where she or he will get CD4 counts checked, where medication will be refilled, and so on. If people find out, what will they think? Many will be accepting. But in some cases, the child will really struggle—with family, with friends, with teachers.

Again that great risk. If the mother decides to have her children tested, will this one be made fun of? Will that one be accepted?

Then there’s the question of anti-retrovirals (ARVs), used to treat HIV/AIDS. Because if you know your child is going to get sick, you probably want to do everything in your power to delay that sickness. But at what cost? Once you start taking ARVs, you have to take them for life, with the right diet, at the same time every day, three times a day. Sometimes there are side effects. Sometimes they don’t work that well. Sometimes (though not very often, in my understanding), they don’t work at all.

I saw a boy who had been taking ARVs for two years, and he was very sick. He always had this sadness about him. He had lost both of his parents to AIDS, so he was always shuffled between houses, never really knowing stability. Yes, the ARVs probably prolonged his life for a couple of years. But what was the quality of his life? He was always sick, kids made fun of him at school, he never really seemed to have peace.

As a mother, you have to be thinking, What will be best for my child? Do I take the risk of having her be rejected by family, friends, society? Do I take the risk of putting her on ARVs? Maybe she’s not positive. But if I test him, and he is positive, then it’s my responsibility to do something about it. I have to, once I know. Maybe knowing is worse than not knowing. Maybe knowing will ruin my child’s life. Maybe knowing will ruin my family’s life.

And here is the American, one-year volunteer coming into this warzone and hearing these stories and talking to these people. The immediate reaction is to be their "savior." Give them the information, take them to the facilities, tell them that LIFE CAN BE PROLONGED!

Get them tested. Yeah, it will be really, really hard if the results are positive, but it’s better to know. So you go with them to get tested, the test comes back positive, then it’s time for you to go home, back to America, back to safety, to support, to love and comfort and unconditional acceptance, just when the manure has hit the fan in Africa.

You encouraged and encouraged them to get the test, because that is the only right answer, you must save their lives, and your peace of mind will be ruined forever if they don’t do what you know is the right thing. But now it’s time for you to leave, and you’ve left them to pick up the pieces of a decision that was partly made because of your encouragement, your support.

But then if you don’t encourage someone to get tested, isn’t that just prolonging the madness? Isn’t that somehow morally wrong? Doesn’t that go against the laws of Christianity, of love, of compassion, of hope, for goodness’ sake? All the while, never knowing how much of what you think comes from fear, how much of what you think comes from reality/what really could happen, and how do you ever distinguish between the two?

So what is your role! I’m not even close to figuring out what Jesus would do in this situation (I know, how do we ever know really, but. . . .) because I can’t even figure out what truth is anymore.

Isn’t that sad? You’d think you’d be more sure, but I’m not. Do we prolong life? At what cost? And for what purpose? Is it so that we can feel okay, so that we can feel like we’re relevant, keep our peace of mind? Or is it because life is precious, and it’s our job as fellow human beings to help others preserve it?

And again at what cost? How can I possibly know how the quality of life of someone living in this culture, in this way of thinking, with certain people, will be affected? And is it really my place to make that judgment call?

Then you start to realize that death is a part of life. In America, we don’t really like to think about that fact. (In fact, if anyone dies before the age of 65, everyone treats it like it’s a great tragedy. I’m not diminishing the sorrow of death at any age, but it’s just so different over here and in other parts of the world.) In America, we value preserving life. We’ll spend millions of dollars on cancer research, on all kinds of treatment, which can often be quite painful and expensive and time-consuming for the patient—but we do it, because death should be pushed off, avoided at all costs.

Then if people in America decide they don’t want a certain treatment, that the right thing for them is to accept death, half the people freak out! So it just makes me wonder: When do you fight for life? And when do you accept that we will all face death sooner or later, and for some people, sooner is the only option that they can cope with?

I am in no way saying that we should just let people die, or that we should just stop fighting disease, or throw up our hands in the air and say, "I give up." I’m just asking the question, trying to figure out how someone can offer something healing amid all of this.

I still think that, ultimately, getting tested, knowing one’s status, seeking the truth, is the right road. But that has to be the decision of those people involved; that can’t be my decision for others. At this point, I don’t feel it’s right for me to force my belief system and everything that comes with that on someone who has to deal with what could be a lifetime of consequences.

And after all of this, I can’t help but ask myself, Will I ever be okay again after I leave this place? Will I ever have peace of mind again? Because I just keep thinking and thinking about these people that I have come to love so deeply, and I don’t know what’s going to happen to them. It would be more manageable if it was just one person, but it’s so many of those that I see every day.

Of some, I think, My gosh, they just don’t know what they’re doing, they don’t understand that the way they’re dealing with the situation will ultimately only bring them more pain. And I can see this because I’m an outsider, but I can’t say anything, and I just have to watch, knowing what the future will most likely hold.

In relation to others I think, How will I ever be able to leave you? You have given me so much, you have become such a part of me, we have shared so much together, and how can I go back to a place where you’re not? What will happen to you? If death comes, will you be scared? Will you feel alone? Will you have dignity at the end? Will the people you leave behind be able to make sense of it all? Will I ever see you again? One of the people here I’ve become close to said to me, "I always ask myself, when will I see her again? How long will it be? Will it be in this life, or will I have to wait until we get to heaven?"

—Katelyn I. King is serving in Africa with the Mennonite Central Committee SALT (Serving and Learning Together) Program.