October 16, 2003
Facing the realities of AIDS in Africa
During my first week of work at Vivre Mieux I met with my first “client” for my first “counseling session”. What a thrill to be finally doing work that I love and have dreamt of. Flora is a woman whose husband died of AIDS two years ago this month. She is also infected with the HIV virus. We spoke generally of her knowledge and understanding of the transmission of the virus and the progression of the disease, and more specifically about the issues faced by women living with HIV.

After reviewing her health and social status, she began asking me questions, and her real concerns came to the fore. She lived with a man for fourteen years, yet never bore any children. Her dream is to have children. She was in a relationship with a lover which she hoped would lead to marriage; instead, betrayal, pain, illness, and death were the result. She said that she had never been with anyone other than this man. She was faithful; so how is it that she has HIV? Now that she too is infected, she fears that her dreams to marry and have babies are over. ‘And what else is there to live for?’ she asks me. I explained to her that a positive test result is not a death sentence. People can live for years before manifesting any major decreases in immune function. Looking back, I feel like these are words rehearsed by HIV counselors everywhere. Indeed, they are a protection I hide behind so as not to open myself fully to the extent of her burden and grief.

Her case reminded me that the first line of defense is the mind; and these people desperately need support, not only medically, but emotionally, socially, psychologically, and spiritually. When I asked her what type of support she had in her life, her story told me that she is alone in facing this illness. Her family does not believe that she is seropositive because she looks healthy and strong. Furthermore, they never approved of her partner in the first place, saying that he was a “voyou” (a troublemaker); so their attitude seems to be “you got yourself into this, now fend for yourself”. The family of the man who died wants nothing to do with her. Thus, neither group will help her pay for medicine, vitamins, or healthy food.

Such ignorance and discrimination is especially pertinent when the person living with HIV begins to experience a lack of energy and opportunistic infections which limit their ability to sustain themselves economically. In developing countries, the challenge of living with HIV is magnified. With limited access to medications to treat secondary infections (brought on by the decreased immune function of the individual), and almost no access to anti-retroviral therapies, the main line of defense becomes nutrition, sanitation, and psychological well being. However, as poverty enters the picture, access to even these basic resources is limited. Compound this with alienation by family and community members, and the picture is bleak.

Hope

When I told her that she could still live a ‘normal’, active, healthy life, and have a partner, her eyes filled with hope. To dare to hope… And how quickly the hopelessness seeps in: ‘But what man will ever want me?’ she asked. ‘I’m tainted and spoiled now. No man wants to die.’ I explained to her that logistically, with the proper use of condoms, she could have a healthy sex life. At the same time, I acknowledged that it will take a special, strong, loving man to be open to learn about the illness and the precautions necessary, and to look past the stigmatizations of the disease to the courageous woman in front of him. Regardless of whether she finds that man, she can still have joy in her life. She can live in the face of death.

Passionate fury

Flora is a woman with passion. She is angry with the way she is being treated. She sees that it is unfair that those around her judge her for having her illness; meanwhile, she was faithful and it was her lover who transmitted the virus. She is asking for support. She is brave and willing to speak aloud about her illness and her experience, in order that other people living with HIV may know that they are not alone. She wants to find a sense of purpose in the face of AIDS. She is a woman who does not want to give up.

I realized that friendship is really all this work is about: connection, concern, caring, and empowerment. These are words that excite me. This is when I know I am in the right place

October 20, 2003
When will we ‘get it’?

My eyes are being opened to the realities around AIDS in Africa. According to UNAIDS estimates for Togo, 4% of sexually active adults, and 5.98% of the general population, are infected with HIV/AIDS. Between 1987 and 2000, the number of new cases of infection rose to 12 512. The majority of new cases are transmitted heterosexually. Additionally, the number of AIDS orphans in Togo is estimated to be approximately 25 000 children.

Although this is not as high as some African countries, it is disconcerting. Due to the lack of any efficient health care infrastructure (especially in the remote areas), these statistics are likely not very representative of the extent of the pandemic in Togo. Also, there are so many cultural barriers that keep people from seeking medical treatment, from limiting high-risk sexual behaviour and accepting a “prevention mentality” with regards to sexually transmitted infections. What really gets me, is that so many people here know of someone who is living with HIV/AIDS or has died of it. It’s strange and frustrating for me: how many people have to die before people will understand what’s really going on?

A real life example

On a bus from Lomé to Kpalimé (where I live and work), a man beside me struck up a conversation. He is a teacher at a Lycée (highschool) in a nearby town. His name is Fréderic. He’s also a “tradithérapeut”. He’s very knowledgeable about alternative therapies, natural nutrition, organic foods, etc. He grows his own organic aloe-vera and sells it throughout the country.

He began asking me questions with regards to HIV. What surprised me was that even a well-educated man like him was still rather ignorant of many of the facts surrounding the virus. He wondered if people could take his aloe vera product to prevent the transmission of the HIV virus, instead of using condoms. Swallowing my surprise at his comment, I told him that all over the world scientists (and others) are searching for a vaccine or a cure. (Basically, if they had found it in aloe vera, everyone would know about it by now.) I said that the only thing that prevents the spread of the virus are healthy, responsible changes in behaviour towards safer sex, universal precautions, safe drug/needle use, cautions around mother to child transmission, etc.

The safety of ignorance

Fréderic then told me that his brother’s wife recently died of AIDS. I asked him if his brother had been tested. He said no. I was surprised (yet not shocked; avoiding HIV tests is common here). The brother didn’t want to get tested, because if he found out he was seropositive, then he would worry about the illness, and ultimately it would be the psychological stress that would kill him. I agree that there may be psychoneuroimmunological factors involved in the progression of the disease. However, that concern is much different than basic denial. This man’s own wife died of AIDS. He wants to go on living his life, without worrying about the virus, thinking that he’ll live longer if he just doesn’t know if he has it or not. Although I do empathize with the fear people have around the disease, I cannot support ignorance, especially if it is putting the lives of others at risk. If this man’s brother goes ahead and has new sexual partners or a new wife, and chooses to remain ignorant of his sero-status, he is showing that he is willing to sacrifice the health and lives of others in order to maintain his own peace of mind!

Struggling to understand

I realize that humans do this; I do this. Perhaps in my life it is not so blatant or so literal that I actually place another person’s physical well-being at risk. However, there are times when my own actions and words are sharp and destructive. Sometimes it is hard for me to look upon people like this man who view ignorance as an acceptable alternative to taking responsibility for their actions. I feel anger and I pass judgement on them, thinking: “No wonder this continent is in such shambles if this is the mentality people are working with. Nothing will improve with these cultural attitudes”. In this patriarchal society, I think of the numerous women men like him may sleep with, ignoring the importance of safer sex, thus placing these women at risk simply because they were too weak to face the consequences of their actions. In these moments it is hard for me to remember that these are men who are frightened.

I begin to see why I’m drawn to the work of empowering women. It’s an attempt to protect women – to protect myself – from men. So, if I still feel the need to protect myself, that must mean that I am still vulnerable; and vulnerability is not power. Hence, I must still doubt my own power since I feel the need to fight for it. So I am faced with yet another one of my prejudices: that these women, these people are victims. This would mean that they are weak and incapable of overcoming challenges. On a larger scale, this leads to the attitude that “we” (the North) are “better than” them and they will never reach the level of development that we have.

These are important issues, especially in the field of AIDS prevention in Africa, because although we can ‘empower’ women, men also have a role. It serves no one to view women as victims. It serves no one to view men as tyrants. It serves no one to view Africa as a victim of the rest of the world order. It serves no one to view the AIDS pandemic and the poverty in the developing world as a hopeless cause.

Thus, I am left with more questions: How can I see and do this differently??
How do I own my own power, stand for my own power while standing for the power and empowerment of everyone – men and women everywhere?

***I see how I’m moving back and forth between the macro and micro, the intergroup and interpersonal to the intrapersonal, between the issues in the world ‘out there’ and the workings of my ‘inner world’. This helps me to see that everything is connected. “there is no place where my mind stops and your mind starts”(Marianne Williamson).

Pop-culture philosophy

So, here I am with many more questions than answers.
On the flight from Paris to Lomé, I watched the “Matrix – Reloaded”. The scene that stuck out for me was when Neo met with the Oracle. He asked her why he was there with her. She replied that he already made the choice to be there; now he came to try and find out the reason why he made that choice.
That’s how I feel here in Africa…

To be continued… back to top

October 22, 2003

Men and women: where is the love?

Now that I’m working in the field of HIV/AIDS prevention, I find it surprising that I have never knowingly met anyone with the virus. This afternoon I met with a couple, Eric and Ann, who are symptomatic, and perhaps could be diagnosed as having AIDS (which means the HIV virus has lowered the immune system enough to cause secondary illnesses). It was hard for me to see their frailty, pain, fear, and confusion. Guy found this couple through another patient of his – a woman who was pregnant and seropositive. Guy asked her who her partner was, and thus found Eric. This first woman died of AIDS, as did her infant. Eric is now symptomatic, as is his second wife Ann.

This is a clear example of one large problem in the propagation of the virus in Togo, where polygamy is still practiced. Furthermore, to highlight some of the issues women face here, Eric sees Ann as a burden to him: he does not want to pay for her food or medicine. Meanwhile, Eric was a medium for the transmission of the virus. Additionally, he has already seen one wife die of the disease. Yet, due to the mentality that “a wife is replaceable”, a man like Eric sees no need to limit his own access to medical care and nutrition in order to care for his wife who is equally frail and in need of medical attention. To put it bluntly, if this second wife dies, Eric can marry again. And in the meantime, what good is a wife who is too weak to cook and clean?

Cultural Factors Influencing HIV Transmission

* This brings me to some important (and, from a Canadian perspective, surprising) cultural values that play an important role in the transmission of HIV in Africa. These are generalizations, and beliefs, customs, values, and traditions vary by region, tribe, and country:

• In certain regions, it is believed that if a girl begins to menstruate, yet dies before losing her virginity, she will not enter Heaven.
• It is believed that if a girl reaches 19 years and is still a virgin, she will be a bad mother.
• A boy/man who does not have sexual relations every day (or very often) is not considered a “real man”.
• Another way a man proves his manhood and virility is by having many/several sexual partners. (This is in line with the polygamy that is still practiced here in Togo. Through the influence of colonialism and missionary churches, official polygamy is less common today; however, unofficially, it is still practiced in the sense that many men have other sexual partners outside of their marital union. Furthermore, this is not frowned upon. Even women accept this as the way men are – it is normal that men would be ‘incapable’ of remaining faithful/monogamous.)

*I was made aware of these cultural factors during an 8 day training workshop for front line workers put on by CEFA (Centre des etudes de la famille Africaine) in Lomé, Togo.

Where is our common bond?

It is in situations like this where all I see are the differences. I see how “we” in Canada, in the West, the North, are different from “them” in Togo, in Africa, in the South, in the poor developing countries. When all I see is differences, I am separating myself from the people here. I am putting them into a box, with all kinds of labels that explain “who they are”. However, when I am so certain about “who I think they are”, I feel incapable of connecting with these local people because I feel so different from them. At these moments I believe that we have nothing in common; that I will never understand their way of thinking and behaving, nor their attitudes or opinions or views. There are times when I feel like there is just so much that I don’t understand, and perhaps never will. This can be so overwhelming that I don’t even know what questions to ask. I just feel completely separate. I am full of judgements. I am ethnocentric.

“Only what you are not giving can be lacking in any situation” (ACIM).

And then something happens. A person on the street smiles and welcomes me. A Togolese friend offers me support. A person living with HIV tells me their story and I see their courage in the face of hardship and fear. I pass the street vendors sitting under the hot African sun and I see resilience. A little girl helps me find a moto-taxi in order to get home quickly before the daily rain hits, and I remember kindness. My Togolese friend Richard gives money to his client with HIV and I see true generosity.

It’s good to remember.

back to top

The man behind the diagnosis

Today I learned more of ‘who is this man Eric?’. I saw past my judgements on his polygamous practices and how they played a role in spreading HIV, thus endangering himself and two women, and seriously affecting the futures of his eight children.

After three weeks since my initial meeting with Eric, with no subsequent contact, he returned to my office, having read some literature explaining HIV/AIDS. Even after having lived knowingly with the virus for two years, having lost one wife to AIDS, and having experienced symptoms and opportunistic infections for the past year, he told me that now he realizes that AIDS is real. He told me: “Je commence maintenant à craindre pour ma vie” – I’m now beginning to fear for my life.

Anger = Passion

In realizing the reality and gravity of HIV in his own personal experience, he passionately argued that this information must be given to each and every student in Togo. The youth must not make the same mistakes he did. They have to know this so that they do not suffer the same fate. He said that at the very least, he must share this with his children. If they do not accept it, that is their choice; but he feels compelled to inform them.

This is the same passion and anger that I witness in Flora. This is the energy that provides momentum, purpose, une raison d’être. I knew at this moment that I can work with Eric. He is open and realizes that there can be another way; others can avoid the same fate.

Dreams of a big life

Eric is a person like all of us, who has tried to improve his lot in life. Following his social and cultural upbringing, he adopted a way of life that promised to bring acceptance, success, prosperity, and happiness. In his social setting, this included taking two wives that would give him a multitude of children – for it is said that a man can have many riches, but without children, he is nothing.

For the past twenty-two years, he and his wife Ann developed and ran a successful enterprise in agriculture. Two years ago, in an effort to further benefit from his profits, he invested in a car which could be used as a taxi. He allowed his nephew to run the taxi business. However, fifteen days after beginning, the nephew was in a serious accident. Furthermore, he had taken too many passengers, so the accident resulted in one death and many others with serious injuries. The result was that Eric no longer had a taxi, and he had to pay for the care of those injured, as well as the costs to the family of the person who was killed.

Hence, Eric lost his investment and most of his savings. Seeking a way to regain some of his financial losses, he sought out work in France in the agricultural sector. This required a further investment of cash for Visas and other formalities. He was offered the position, which was financially profitable. However, it was at this time that he began to experience the symptoms of fatigue and secondary infections due to HIV. Currently, due to his declining health, he has no way of gaining an income. He and Ann have left their village, and their agricultural work in their fields, and moved to Kpalimé where they are closer to medical treatment. The reality is that they have less and less money to pay for the additional medications required as their illnesses progress. They worry about how to feed their children. They are away from the support of their family and community.

So much more than a body or an illness

Although theoretically I understand the mind-body connection, and the importance of a positive outlook in the face of illness, I am seeing first hand the ‘psychoneuroimmunology’ of HIV. This illness (and perhaps all illness) is much more than just a set of physical symptoms. Symptom outbreaks are so related to state of mind; state of mind is related to energy level and motivation, which in turn affects one’s ability to work; work is interlinked with socio-economic status; social status, and the degree of discriminatory attitudes around HIV, affects the type of support and acceptance the individual receives from family and community; poverty is linked to access to proper nutrition and adequate medical care; and nutrition and access to treatment affect the presence and severity of physical symptoms. Furthermore, this cycle creates a cycle of stress that lowers immune function, thus exacerbating how one copes with all of the above factors. Hence, it is clear to me that psycho-social support (at the very least) for people living with HIV/AIDS is crucial.

What is important in all of this?

Eric and Ann rent a room in a compound, about five minutes from where I work. I regularly visit with them and their five children (three other children live back in the village). They all sleep on the floor. At one point I saw they had a double mattress; last time I visited, there were just some sheets on the cement floor. They have a wooden couch frame with two foam pillows, and a wooden chair. Their eighteen year old daughter Amen runs the household of young children and sick parents, goes to school (she is doing Première Science – a very challenging program with a very difficult exam at the end of the year), and is active in her local church. I have seen her many times with hard, emotionless eyes.

Both Eric and Ann have lost a great deal of weight, and are currently dealing with ongoing opportunistic infections related to HIV. Often, Eric does not have the money to pay for medications, even though my director sells certain drugs at a lower cost than the pharmacies. Eric is trying a herbal remedy from a traditional therapist. As far as I know, he is not considering sharing it with his wife.

In the midst of this struggle, I have witnessed joy and hope, family and connection, support and concern. Amen’s older sister Akpéné came down from their house in their mountain village. She stayed for two weeks. I saw Amen with a light in her eyes I had never seen before. Visiting the family at the house, Ann was glowing, Eric was proud, and the little ones were thrilled. It was amazing how the presence of this one young woman could bring so much light to the entire situation. Everything felt lighter at their house that week, as though a heavy burden had been lifted. This lovely twenty-one year old reminded me of the power of that very human inclination of looking towards the future with hope.