Let’s Talk About Sex, Baby

It is amazing how sex is a relatively taboo topic among PLWHA ( or at least seems to be). Considering that a majority of us acquired the disease through sexual intercourse one would only hope that there would be a little less mental restriction on the subject, but in Nigeria? No way! Even pregnant women are expected to act like virgins here.

Sex is a very important part of the lives of people in this country, both those living with HIV/AIDS and those who are not. It is because of sex that many people refuse to either disclose their status or just refuse to get tested. Naturally, the other peripheral issues pop up like ‘can the illness be treated‘ , ‘will I die from it‘, etc,which are generally already answered by treatment and care, but the main question ‘will I be able to maintain my current lifestyle‘, is not. Lifestyle in this sense really means a carefree, vibrant, sexual life which is usually not a looming possibility when those three letters are confirmed in one’s life. Or maybe I should qualify that; carefree, vibrant sex is not a possibility when a woman is confirmed HIV positive. I will explain.

Before I realised what / who I was as an adult, I was very aware of my sexuality. As a matter of fact, my sexuality was the one thing I knew how to manipulate. The reason for this was the sexual abuse I endured as a child and which I have spoken of in earlier posts. Before I understood its intricacies I had sex because I felt it was the thing to do; I would lie there, silent and quiet so my boyfriend would be happy and like me. I would sometimes cry afterwards-or pretend to-just to indicate/ascertain that I still had a lot of virtue left in me regardless of my knowledge of this act.

When I became more aware, I had sex in exchange for- or as a sign of- love. A barely-existent self esteem ensured that I was always looking for love (read:self-acceptance) in the arms of my lovers, and confusing lust for it. So offering or accepting to have sex was my way of securing that ‘love’, and I learnt to be very good at it, to keep them interested. (It is funny because in retrospect, those are men I would not even give the time of day at this point in time.) Eventually, sex became a very important tool in my relationships to maintain the interest of the partner at that point in time. Which is funny because

In all that time, never once did I have sex because I wanted to, at my own volition, or on my own schedule.

And this is the crux of the matter: Nigerian women (generally) rarely, if ever negotiate sex.

My evolution to overt sexuality, dramatic as it seems, will not be very different from that of the average Nigerian girl. Granted it may not follow the same trajectory and/or lead to the same open-endedness but be assured it usually begins the same way; sexual abuse in childhood that leaves her vulnerable to other partners and searching for answers in, through and with sex. More often than not. Add that to the fact that she is brought up conditioned to satisfy a man’s needs and you have a serious issue on your hands.

My point is that unless women start speaking up for their rights things will never change. And these rights include the right to negotiate and initiate sex. Think about it, a man who is diagnosed HIV+ can still score a wild night of sex with a  strange,smitten girl, no questions asked, primarily because girls are not encouraged to ask questions or to say no. But what is the likelihood that a woman just walks in on a stranger and successfully encourages him to ditch the condom for that night? Many ladies will tell you that they usually have sex despite their misgivings, even when all they wanted was to just talk or cuddle. According to the law, can a man rape his own wife in Nigeria? I don’t think so.How many women carry condoms just in case?  And how many women can go to see their boyfriends and successfully get away with not having sex, if they are not in the mood for it? How many actually even know that they can say ‘no, not today’. Otherwise strong, powerful women become weaklings incapable of determining their reproductive health because of conditioning.

I have a very strong interest in the nuances that lead up to a woman being diagnosed HIV+ in Nigeria. I feel that if we change the conversations we can have less women living with or being vulnerable to the disease. Nigeria is experiencing one of the fastest growing epidemics of HIV/ AIDS in Africa, believe it or not. Unfortunately a large percentage of these people are women. Women empowerment is not just providing women with a source of income and the voice to stand up to an abusive partner. It is also about encouraging young girls to love and respect themselves, and hold their bodies in high esteem. This is not to say, in anyway that only men enjoy sex, but it is to say that the idea to have sex should be a personal, safe decision; as easy as choosing condoms over the morning after pill. I mean forget the morality of it, casual sex or no, your conversations about it should begin with questions about sexual health and in an ideal world be as aware as this article recommends.

Discovering my status was devastating for my identity and I can see now how many ways I fought to pretend to myself that things had not changed. I had learned to wrap myself and my worth around this sexuality and being HIV+ meant that I would have nothing, be nothing. Even less than nothing; I would be avoided and loathed. And even if they do not , you see yourself in the light of sex, as a disease waiting to happen. It explains why a lot of women at the clinic have that oppressed, resigned air and look. If they had children before the diagnosis then their lives are over as far as love is concerned. If not they seek companionship from a pool of equally flawed candidates; men living with the disease as well. Chemistry is not an option except it has to do with the components of ARVs. And God knows what other compromises they have to make sex-wise: don’t do this, only do that. These are the choices that face us, that or risk being insulted over and over when you meet other people and tell them the truth.

But it doesn’t have to be that way for every woman. And it begins with the girls.

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Aaaaand Scene

I’m back.

• The storm is over.
• The cloud has lifted.
• I am going to fight again.

You already knew this was coming didn’t you?

I am giving life another shot. I have to; I’m here aren’t I? For some reason the cloud lifted today and I became excited again about all the things I am dreaming about. And just like these things happen, the first post I read was about the power of positive confessions.

My daughter called me this evening. This is rare because she never calls or even agrees to have a conversation of more than 2 seconds on the phone. She regaled me with her latest discovery including the fact that one of her teeth had fallen out. I asked her to take a picture.

But you’re not here, she complained. Yes, I will see it when I come , I answered. How long will you come back, she asked, (meaning how soon I would return). Very soon, I said. What are you even doing in that Lagos? I said that was a question even I had problems answering but that I was trying to make money. And when you make money you will come back? Yes. Okay, buy many things and everything for me,  because I love you. I said ok but she repeated ‘because I love you’. I said I loved her too.

But I heard that conversation differently. It was not just my 5 year old telling me she missed me, it was my purpose nudging me to carry on. There is something, someone to live for, to be successful for. Ignore the present situation and keep walking. Things will happen.

I thank God for every misstep and wrong decision that led me to having that child, to bringing me where I am.I think I have mourned who I could have been enough. Now it is time to live out who I can be.

The Battle Is Not For Our Bodies, It Is For Our Minds

Joie

Without Missing A Beat

My lips turned black today. I say today because it only showed up today but it began on Monday to be honest.

After the verdict from the hospital, I went on a death-by-junk diet. And knowing what my financial situation is like, junk food comprised cheap biscuits (cookies) and coca cola. Imagine living on that all week – actually more than a week. I figured I would not put on any weight since the bloody thing seems to be reducing by itself and that I am already at risk for falling really ill so ‘what tha heck’. Then this morning my neighbour’s daughter exclaimed that my lips were black! I went to look in the mirror and truly that is what they were/are.

I admit I was a bit frightened at this discovery – this rapture was happening faster than I anticipated- so I went to google black, chapped lips in relation to HIV and came up with nothing. But it yielded many results for dehydration and reaction to the benzoic acid in sodas when consumed in large amounts. And add that to my coloured natural hair which in twists look like fat dreads and I could very well be mistaken for Fela’s offspring. Or at the very least, hisprotege.

I intend to take care of myself eventually, so I will cut out the sodas for now. I understand now that my lowered immunity is not some failure on my part but as a result of the malaria I suffered in December that almost wiped me out. And there were a few signs that I had become weak but I ignored them or tried to overcome them.

I have been watching the series Breaking Bad. (Yes I am one of those people who waits years until the noise has died down before I see a movie.) It is quite gripping, and I am inspired by Walter White, not because he keeps giving life a shot despite the issues- I see that cliche in everything- but because he really has gone past the point where he gives a shit. I want to get there. I am though, very gradually…

S**t Just Got Real : LUTH Chronicles, April 2015

(Long Post Alert)

It was supposed to be a normal day in the life of HIV positive Joie. Hospital day, I would leave home by 5.30, wait 3 hours to see a disillusioned, disinterested doctor who would ask me routine questions and give me the date for my next visit,  usually 3 months after this one.

If there was any inkling that my day would be somewhat different from the regular hospital visits i was used to, it would have been in the fact that my taxi guy came late even though I called him a little over 20 minutes before. I was enraged because I hate to be late to the hospital. The number of people that are there by 5am is unbelievable and I just want to go in and leave as quickly as possible, to make the process as painless as I can.

Anyway, I arrived there a few tens of minutes shy of 7 am and proceeded to wait as we usually do. I noticed though that I was uncontrollably sleepy, something that never happens to me. I was a bit bothered about it  wondering if it was due to my inactivity in the past few weeks.( I sustained an ankle injury while running and continued working out with it until it became unbearable so for the past few weeks I have had to avoid putting any pressure on that leg.) One of the goals I had set for myself mentally was to be at least 4kg lighter than my last weigh-in at the hospital. I had fallen really ill the month before my last visit and I lost a lot of weight so I wanted to maintain and even improve on that.  But I had not really put my mind to it as I was eating practically indiscriminately, so I was also scared that added weight might be causing my general lethargy.

They started off really late at the clinic; around 9 am. Maybe there was another doctors’ strike, maybe because there was a power cut – and we all know they do not work if there is no power, even if it is clear as day- or maybe because they felt like. I don’t know, only Jesus can tell.  We were ushered in to be weighed by a polite, young gentleman. He referred to the patients as ‘Mummy’, ‘Daddy’, ‘Aunty’ and ‘Uncle’ out of respect. I  caught myself wondering when he would be taught the ropes and become rude to everyone.  I was quite surprised when I stepped on the scale, to discover I had lost another 3kg. I did not doubt the scales because my previously snug, now slightly loose, clothes had given an indication, but I was taken aback since, based on my diet and exercise the few weeks before, I had little reason to lose weight.

The kind, elderly matron, who seems to have taken a liking to me, took my case note out of the pile and dropped it on the table of a doctor . This doctor is probably the nicest and most thorough in the clinic but that is not saying much considering the competition is minimal. My being attended to by her proved to be a curse and a blessing on the long run.  As I waited. I observed quite a few people in very chronic stages of the infection being helped around, ostensibly by relatives. These people, were in the stage referred to as ‘wasting’, they had experienced extreme weight loss, they looked pale and gaunt, and seemed too weak to move without aid, or even to speak loudly. I wondered which of them had become like this because they had to wait for drugs or because they were in denial. There was a particular gentleman who was very tall and light-skinned. In his days of health, he probably would have been seen as attractive to women who liked fair complexioned men. He had a tattoo on his arm. I began to wonder if he had been a ‘playboy’ if he caught it through promiscuity. Can you imagine? I, who am in the same shoes was attempting to judge him?!!

I had to wait quite a while to see the doctor as there were several people ahead of me, and I wondered if the Matron had actually done me a favour, especially because  I saw the other people I had been in the queue with, being attended to quickly. Finally it was my turn, however. The doctor opened my case note and began to tick off the routine things they always do, then reminded me that on my next visit would be for the routine blood testing. The reminder was because these tests now have to be paid for by the patients. I then asked her what the results of my last test were. She checked her computer, then smiled in a weird way and said the last words I ever wanted to hear ‘ you are now eligible for drugs’. Apparently my CD4 count had dropped considerably so I was now at risk of wasting eventually. Ironic isn’t it. I was now a bonafide PLWHA.  I felt like I had been given a death sentence. All I was thinking was ‘hell no!. Not today’. The doctor then asked ‘ are you ready?’. I wondered what for. What was the procedure? Would I be required to pay? I needed some sort of guidance into the next step and this was where it got… interesting.

I asked the doctor how I was supposed to be ready. Mentally? She said yes. If I was ready she would send me to the counselor, and when I was done there I would come back to her, and she would write  me a prescription for drugs which I would go and queue for, then I would go home and come back to see her in 2 weeks. I told her it was the ‘long story’ that would put me off but I really needed her to explain why I needed to be ready. What exactly about prescriptions required that  I prepare my mind, what prescriptions she would write for me, etc. But I felt under pressure to make a decision, like I was wasting her time. So I told her I was not. Not ready, not today. She said it was fine and then asked me if I wanted my appointment at the regular  time (3 months interval). I asked her what she advised. Again, she said it was up to me.  I was perplexed. There I was deeply troubled and confused and this doctor was just treating it like it was not her concern.  I asked that I see the counselor regardless. I needed to understand a few things and even though I had a little more than an inkling of what the drug regimen would involve, I wanted someone to assuage my fears and provide clarity. The doctor filled out a counseling form for me to take along to the session.

To appreciate my anxiety, one must understand the  treatment process for HIV/ AIDS. The drugs given to PLWHA are called Anti- Retro Virals (ARVs). These drugs are EXTREMELY TOXIC  and so have to be prescribed in a specific manner and taken RELIGIOUSLY at the same time everyday for the rest of your life.  If one deviates from the routine of taking it it can render the drug ineffective, cause the virus to multiply and require that the person be put on a second regimen. There used to be 3 different  regimen ( or lines ) of treatment, which were administered to the patient, in succession, if the previous one failed. (It is a regimen because ARVs are never one drug only, they are a combination of a few drugs.) If the 3rd line fails then there is literally no hope for the patient. The expected outcome of the treatment whether 1st, 2nd or 3rd line treatment is that the patient’s viral load reduces drastically and the CD4 count increases. CD4 does not increase in impressive amounts so it is really the viral load that one needs to be concerned with. However, since 2009, the LUTH centre has not conducted any viral load tests for me and many of us. I was told in 2013 that, when the clinic got burnt in 2010,  the reagents – chemicals used in the lab- for that test was destroyed. As a result, when they rebuilt they had a backlog of viral tests to run and stopped accepting any new cases. The implications of this are obvious: how do you really tell that the drugs are working?

Also, the toxicity of the drugs were a cause for concern for me. ARVs are very toxic to the system and can cause a lot of issues in the body when taken. These issues include rashes, nausea and vomiting, diarrhea, higher risks of cholesterol and hypertension issues at the very least, to more serious issues like psychiatric disorders (hallucinations and so on), internal bleeding, issues with the nerves, kidney ailments, inordinate distribution of fat in strange areas in the body, and so on and so forth. While some of these side effects show up immediately and balance out, some do not show up until years after.  Another reason for my concern was that I had been given some ARVs -albeit wrongly– both of which seem to be regularly prescribed for patients. I wanted to know if that mistake meant I had developed a resistance to those drugs. I also wanted to relate to the doctor my reactions to the drug at that time.

My third cause for concern was – or is rather- finance and timing. It would seem that with this development I have to be at that dreadful clinic as frequently as every month; I cannot describe how much I  dread, loathe and fear that. If the inconvenience was the only problem it would not be an issue but that frequency of visit also requires money. There are monthly tests that need to be done to check organ functions especially the liver, and under this new FG scheme patients pay for these tests. All these in addition to the transport fare to and from the clinic. And then the dietary requirements as people on ARVs are meant to eat heavily and very nutritiously. Anyone who knows this blog knows my struggles with making up my cab fare not to talk of making ends meet…

I was happy to see that there were just a few people waiting for the counselor. I sat down to wait with the hope that I could express my fears to her and that she would listen and provide me with clarifying responses. After waiting for about 30 minutes, the other two gentlemen who were with me went in one after the other but quickly came back out. She had told them to wait. I was told by the more elderly of the two that there was a patient in there but that I should at least look in and tell them hat I wanted. I knocked and popped my head round the door. In the cramped room, there were two ladies sitting at desks opposite each other, and in between those desks sat two men on a bench. One of the men was the light-skinned guy I spoke of earlier, and the other – I imagine- was his assistant/relative. I said hello and the other lady who I did not know told me to ‘just go and wait outside’ without asking me what I wanted or telling me who/what I was waiting for. Thus began a number of hours of waiting. During this time, the patient had left the room and the two ladies were heard conversing and cackling loudly. At some point the counselor I knew actually left the room with a visitor and came back a while after. She left again alone and was seen exchanging anecdotes with the doctors. The elderly man asked her what we were waiting for and she said she was ‘coming. She did this several times. Finally the other unknown lady left the office. As she was leaving the elderly man again reminded her that we were waiting. She said we should wait because she was not the person to do the counseling. She went further and said the counselor wanted a lot of people to gather so she could give us a class. It didn’t matter that  we were just 3 there, or that we had been waiting for hours or that the other people we were waiting for had not yet seen the doctor or done their vitals or anything. The counselor was tired of talking, period.

I noticed the elderly man had a prescription form and I began a discussion with him. He was sent to the counselor because he had stopped coming to the hospital for about 7 months and in turn stopped taking his drugs. The whole monthly thing was tiresome to him, he complained. I asked what taking the drugs felt like. he said he had never seen anything like that. There was a particular drug he was told to take only at night and, whenever he took that drug he would begin to see things; people who had died a long time ago, spirits and ghosts. He said the whole situation was very frightening for him so he bought a blood tonic and took that as he took the medicine and gradually the visions disappeared.

I had heard enough. I decided that it would actually be better to go home and google this issue than sit endlessly waiting for someone who had no time for me, anyway. I left the hospital but as I went I could not help wondering how much time I had left.

But now, I am worried and very scared…

 

 

 

 

Dreams, Hopes, Plans and Life

A few weeks ago, someone challenged me to dream about the woman I wanted to be. It did not seem like much of a challenge because I felt the answer was obvious: I want(ed) to be a rich, healthy woman. Simple! But it was not going to be that easy . Or that short. I had to dream about her according to specific guidelines: what she would wear, eat, watch, read, do, etc. I had to actively imagine these things in detail! It has been six weeks and I am still working on the document, not because I cannot dream, but because for a long time, I would not dream. Why? Because I had become afraid to.

I used to dream a lot. More like imagine. I lived for the things I could dream about and for many years I got out of bed in the morning because I hoped these dreams were real. I dreamt of travelling around the world, being swept off my feet by love, working at a high-flying, important job, relocating temporarily to some far-flung country, being relevant,being necessary, being happy, being adequate. I was able to glimpse the beginnings of the actualisation of a few of my dreams, I traveled, I did one or two exotic jobs, I was almost self-sufficient, almost happy…then life happened.

The dreams didn’t go instantly, they just down-sized. I stopped dreaming about touring the world and started hoping for just a single room in a house that I had rented myself not someone else’s as has been the case, dreams of a high-flying job were replaced by prayers for a source of income/ a means to put at least one meal in mine and my daughter’s belly, love was restricted to being relevant to my daughter, and feelings of adequacy just had to wait….My dreams became utilitarian, necessary only for survival, limited in scope and use, like those  bite-sized or travel-size packages manufacturers produced for expediency. It was with this mindset that I had been asked to dream.

I stumbled upon this post on Kitchen Butterfly’s blog  and, suddenly, something sad and unpleasant finally hit home. In 2009 at the onset of all my issues, I had to pack up my property and deposit them in a friend’s house . Those things stayed in that house for 3 years! Everything I had ever worked for was at the mercy of someone else, and/or going to waste. At the same time I spent the next 2-3 years living out of my suitcase, in different conditions. Naturally, I lost a lot of stuff when I finally came went to retrieve my property: some had been stolen, appropriated and/or damaged. This jarred me a lot more than I knew because, for the year I had a place of my own, a lot of my property was still in boxes- and there they are till today.   The post made me remember that I had never really turned any house into a home other than the one I was in before I got pregnant, and even that, not so much. It made me discover that I was afraid to unpack or make my living conditions comfortable, because deep down, I do not believe I will ever find stability, nor do I trust that I will not be unceremoniously uprooted from any place I call home. More importantly, it made me understand why I had been having difficulty dreaming: I had forgotten what was possible and I had lost faith in what was achievable. I was too scared to ‘unpack’ my aspirations once more.

So I began to force myself to acknowledge what I feared, to desire what I felt was impossible. I always wanted to relocate temporarily just to experience life and work outside the country,but while I thought the dream died because I definitely could not afford to fund it I realised that my concerns about being HIV positive killed it. This same reason was why I never allowed my my dreams drift towards going for international certification in my field. I was literally too frightened to write it down. Who was going to give a student visa (and temporary residency) to PLWHA?  And how would I know where to go for check ups (and treatment if necessary). Even as I write I am apprehensive about even thinking it a possibility. I had always wanted a nice-looking place, decorated in my own quirky way with the art I had managed to procure over the years. The art, my pictures, any decor I had, never made it out of the cartons due to all my upheavals and I just believed there would be never be any reason to change the situation. I remember wanting a romantic relationship when I was younger-I probably wanted to be someone’s wife I don’t even remember now-all that became buried under years of disappointment, abuse, dishonesty and finally HIV so much that I am embarrassed to admit that I, in all my brokenness, desire male companionship.

“Our deepest fear is not that we are inadequate. Our deepest fear is that we are powerful beyond measure. It is our light, not our darkness that most frightens us. We ask ourselves, Who am I to be brilliant, gorgeous, talented, fabulous? Actually, who are you not to be? You are a child of God.” 

A Return to Love, by Marianne Williamson.

 

So I have begun to dream again,to allow my mind drift unfettered by doubts, my imagination create as much magnificence it can muster. And gently, oh so gently, I have begun allowing myself take small steps that may help actualize these dreams. And the Universe, God, is stooping to meet me. And, for once in my life, I feel the stirrings of hope and faith.

There are some things I know for certain; my living with HIV, and everything else I have experienced, is  for a reason. I am here to give hope to a lot of people who feel trapped in this situation. And more than ever before I feel I am so close to making that happen.

Love, Light and Dreams

Joie!

LUTH Chronicles 2015 Edition

I have been mulling on the direction to take in writing this post because I am not angry and in need of a rant nor am I depressed and looking for an outlet. Actually I am in a very funny but good place right now. 

My first appointment for 2015 fell in January and I just couldn’t wait to get it out of the way so I could get on with more important things (you all know how I hate hospitals). As usual I left pretty early for the hospital all the while anticipating the needles that I was going to receive. It was my day for tests.

The hospital attendants were nicer than usual, primarily because it was the beginning of the year and they had not had time to gather up their frustrations and bring them to work. That said, there are two ladies who are so professional and nice. They are the nurses that take our vitals.  They are always pleasant and friendly and they sometimes giggle mischievously. There used to be one who had serious issues that she obviously could not conceal but she has been removed from there. These two newer ladies are a breath of fresh air in a sea of gloom. I was told I had lost 4 kilogrammes. Yaaay!

The morning was not devoid of drama, that would be so out of character. The matron who is usually calm and very level-headed was seen screaming at a patient. She later explained that the patient had self- medicated and was terribly ill and looking for a solution at the hospital even though that was  not her appointment day. (People are getting desperate.) And then my simple name was so mispronounced that I had no idea I had been called in until over an hour later.

This would be my first time having my blood drawn in the new dispensation, so I was not a little curious as to how the process would go. I was sent to another building to pay, by the doctor I was consulting. I arrived there to meet a man, alone in a room, who seemed like he had nothing to do. He quickly wrote my receipt and I left. Someone came in immediately after me, but other than her, there was no-one else. If that did not confirm my suspicions about the effect of a charge on the people’s willingness to be treated, the fact that there was no queue leading to the laboratory, did. Usually there would be several people waiting on a queue, and several others popping up in between, who stepped out for one thing or the other, waiting to have their blood drawn. This time, the waiting area was bare, and when I asked a lady if she was waiting to go into the lab, she told me to just go in. I went in and there were only two people ahead of me. I gave my blood and left.

As an aside, if not for anything, I have a vested interest in the elections that are supposed to occur this year, for reasons of improvement in healthcare in the country. If we continue like this HIV/AIDS will become a lifestyle epidemic and all the good work done to control it will be undone in just a year. People did not turn up to draw their blood for the test because they could not afford the requisite 5k naira. This just makes me sad.

Anyway I was happy to go home early and prepare for my future.

Watch this space

 

Happy New Year/ Thank You

Joie is back.

I want to thank everyone who took out time to console me with their comments and/or emails. You have time for an anonymous stranger who may or may not exist; I appreciate it. Thanks especially to my ride or die chick, Sykik, and the master of words, Owi. You both know what you did. God bless you.

It is funny but I came to myself when I read my new year’s post of last year. The answer was before me all the time and I did not see it. This is why I like to document my experiences, not for now but for the future and for posterity. As I read that post and remembered the benefits a renewed mindset brought me I also remembered various situations when things turned around unexpectedly and miraculously.In truth there is nothing God cannot do. I have also been listening to and watching people with inspirational stories and I learnt these few things:

1. You cannot give up. Do not close the chapter for yourself because God will not close it for you. Things can turn around in a split second. It is okay to cry and mourn but do not park your future at that spot. A lot of the time you need to be broken down to be built up.

2.Be anxious for nothing. This is a biblical quote which comes as an order for Christians for reasons best known to God, but for me it is the most sensible, healthy advice ever. It prevents hypertension, ans stress. Why worry when you have no control? Worrying has no effect on external objects

3. Believe. In whatever it is that anchors your faith. Or as Owi puts it, ‘reference your centre of gravity’. Several people over a couple of days pasted this same excerpt from the bible and I know when the universe is sending a subliminal message, so I took it to heart. The passage is Isaiah 40:27 – 31. It is a popular verse but the MSG translation – which coincidentally everyone was posting- spoke powerfully to me. It is reprinted below with the parts that spoke to me in bold

. Why would you ever complain, O Jacob,
    or, whine, Israel, saying,
“God has lost track of me.
    He doesn’t care what happens to me”?
Don’t you know anything? Haven’t you been listening?
God doesn’t come and go. God lasts.
    He’s Creator of all you can see or imagine.
He doesn’t get tired out, doesn’t pause to catch his breath.
    And he knows everything, inside and out.
He energizes those who get tired,
    gives fresh strength to dropouts.
For even young people tire and drop out,
    young folk in their prime stumble and fall.
But those who wait upon God get fresh strength.
    They spread their wings and soar like eagles,
They run and don’t get tired,
    they walk and don’t lag behind.

I saw a woman today with 8 children, 4 out of which are special needs kids. What is even more distressing is that they are all grown but still have to be taken care of like babies. Four grown kids that did not really grow, and 8 mouths to feed! Needless to say she and her husband were living in penury and had been for years.And I thought I had problems…

I am grateful to God that I gave birth to a healthy, active child, despite the numerous issues. I am grateful that I have a support network to take care of her. I am grateful that I am not impaired in any way and I can still go out and attempt to pursue my dreams. That, I am Joie.

So, for this year, I have some dreams and I will strive, work hard and pray hard to achieve them; that is my worship to God.

I want to move to my own house, not necessarily owned by me but at least paid for by me, for me. A nice, neat, well- constructed place in a serene neighbourhood, with light and water. At least to the extent that is possible in Nigeria.

I want to create (a) stream(s)of income from the ventures that I have identified as my passion. I want them to go beyond paper and planning and into reality and fruition.

I want to bring my daughter and mother on a holiday.

He’s Creator of all you can see or imagine.

So help me God.

I pray that you all have a great year of learning,of progress, of amazing achievements. Happy New Year

Joie

I Couldn’t Bother With A Title

I had intended  to write this post ages ago but I have been so crushed I just could not bring myself to. A few things have happened since then so this post will take up the randomness that I feel.

I need a new life.

I have never really minded having HIV , ever until now. Now I feel like there is really no point in life, in living. This feeling was brought on by a new announcement at  the HIV clinic in October. We no longer have foreign funding for treatment so we have to pay for treatment and checks. The amount might seem a token to a few but when you consider that it is the poor and indigent people that come for treatment at the centre then you see that we are really in trouble with this sickness in Nigeria. Mark my words, HIV will soon become a major problem in this country following this change.

As it is with all misfortune, this news about treatment has been followed by one or two other issues for me. I really do not have the strength to discuss my life on these pages but suffice it to say that this christmas is definitely the blackest ever for me and my family.  I have gone through what has been a terrible time for my family shortly after which I fell very ill. Now a few days after the illness I have been feeling like I am walking through a haze. Like I am experiencing life outside my body. I am half-expecting the  world to end or my own life to end because that is the only way I can express this strange feeling I have been experiencing. I feel no need or desire to eat, to do anything.I just feel like I am waiting … for the end.

If I sound strange and random it is primarily because I feel that way. I think my soul, my spirit is weary.

Merry Christmas and Happy New Year.

HIV In The Time of Ebola (LUTH Chronicles and Doctors’ Strike)

Almost as soon as it was decided by the doctor, it was one month and time for me to go for my checkup. I do not know any other time I was more reluctant to go to the clinic than this time. I had a lot of personal issues on my mind and the news of the Ebola vurus finding its way to Nigeria added to my apprehension about going to a hospital.
Ebola. That was one word Nigeria never believed would enter its vocabulary. And in terms of misfortune and ill luck, the country could have done without this epidemic. (As at today 7 people have been quarantined with 5 of them testing positive and one dead from the virus.) I imagine the general emotional atmosphere in the country can be summarized in feelings of helplessness, overwhelming fear and neglect. Kind of like how I felt when I was pregnant and assailed with a multitude of issues. There have been kidnappings, extra-judicial killings, massive corruption, Boko Haram/ terrorism, and now there is Ebola. A virus that has no known cure, is super-contagious and makes no distinction between caregiver and patient. Suddenly we are scrutinizing our neighbours, suspicious of every cough and irritated by every unguarded flick of the arm. The fear of Ebola is the beginning of antisocial behaviour.
I wasnt the only person worried about  infection by the Ebola virus, it seemed. At some point while we were sitting and waiting to be attended to, one woman half-jokingly remarked that she wanted the clinic to speed up the consultations to reduce our chances of being exposed to the Ebola virus. As if on cue little pockets of discussion about Ebola began all around the gathering. One group which involved a misinformed healthcare worker pondered on how doctors were always the first to be infected by any virus naming SARS and swine flu as examples. Another group was in agreement that HIV was a much better virus to contract. One woman right behind me was particularly informed, talking about  preventive measures and ‘shutting down’ a lady who had started on the ‘we reject it in Jesus name’ path by emphasising the need to prevent not pray.
Ignorance and denial are a major factor in the spread of disease in Nigeria. I know this for a fact, and have spoken about this severally, with reference to HIV. Ignorance allows people to unwittingly continue unhealthy practices that perpetuate the transmission of the illness and/or prevents them from seeking a proper medical solution to it. Denial is worse because in this case people are deliberately constituting a hazard to the health of others. And it is helped by over zealous religious and cultural practices. There are those who still go to churches to seek solution to their HIV+ status even though clinics exist. There are those who have not bothered to ever check their status but engage in high-risk behaviour. Then there are the ones who know their status, seek treatment but do nothing to protect their partners and loved ones. My fear now is if we have people like this with an illness as treatable as HIV will we not have this with Ebola? The incubation period is 3 weeks at most, is that not enough time for damage to be done? For the person to move inter-state before he/she is weakened by the disease? How many of his primary contacts would they have been able to trace then?

America tried a secret serum on its two citizens infected with the Ebola virus and they are said to be in stable condition. I hear Nigeria is requesting that trial drug and honestly I do not know if I want that request to be granted. If the country’s handling of the HIV APIN and PEPFAR schemes have been anything to go by -and they have- then for a long time people will be dying of Ebola even when the serum is available. Poor people. The serum will be super-expensive if sold, or if dispensed free in a controlled situation will only be available to the super rich, highly connected and healthcare staff. And leaving such critical life-saving decisions in the hands of the present crop of staff I meet at the clinic is not a happy prospect. I will explain.

When the Ebola- centred discussion was going on one lady made to go into the consultation rooms to get her vitals done but a member of staff stopped her saying there was no light (electricity). Probably thinking the staff did not understand the lady explained that she was only going to get her weight and blood pressure checked. “There’s no light!” the staff screamed, grumbling about ‘all these people who dont listen’. (For some reason when the electricity goes out, everything stops even if it is in broad daylight where everything is visible.) Two ladies to my left were very disgusted with the rudeness of the staff and began discussing among themselves how one matron was the only courteous person in the whole building. I was surprised they still felt that badly because the general reaction all the years I had been coming there was for these people to act as if it was okay to be spoken to rudely. The doctors barely even glanced at you when you sat in front of them -I know mine didnt- except you said something to startle them. They were rude, curt and condescending and explained nothing that was not absolutely necessary. (After receiving my CD4 count results -which had risen by almost 20 points- I took the stub of paper to the doctor who said ‘youre ineligible for drugs’ and gave me my next appointment date.) But they had friends who they skipped the queue for, attended to while you stood waiting and so on. Would you trust them with a much-needed serum if Ebola came knocking?
It is these doctors’ attitude that earns them almost no sympathy from the public on this strike they have begun. Almost every Nigerian has a story about the shoddy treatment they receive in public hospitals from doctors and healthcare staff. I have shared mine here. These are people who take out their remuneration frustration on the patients; why will they then ever put their lives on the line all in the name of containing Ebola? They do not treat pregnant women with any care so why would they treat any patient well who has a 90% chance of dying?

Whatever the case, this is one time where HIV does not seem that bad afterall. I mean look at inconsistent me getting healthier without medication. In discussions with my teen and preteen neighbours about Ebola the general concensus was “HIV is better o”. I just wish we had a responsible government that understood its priorities not one that loots with impunity.

Joie

LUTH Chronicles ( July 2014)

My last appointment was in July but I was worried, wondering if the clinic would operate, as doctors in Nigeria had embarked on a national strike. Finally, I found a number of the healthcare staff who always demanded money from me and with much hesitation I called to find out. He assured me that only the clinic would be functioning. Thumbs up to LUTH for that.

As usual I was out of my house by 5.30 am and at the hospital in less than an hour, later waiting the 3 or so hours before the clinic began stirring. Sure enough, an hour and a half later we began to file in for our weight to be checked. Usually to avoid chaos people are asked to file in in groups of three, row by row. More often than not, some people, probably seeking to prove their ‘Nigerianness’, will jump the queue and go in even when their row is not anywhere near being next. Of course this irritates patients, especially the early comers. And  it really makes no sense to rush because eventually people are only attended to, by the doctors, according to the order of appointment cards ( earliest to latest) not their vitals- except for the occasional cases of unscrupulousness now and again.  A few minutes after I arrived and as I was settling in, I had noticed a young man walking in, to me he seemed well-dressed and somewhat attractive. I was a bit curious about him because of the aforesaid virtues and also because I had never seen a man fitting that description since I began to attend clinic. When the queue-jumpers made their moves however, he was one of them , and suddenly all his qualities faded before my eyes. (LOL).

A short while later, one of the healthcare attendants, a rather pleasant, soft-spoken man came to address us. (Now this man unlike most other staff is particularly loquacious but very humble towards the patients and I always wondered why. I found out from his conversation that day, that he too, is a PLWHA and realistic about his situation.) He started by scolding those of us who never attended support group meetings, saying he could not understand why the crowd he sees on clinic days thinned out considerably during support group meetings. He said apart from it being a forum to find a partner for marriage, there were things discussed at those meetings that we would not hear at the clinic until later. After a bit of hesitation- for effect- he gave an example.The consultant in charge of the clinic had attended the last support group meeting and had informed them that from October or thereabouts HIV treatment would no longer be free.  International donor agencies on which Nigeria is dependent for HIV treatment were experiencing what they referred to as ‘financial fatigue’, the rate of infection in Nigeria instead of dropping was rising so they had decided to cut off some support. The overall effect would be that drugs would be free but the accompanying tests done at regular intervals to check for proper liver, heart, kidney,etc function would have to be paid for. He assured that they were trying to make the costs as low as possible. With everyone being very silent as he spoke, the piercing wail of a caregiver, whose patient had lost their life, ostensibly due to the doctors’ strike, brought our realities painfully home.

I already anticipated the end of free HIV treatment/care in Nigeria because it had been in the news for weeks, however I do not think that that is a solution to curbing the rising rate of infection. Of course there’s no gainsaying that it is a huge shame and an indication of how badly we have mismanaged (and are mismanaging) our resources in Nigeria that we have to depend on aid for any aspect of our healthcare,and we cannot even manage that properly, but for the dependent few it is what it is. Even now that treatment is free a lot of people find it hard to come to the centres. This is because like I have said previously most of the attendees are low-income earners who have to plan their finances to travel to the very few treatment centres available. Some of them who do not have treatment centres in their states, or who may experience stigmatization in their locale, have to travel out of state for treatment. Even I can attest to how much of a struggle it has been for me to come up with the transport fare since my period of unemployment. It was for these reasons that the visit intervals were extended from 1 to 3 months. I reckon that this is the same reason for the low attendance at the support group meetings for a lot of people. For me, however, that and the fact that, unless I have to, I do not want to be at the treatment centre for any reason. I am also very distrustful of a support group run by people who for the most part treat you like you are an unwelcome, inevitable distraction. I am certain that with the introduction of these fees the centre will lose a few patients,depending on how high the fees are. In my opinion, the answer to actually reducing the rate of infection and effective treatment is to decentralise these treatment centres and increase education/awareness. I am talking mobile treatment centres in rural areas, in campuses, at bus stops. Stop making the drugs controlled substances because that only just makes it more available for the rich. Make it easier for people to ask for and receive treatment and things will change. But of course these cannot be done if there is an irresponsible government in charge.   Another nurse came to speak on free cervical cancer screening and then it was time for consultation.

My case note was given to a doctor I had not interacted with previously.  I actually made my judgement of her from afar seeing how curt and aloof she was towards other patients before me, but something she did and said made me change my opinion of her, and indicated to me that a major factor in your treatment was the disposition of the doctor you were sent to.  As I pointed out in my previous post, my CD4 count was dropping as at the last test. The doctor picked on this immediately and, observing that I was meant to carry out another test that day, booked my next visit to fall a month from that day as opposed to the usual 3 months . She explained that if my CD4 was still dropping it was necessary to catch it early and begin treatment rather than wait 3 months. I was impressed because she was obviously paying attention unlike the other doctor I had been seeing. However, I was not sure if  I was ready to begin taking drugs; at least not from this treatment centre.

If I think going for consultation is tiresome and stressful then being placed on drugs is twice that. Everyday at the clinic, the patients are divided into two groups: those who come to collect drugs and those who come for consultation. Those who come to collect drugs have to be at the clinic twice in 2 months, once to collect their drugs and the other for consultation. Some people try to make their appointments coincide, especially those who have to come from out of town, but there is always a bit of a problem as sometimes when they are in consultation, or having their blood drawn, it could be their turn to pick up drugs, and if they are unavailable they are quickly glossed over. Another factor is the side effects of the drugs. You are advised to come to the clinic immediately you notice any side effect but it is a chicken-and-egg situation because if it is not your day of appointment you will have to wait until the end of the day before you are attended to.  A number of people resort to bribing the staff to help them pick up their refills, so they can come for only their consultation appointments or whatever works. There has got to be a better way. So all these were at the back of my mind as I walked away at the end of the day.

‘Are you done?’. I turned in the direction of the question. It was a man I had observed at the laboratory where we went to draw blood. He had been pretending to misunderstand his position in the queue and had insisted on going ahead of a few people who were very displeased about it. ‘Yes’, I said. ‘Oh, you must have come very early.’ I thought he was saying this in passing until I looked over and saw that he was actually coming close to me, probably attempting to make conversation. ‘Yes’, I said as I walked hurriedly away.  Even if I decided to overlook all my reservations about the centre, and miraculously developed any interest in its matchmaking efforts – which I wont – bad behaviour and indiscipline will not be uppermost on my partner selection criteria.