When I first started this blog, I got all kinds of weird comments and emails about my articles. That was normal, according to what I had researched about blogs. Then, along came a few interesting and personal comments that caught my eye that were obviously from real people who had something genuine to say. One of these was from a wonderful woman who had somehow come across my blog and really liked it. It turned out that she too had a blog on which she was writing about her experiences with HIV/AIDS. We began to chat back and forth through Facebook and Twitter and an on-line friendship was born. But, I have to say that I feel I glean more from her than she probably does from me. Her blog is www.hiv-and-us.blogspot.com/ and it is about her and her husband’s lives with HIV/AIDS. I read her blog and was absolutely astounded and taken aback by a number of things.
Please go to her blog and read her story, it is truly amazing. It had me really thinking about my battle with AIDS and how lucky I am to be here in America where I have incredible access to drugs and medical treatment. Most importantly, her blog exposed me to the battle that HIV/AIDS women go through everyday, even in the United Kingdom where she lives. The hideous stigma unjustly attached to women who are HIV+/AIDS was totally unknown to me; in fact, I felt ignorant, stupid and guilty that I didn’t know about this horrendous stigma attached to these women simply because of their HIV/AIDS status. These women and others all across the planet suffer daily from stigma and ignorance when it comes to our disease. As a man, I can never fully appreciate what they go through, but as a man with AIDS, I can appreciate the disease aspect of most of it. What does that mean? It means that I don’t have to worry about being pregnant with HIV/AIDS and carrying a child inside me that could possibly be born with the disease by not having access to the proper medications. This is something that a lot of women struggle with on a daily basis. With today’s medications I know that children can be born without the virus, but the mental anguish they must go through has to be a living hell for them. They deserve more help than they are getting and their battle deserves more of our attention and help.
I was astounded that a human being of any sex is treated like this just because of a disease. Having hideous epithets hurled at them daily just because of their sex and their disease, I can’t even imagine. I thought being called “fag” now and then was bad; these women have more courage in them than I could ever begin to muster. In fact, I just joined their Facebook group and am constantly taken aback at the stories they tell about their daily lives and struggles with HIV/AIDS. I guess in my own naïve American mind, I just thought that everyone had access to medications, medical care and support. WRONG. WRONG. WRONG. Some of these brave, strong women are even told to “not disclose their status” as it could be detrimental to their very lives. It was and is truly and eye-opening experience for me. I talk with women all over the world now who tell their stories, struggles and triumphs when it comes to just getting through the day. I have the utmost admiration and respect for these ladies, as they are stronger than I could ever, ever be.
Then, a few days ago, I had a great idea. I wanted to tell one of their stories on my blog. I wanted you all to know what is going on around the world when it comes to “poz women” as they call themselves. I wanted to let you all know that everything is not peaches and cream like we tend to think it is here in America with respect to health, education and medical treatment for HIV/AIDS. Well, at least I think it is that simple as my situation is a good one: I have health insurance, great doctors, I am on disability, my husband works and I belong to a great organization, the Desert Aids Project, that helps with everything from medical bills being paid to rental assistance. From my point of view here, everything is rosie and peachy for me and my husband. For a lot of these ladies, some even living in Africa, the situation is far from rosie and peachy. It is a daily battle just to get through the day, trying to deal with whatever crap is hurled in their direction all the while trying to raise their children, keep healthy and do the best that they can.
So, I got the permission from one of the ladies I talk with to post parts of her blog on my blog. I decided to run the posts together as one story. It is the story of Jacque Wambui, a 38-year-old young woman with four children who lives in Kenya, Africa. She was diagnosed in 2004. Back then in Kenya people weren’t given medication unless their T-cell count was below 200. Now she says they get treatment when their T-cell count is 350 or lower. Just to give one example of how different it is for her than me, I was diagnosed in 1993 with a T-cell count of over 700 and was put on medication immediately and have been ever since. This could be for any reason in Kenya; a lack of medications, the cost of the medications or even a lack of education about the disease. I am not sure why her country does this, but what a vastly different approach, don’t you think? I will research why their policy is what it is and report on that at another time. I find it very disturbing that people wait that long to get medication as we consider in America a T-cell count of 200 or below to mean that you have AIDS, not just that you are HIV+.
I wanted to tell her story and what better way than in her own words, right? Her blog can be found at http://blacksilver.blog.com/ which is the site from where I pulled her story. She has given me permission to publish her name and anything else needed to tell her story and for that alone I find her to be very brave and courageous. For, as you see, in her country people with HIV/AIDS are not treated like they would be here. There is a lot of unjustified stigma and inhumane judgement that goes along with this disease, which you can read all about in her story that follows. I am going to post it in two parts so that you can absorb everything she says and give her words the respect and thought that they so dearly deserve. Please read her story and remember that she is just ONE of millions of women across the world that are in need today of support, friendship and love even though they are the strongest women I have ever had the grace and honor of meeting, if even just by the internet.
Just to let you know I have not edited or changed any of her words. What you are about to read are her words exactly as she describes her own very, very personal story.
Posted by Jacque Wambui in Feb 23, 2010
This blog is dedicated to my four boys; without which I would not be here writing this :
I have always wanted to write my story….it has been written plenty of times, in magazines, newspaper, spoken on radio and even appeared on national TV. But now I finally get to do it …myself…It’s a long one…over a period of almost six years. I will tell my story as I remember..because some details are not so clear…reasons…some of it may be too hard to remember because…I just cant recall. Though I do get thrown back in time…and that is when I will post my memory.
Today I will write about the events that lead to that fateful day in August 2004.;
I was living a good life….had moved out of home after a tiff off with my parents but had picked myself up and adjusted to life with my three boys in our little room. I was working as a waitress in a restaurant near the C.B.D and had formed a good clientele. And then I met him.
He was very charming but a heavy drinker, heavy. Well he charmed me…. and all our dates were of course in the bar! We had a great time, what do you expect with a date at least twice a week? But he was quite popular with the ladies…so I backed away and got another job…selling beauty products.
In between that I underwent a strange period…I was lazy..always tired and I was always cranky…snapping at my boys and could care less about my appearance…then I got the offer to work in a beauty shop in the suburbs.
Then the blurry vision began. I would look at a white ceiling and see black spots. My chest began to ache and my feet and hands began to swell and i would feel seriously cold all the time. My boss recommended his doctor who had a private practice nearby and his consultation was quite expensive…I began to see Doc. M, he was very nice, took a lot of time with me. he did test after test after test and all were negative…arthritis because of the swelling …even rheumatism…pregnancy because of the nausea…all negative. I was on medication for about three months straight but another ailment would pop up.
Then one morning I woke up with swollen tonsils, I did not eat breakfast and headed off to work in a thick warm coat…in the August heat! I told my work mate who is a pharmacist of the way I was feeling that day and he advised me to go back to the doctor for further tests…I did and walked in at about 4pm..feeling cold and very moody. I met the nurses and I informed them of how I was feeling and one of them quietly suggested that I test for HIV. My first question was why? And she answered..”you are showing most of the symptoms” and I flatly asked her “where could I have gotten HIV”??
The two nurses gave me a long talk about how it is a manageable disease and people live with it and one cannot tell by looking at them. I tried to argue but finally gave in after negotiating the price of the test, down from 500/- to 200/-. My finger was pricked and it was quite painful, I had to wait for the results for 45 minutes. I was put on the observation bed and I fell asleep. Then Doc.M came and the nurse told him I had taken the test. So we had a talk about the same,,how people live with it…etc..etc.. Then the lab guy came in with an envelope and gave it to the doctor. He opened it and said…” I don’t like the results of this test”…and I took the paper and tried to read it. but I could see only a blur and then he told me “Jacque, the results are positive”
I burst into tears…and cried..asking him..why, how, from where? He counseled me, we spoke about my recent relationship and then…i began to ask myself WHO???… until it got dark and I had to go home. He suggested i keep it away from my boss but I said I would tell him so that he would agree for me to have bed rest for five days as recommended by the doctor . I told my boss and I got the bed rest for five days.
Now the question was , how would I break the news to my family?? Especially my father???
Posted by Jacque Wambui in Mar 10, 2010
So, the question was, how would I break the news to my family? Especially my father?
While I was seeking treatment for the various ailments, I had to borrow money from my father several times, and he would tell my mother to tell me that instead of spending so much money…that I should test for HIV. And I would tell my mother angrily…if it was HIV I would know…and in any case, where would I have contracted it from? And I added that if he didn’t want to give me the money…he could just say so!
So now I shuddered at the thought of having to tell my parents I was HIV positive.
And the other question was WHO??
When I was young..I was quite the party goer…spending most….actually nearly all of my Saturday nights in the disco…enjoying life…then I met him. He was a DJ in the club my friends and I used to frequent….and our friendship led to companionship……to “unwanted pregnancy”….to getting my first son Terence. My mum suggested I have my son back home so she could keep take care of me after delivery….and that is when the troubles began. He would stop calling and coming to visit his son….giving the excuses of “no money” and of course my folks would ask of his whereabouts. Getting tired of being asked questions I couldn’t answer….I started asking him what was going on. To do that I would pay him a visit at his place where he lived with his brother. I would notice he was distant from me but I would deny it.
One day we had an argument and I walked off in anger..and decided that I would call it quits…and move on.. Before I came round to telling him how I felt, I discovered I was pregnant again….with my second son Jeremy, he was conceived when Terence was only eight months old!
So of course I had to inform him..and what I got was that the pregnancy was not his……
Well, I decided to move on anyway…but with difficulty… Later calls began to come to our telephone at home…..his friends telling me he was unwell….my first question was…is he getting treatment…and I was told he was. So my response was…..since I ain’t no doctor…there was no point of me paying him a visit was there??? The calls kept coming in….and I finally gave in.
One morning, I asked my mother to mind Terence for me…and she quickly asked where I was going…and I told her the calls were too many…he must have been seriously ill. She told me to go and be back before nightfall. So I arrived at the house…and strangely I found all his close friends in the living room…seated quietly…one of them saw me walk in ( the door was ajar) and said “oh, you have come”….and I replied…”the calls were just too many, where is he?”. At this point I just got stares…and his best friend informed me that his brother was out…and would be back shortly. So I concluded that he did not want to see me. So I decided I would wait for the brother for an hour, then i would be on my way.Minutes later his brother came into the house…and he said the same “oh, you have come” to which I told him that the calls were just too many. So he led me to one of the bedrooms and I noticed that the bed was bare of bedding’s…So he told me of how his brother had been seriously ill..his chest giving him problems…and seeking treatment but he refused to be admitted to hospital. So I asked if I could see him….and he told me he had just returned from the morgue…his brother had died at 6am that very morning.
I always try to describe the way I felt that moment…but I lack words…because they cannot describe it enough….shock, disbelief, anger,pain, disgust, blame…all are not enough.
I called my mother from the call box…she gave me three hours to get home…or she would come and get me herself. When I did get home….my father asked me what had happened…and I told him what I knew…and he asked me if I thought it might be AIDS..and I said….I don’t think so.
He was buried..life went on..another son…a relationship I still ask myself…how and what I was thinking when I got there in the first place…my third son Nathan.
So here I was HIV positive…and having to tell my folks and more especially my three boys the news…..
I went home that evening and went straight to bed….The following morning my house help tried to make me eat breakfast…but my throat was still clogged. All I wanted to do was sleep. When i woke up, I found my mother sited next to my bed….my house help had told her i had woken up,looking horrible..and had refused to eat so she came. She then asked me what I wished to do..and I told her I wished to come home. And she agreed..and I moved back to my parents house together with my boys.
It finally came to the point where I had to tell my father…after denying it for so long. My sister , who is older than me, had also been summoned when I said I wanted to make an announcement, and she was in a state of panic..insisting I should be in hospital…so I made the announcement that I had tested for HIV and it turned out positive. All my father said was “I know you are gonna be OK” and we listened to my sister babbling on in her shock….
Well, that was easy…so who else in the world would have a problem with my HIV status if my father did not??
I made up my mind there and then to find out all there is to know about AIDS…..and move on…
Posted by Jacque Wambui in Mar 22, 2010
So…here I was still in shock…but relieved that my father was convinced that I will be fine.
But there still remained my three boys….how would I go about telling them that their mother had HIV?
I was not able to eat very well for the next few days; my throat was still clogged so I was on soft foods. I started experiencing some strange rashes on my skin that were not itching, but looked a bit weird. The rash was visible on my face at first, especially around my mouth; then that rash turned out to small pimples and they started becoming painful. Days later they were blisters and very uncomfortable, so I went back to the doctor.
He examined me and asked me if I was eating anything new, because it looked like an allergy. I told him no, he gave me some ointment to apply.
The ointment didn’t work and the blisters started to burst, and were now extremely painful. After they burst they were drying up and forming dark spots on my skin, making me look quite unattractive.
I returned to the doctor and he asked me if I had any allergies, and I told him the much I had was eczema. He then informed me that the medication he had been giving me all along, contained Sulfur, and I must be allergic to it! He sadly continued that there was nothing he could give me…the sulfur would have to get out on its own…through the skin. By this time I was so weak because the pain had made me loose appetite, thus not eating well even the soft foods.
So I looked ugly with the spots all over and I was skinny.
My two elder boys began to see their mother looking weirder day by day when they came home from school; sometimes they were unable to see me because I was too unwell.
Then one day…they came into the room where I slept, with little Nathan ( Babby) running around with no idea what was going on, and my second born Jeremy would not look at me, he would talk to me with his face facing the other way, and I asked him if he was scared…and he said yes he was!
Then my eldest Terence, who was 10 years old at the time, asked me in Kiswahili….Hii ugojwa uko nayo? Ni gani? (Which is this illness that you have?)
That caught me off guard…I wasn’t expecting them top ask me this…But I put on a brave face and asked them if they had heard about AIDS. Jeremy quickly responded and said yes, and that the teacher in school had said that all with AIDS will die!
I calmly told them that I was not dying. And to take a look at all the drugs I was taking. I assured them the drugs would make me better.
So relived they asked me…utapona? (You will get better) and I said yes. We don’t discuss my HIV status much with them. But Jeremy still asks if I take my drugs!
I managed to get myself up and out of bed. I was off duty for about a month…I would take a bath in water mixed with aloe vera to make my skin smooth again.
I resumed duty with dark spots on my skin…and everybody wanting to know what was amiss….
to be continued…….
justonemanwithaidsShare on Facebook