Monday, June 9, 2008

BUYING TIME Vs LIVING LIFE.

One Saturday every month I go for a group meeting with a bunch of HIV positive guys like me. The group that I helped start had about 9 people on the first day and has been growing ever since. It’s sort of like an AA (alcohol anonymous) meeting where we all come together to talk about issues related to HIV that we go through as well as educate each other.

I haven’t been a fun of support groups because the few I went to before weren’t exciting, I am not a fun of sad stories either and I sort of felt the members there were dwelling more on what had happened rather than what they could do now that they are HIV positive.
Our meeting is fun I look forward to it every month. We encourage each other to have fun, be healthy, kick butt and be productive. I think since it’s specially tailored for the youth, this works just fine.

So Saturday we had our June meeting and on record 24 people attended. I was so proud of me. I started this group, I was scared that I would end up in it alone with the two people who help me facilitate the meetings but 4 months down the line we have 24 people meeting to talk and be friends? Awesome.

Issues of discussions range from fun, dating and relationships to children, families, parenting and work. We let our guards down and talk about our fears and we disclose stuff that would make our friends scream. Actually for most of the people in the group this is the only time they can be real. Because their friends, workmates or relatives don’t know they are HIV positive.

This Saturday we had an interesting and heated discussion on why people who aren’t on medication yet should religiously take septrin. Let me go off on a tangent,
This is my fourth year with this virus, I am not on medication and aside from a cold whenever everyone has one I am fine. I haven’t ever been so sick I was hospitalized or didn’t wake up to go to work. I am lucky I guess and I am not taking any septrins.

Every time I go for my clinic visit, my doctor and I have this discussion about the need for me to take septrins and I keep refusing. He goes on and on about how the drug helps keep infections away….to which I silently go like I haven’t ever been sick anyway. My CD4 has always ranged between 621-800 I think I am fine. I hate medicines, of every kind. I don’t finish doses, its only recently that I started taking my antibiotics medication seriously and that was because my face was so acne infested and I was trying to get better. What I tell myself and the doctor all the time is I will eat well and stay happy and when my immunity gets low I will start on my ARV’s I don’t want to take any medications in between unless I am treating something.

I got to face the septrin issue at the meeting yesterday when the ‘pro septrin’ guys came up strongly to defend their case.
“Septrin is a prophylaxis that helps keep infections like pneumonia away.” one member said. “Whaaaaaaat?”
That got my attention. Okay there are about three opportunistic infections related to HIV that scare me T.B(and this is so bad I don’t even hang out in filled up joints), pneumonia(I have seen two friends get this and get hospitalized) and Herpes( the pain……I don’t think I can stand all that pain). I pray to God everyday to keep these diseases away from me.
So the mention of pneumonia got me so scared Iam actually thinking of taking the damn tablet, but I still have my reservations.

One of the reasons why I don’t want the drug is because once in while I will go clubbing and take a drink. Sometimes…. i take one drink too many. I wouldn’t want to mix that with alcohol; in fact I wouldn’t want to mix any meds with alcohol at all.
“I take my septrins till Thursday and go off till Sunday.” Another member said.
“No that’s wrong, you shouldn’t break off taking the medication blab bla bla……’ and the discussion went on and on.

Something came out clear for me in that meeting, as much as we all had something in common, we were totally different in our ways of dealing with it.
There are some of us who believe they are ‘buying time.’ Everyday they live with this virus. Then there are some of us who are ‘living life’. We are aware of what this virus can do, try our level best to do what is right to stay healthy but have decided to live life like everyday was our last; drawing every positive thing out of it, shaking off or shrugging all the negative energy. Then there are those that don’t give a rats ass about anything at all (I see a lot of these people at my office) they just want to die. A small issue like popping a 500 mg tablet everyday will not bring out the same views by all these three groups.

“Everyday you wake up the first thing you think about is I have HIV and you just bought more time” one member said.
I wanted to differ with her but I stopped because that’s how life is for her.

That’s not what I think everyday when I wake up. I don’t go about my business telling myself I have HIV so I will do this or that….actually I am more driven by what useful things I will do that day. We are all going to die someday and not necessarily due to complications of AIDS. So the buying time thingy doesn’t hold water for me.
We all see things differently like for example someone probably thinks they are walking around with a disease and are scared to even put on make up and go have fun, or take risks like having a baby or going for that new promotion because for them life stopped at the HIV+ verdict and the rest of it is 'extra time' as they wait for death. For others this is time to catch up on all life has to offer.

Whatever our differences in opinion, one thing is common, we all have the virus and we all want to live for as long as we want. I tell people all the time that there isn’t any manual for living with this virus. You just have to 'fine tune stuff' one day at a time and in a couple of years know what works for you.
Whenever someone asks what special thing I do to stay this healthy, i tell them I laugh. Sincerely I am not on any diet at all, I don’t do anything special, and I want my life to be as normal as any other person my age. I just stay happy and laugh out a lot even at my own problems (which I have started viewing as opportunities).I believe laughter is the best medicine and I indulge in it a lot.
I believe in living my life to full potential….more like eating the ice-cream before it melts away. That has worked for me. Whatever situation you are in. Find what works for you.

Friday, May 23, 2008

LOST IN THE SHADOWS

If I were asked to give what I consider the single most useful bit of advise for all humanity it would be this: Expect trouble as an inevitable part of life and when it comes, hold your head high, look at it squarely in the eye and say, “I will be bigger than you. You cannot defeat me.” –Ann Landers.

Last year I met Alice through a long term friend of mine. Afterwards she kept calling and coming to our office because she really wanted to talk to me. I thought that because she was saved and so much into the church she wanted to preach ‘the word’ to me and probably tell me I can get healing if only I got saved and stuff like that. I have met a lot of people who tell me stuff like that or maybe offer herbal medicines that could cure my ‘disease.’ I politely say thank you and smile at their offers of help but believe me most of the time I am seething inside.

I try to avoid such talk as much as I can so for about two months I avoided Alice as much as I could. She was persistent though, so much till I gave in. So we met at my house on 24th of Dec last year. I couldn’t get myself busy so I don’t meet her; we had closed office for the holidays. After talking to her though I felt stupid and wished I had agreed to meet her sooner.

Alice and her fiancĂ© were planning to get married and were about to formalize their engagement. He proposed at the beginning of the year and she had a beautiful ring on her finger. He was getting ready to go and ‘rashia’ (pay dowry) to Alice’s parents but they though it best to go to the VCT for a HIV test.
Antony tested positive for HIV and Alice negative. They weren’t intimate yet even after dating for three years; she wanted to wait till they were married (Alice is a much respected member of her church).
My first reaction to all this was shock. I expected a lecture from the scriptures. Well we talked a lot and have been friend ever since. The guy was devastated at the time and I tried to reassure her that that was normal. I told her about the youth group we intended to start for HIV + youth and asked her to tell him to come. It would help to talk about it I thought.

Three months down the line, Antony who was in his internship year at medical school had been in and out of hospital a number of times because of depression. Alice begged him to come and meet me or any person living with HIV so that he could draw strength from our positive lives and get out of his darkness but he couldn’t hear of it. He started drinking too much. I couldn’t take what this was doing to Alice anymore, it’s like she was HIV+ herself.
I know its hard(been there) at first to learn you are HIV+ but I believe it requires inner strength to get out of the dark hole this news drops you into. The longer you grieve the more you affect those around you. No one wants to be around negative people so you will definitely lose friends, your job and even family not even because they know your HIV+ status.

Alice was in my office yesterday and after our usual chat about everything she goes like,
“By the way my ex passed away.”
“What ex? When?” I ask. I had no idea they had broken up.
“He died on Friday and I think he committed suicide.” She explains.
“I am so sorry.” I say because I wouldn’t even begin to understand what she was going through. We talk for awhile and then I she left.

I am sad for Alice- this is something she wont forget in a while, I am sad for Antony’s family but a large part of me is sad at what Antony may have let himself go through before he decided to end his life. Testing HIV+ is hard. Its probably the hardest thing that ever happened to my life so far, the first few days are confusing and full of pain but as Stephen King once said,
“Time takes it all. Whether you want it or not, time takes it all away, times bares it away; and in the end there is only and in the end there is only darkness. Sometimes we find others in that darkness and sometimes we leave them there again.

Monday, May 19, 2008

GO LIGHT YOUR WORLD

Last Sunday; 18th May 2008 the HIV world celebrated ‘candle light memorial’.

This is an international event marked every 3rd Sunday of May to remember those of us who have died due to complications of AIDS.
This was my first candle light celebration and, I was in charge of preparing for the event that my organization wanted to take place in Muranga.
So without putting much thought to the fact that I probably lacked experience for this sort of thing, I accepted the challenge sourcing as much information as possible to ensure I didn’t disappoint my boss.

We planed to have a memorial service at a church in Muranga;allow me to digress.
Muranga is home to our children’s home. This foster care is home to children orphaned by AIDS, majority of whom are HIV positive themselves.
I thought it best to have the memorial service there so they will all be able to attend.

Back to Sunday, all of us were up early and we managed to get to Muranga a couple of minutes before ‘our mass’. I was busy taking videos and pictures for the office is sort of went about the mass like an outsider.Besides the service was in Kikuyu and …well I didn’t understand a thing. Right after the service though, when we took over the event, something changed.

We had poems and testimonies from the children and halfway through it I was teary. As those kids narrated their poems I couldn’t help wondering if that would be my son some day.

What I hate most about my HIV status is the fact that if I die, my kid remains an orphan…not a normal orphan but joins the statistics of those kids orphaned by AIDS. I couldn’t stop the tears and as I looked around, most of us were crying too.
Watching the kids was heartbreaking. I just couldn’t stop thinking about my son.I don’t want him crying like this someday…not if I can help it.

I know God is the giver of life and I know I will die someday but if I can help it I will try as much as possible to ensure that my son has the happiest memories of me; even with this virus in my body. I will do as the doctor says; I will light the candle within me and spread its light to as many as I can reach. I will live a very positive life.

We lit candles in memory of those who had left us and wrote our messages on a piece of white cloth.Some wrote messages to their parents, others to their siblings, others yet to their friends. The content of the messages were varied; but one thing was common. We all miss them.


This years message was Never give up, never forget.
This is a two pronged message asking us not to forget those who have gone ahead of us, not to forget all the things we have learnt from HIV&AIDS in our lives, not to forget to protect ourselves from getting the virus and not to give up in the response on the fight against HIV&AIDS.

For me this message is all wrapped up in a song by Chris rice that we all sang as we lit and held high our candles.

GO LIGHT YOUR WORLD-Chris Rice

There is a candle in every soul
Some brightly burning,some dark and cold
There is a spirit who brings a fire
Ignites a candle, and makes his home
Carry your candleRun to the darkness
Seek out the helpless, confused and torn
And hold out your candleFor all to see it
Take your candle and go light your world
Take your candle and go light your world

Frustrated brother,
see how he's tried toLight his own candle some other way
See now your sister she's been robbedand lied to
Still holds a candle, without a flame
Carry your candleRun to the darkness
Seek out the lonely, the tired and worn
hold out your candleFor all to see it
Take your candle and go light your world
Take your candle and go light your world

we are a familyWhose hearts are blazing
So lets raise our candles and light up the sky
Praying to our Father in the name of Jesus
Make us a beacon in darkest times

Carry your candleRun to the darkness
Seek out the hopeless, deceived and worn
Hold out your candleFor all to see it
Take your candle and go light your world
Take your candle and go light your world



You may have not been with us on that day but you can go light your world with the resources you have. Remember we cannot be able to everything but can take pleasure in the little that we do with all our heart and love.

Tuesday, April 29, 2008

LIVE LIFE; Get out of the shadow.

It’s about 8.30pm and I am still stuck in the office….long story. Taking a break to talk about my day. Well……lets see.

I am kind of thinking of what my life would be like if I was married. I would leave work in another half hour to go home to a family (Husband and kid-s).
Tired as I am right now, I will have to deal with baby stuff, and then ensure my husband has had his dinner and a warm bath. Sort out the following day’s issues with the house help before I go to ‘our bedroom’.
I am about to get into bed and my husband gives me ‘the look’. He wants me. As much as I feel good to be desired, I would be moaning inside because I am too tired to even fake it this time round.
Mmmm I think I would quickly reach out for the ‘ugly black stocking’ that men confess to hate so much. Maybe that would turn him off and get him off my back for a while or better still he could sneak into our maid’s room and I get to find out and lose it….ah! Weird thoughts.

Before anyone thinks I am one of those anti-men women, I totally like men. They are better hang out pals and make very good true friends. I think a lot changes though once they share a bed with you and sex happens.

Today I got an email from a woman whose brother just got tested for HIV about three or so months ago. Her brother has only told her and their mother about his HIV positive status. He isn’t comfortable with anyone else in their family knowing just yet because he is scared of the way they will treat him once they find out. Well Dorothy’s brother isn’t on ARV’s yet but takes septrin tablets and tries as much as he can to go on with his life.
Last night Dorothy’s brother came home to visit and he has a cough or a cold or something like that. Her daughter who adores her uncle was all over him playing with him and clinging to him all the time.
Her concern was whether her brother could transmit the virus to her daughter because he was coughing and sometimes holding her too close.

My first reaction to this email was pain, then anger. I wondered where this woman had been in the last decade to even think those kinds of things. The first anti stigma and discrimination messages were all about ‘you can’t get HIV through touching and kissing and sharing utensils….’
I almost didn’t write back because I kept putting myself in her brothers shoes and thinking how crushed I would be if I found out that’s what she thought.

Last year my friend Betty’s sister Candy came back from the states where she lives to visit, she came with her 9 month old baby. We were fine and I was sort of giving her tips on how to take care of her baby-seeing as I was once a young confused mum-. We cooed at the baby and I even fed her. Well that was before Betty told her sister about my HIV status behind my back. To date I really don’t know what she said because I never got any close to that child ever. As soon as I got to the house, the baby would be whisked upstairs. I never even noticed anything strange until their house help pointed it out to me. I was in so much pain I couldn’t even cry.
That should explain my initial feelings I guess, I was sort of taken back to that time and how hurt I was.

Being in this situation has taught me how to at people and situations objectively. So I put myself in Dorothy’s shoes. Tried to rationalize her fears. Well she was just doing what any mother would do, worry about the safety of her child who she loves more than anyone in the entire world. I bet she was kind of torn between hurting her brother’s feelings and being a mum. Maybe that’s why she wrote to us. She didn’t need for me to be angry with her; she needed information and had reached out to people like her bro to get it.
So I replied to her mail giving instances where transmission of HIV can occur, reassuring her that as far as I know the only virus her daughter was exposed to at the time was the one for flu. And I encouraged her to make time to come and spend some time with some of our members and kids. I am hoping she will learn a lot about people living with HIV (PLHIV) when she hangs out with us.

I believe that the reason why most people shun and stigmatise people living with HIV is fear and lack of information. We blame people for what happens to us yet we do nothing to change the situation.

Maybe what we HIV+ people need to do is stand up and do our part in putting a face to positive living instead of hiding in the shadows all the time. Then maybe people wouldn't need to be so scared of us.

Monday, April 28, 2008

CD4 MANIA

Taking care of issues for some of our members today got me so busy I actually forgot to have lunch. I am not hungry though, for some reason all I could die for right now is a bottle of chilled kingfisher or Smirnoff ice black……and some good bongo music at my local.Oh how i long for the days my friends and i religiously had the 'Monday drink.'

That isn’t what I will get today though….because I can’t. Well you see Friday was my clinic day. I have clinic visits every 3months and CD4 test (test done to check the level of ones immunity in the blood) every 6months. I haven’t been on medication since I discovered my HIV status but I religiously keep my clinic visits. In the last test my CD4 cells were 798

I hate the CD4 counts though; for various reasons.
First there is the needle. I don’t mean to sound like some spoilt kid but from day one having the lab technician prick my arm to draw blood made me feel like a laboratory rat. One should think that with three years of knowing my HIV status and about 6 CD4 tests I should have gotten used to having my arm pricked but noooooooo! I guess in this life there are things one doesn’t get used to at all.

After the needle thing, then I have to deal with the results of the test. I hate it when my immunity goes down. I tell myself a lot of things like ‘I am losing the fight’ or ‘I am too vulnerable to infections.’ Bla bla bla. I don’t know what my CD4 result will be this time but will do so in two weeks.

Any HIV positive person will tell you they value the numbers of their CD4. I have no idea why we are so bothered even when our doctors tell us the fluctuations are normal. Jackie calls it CD4mania and admonishes me every time I blame little things on suspicions that my immunity is low.

A couple of weeks ago, Edith a girl in my youth support group called me in the middle of the night.

“I am sorry to wake you up but I can’t sleep.” She apologized

“Its okay dear, what’s up?” I sleepily replied

“I have to come in and see you tomorrow. I am so depressed.” She said.

I agree thinking she probably had a fight with her relatives whom she stays with and who to date don’t know about her HIV positive status.

Well she did turn up the following day and the reason for her sleepless night? Her CD4 results had gone down by 149. Well Edith isn’t on medication and her last CD test was at 700. She was still way above danger point but she is still stressed. I cant help but think about how many other people have had me drop everything I am doing to have this chat. It’s always the same thing.

“The doctor says its normal but I am still worried”. Christine another group member told me. I guess for us who haven’t started medication yet, the nightmare is crazy. You don’t want to go into the meds yet you know somehow that a simple test will determine that you start taking them. My answer all the time is;

“Find something positive to focus your energy on sweetie because this is what you will feel every time you go for the test.”

This isn’t what I feel when its my turn to go for my results though. Easier said than done ha!

I have had a lot of pimples of late something that’s unusual. I decided to tell that to my Doctor. Results? I have a month's prescription for antibiotics damn! I don’t like medicine! I wish there were some ailments that could be treated by say 5 glasses of wine a day! i would actually enjoy visits to the doc! Speaking of wine, there goes alcohol for another one month! Double Damn!

It think as much as I put on a brave face every day and bring out all the positive energy in me to spread around to all who may need it; there is a part of me that will always be scared of what this virus can do to me. And like everyone else realizing this is like taking one step ahead into doing something about it.

Jerry Gillies once said,

“Confront your fears, list them, get to know them, and only then will you be able to put them aside and move ahead.”

Tuesday, April 22, 2008

'Mummy blues'

I am having a very easy day. My boss is out for some training and i can finally relax. This is a relief seeing as I haven’t had a slow day in the office since January. I am enjoying my short-lived freedom because I don’t think I will have another day like this one in a long while.

I wont be bothered by all the work that I have put on hold today…no I wont. I will reply all my mails and make new friends on the net. That’s what I will do. Then I will IM all my buddies at around 3pm.

I miss my son. I really do. This is a new feeling for me seeing as the past years of his life I only saw him for a couple of days or a week if I was lucky. I had him two weeks before college.

I finally managed to convince my parents to let him stay with me. I wanted a shot at being mum before he becomes a man and I can’t go into his room and discuss girls with him or hug him in public……..

Nothing prepared me for the transition though. My domain was invaded and boy wasn’t it overwhelming.
No more unnecessary fun-I have fees to pay now.
No more junk food- a baby needs a nutritious meal so that means cooking everyday.
No more working late- he is home at 4pm and needs help with his homework.
No more waking up late; even on weekends. His noise and pranks would not let you indulge after 7am.

I do laundry and sort out uniforms and go to the market and recently bought needle and thread. I am a complete MUM. When most of your sentences begin with ‘don’t do this/that’ or ‘why you didn’t…’ then you are a mum

Well the first couple of months were spent with us clashing and adjusting. I guess that’s to be expected seeing as this was the first time in 8 years we were stuck together without my parents.
Junior is currently on school holiday and visiting my parents. I get to sleep most of the weekends but it’s not fun anymore. The house is soooooooo boring without him. I miss his jokes and his baby laugh. I miss talking about his feelings for his girlfriend, and I want to pick up after him and I am tired of not having him around for supper. Oh! When will the school holiday come to an end?

Most of all I miss his smile. It’s the first thing I see in the morning when we all struggle to wake up and get him ready for school. That smile means the world to me….makes me realize what a handsome young man I’m gonna have in a few years. The smile makes up for a lot of things in my life and gives me reason to soldier on even when all appears lost.

I MISS MY SON!

Sunday, April 20, 2008

APPRECIATING MY FRIENDS

Last week I got an opportunity to help some teachers at Kenya Istitute of Education (KIE) come up with radio programs on HIV & AIDS for school children. Part of the training required that I tell my story and they would use it to script the programs. As I went through the week answering all their questions I couldn’t help realizing the influence of family and friends in shaping the positive strong person I am today.

I am slowing down my otherwise very dynamic working life to think of and appreciate various people who have seen me through the worst moments of my HIV positive life.

After the verdict of my HIV status, I painfully lost a number of friends. The bright side of all this is that I made some more. These are the people I would do anything for because they give my life meaning each day.Tehyi Hsieh once said,
“Life is partly what we make it, and partly what it is made by the friends whom we choose."
If asked at random to name people who have helped shape my life in the last four years, I would say……(not in any particular order)

Sam Kantai; I met him in my 1st year at the university. We didn’t get too close though until after graduation and fate had us become neighbors. He saw me through the confusion of the first few months into my HIV positive verdict, to the pain of losing my job and being so angry with God and the world. He taught me the value of spirituality. I don’t know where I would be at if I didn’t have him to run to.

Mary W.; Mary was one of my supervisors during my internship. We became friends though and still are. She saw me through the worst relationship of my life. She made me understand how not to let men treat me and how to calmly walk away from all the pain. She handled my disclosure so well, didn’t cry or whatever, has always been the logical person I would ask advise on anything.

Esther; Former workmate became my friend exactly one month after I discovered my HIV status. She was always there when I needed to go for a quick cry in the ‘ladies room’. She listened to me when I went on and on about my fears, took me to my first clinic, held my hand and say me through the new experience. Now she laughs with me.

F. Rache; My dear roommate from college. We have different personalities yet are so alike. In her own way she is always there whenever I need her. Encourages me to see things in the positive. She is there when I need to cry, or talk forever about anything however stupid, or go dancing or drink silly in celebration of whatever.

D.Muigei; My college friend. So near yet so far away. Thanks to technology though we are in constant communication. Always encouraging me to go on even when the going gets tough, for her sense of humor, for not treating me any different and always bonding with me whenever she is in the country however busy she may be.

Ojay; He learnt of my status through gossip and reached out to me. I wouldn’t begin to name all that he has done for me…all the time reaching out…its just too much. I would describe him in these words. A true friend.

Shi’; One of my newest friends yet so close. She took me out of a miserable box last year, taught me how to laugh again, how to be positive about my situation even in public. Was helpful during the first few days when I decided to go public about my HIV status. Quelled my fears, held my hands, celebrated my small victories, and always strived to make me realize I was special and can be anything I wanted to be. She teaches me everyday not to apologize for my blessings. And to stretch my potential for the sake of all those people who look up to me.

Josaya; New friend too. From him I have learnt the value of patience and relationships; I have learnt not to listen to peoples negative talks, not to give up on what I consider my purpose. With his help I discovered I could write, I could encourage and give hope. His opinions mean a lot to me.

There are some more who have influenced my life and who I will forever be grateful to; Masawa, Cecelia, Nyasaka, hill, Kombo, Mike, Peter, and Joyce.

So this week I am doing the reaching out, calling all of these guys and trying to see if I can meet as many of them as I can. To show gratitude and appreciation for my relationships.
Iyanla Vanzant once said,
“My most courageous moment is not a moment at all but a series of moments strung together around a singular theme: telling myself the truth, the truth about who I am, about what I want, about what I'm doing. That takes an incredible amount of guts, faith, and strength. For me, it's most challenging in relationships. Some people do their learning in careers. Some people do their learning alone. Me, I do my greatest learning in relationships.”