My 27-year battle with HIV/Aids

My name is Sylvia Mueni Munyao. I am 27 years old and, like every girl my age, full of life and hope.

I have dreams of making it big in life, dreams of living large and maybe settling down with the love of my life to raise a beautiful family.

It was Kenya’s cultural export, Lupita Nyong’o, who said recently that no matter where you come from, your dreams are valid, and so I have this feeling that, despite the odds, my dreams are valid as well.

But it is not my dreams I want to talk about or those of the talented Lupita. On the contrary, I want to take a few minutes to tell you about my life as an HIV-positive young woman.

BECKONED TO HER

I hope that, by the time you read the last word, you will have begun to appreciate the little things that you might have taken for granted; little, overlooked, yet-important stuff like the fact that you do not have to pop a pill every day to stay alive.

I was born HIV-positive those 27 years ago in Mathare, Nairobi, and that means I have had a virus gnawing at my immune system all my life.

It is a scary reality, a creepy fact of my life, but I have learnt to live with it.

My mother died when I was still a child, swept off the planet by the disease I inherited from her.

All I remember of her was the last days she spent with us, bed-ridden and devoid of life. Or hope.

She had given up and all she was waiting for was for her time to come. And when the angel of death finally beckoned her, I was left with nothing but the faint memories of the woman who gave me life.

For 18 years I religiously swallowed a concoction of drugs that my mother and grandmother had told me I had to take “for my asthma”.

I did not know I was HIV-positive, but probably those around me — including my friends because people tend to talk about these things behind your back — knew I was unwell.

FLIMSY THINGS

It was not until I went to secondary school that I found out that I had the virus. My grandmother, with whom I started living in Mutula, Mwala, after my mother died, had dutifully brought me the drugs when I was at home.

However, she could not religiously deliver them to my school on time, and so I started skipping the dose and falling seriously ill often.

I was in Form Three when the bombshell was dropped on my young soul. For whatever reason, a massive swelling had developed on my neck, accompanied by a wheezing cough that lasted forever.

I went to a local dispensary but was referred to the Machakos District Hospital, where a doctor recommended that I take an HIV test.

I have always found it hard to explain what went through my mind and body when the results came.

Words are flimsy things when it comes to expressing emotions, and even today I do not think I have the right vocabulary to tell you what exactly I felt.

Allow me, then, to settle for “shocked” or “stunned”. Both words, however, are big understatements.

The doctor then explained to me that it seemed I had been on ARVs all my life, but before he could continue with the usual counselling that accompanies the test, I asked him to repeat what he had just said.

I was not convinced yet that I was HIV-positive, even though the evidence was all around me.

Heck, my life itself, my daily struggles, the daily pills, the constant trips to the hospital, the coughs from hell, the pneumonia bouts... everything pointed to the virus, but I still needed other confirmation, sort of like a final rubber stamp on the verdict.

BLINDED BY RAGE

The doctor obliged and tested me again. Positive. I asked him whether he could do it a third and final time. He obliged.

Positive. I looked at him but saw nothing. I opened my mouth to tell him something but my tongue felt like it had been nailed to the back of my mouth with a 10-inch nail. The doctor must be mad, I told myself. Or maybe the kits are faulty.

And then the tears burst through the reservoir, tears that burnt my eyes with such fury that I could not see anything in the room. For a moment, I was blinded by a rage so intense that, every now and then, still simmers inside me.

And then I got up and went back to school. But even as I struggled with mathematics theories and English constructions and all they teach you in Form Three, I considered it all sheer vanity.

What was the point, I reasoned, of it all when a virus was constantly chewing the life out of me?

My schoolmates, unaware of what was going on in my life, were busy planning life after Form Four: the universities they would like to attend, the boyfriends they would like to meet, the number of children they would like to have, the places they would visit... basically, all those wild things girls talk about when they are full of life and naiveté.

FULL-BLOWN AIDS

I tried to fit in, to be part of the system, to live their dreams and hope with them, but at night when I retired to bed, I pitied myself. I had no future to plan, so who was I kidding with all the rosy plans?

And so one day I decided to quicken my journey off the stage by stopping taking the ARVs. Like my mother, I had lost hope. I just wanted to die. To, as they say in the obituaries, rest in peace.

In my foolish daze, I started flushing the ARVs down the toilet every morning. Somehow, I could not bring myself to destroy all the drugs, so I only flushed away my daily doses.

But, on the days when my conscience overwhelmed by teenage folly, I would swallow one or two pills... just to, you know, feel alive once again.

Because of the irregular way I was taking my medicine, I developed resistance.

Within a few days it got so bad that I plummeted to what medics call clinical stage four, a severely symptomatic stage in which one is considered to have progressed to full-blown Aids.

It is usually said that when you get to this stage, you have only about three years to live.

By now I was walking with the aid of a cane, weighed about 20 kilogrammes, and generally looked very bad.

My head was really big but the rest of my body was scrawny. I could not bear to look at myself in the mirror.

NOT SUICIDAL ANYMORE

By this time I was in Form Four and had to drop out of school, but once at home I went back to regular ARVs, regained my health, and went back to school the next year to complete my education.

After treatment and a lot of counselling, I was put on second-line medication.

A charity, Médecins Sans Frontières, gives me the drugs free of charge, but I have been warned that should I skip the dose and develop resistance again, I will have to be graduated to third-line medication, which is expensive.

Now I consider myself as someone who has been given a second chance at life. The spring is back in my step, the glow permanent in my eye.

My hair has regained its lustre and volume, and I am generally not suicidal any more.

All that is the result of the constant counselling and encouragement I have received from people, some of whom I do not even know personally.

This new phase of my life has not only rekindled my faith in myself but also in those around me.

That, though, is not to say my days are rosy. No, far from it. I still have my own little battles to fight, especially how to overcome the overbearing, judgmental stares and stigma.

A relative keeps telling me that, no matter how hard I try to live a normal life, I will always be that girl who has HIV, that miserable girl who is doomed to life in the gutter.

STIGMA ATTACHED

But what does she know? Should a virus, really, define who I am? Can’t I be me without that HIV appendage always pulling me down?

I mean, why do people find it so hard to view me, first, as a human being, and, second, as a patient who, like the little girl suffering from asthma, only needs care and understanding?

I yearn for normalcy. I wish I could be just the girl next door who loves the outdoors, who does not mind a nice, hearty laugh every now and then, and who wants to be the salt of the earth. But people make it so hard for me to be all that and more.

I, however, do not blame them. Until the social stigma attached to those, like me, living with HIV ends, I will always understand why you bolt out of the door whenever I tell you I am HIV-positive.

A young man, for instance, once approached me for a relationship. He said I was beautiful, that I made him feel nice when he was around me. We had “met” at the one place where love is incubated nowadays — an online chatroom.

When I noticed the chats were going towards the heart, I decided to stop him in his tracks by telling him that I was HIV-positive, but, maybe because of the matter-of-fact, casual, open way I put it, he laughed it off and told me to get serious.

After a couple of days, he insisted that we meet for a coffee date. We did, and he was still not convinced that I was unwell.

Because of the company he gave me, and the fact that I also loved him, we visited each other a couple of times, but I made it clear that we wouldn’t get touchy at all.

MORE HOPEFUL

It was during one of our regular chats that he told me he felt it wasn’t going to work for us, which is diplospeak for “I’m out”.

I told him it was okay, that I understood, and that it was sad that I was losing a friend. It had lasted all of three months, and now he was gone.

What is a girl in my shoes to do? And what is a man who wants me to do? At 27 I probably should have a serious man in my life, but I don’t want to go down that road yet.

Somehow, the latitude of incompatibility has been raised so high by my condition that I reject a man immediately he says “Hi” because I know indulging him would eventually break both our hearts.

Two things occupy me now; a fledgling animation business that the African Centre for Women, Information and Communications Technology (ACWICT) helped me set up after sponsoring me through college, and taking care of myself.

I would like to get married and have two children. It may or may not happen, but I believe that, since God has allowed me to live this far, then He must have a purpose for me.

And with the new advances in HIV treatment I am even more hopeful that I could have a healthy family in the coming years. And hope, I have learnt, is such a beautiful thing!

Sylvia Mueni Munyao spoke to Pauline Kairu ([email protected])