I hope to die from old age, not HIV

Youths marching to Mbaraki ground in Mombasa in marking the World Aids day that was led by first lady Margaret Kenyatta on December 1, 2013. Nowadays, when I counsel people who have just tested HIV-positive, I tell them to prepare to live. If there is one thing I am thankful for, it is that this virus is manageable. FILE PHOTO | LABAN WALLOGA | NATION MEDIA GROUP

What you need to know:

  • I can manage lipodystrophy. I cannot say the same thing for some deranged man who thinks mass murder is the superhighway to martyrdom
  • Nowadays, when I counsel people who have just tested HIV-positive, I tell them to prepare to live. If there is one thing I am thankful for, it is that this virus is manageable
  • It is my life. It is up to me to do my bit. Take my medicines. Protect my partner. Live positively. My life expectancy is my job

In mid-July, about 100 HIV/Aids researchers lost their lives after their plane was shot down in Eastern Ukraine. These were some of our best virology minds, who were going to the 20th International Aids Conference in Melbourne, Australia.

I have attended countless Aids conferences. I could have been on that plane. My thoughts and prayers go to the families of these researchers.

Mortality and thoughts of mortality are some of the post-seroconversion issues that many people living with HIV, especially the newly-tested, deal with.

These thoughts may also come when an “old salt” is recovering from an opportunistic infection. Although they know they will get through this the way they have got through other bouts, there is still that unnerving voice of doubt that chips away at their mountain of faith.

DISEASE CLICHE'S
I am an old salt. I am no longer afraid of opportunistic infections. I have learnt, through decades of experience managing this virus, that they come and go. What I am afraid of is insecurity.

I can manage lipodystrophy. I cannot say the same thing for some deranged man who thinks mass murder is the superhighway to martyrdom.

In the first instalment of her memoir, A Diagnosis, Jenny Diski shares her initial reactions after her cancer diagnosis: “Under no circumstances is anyone to say I lost a battle with cancer. Or that I bore it bravely. I am not fighting, losing, winning, or bearing. I will not personify the cancer cells inside me in any form. I reject all metaphors of attack or enmity in the midst, and will have nothing whatever to do with any notion of desert, punishment, fairness or unfairness, or any kind of moral causality. But I sense that I can’t avoid the cancer clichés simply by rejecting them.”

Every medical condition has its set phrases. HIV also came with clichés, most deathly. Skull and crossbones. I always pictured being buried the way we have seen the interment of people who have died from the Ebola virus: wrapped in plastic sheets, body being dumped inside an unmarked hole, without dignity.

In our group therapies, we referred to the virus as, “my HIV”. You would, therefore, hear someone saying, “This HIV of mine hasn’t allowed me to sleep peacefully for the past four days.”
Strange bedfellows indeed. This was our way of making light of our situation.

I later realised the error of this mindset. I could not be released, at least emotionally, from something I had professed as mine. As long as it was “my HIV”, I would be in shackles.
MEMORY LIBRARY
In the nineties, we had a Memory Book project. It was a coping strategy, especially for mothers living with HIV. Basically, this was a book with family pictures, a family tree, and other kinds of information to guide your children after your death.

With the longevity of people living with HIV at an all-time high, we will each need a Memory Library, if not a couple, to keep track of all these memories.

Many of us are going back to school, getting married or remarrying, and buying property instead of constantly thinking about death certificates.

Nowadays, when I counsel people who have just tested HIV-positive, I tell them to prepare to live. If there is one thing I am thankful for, it is that this virus is manageable. Back then, we would second-guess our white blood cells through myriad therapies.

It is about living one day at time and getting through one opportunistic infection at a time. As long as you take care of yourself, then death will come at its own time, and it may not even be HIV-related. I am hoping mine will be from age-related complications.

ZERO AIDS-RELATED DEATHS
Linda Mafu, the African director for the World Aids Campaign, once said, “The potential for creative, connected, and meaningful campaigning is really exciting.” She added that her organisation would focus on zero Aids-related deaths, and that “getting to zero is a must”.

Getting to zero HIV-related deaths was a mirage two decades ago. The pervading message, even in Ministry of Health advertisements, was mortality.

All the talk centred on Aids equals death. I imagined that living positively could only happen in the hereafter. I know we are fond of passing the buck to the government, but getting to zero is not the government’s job.

It is my life. It is up to me to do my bit. Take my medicines. Protect my partner. Live positively. My life expectancy is my job.