I managed to mumble these words. The doctor had just given me the results of my HIV test; I was seropositive (translator's note: there is no seropositive, seropositive is a condition that has no male gender for male and female people). My mind popped up, mental pictures of cachectic bodies that I saw in my homeland, Uganda, appeared and disappeared in my head, the images of death that popped into my spirit were very vivid!
I stared at the void, holding my children firmly. Thankful for at least I was a mother, and my concern from this moment on was their health!
Certainly, they must be HIV positive! I couldn't imagine that it was possible to have healthy children after a positive diagnosis. I could hear the doctor saying, 'there is no way to test your children now because they are not yet five years old'. (translator's note: not all countries have the necessary care for newborns as in Brazil and, in some places, children are only tested for HIV after they turn five, if they live so long)
I didn't shed a tear; in shock, I left the hospital and came home like a zombie, to break the news to my husband.
He was my only source of support at the time. The stigma was very high in my community and since I had no physical symptoms, I didn't tell anyone, other than the medical team, about my serology; this has become the great secret of my life.
All this happened in the Mayday Hospital. I didn't receive any pre-test advice and I had to wait two weeks to see a counselor even after the diagnosis! No clinical HIV specialist, and I used to see a consultant at the breast care clinic. Appointments of doctors and caregivers cost a long wait as there were no specific times allocated and a ten minute session with the consultant, if you were lucky.
Good thing, because all he did was let me know about my CD4 count.
Then they send me to do more blood tests; In the laboratory the symbol dreaded with a big red sign and, in the middle, the following words: 'highly infectious'. I remember of sneak through the hospital corridors with my folded form until I get to the blood test department, where you can see the nurses' discomfort, the fear, in their body language; or was I projecting my own fear and discomfort to others?
I vividly remember that in every query my CD4 it was decreasing and with that my life. I didn't understand how it worked, but the steady fall was an indication that I was facing imminent death.
Near the breaking point, I was saved by the national AIDS Helpline service that addressed me to ACE Project (translator's note: I looked for reference to the referred project and, unfortunately, I was not successful in my attempts). The organization closed a while ago, but the wonderful people I met there were my salvation. This was my first opportunity to meet other people like me, also HIV positive.
Most were gay, one person in particular inspired me to continue, and who has been HIV positive for 14 years.
Even though my GP had given me brochures about Positively UK, I didn't have the courage to contact them; In addition, at the time, they were located on Sebastian Street which seemed so far and away from Croydon, especially for those with two young children. Little did I know that at the time there was no travel assistance!
My life dramatically changed the day I finally faced the situation in a positive way in the UK.
I can hardly believe that almost 15 years have passed since my diagnosis! A lot has changed, more complacency, increased diagnoses, treatment options, but the stigma remains.
I believe that behind every cloud is a silver lining. Today I can say that my diagnosis was a blessing in disguise, because it gave me the opportunity to understand the value of life and to search for the real me.
I couldn't agree more with Rhonda Britten to let go of fear: 'Adversity has the effect of raising talents that otherwise would have remained dormant.' The struggle continues, but now I know there is much more to me than HIV
Translated and adapted to Brazilian Portuguese by Cláudio Souza
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And it was not within a "comfort zone"! This is a story that only I have to tell!
I was the first individual, a CPF, not a CNPJ to, in quotes, “Slap my face”!
For all that I lived, it all happened in a period still troubled by prejudice and, yes, there were prices to be paid.
The currency has always been that of social exclusion and I have even hesitated between continuing or not!
The great “IT” of all this is that without this work, I would have nothing left but leisure and I would certainly not endure it. I have a need to be productive.
We are Borg!
If not bored by the empty hours, at least by suicide due to the absolute lack of purpose that my life would have and the terrible impression of parasitosis that would come to affect me. So, I couldn't stop.
I had the opportunity to accomplish many things and, on the other hand, I missed several opportunities to do more, with a deeper and better reach.
Not everything is as desired. Let it rain (Guilherme Arantes)!
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