How I lost my hearing ability, family to Aids
A wave of emotion sweeps through his eyes. His Adam’s apple rolls up and down his throat.
Joseph Muthuri Raiji, 57, has experienced a lot in his 19-year journey with HIV first, then tuberculosis and then loss of hearing.
Muthuri, who hails from Nkubu in Meru County, can move a crowd with his testimony of the trials he has gone through but emerged triumphant.
There are four episodes in this chapter of the story of his life: Testing positive for HIV, contracting tuberculosis, loss of hearing and losing his family.
“On the night after I tested positive for the disease, I couldn’t sleep. My wife sensed that something was wrong,” he said, revealing that they cried together, though it took several days before he opened up to her about his status.
He had not intended to find out about his status. It was entirely by accident.
As any good husband would do, he had accompanied his wife to a health facility for prenatal care when a nurse requested to test both of them for HIV.
“My wife excused herself, and stepped out as I took the procedure, which I thought was just fine looking back at my lifestyle but came out positive,” he said ahead of today’s World AIDS Day celebrations locally being marked officially in Kinoru Stadium, Meru. He said he didn’t have any worries to warrant refusal to be screened.
However, when the results came out, he was surprised and confused at the same time. He was not one of those men who are unfaithful to their wives, at least according to him.
After the test, his wife was eager to know the outcome, but Muthuri politely told her that the results were his, and asked her to go in and have hers done. Hers turned negative.
“I didn’t disclose to her that the result came out positive but from my facial expression and body language, she knew that all was not well and at night she found me crying. I thought she was asleep, but she was not. I think she was disturbed just like I was,” the TB champion with The Stop TB Partnership disclosed.
The journey to ascertain the truth, and indeed an unfolding new chapter for the couple - that had lived happily - with two children, commenced.
“I was teaching in a school outside my home, and I used to come home during weekends. But one day, shortly after, I got a shock of my life. I was informed in the middle of a lesson that I had a visitor. Who was there? My wife,” he said, revealing that she told him that she had gone for the prenatal clinic and she was tested and informed that she was negative and therefore the nurse who tested us must have made a mistake on my side.
He believed her, and what followed was one visit after another for testing, and all of them turned out to be positive.
“And by the time we accepted the results, we had visited five hospitals. This happened to be the time when information on HIV was limited,” he said, noting that this gave him the courage to discuss it openly, and he told her words that could haunt him today.
“I think you can leave,” he told her, believing that his status was a death sentence, and he didn’t have anything better to offer. But his wife didn’t find this unusual but permitted him to go public about it.
Life went on and his wife started accompanying him to various places in search of information and even inspired him to join several support organisations and communities.
He even embarked on raising awareness through churches, schools and markets, while battling stigma.
“In 2013, she shocked me again. She told me she wanted another baby. I could not believe she was serious, but she insisted, so we had a baby, who tested negative,” he said.
In 2015, another health issue crept in. He had a TB co-infection, a disease which people living with HIV are susceptible to.
For Muthuri this was another episode he can’t forget because it was accompanied by several negative moments including open stigmatisation.
“The years between 2016 and 2020, were the most difficult for me,” he said.
These are the years when Muthuri was forced to use diapers for four months to handle a bowel problem since he could not stop urine as his sphincter muscles had been compromised.
During this period, he also lost his hearing ability, which deteriorated into deafness due to Kenamycin, an injectable drug for the treatment of drug-resistant (DR)-tuberculosis (TB).
“This is the period also when my wife deserted me and left with the children,” he revealed.
He is wondering why health experts are not telling TB patients about the serious side effects of the drug.
“Why are they silent on this drug, yet it has caused deafness to many TB patients and continues to destroy lives?” he posed.
He recalled incidents where he was stigmatised at home until he had to flee to his sister’s home in Isiolo Town.
“There’s nothing as bad as when a family member, the person who is supposed to support you stigmatizes you. One day I made a decision to leave my home. I called my sister and inquired if she would put up with me, she gladly accepted, and I left,” he said.
On another occasion, a fellow passenger – a local administrator – asked the driver whether he had transformed his matatu into an ambulance.
Now he is determined to turn around his life as he counts the 2016-2020 period as a wasted time.
“After my wife took away everything that we had built together, I have been trying to re-organise myself,” he said.
He wants to start a poultry business.
“Personally I haven’t had many problems that I can say are as a result of the virus. Safe for the TB infection, I haven’t had many opportunistic infections,” he added.