Joe Mudukiza’s journey through pain and resilience
Joe Mudukiza during an interview at Nation Centre building in Nairobi on December 23, 2024.
The last time I sat down with Joe Mudukiza for an interview, he was teetering on the edge of despair. It was only February, but the weight of his pain had crushed his will to endure another day.
Joe had written numerous emails to the Association for the Right to Die with Dignity in Belgium, seeking their assistance in ending his suffering once and for all.
His choice was controversial- unconventional by African cultural standards and illegal under the constitution. When Joe shared his wish to die, he was met with scorn, and judgment, and stones were thrown at him that only deepened his anguish.
That’s when we reached out to him, and the story we published sparked a wave of mixed reactions.
Now, more than 300 days later, Joe hobbles into the Nation Centre, leaning heavily on a crutch to support his right leg. Accompanying him is his caregiver, Gad Mburu. Gad stepped into this role after his sister, Joe’s neighbour, introduced him to Joe’s plight. Having just completed high school in 2023 and unable to afford further education, Gad embraced caregiving as a pro bono mission.
In his Instagram bio, Joe calls himself a sickle cell champion and what a fight he has put in for decades, and still is.
Counselling session
He has just come from a counselling session in town. He appears happier but his speech is frail. He has a big bandage on the left side of the neck and he covers it with a crocheted scarf.
“How have you been?” I ask him.
“I was better a few months after the story was published, and then things started worsening,” he says.
“So many people called me, some came to my house, others wanted to just take a photo with me, others promised to help but vanished, but here we are today,” he says.
The good news: Joe is alive, and more importantly, he now wants to live.
I notice that he struggles to turn his neck. He has to shift his whole body to move to make a movement that only the neck can do.
“I can’t move my neck like everyone else does. It’s painful,” he says, his voice a mix of acceptance and determination.
I have kept tabs on Joe ever since I interviewed him earlier this year, and when the story went up, some of the things he wished for that could stop him from considering euthanasia as an option were almost met. Unfortunately, people only said words and did not keep them –it was like sweet incense that vanished into the air after the words came out of their mouths.
“Many reached out to me In February, some called me the devil because I wanted to go for mercy killing, others called to encourage me not to go, and people stared when I walked around my neighbourhood but, I got a lot of positive energy as well,” he says.
Some officials from the Health ministry reached out to Joe with a promise of helping him get the urgent treatment that he needed as well as offer him someone to give him therapy sessions. At the time, he had had countless pain crises that come with sickle cell disease and his right hip was deteriorating, causing him unbearable agony. To this day, no one from the Health ministry has ever followed back.
“I have paid Sh1,000 to see the therapist today, sometimes I don’t have that money so I skip the sessions most of the time,” he says.
Central venous catheter
One of his wishes when I interviewed him in February was to get a central venous catheter (CVC) placement that could make it easier for him to infuse pain medication into his system. His veins were hard to find and it was difficult to inject pain medication intravenously.
In the past few months, he has had three CVC placements, two of which failed and led to serious complications.
“This bandage on my left side of the neck is because of a botched CVC placement. It was removed but I noticed something weird after some time. I started seeing things that appeared like maggots coming out of the area that had the wound. That scared me, so I went to the hospital and thankfully the damage was not so bad,” he says.
He stayed with the third CVC for about 20 days before the doctor recommended having it removed.
In between his struggles, it is only one lady that called him that has stood by him.
“She has been like my mother in the city. She has taken me to hospital countless times. She has paid my bills. She has given me assurance that I will be okay. She has taken loans because of my hospital bills. She has come to my house when I get pain crises,” he tells Nation.
Sickle cell
Joe says that the lady even went to hospitals encouraging them to have programs for sickle cell, but she was always turned away.
Unfortunately, the lady ‘Samaritan’ has been unwell for some time now, and Joe is now left under the care of his caregiver Gad who has no source of income.
It is Christmas day, and if Santa were to come to Joe’s rescue, all he wishes for is to be pain-free.
“My hip is still causing problems. It feels as though I have nails joining my hip area and any time I walk, they prick and I feel the pain. The only time that I am at peace is when I sleep and, unfortunately, I barely catch a wink,” he says.
“Should I get a hip replacement, most of my pain problems will be solved,” he adds.
In developed countries, sickle cell disease is treated using bone marrow transplants or stem cells. That is still out of reach for most African countries.
In Kenya, under the new Social Health Authority, the government has set up an Emergency, Chronic and Critical Illness Fund, one which is still not operational. In a recent interview with Nation, Health Principal Secretary in charge of Medical Services Harry Kimtai said that the Emergency, Chronic and Critical Illness Fund was put on hold because of the stalemate caused by the quashing of the Finance Bill 2024.
“Most people with sickle cell live below the poverty line. I have seen so many people die because they cannot afford the treatment. My drugs for just three days cost about Sh5, 150. Do you think everybody can afford that?” he quips.
“Sickle cell drugs are expensive, I wish that the government could subsidize their cost because most people are losing their lives,” he adds.
Joe says that he has lost most of his friends to suicide. His sickle cell support WhatsApp group has become a place of doom since most people are dying.
“We have so many funeral contributions now for people who were living with sickle cell and died. When shall this end?” he asks.
When Joe was still energetic, he made a petition to parliament to ask them to set up legislation that would help in subsidising sickle cell medication and also have patients with sickle cell get special clinics within hospitals. His petition did not go through.
“I once was in a hospital in the village and a sickle cell patient died while queuing to get medical attention,” he says.
The Belgian organisation that he had reached out to for the euthanasia option also read Joe’s story and still followed up to find out whether he would be interested.
“All I wanted was relief from pain. So I told them to put that on hold until I run out of options. If I get that relief here, then there is no need to go abroad to die, but if I don’t…” says Joe.
hshikanda@ke.nationmedia.com
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