Hope for Joe Mudukiza after ‘Why I want doctors to end my life’ story
Joe Mudukiza during the interview at his house in Rongai on February 13. He was diagnosed with sickle cell at the age of two.
What you need to know:
- "Living with sickle cell is strange; you wake up tired and retire to bed the same way even when you have done nothing. When I get a crisis, it feels like someone is ripping off my skin and then inserts broken glasses into my veins."
- "When this happens, I can’t speak. When I try to talk, every word that comes from my mouth feels as though I am chewing razor blades and swallowing them. Every word spoken is equivalent to swallowing a hundred razor blades. When in pain, I just sit and watch, or sleep. When pain seeps into my bones, I lose my ability to think straight. It interrupts my thought process."
The wheels of journalism can only take you far, but when they take you to a man whose only wish is to die, you take a detour to examine the meaning of life.
While pain is personal, telling Joe Mudukiza’s story transferred a tinge of agony to most people who read and watched our reporting on a man whose sickle cell anaemia has destabilised his life to the point that he wishes to die.
After the story went up on Tuesday last week, reactions started streaming in and to this day people are still talking about the story of Joe. There was pity, love, hate, harsh judgement, and a thirst for knowledge on the disease as well as euthanasia.
Joe’s phone buzzed with calls from people he had never heard of and they all had different intentions. Of all the proposals to help him, Joe tells Healthy Nation that religious ones topped the list. More than 300 people reached out asking him to go seek help from religious leaders.
A Catholic priest wrote an encouraging letter to him. A shaman proposed to help him. A nun prayed with him. Hundreds of people online and offline also offered to pray with and for him.
“Tell him to hold on to God,” they wrote to Joe. “One person told me to stop taking medication and go to their church for healing. Hellen, I know God at a personal level, I have a relationship with him but is it logical to be told to ditch your medicine really?” He asks.
Kenyans on Twitter were wondering whether it’s time to legalise euthanasia, but this question remains unanswered.
For patients living with sickle cell disease, as well as parents whose children have the condition, the big question was where will their hope come from? Joe presented just a fraction of what they go through everyday when they get a crisis. It could be worse for some, but what should the government do to alleviate their daily struggles? Joe tells Healthy Nation that he got a call from the Health ministry officials, who admitted to have failed him (and people with chronic illnesses).
“They asked me to think about my decision, but they offered to help me without coercing me which direction I should take. They said they will offer me psychological counselling, medical help and spiritual help and that if that won’t make my situation better, I am allowed to make my decision,” he says.
A team from the Kenya Hospices and Palliative Care Association visited Joe in his house and promised to walk the journey with him. Individuals too reached out with willingness to help him.
With the decision now in Joe’s hands, he says the ministry proposed to have him as a mini-ambassador for people living with chronic illnesses.
“The ministry is willing to support and change how the system works for people with chronic illnesses,” he says.
Since Joe has a child and has adopted five others, he also received school fees and a scholarship offer for the children but, as we write this, it remains a promise that is yet to be fulfilled.
Joe says his mum said she will support him till the very end, except when he decides to go the euthanasia way in Belgium.
His siblings have let him make the decision, but they remain supportive.
Has Joe changed his mind about euthanasia? “I agreed with the Health ministry that they give me time to try whatever they have in mind, and that they are willing to listen to me. I have a month to check on my quality of life with their help, if nothing changes, then I am open to choose whatever route,” he says.
