Paralysed woman charts her way out of pain through craft, music

Monicah Muthoni. [Jacinta Mutura, Standard] Apart from the strain as she gets around in a wheelchair, nothing else tells you of the pain, struggle, and agony Monicah Muthoni has endured for the past 13 years. Muthoni was confined to a wheelchair after she was involved in a road accident that killed her younger brother and shattered the hopes of her entire family. As Muthoni, 29, wheels herself out of their cramped house in Tumaini within Rongai, Kajiado County, she cuts a figure of a resilient woman in the face of adversities. On the fateful date, when she was a 16-year-old teenager, Muthoni and her family were travelling from their paternal grandparents' home in Limuru when their car collided with a trailer. Her brother, who was four years old, died while being rushed to hospital. Their father was the one behind the wheel. They all sustained injuries but Muthoni was severely injured since her spinal cord was hard hit, leaving her with three-quarter paralysis. Medically, that means all the body parts below her chest are paralysed. "I was told this is a permanent disability, I can't walk. I can't control my bladder and my bowel movements," she says. Muthoni started using a catheter, which resulted in urinary bladder and bowel complications and consequently caused urethra complications. Medical interventions to enable her to continue using the catheter were unsuccessful and in 2019, she opted to be using diapers to hold her urine and stool. Monicah Muthoni and her mother Eunike Njoki chat outside their house in Tumaini, Rongai, Kajiado County. [Jacinta Mutura, Standard] "I was in school at that time and changing diapers was quite challenging, worsened by the challenge of accessibility. Some toilets were inaccessible and I could end up with diapers for long hours," she narrates. That left her with pressure sores on her buttocks and contracted infections that saw her hospitalised for four months. The wounds are recurrent and she has to treat them occasionally. A specialist doctor has now advised her that she would need to have a bladder diversion through surgery to help her drain the bladder without complications. The procedure termed Mitrofanoff helps people to drain urine from the bladder through a surgically created opening in the belly through which one can urinate by using a catheter. "I was told the tube can be made from the appendix or the small intestines and connected to the bladder," Muthoni says. According to her doctor, the procedure could have lifelong risks. "The complexity of the surgery will complicate my ability to carry pregnancy and to give birth because I can only deliver through Caesarean Section due to the spinal injury that limits vaginal delivery. If the surgery is done, I will have to forgo my desire to have a child," says Muthoni. Buying the diapers is also costly for the family. "A packet of diapers costs Sh1,650 and it can't last even a week but I need a lot of them to prevent getting infections. But I can't afford them because I don't have a job," says Muthoni, adding that she is prone to infections during her monthly periods. According to her, the surgery should be done as soon as she raises the Sh700,000, which has also proved difficult for the family. Monicah Muthoni makes jewelry at her home in Tumaini, Rongai, Kajiado County. [Jacinta Mutura, Standard] She would require her to relocate from her current residence, where she has lived since 1999, due to the unsanitary conditions. Even in the darkest times, she remains unwavering in their optimism. "When the time comes, I could risk getting pregnant with the advice of the doctor but if it's not possible I could adopt a child," Muthoni notes. Even with her condition and the challenges that life has thrown her way, Muthoni is undaunted and she has been the breadwinner. Muthoni is in resin crafts business, and also makes jewellery and bead works which she sells to friends and in churches to support herself and her mother, Eunike Njoki, who also went blind years after the accident and is also losing her hearing ability. The mother was in her business selling Githeri and charcoal in July 2019 when she suddenly felt a serious pain in her eyes. She went to the hospital and was given medication to clean her eyes. Later, she went for a pressure review where she was advised to wear glasses and given medication. However, she soon stopped seeing clearly and by December of the same year, she lost sight in one eye, and in July 2020, she lost sight in the other eye. Muthoni's father died in 2020 after a sudden illness. Monica Muthoni displays some of the ornaments she has made for sale to earn a livelihood. [Denish Ochieng, Standard] "I depend on friends and also basketball to earn a living. I have a younger sister who helps me at home but she has a child to take care of. We have to help our mother because she can't do much by herself," says Muthoni. Muthoni holds a Diploma in ICT but she says securing a job has been an uphill task for After the accident, their landlord has been gracious enough to allow them to stay rent-free. Even with the experiences and difficulties, Muthoni found a purpose in serving in a group of people living with disabilities. The Self-help group known as Wonders of God uses gospel music to tell their story of trials, tribulation, triumph and hope. "Due to my disability, I often found myself staying at home with nothing to do. However, after joining this group, I became more outgoing and active in society," Muthoni says. She is the group's secretary and responsible for organising the group's activities which she says has given her a sense of purpose, responsibility and pushes her to do her best every day. Being part of the group has helped Muthoni gain access to financial support to meet her medical expenses, start a resins crafts business and make many other strides including serving God through music.

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