‘Matankiso’s story of life inside a ravaged body

MATHATISI SEBUSI

MASERU – Immobility, deteriorating health and hunger are what ‘Matankiso daily wakes up to, but nothing breaks her heart more than watching her 11-year-old daughter failing to enjoy her childhood because she has to take care of her – change her diapers every time she has soiled herself. Aged 36, ‘Matankiso’s life took an unfortunate turn five years ago after being diagnosed with tuberculosis meningitis.

A headache she thought was temporary, and possibly caused by her pregnancy and accompanying stress, did not only rob her of mobility but also a chance to be the mother she had envisioned to be for her daughters. She has always wished to be the best mother the world could ever offer and to afford her children a comfortable life they deserve; ironically, her eldest daughter, only 11-years-old has become the family’s caretaker.

‘Matankiso was born and raised in Koro-Koro, Ha Mofoka, in the Maseru district. She was married in Mapoteng, has two daughters aged 11 and five but her paraplegics has caused a rift in her marriage and she had to go back to her mother’s house where she is raising her daughters single handedly. In 2016 when she was pregnant with her youngest daughter, she suffered from a headache that was later diagnosed as tuberculosis meningitis. She got hospitalized for months at the Queen ‘Mamohato Memorial Hospital (QMMH) where she was put on some treatment which she believes was for the tuberculosis meningitis.

It is also during this time that she experienced abdominal pain and discomfort when she had to urinate. After some time experiencing the discomfort and pain, one day she woke up weak, struggling to get out of bed while her feet could no longer hold her. She says when the doctors were notified of her condition a Caesarean Section was immediately performed and her premature baby was delivered.

After the baby was born, ‘Matankiso could no longer walk or feel the bottom part of her body; she was transferred to Bloemfontein for further treatment. On her arrival at Bloemfontein, she was told that the medication she was prescribed had paralyzed her and was immediately taken off the treatment. However, it was already late for her as by this time test results revealed her condition was irreversible – damage was already done. The results showed that there was damage on her spinal cord to an extent that she will never be able to walk again.

‘Matankiso believes she was wronged by the QMMH medical team that was helping her. She says on her return from Bloemfontein, QMMH discharged her without any explanation on her condition, reference to any later check-up visits or anything that could help her situation. ‘Matankiso had walked herself into QMMH but got out disabled. She points an accusing finger at the hospital’s medical staff for the treatment they gave her, but also understands and is at peace that damage has already been done.

All she had hoped for was remorse and an explanation from the medical team that treated her – but says instead her inquiry was received with anger and an immediate discharge. “I know that they gave me the wrong treatment that paralyzed me. I went there walking on my own two feet but came back unable to walk at all. Since the damage has been done, all I expected from the hospital was an apology and explanation, but every time I asked for clarity I was answered with so much anger,” a broken hearted ‘Matankiso recalls her time at the QMMH.

Since 2016, her life has never been the same. She used to get food parcels from the Ministry of Social Development but that has since stopped, with an explanation that the ministry has run out of food. She now survives on handouts, months after the ministry deserted her. Since 2016 to 2020, all she has had to do is stay in bed every day and night, she had even developed bed sores; until in 2020 when a good Samaritan donated her a wheel chair.

Since she returned home she relies on diapers to relieve herself as she cannot at all manage to control movement of waste from her body. When she has run out of diapers, ‘Matankiso uses torn fabrics that have to be changed every two hours to ensure that she stays clean and dry. She feels helpless in her situation, not because life has been unfair to her but because her now 11-years-old daughter is the one responsible for ensuring that her mother’s diaper is changed every day and her fabrics are clean.

‘Matankiso explains that her daughter started taking care of her while she was only eight years old. During that time when her peers were enjoying school and playing around, little Palesa* was always in a hurry to come back home from school to change her mother and ensure that her mother and little sister are taken care of.

Articulating the daughter’s every day routine especially on school days, ‘Matankiso says the little girl wakes up at 4:30am, takes a bath, bathes her younger sister who is now 5-years-old, ensures that there is enough food for them and their mother for the day and then attends to her mother, changes her mother’s diapers and her bedding and helps her bath. “After school, she rushes home worried that my diaper needs to be changed and she then cooks for us,” ‘Matankiso continues with tears welling in her eyes.

Nothing has changed to date. Little Palesa is still the caretaker of her family. The only improvement the family has seen is that the mother now has a wheel-chair and Palesa is now able to drive her outside for some fresh air. Palesa has withdrawn from playing with her peers. Her life revolves around her mother and sister. Her grades have dropped and is this year repeating Grade 5 for the second time. Her mother says most of the time she gets lost in her own world.

Before ‘Matankiso got paralyzed, she used to do peoples’ hair and do odd-jobs so that her children do not go to bed on empty stomachs. That has changed, her children today are used to going to bed hungry and only get to eat when people of goodwill have helped them with some food. Apart from being food insecure, ‘Matankiso health is worryingly deteriorating, she has developed bed sores and does not afford medication. Failure to afford diapers does not help her situation also as she spends most of her time wet with unchanged fabrics, especially when the children are at school.

She only gets to change her clothing in the morning and after school when Palesa is back from school. When she is well she washes her fabric diapers but on days when her health fails her, Palesa is the one that washes them even when she is on her monthly periods. She says this breaks her heart. Going to bed and getting out of bed is a challenge for the sick mother, and little Palesa has to always devise ways to help carry her mother in and out of bed.

She has not received any social services meant to help people in need, but watches from the sidelines while people in her village enjoy the services. She is practically alone with her two daughters and has to survive on handouts. With all her sufferings, ‘Matankiso says above all else she daily prays for a reliable supply of food, diapers and a house she could call her home. Upon hearing of ‘Matankiso plight the social development ministry, through Principal Secretary, ‘Mantšeki Mphalane, confronted the ministry’s officials working in Maseru for answers – and she established that indeed food did run out to continue assisting the sick woman. She, however, noted this happened quite a long time ago.

Mphalane has arranged for ‘Matankiso to receive her food parcels and disposable diapers, and promised that by the end of the week all will be taken care of. Speaking on the family’s psychological being, psychologist Makhali Mokhu noted that the situation ‘Matankiso is without doubt traumatic; and not just for her but for Palesa as well. He said the situation has caused the little girl to experience mood affections, behavioural change and as a result her interpersonal relationships have altered.

He said this happens because she hasn’t matured mentally to positively adjust and cope with the prevailing condition of her mother. “This situation also affects her emotional stability in the sense that she is not equipped with necessary skills to marvel emotional intelligence. As a minor she is already playing a “parent-child” role that comes with tremendous responsibilities.

She has already jumped the growth stages without being mentored or enjoying all of them and therefore experiences a lot of confusion as to how to adjust to the current one. This condition also has the possibility to result into many disorders like conduct, anxiety disorders, panic attacks and excessive depression,” Mokhu further notes.

He further states that the situation at this household is bound to also affect ‘Matankiso psychologically, as every parent wishes nothing but the best parenting for their child and proper growth that involves playing, schooling, socializing and optimal development. So, seeing that she is incapable of all that due to her condition she goes through a severe depressive episode.

He said if assessed, psychologists could come up with many symptoms like guilt, memory affection, affected eating patterns and altered sleeping habits. Mokhu articulates that ‘Matankiso might also be experiencing feelings of guilt for depending entirely on her child, loneliness as she can’t socialize anymore and be part of the community, thoughts of suicide because she is already going through post- traumatic stress.

He says the long-term impact of all these on Palesa includes learning disorders which are likely to develop because the child can’t think properly even when at school or adapt to school demands but keeps on thinking of her mother’s situation, dodging school to provide for her family and this could doom her future.

He continues that another impact is the possibility to be married at young age, making uninformed decisions and early alcohol and drug use to negatively cope with the family’s condition and avoidant personality disorder when she grows up. Mokhu adds that the impact on the mother could include major depressive due to the trauma coerced by the paralysis, feelings of worthlessness, sadness, loneliness and suicidality thoughts because she sees herself a burden to her kids and worthless.

With these stated, Mokhu indicates that there is hope to rescue the family from the dilemma; in that the family needs to be given psychosocial support services. “It would be vital for the mother because it will improve her mental health to start regarding herself a potential parent to her children who can offer psychoeducation about life. She also needs physiotherapy to keep on training her body,” Mokhu further says.

He, however, pointed out that the first step is offering psychological intervention in order to open up ‘Matankiso’s mindset. “She also needs assistance from respective institutions since she can no longer provide for herself. As for the child, she needs to see a professional helper like psychologist, therapist to assist in recovering her mindset and clearing out what she is going through. At school they need to be aware of the family situation and then be equipped with how to assist the child.

Family therapy would be essential in the sense that it covers all the family members and teaches them about the condition, understands proper approach for the family,” Mokhu concludes.