'Blindness did not stop me from being a great mother'

Pauline Mwanzi and her daughter Linda Bugusta, who has cerebral palsy, during the interview at their home in Mukuru kwa Njenga, Nairobi on January 25

Photo credit: FRANCIS NDERITU I NATION MEDIA GROUP

What you need to know:

  • I long for the day I will undergo a corneal transplant surgery to recover my sight. Restoration of my vision will allow me to work and to provide for my family and to relieve my husband.
  • Like other children, ours deserve some comforts. Especially our firstborn. Until then, we will press on, fuelled by determination and the enduring power of love.

“My name is Pauline Mwanzi. I am 38 years old, a wife and a mother of four children. I was born and raised in Nandi County, where I lived a relatively happy life as a child and teenager.

My journey as an adult, though, has been one of unexpected twists and turns. Of unending anguish and continuous search for hope. My firstborn daughter has cerebral palsy. I am blind. While this is not the life I imagined, I have made peace with it. My journey begins in 2001 when I met my husband, Geoffrey Khamadi. Our meeting was purely by coincidence, our circumstances seemingly connected by a common fate: poverty.

Blind mother taking care of child with cerebral palsy

As his family’s firstborn, Khamadi had just come to Nairobi to look for a job and provide for his widowed mother and five siblings. At the time, I was visiting my elder sister in the city. I had recently dropped out of school due to lack of school fees.

He was a dashing young man. He said he was attracted to my good-natured and calm demeanour. First, we became friends. Soon we fell in love. From then on, things moved fast.

We moved in together that year, convinced that our union was part of a divine plan. Soon I was pregnant with our firstborn daughter. We were excited about the prospect of becoming parents. But neither of us knew what lay ahead of us. 

Eight months into my pregnancy, I fell sick. For two weeks, I was in and out of hospital. Soon, labour pains hit and progressed quickly. I ended up giving birth at home in 2002. Concerned about the pre-term birth, we went to the hospital. The doctor, though, assured us that all was well. Besides, the baby was healthy and active.

As time passed, however, I noticed that my daughter’s development was considerably slower than other infants’. While other children her age were learning to sit, my daughter, then about seven months, was weak. She would roll over whenever we helped her to a sitting position.

Concerned about this missed milestone, we went back to the hospital. Again, we were assured that all was fine. But she did not learn to sit.

Our attempt to use traditional medicine on the advice of our grandparents was futile. As she grew older, the condition became more apparent. When she turned one, she was officially diagnosed with cerebral palsy at Kangemi Health Centre.

We immediately enrolled her in physiotherapy to improve her movement. Owing to financial constraints, though, we eventually dropped from the programme.

Meanwhile, I developed eye problems. I would experience unusual and prolonged aches. For one year, I visited multiple eye clinics with no help. My eyesight deteriorated. It was strange because I had never had eye problems growing up. No one in my family did. I feared I might end up blind.

The problem started with a corneal ulcer on my left eye. I was informed the condition was untreatable. With time, the disease spread to my right eye. My eyes were bloodshot most of the time that people would tell me to avert my gaze because they felt uncomfortable.

With eye problems, impending blindness and an infant with cerebral palsy in tow, we spent most of our time in the house as my husband went out to search for the family’s sustenance.

Some of the doctors I saw at the time recommended that I travel to India for treatment. But with our financial circumstances, this option was off the table. I continued to take different medication, including traditional remedies, as my situation grew worse.

I lost my sight completely in 2004.

With a baby that required constant care support, my challenges multiplied. Laundry, cooking and changing nappies suddenly became daunting. I would often burn my fingers in the kitchen. I was forced to relearn what I had always done with ease. When I conceived my second child, the challenges grew twofold.

But the challenges at home were somewhat bearable. What was not was the isolation we faced from our neighbours. Some wanted my husband to abandon me. But being called a ‘witch’ because of my blindness and my daughter’s disability was a punch in the gut. I became suicidal. But I was determined to live for my children. We relocated to a different neighbourhood.

While we had broken the chain of stigma by moving, we were unable to shake off our financial constraints. Our money problems mounted. We struggled to pay rent, school fees and to provide for our young family. The threat of eviction was ever-present, and my husband took loans to cover immediate needs, plunging us into a cycle of debt that remains to date.

Guilt gnawed on me as my husband struggled to shoulder all the responsibilities. But with my blindness, I was helpless. I tried doing laundry just to support my husband, but people could not trust a blind washerwoman. 

Thankfully, my husband is understanding. He stuck by me and our family. We went on to have two more children together. 

Raising a child with a disability is trying. You cannot leave them alone. When you consider my blindness, the equation becomes more complicated. As a parent, you are constantly insecure. I fear that someone might sneak into the house to assault her. Whenever I need to step out, I must lock my daughter in the house.

When she turned 18, we struggled to obtain a national identity card for her because taking her fingerprints was difficult. Some officials wondered why we needed an ID for her. I was hurt. We were able to get it in the end.

My blindness has not shifted my outlook in life. In any case, it has heightened my sense of self. I am a patriotic and proud citizen. In the last election, for instance, my husband walked me to Mukuru Kwa Njenga Primary School, where I cast my vote.

Most importantly, I am a devoted wife and mother. My familial responsibilities have not changed. I cook for my family, clean for them and take care of my daughter.

Acceptance has been a big part of my life. Accepting my fate and agonies. I take pride in having a good husband; a man who offered the weight of his family. I rarely leave the house due to my blindness. But I have neighbours I can count on. I am glad they accepted me and my daughter. I have their full support.

For me, church is a place of solace and hope. It has offered me a sense of community and reassurance. Every Sunday, my son and I hold hands and walk to church together. 

My biggest joy? Watching our children grow. Our second-born child completed high school last year. Our thirdborn is currently in high school. Our lastborn son is in junior secondary.

This has not only been a battle with blindness and a disability in my family. It has been a journey of resilience for us. Our endurance has been tested repeatedly, but we have persisted in the hope of a brighter future. Optimism drives us.

I long for the day I will undergo a corneal transplant surgery to recover my sight. Restoration of my vision will allow me to work and to provide for my family and to relieve my husband. Like other children, ours deserve some comforts. Especially our firstborn. Until then, we will press on, fuelled by determination and the enduring power of love.”

Corneal ulcer and how it can lead to blindness

According to Dr Victor Opiyo, president, Optometrist Association of Kenya

A corneal ulcer is a sore in the cornea that is generally caused by a bacterial or viral infection, or by other reasons. The infections come about due to bacteria, viruses or eye trauma. They can also result from fungi. For instance, a farmer goes to cut nappier grass without protective gear, and a piece of the grass strikes his eye and raptures the cornea. An eye sore could come about. 

Corneal ulcers are also common among people who wear contact lenses, and people with severe dry eye syndrome. Symptoms include blurred vision, light sensitivity, feeling like there is something in the eye, redness or watery eyes.

Blindness can result from scars. Rapture to the cornea, the outermost thin layer of your eyes, destroys the inner tissues and layers. Depending on the stage of advancement, treatment of a viral load infection may result in a corneal scar, thus causing blindness. This is because light will be blocked from passing through to the retina.

Other complicated diseases such as astigmatism, cataract and glaucoma can also lead to corneal ulcers and possibly result in reversible and irreversible blindness. That is why we usually advise prompt seeking of medical attention so that it is diagnosed and treated immediately. Most of the time however, patients, come to us when it is quite late. This is especially common in pastoral communities where hygiene is not properly maintained.

Treatment will depend on the causative agent. If caused by a virus, we will administer antiviral eye drops and if caused by bacteria; we will give antibacterial eye drops for management. The frequency of application of the drops will depend on severity of the condition.

 Treatment also involves administration of pain medication and a recommendation to use sunglasses to propagate healing and to help with photosensitivity. During treatment, people who wear contact lenses are usually advised to remove them. Healing time usually takes between one and two weeks.

Often, the disease affects one eye. However, in cases where both eyes are affected, it is possibly due to infection. One may rub the infected eye and then transfer the bacteria or virus to the healthy eye, leading to infection

Corneal ulcers can be prevented by removing contact lenses when users feel uncomfortable and wearing eye protective gear when doing an activity where eyes will be exposed. It can also be prevented by practising hand hygiene to prevent infection of healthy eyes. People who get eye injuries must also be keen on seeking urgent medical treatment

Surgical interventions may involve a corneal transplant to replace the damaged cornea and restore vision.