Losing my sight: The pain, the bills and the ill system

Ivan Omondi, the head of advocacy at the Kenya Society for the Blind, during an interview at the Nation Centre on October 5.
 

Photo credit: Evans Habil/ Nation Media Group

What you need to know:


  • Sh100K- The amount Mr Omondi was required to deposit before he could be served at the first hospital he was taken to after being attacked
  • Sh250K- The cost Mr Omondi was told would cater for rehabilitation
  • Oct 13- When the World Sight Day is marked

Memories of Ivan Omondi Odera’s 34th birthday are loaded with sadness. That is the day he officially found out that he had lost his eyesight and started his life on a new chapter that he likens to being born again.

Now the head of advocacy and corporate relations at the Kenya Society for the Blind (KSB), Omondi recalls being attacked just 20 metres from his gate at around 9pm.

A few minutes earlier, he had bid goodbye to his friend who had given him a lift as he had to purchase some essentials from a shop.

“I was walking home and was talking on the phone when it was  snatched from my hand. There were about four people, as I later learnt, but I only saw one person directly in front of me, although I could not make out the facial features.

"They beat me with metal bars to subdue me because I was resisting, which is something I now advise people not to do. I was also carrying a bottle of battery acid for my car, which they splashed on my face and eyes before they left with my bag. They literally robbed me blind,” recalls Mr Omondi.

Screaming, he crawled to his gate and started banging it. It would, however, take a while for his family to open the gate. They then rushed him to a nearby private medical facility where he was asked to deposit Sh100,000 pending first aid.

“By the time we got to the hospital it was around 10pm. I didn’t have the money at that time, but the hospital insisted that I should make a deposit first before I am attended to. It took an hour for that to happen, and only then was first aid administered and I got admitted. The next morning, a team of medics came to my bed.  My life came crashing down especially because of the delivery of the message. I clearly remember the doctor saying I had a 95 percent chance of never seeing again,” Mr Omondi recalls.

Painful reality

He was discharged on the same day, after paying some more money, then transferred to the Tenwek Mission Hospital’s eye unit for a second opinion. 

There, he received counselling before he was informed that he would possibly lose one eye in totality. The medics added that they would try restoring the other eye, which had no light perception.

“By virtue of having been a sighted person all my life, I didn’t really accept that I was turning blind, so I told them to do what they had to do. I underwent over 10 surgeries, which were painful and costly. In retrospect, if I had known, I would not have gone through that whole regimen because it took a toll on my whole family,” says Mr Omondi.

Mr Omondi having a light moment during the interview. 

Photo credit: Evans Habil/ Nation Media Group

His vehicle business crumbled as he tried to pay his hospital bills, yet his sight wasn’t on the path to restoration. The hospital, says Omondi, had resorted to managing the condition, and had to replace one lost eye with a prosthetic. His remaining eye had its cornea mostly functional that he could only tell night from day. That has, however, deteriorated over the years. He believes he still retains five percent light perception.

“When my businesses collapsed, my old widowed mother took my wife, child and I in. There, all I did was eat, sleep and bask under the sun. Unable to provide, I sank into depression, and my wife had to do menial jobs that were below her to cater for the family. My mother became my guide, taking me to the hospital and staying there with me.

“Because of the depression, I took it out on the people that were close to me. I could tell that the strain was taking a toll on everybody, yet everyone was worried about my wellbeing,” says Mr Omondi.

Rumours also started flying around. People thought he had wronged someone or he had been bewitched. They said this in his presence, addressing the claims to the people that were around him, as though he was deaf.

“My friends that I used to spend a lot of time with also disappeared, and I had to redefine  family and friendship. My support system shrank to nuclear family and very close friends. My calls to some went unanswered, which made me realise that people normally put a monetary connotation to help, not realising that sometimes you just need to talk,” he explains.

Rehabilitation

For a year, he stayed home, his mobility cut to zero, as he often wondered what lay next for him. He is a learned man, yes, but he admits not knowing where to get a white cane for mobility, and the basic information he needed as a person with disability.

The idea of rehabilitation did not appeal to him, Mr Omondi recalls, especially since the only information he had was about a facility in Machakos where he would have to board and learn how to do leatherwork and carpentry to earn a living.

He lived this way until one day, in 2015. While listening to the television, he heard an advert by Kenya Society for the Blind about an upcoming blind walk to Mt Longonot. The advert made him laugh. He asked his wife to take the details. He would later marshal some resources to travel to Nairobi.

“I came to Nairobi to the Kenya Society for the Blind accompanied by eight family members who thought I would get lost if I came alone. Upon arrival, I was handed my first rehabilitation invoice of over Sh250,000. I only had Sh21, 000 to my name. I went mute until a gentleman walked into the room and said he was an Information Technology (IT) trainer. I was elated that I would be able to use a computer and phone again. He was what I wanted to become, and I requested the facility to allow me to enrol and then I would pay later,” recalls Mr Omondi.

He was admitted for six months to learn orientation and mobility, how to use the white cane, how to do simple tasks like ironing clothes, prepping meals and using a computer — chores he never thought were possible for a blind person.

“When you are transitioning from the world of the sighted to the dark, it is very hard. Everything I knew how to do was because of my vision, but during the rehabilitation, I needed to hone into my senses instead. We also normally say that disability is not inability, but to me, disability was inability because I wasn’t able to do anything. I would fall down, give up, and we – myself and 12 newly blinded people then – called the training ngumbaru school,” he says, laughing.

“There, we also questioned how unlucky we were. We are often told that God won’t give you something you cannot handle, but I would ask myself why God didn’t choose someone else. The good thing is that there is safety in numbers. You are able to talk to others and share because they understand,” he says.

“Life after rehabilitation has also been a nightmare, because society is not ready to accept people with disabilities back and allow them to go back to what they were doing before. If you were in the jua kali sector, can you go back in? If you were in employment, can your employer accommodate you?” he asks.

“There is a traditional outlook of disability and from a religious perspective, which views disability as a bad thing or a curse. Because of poor implementation of policies regarding people with disability, the only courses available are restrictive. It’s as though people are not ready for the 21st century person with disability,” explains Mr Omondi.

“The new blind is someone who is able to sit at a computer and work, but people don’t know where to ask for services. Blind people in upcountry do not know that they can register and get money for school fees for their children,” he says.

He discloses that his current job as the head of advocacy at KSB stems from a promise he made to God while under treatment at Tenwek Mission Hospital — that if he got a chance to be a functional member of the society, he would give back.

“My giving back is where my passion for disability came in. I am now a disability activist and advocate. I live, preach and sleep blindness, because I know what it is to be sighted and to be blind. Disability is expensive. Nobody chooses it. One morning you can be sighted and the next one you are blind. So, we really need to care for people with disabilities in the country,” he says.

He also urges the government to ensure that there is a universal design for people living with disability by setting up institutions of advanced learning that accommodate people with disability so that they get a chance to be functional members of the society.

“There are primary and secondary schools for the blind but no universities to cater for them and to help them become functional members of the society. Such barriers are preventing us from being able to give back to the community. PWD lives matter. Blind lives matter. We would want to start our families, have children, have vehicles, go to school and go for holidays, but we can only do that when we are given a chance and a good environment,” he pleads.

Expert’s views

Dr Masua, an ophthalmic clinical officer, cataract surgeon and  a low-vision therapist working at KSB says the leading cause of irreversible blindness in the globe is glaucoma, which is simply described as high eye pressure.

“Normal eye pressure is rated between 11 and 21. If the eye pressure goes beyond 21, it causes compression to the nerve of the eye that connects the eye to the brain. Consistent pressure to the eye nerve causes damage to the nerve, leading to irreversible blindness. Once you have a damaged nerve,  you can never reverse it,” says Dr Masua.

“The leading cause of reversible blindness in the country is cataracts, a disease of old age where the eye lens that helps us to see gets a coating that prevents light from going into the eye to allow you to see. The only way to reverse this is through cataract surgery. You can get cataracts due to trauma. Some children are also born with it. It can also be due to comorbidities such as diabetes and hypertension,” he says.

Makeup factor

He explains that initially, the leading cause of blindness was trachoma, a disease where the eyelids turn inwards. This has, however, gone down because of efforts by the Health ministry to ensure hygiene. 
With trachoma, the lashes would turn inwards because of scarring or inflammation of the upper part of the eye, which was caused by houseflies.

“When the eyelashes turn inwards, they consistently rub on the inner part of the eye, which causes an ulcer that creates a scar when healing. During surgery, we turn the eyelid so that they grow outwardly,” says Dr Masua.

Makeup, he says, also increases risk of eye disease.

“Our tears are enough cleansing material to clean our eyes. And our tears have three components: water – which you produce when crying – mucus that catches debris and oil that is on the top part of the tear film to stop or reduce evaporation. When you put on makeup that goes right under the eyelid margin, it irritates the glands that produce the oil, which increases evaporation of the tears you produce,” he says.

“This predisposes you to issues like itching, redness, irritation and foreign body sensation where you feel like there is a particle. This will make you rub the eye. It is a vicious cycle: you rub your eye, it causes swelling, you feel more particles which continue irritating the eye and you feel worse. We tell people that when they are putting makeup on,  they should make sure they do not go to the edge of the eyelids,” adds Dr Masua.

To avoid visual impairment, he advises that one should have at least one eye check-up a year. This, he adds, will help doctors identify problems before they escalate.

“Most people who come to hospital with issues such as glaucoma don’t know they have it until they are checked because often there are no symptoms. They only wake up one morning and realise their eyes are blurry.  Or they will say they have been bumping into things because glaucoma affects peripheral vision first. A healthy diet is also important, as well as controlling systemic diseases that cause eye conditions. Also, people who work as welders and masons need eye gear to prevent trauma,” he explains.

People using computers, he says, also need to take frequent breaks to prevent the computer eye syndrome caused by light emitted from computers by using the 20-20 rule. This means that after doing 20 minutes of intense work, they should take 20 seconds to look at something that is 20 feet away.

That relaxes the eye muscles and gives the eye a break from receiving blue emissions from the computers.

According to the World Health Organisation (WHO), the leading causes of vision impairment and blindness in the world are uncorrected refractive errors and cataracts.

It also notes that at least two billion people in the world have vision impairment, half of which are preventable.

“The majority of people with vision impairment and blindness are over the age of 50 years.  However, vision loss can affect people of all ages. Vision impairment poses an enormous global financial burden, with the annual global costs of productivity losses associated with vision impairment from uncorrected myopia and presbyopia alone estimated to be at least Sh24 trillion,” says WHO.

“A person’s experience of vision impairment varies depending on many different factors. This includes, for example, the availability of prevention and treatment interventions, access to vision rehabilitation (including assistive products such as glasses or white canes), and whether the person experiences problems with inaccessible buildings, transport and information,” adds WHO.

WHO also states that early-onset of vision impairment in children can result in delayed motor, language, emotional, social and cognitive development, while in adults, it results in lower rates of productivity and higher rates of depression and anxiety. Older adults also risk being socially isolated, having difficulty walking, falling and suffering fractures, and are highly likely to be admitted into nursing homes.

Ahead of the World Sight Day on October 13, players are encouraging the public to go for screening and are calling for  accessible, inclusive and affordable eye care for everyone everywhere.

The world will also be marking the International White Cane (Safety) Day on October 15 to celebrate the achievements of visually impaired people.

Doctor’s first aid tips for eye injuries

BY DR ALBERT MASUA

Eye injury, especially one sustained at home, is a leading cause of eye-related problems.  Some of the things I really fear are the products used to clean toilets and the strong bleaches in the market.

Dr Albert Masua, a cataract surgeon and a low-vision therapist who works with the Kenya Society for the Blind. PHOTO | POOL

Photo credit: PHOTO | POOL

When bleach enters your eye, it is more disastrous than acid. This is because bleach burns the cells on the first layer of the eye. These cells then turn into another poisonous bleach that burns the next layer. This goes on to the next layers.

The speed of burning depends on the amount that has gone into your eye. If it is too much, it can be disastrous.  You can lose your eye in less than an hour. These tips can come in handy:

1. While cleaning your toilet, don’t scrub with force or splash water.

2. If bleach enters your eye, open a tap and let water run through your eye for five minutes without stopping. That will wash out the bleach. In the hospital set up, when you come and tell us what happened, we will use 500 millilitres of IV fluid to wash one eye, which can take about five minutes. We open the eyelids completely and pour that water directly on the eye to make sure we get everything out.

3. Once that is done, just pad the eye and run to the nearest hospital. Don’t put anything. We have seen people put breastmilk, honey, tea leaves, among others.

4. Avoid over-the-counter drops as much as you can. There is a common drop that most people with eye problems will often get when they walk into a chemist. It is a good drop when used for the right condition.

But if you had an injury and used that drop – which is a steroid and an antibiotic – it may be unhelpful because a steroid reduces your immunity. If you use it and you have an ulcer in your eye, the reduced immunity means that an infection will seep in and you may develop a bigger wound than you had before using the drops. Because of this, you can lose your eye because the infection can spread from the eye to the brain, which will require that we remove your eye.

5. With eye transplants, we only do corneal transplants which are expensive because, as Africans, we don’t want to donate our corneas. We are begging people to become donors. If you want to donate, you sign a document, and doctors will get the eye within six hours of your demise.

The cost of corneal transplant is Sh250,000. It is covered by NHIF. However, the problem is that we get the corneas from outside the country, which comes at a cost. If we had these corneas donated from within the country, the cost would significantly go down.

The problem with this is that I may be willing to donate, but when I die, my family may not call to share the information. We need to create more awareness on that.

I, however, insist that we should make eye check-ups mandatory. You will be shocked to find out that you have a disorder that you didn’t know about.

Better be checked rather than wait until you have a problem then you react to it. For example, people with glaucoma can retain their vision if their condition is detected early. But if identified at an advanced stage and you are young, your life changes completely.

It should also be mandatory for people with diabetes and hypertension to get their eyes checked because diabetes is becoming almost the leading cause of irreversible blindness. People who have diabetes currently are living longer than before. So, the longer and older you get, the more likely you are to get eye issues — irrespective of how well you control your sugars.

Dr Masua is an ophthalmic clinical officer, a cataract surgeon and a low-vision therapist working with the Kenya Society for the Blind