How I reinvented myself after becoming blind suddenly at the age of 30

Eve Kibare is a YouTube content creator who lost her eyesight in 2020. This birthed the idea of a YouTube channel —Blind Girl Experience where she shares her journey. Photo | Pool
 

What you need to know:

Evelyn Kibare, 32, is a blind Youtube content creator and entrepreneur. She lost her eyesight in 2020 and now documents her experiences and those of others through her channel, Blind Girl Experience

On many nights in November 2020, I could not sleep a wink. I lay at the hospital bed, staring into nothingness and trying to map the life that lay ahead of me. The room was full of other patients—some agonising in pain and others in deep sleep. I couldn’t help but wonder if there was another patient facing a conundrum like myself.

A few months prior to the hospitalisation, I had a growing career as a film producer, and communication consultant and I ran an online lingerie business, which I paused after my circumstances changed. I am currently selling merchandise related to my YouTube channel and remaining stock from the lingerie venture.


Eyesight

For three decades, I had my eyesight and lived an independent life—I could up and go when I wanted to and do stuff that I enjoyed without any difficulties.

It is pretty known and even widely spoken that life as a blind individual is difficult. Now tie that to the fact that after all these years, I had to relearn the most basic of things like how to send money from my phone or retrieve a contact from my phonebook.

The changes I was experiencing were in the fast lane and I needed to catch up. I was like, “I cannot be a film producer anymore or continue running my business.” I suggested to one of my aunts, who’s versed on matters of audio stories about starting a podcast and she was committed to helping me get back on my feet. However, I found it complicated because I couldn’t do it on my own.

Then I thought of a YouTube channel.  A brilliant idea. I could get subjects and interview them. With the networks that I had created while working as a film producer, I imagined that it would be easier to get someone willing to film me on a voluntary basis. It took me a long time to find a willing partner. The pandemic had upended the lives of many filmmakers pushing them into a financial rut and in a sphere where they were looking for paying jobs. After months of asking around, a former colleague agreed to work with me. He is very professional and treats me like one of his most valuable clients.


Why YouTube Channel

When I started going blind, I realised that many members of my family and friends didn’t know what to do with me. We were all asking one another questions like, “How do blind people go to the bank or “does this mean that I won’t get out of the house without help?” There was so much loss happening around me but I resolved that I was not going to allow myself to fall into depression by staying dormant. I started to create content in my head even before I could voice them out.

However, now more than 10 episodes in, it has been far from smooth. One of the challenges I faced when starting out was forgetting what I was meant to say. There’s no phone or paper to refer to. For some part of this journey, I was just winging it. The other challenge, which I believe is not unique to me is financial constraints. In most cases, I have to facilitate my subjects with transport, refreshments and meals, and money that I draw from my savings. Then there was a point when I could not engage with my followers online. Now that I can, through accessibility features on my phone, my goal is to create informative content around various forms of disabilities.


How I lost my eyesight

As an unprecedented wave of silence spread across the country in the wake of the coronavirus pandemic, my business was rapidly growing online. It helped that many people were shopping online. There was a lot to be done—restocking, packaging, and making deliveries. When I started feeling lethargic, the possible reason was burnout.

This spiraled into frequent splitting headaches so I started taking frequent naps. I remember getting irritated by the light on my phone. Whenever I was in the house, I would dim the light and increase it when I got outside. Since there was no pain, I didn’t give it much thought. I think it’s funny that in retrospect, I can clearly see the changes that were happening only that they were interspersed among daily routines.

Months down the line, I became an insomniac and uncomfortable. Like I needed to get out of my own body. All these were pointers to something being wrong but I also had a business and ambitions that were wearing me down.

In June of 2020, I experienced the worst of headaches to the point that I couldn’t perform my normal chores. At the hospital, I was diagnosed with a bacterial infection and given medication. I didn’t get better and doctors suspected that I had meningitis. The results came out negative. Another screening would later reveal what was happening in my body —a blood clot in the main vein that draws blood from the brain was blocking other vein tributaries causing a lot of pressure on my optic nerves. There were intervals when I could see almost clearly then there were days when everything around me was blurry and dark.

My discharge sheet from the hospital said that I have Optic neuritis (inflammation of the optic nerve) and blood clots in my brain. Tests continued, I was on medication including blood thinners and surgery. Nothing worked.

By the end of November 2020, my world had become dark and according to the specialists, there was no hope of regaining eyesight.

“I was told the cause of the blindness was the blood clot in my brain. The diagnosis was unexplainable and non-conclusive. It's just like cancer,” Evelyn explains about her eyesight loss. 

Yes, it breaks my heart sometimes but I am learning how to deal with and live with it. It is like I am in a new world, one that I have committed to document.




Do you have any feedback? Email it to the editor [email protected]


Welcome!

You're all set to enjoy unlimited Prime content.