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African Journal #25: Vision Today, Gone Tomorrow

Posted Feb 19 2009 6:31pm

November 5, 2008

 

At eight years old, I first learnt I had a retinal condition that would eventually deteroriate my vision as I got older. Usher Syndrome, to me, was not an issue I’d cared to remind myself of in my teens, until it became a problem in college. I struggled to come to terms that I was blind as well as Deaf, and that I would eventually have to learn how to adapt to life as a blind person. Cane orientation, Braille lessons and Deaf-Blind community networking started   when I turned 23, as well as advocating for equality for people like me. What I’d thought was a catalyst, a demolition ball ruining my life turned out to be a blessing. I am in a faraway, strange part of the world helping Deaf and Deaf-Blind people discover they have the right to have the same opportunities as any other citizen of their African country. If it weren’t for my blindness, I probably wouldn’t be grateful for so many things in my life, including the remaining vision I had. Whatever time I had left to see, I travel the globe, taking in its undiscovered beauties, vast mysteriousness and immersing into a rainbow of cultures. I’d seen the red sands of the Subsaharan desert, the mountains of Bavaria, the ancestry of the Romans, golden temples of the Orient and the miracles that were homegrown. All that before the age of 28, clearly I wanted more time until I could see my hair turn gray in the mirror, my friends’ children into adulthood, perhaps my own wedding. Wishful thinking, now turned into a somber reality I’d have to accept, that my vision was going to go sooner than I’d hoped.

 

In the final weeks of my journey across America this summer, I had packed up my bulging suitcases and got ready to head for the Big Apple. Sitting at the desk of 910 8 th Street, staring in the glare of the laptop, I noticed something that was surely not there before. In the remaining good eye – the one on the right – a strong blur had taken up half of the 5-degree tunnel, with a big, brown spot smack dab in the middle of the split between the blur and clear parts of sight. Horrified, I emailed several of my Deaf Blind friends and asked what the hell this was. They assured me it was probably a floater, a common symptom of Usher Syndrome. I had it several times, and it’d disappeared within three to four days.

           So, I waited patiently. I looked out to the skyline of New York City with the clear half, finding it a nuisance I’d hoped would go away soon. The brown spot hadn’t moved, or disappeared. The blurriness hadn’t dissolved, it remained the same. Taking my focus off the new change in my vision, I visited the Helen Keller Center, ate sushi with friends, had coffee and muffins by Prospect Park and walked the streets of Flatbush Ave, Brooklyn. A part of me panicked, wanted to go home to see my local ophthalmologist. But the other part of me that longed for Africa, longed to see my Nigerian gang, to get to the grind with my new organization. That latter half overpowered my concerns and I was on the afternoon flight out of John F. Kennedy Airport via Frankfurt, Germany. By the next morning, I landed in Abuja, Nigeria, ecstatic to be back and subconsciously praying that the stupid thing in my eye would go away. I didn’t want to think about the options I would eventually have to face: cataract removal via operation or leave it be and let it lead to full blindness. In 2004, I had a routine cataract operation on my left eye, to remove a seemingly ripe cataract. It led to sudden full-blindness and ever since I’d been very wary of another operation that put my right eye at risk.

 

Weeks passed. The damn thing was still there, slowing down my reading by 50%, making objects harder to identify, faces became strangers until they told me who they were, large objects were harder to find. After weeks of frustration, I finally gave up on hope it’d go away and I admitted my condition to VSO and my father. Understandably, they were very concerned, and off I went to see a Nigerian ophthalmologist for an examination before it was determined if I’d need treatment in my home country.

 

Dr. Femi Babalola’s office was inside the Racheel Eye Clinic in Abuja. It wasn’t a run-down building but it wasn’t extragavant. It looked humble, the white paint on the exterior walls wore out with years under the blistering sun. My interpreters, Bisi and Lola, accompanied me to the clinic to ensure clear communication. They are fluent in Signed Exact English. I sat in the small waiting room, right across me was a counter with shelves behind glass, glasses were on display. Next to it, a wall separating the two sections, was a secretary’s desk. She took my ID, looked at my forms I’d filled out, and said the assistant would be with me shortly. Shortly became immediately, and I was escorted into a small, dark office with a gadget in the middle of the room, a tall floor lamp with dimmed light, and closed curtains. I sat in the big dentist’s chair, saw a mirror across me that reflected the optical chart. The woman assistant made some inquiries, wrote it on a notepad, and said I needed eyedrops to dilate my pupils for examining. The doctor would be with me soon.

           I went out to the waiting room again, and was given my drops in front of several strangers. As the drop touched my eyeball, I suddenly felt a strong sting. My eye was burning and I tried to stifle a scream. I told the nurse it was too strong, but she insisted that it was the right kind and other patients had used it. Another drop in the other eye had the same result. I whimpered, but didn’t complain, and closed my eyes for a few minutes. The nurse returned, checked my eyes and was amazed it wasn’t dilated yet. ‘One more time’, she told the interpreters. I objected, saying it hurt too much, which was unusual. In Canada, it only required one drop in each, and it was as gentle as a baby’s tear. Painless.

           ‘Take it, just one more time. Then you’ll be seen by the doctor’, she said. So I took it, but this time, I could not contain my screams. I yelled out some curse words, and tears (not the drop liquid) came pouring out of my eyes. I had to wear my sunglasses, as a tiny fraction of light made it more painful to look around. After five minutes, the nurse returned. I took off my sunglasses, she looked bewildered. My pupils had not dilated yet! She accused me of keeping my eyes open after the drops, and I told her I had kept it closed behind the sunglasses. She insisted that I take it one more time, and I stood up and flat out refused. I told her that it was torture, and if the other patients had complained of the burning, they should look into getting a better solution from American eye clinics. I didn’t want to further damage my vision, but she said the doctor would not see me until I was a good girl and took the last drop. I got very agitated, and debated whether I should take the drops. So I did. And the result? No dilation! So all of that pain was worth nothing. The doctor saw me anyway, and after a hour of poking, prodding and analyzing, he said he would give me a prescription and it would go away. I said that until he contacted my Canadian doctor, I would not take any medication, not after the horrible experience I had with a standard eye dilation practice. He understood, and promised he’d get in touch with my doctor. He recommended new glasses, but I refused again. I didn’t want any diagnosis until I got a second opinion.

 

           After the trip to see Dr. Babalola, a series of emails were exchanged between him, me, my Canadian ophthalmologist, VSO Nigeria staff and my father that lasted weeks and weeks. Now, a conclusion is nearing – I would be home for the holidays, in December, and have the doctor at home examine me. She’d been examining me for over ten years, so she knew me and my condition inside and out. So, details are still being worked out, and it looks like I’ll have to slip on an old parka, find dusty boots in the basement, and don my favorite colored hat and brave the winter and watch my tan fade. I’d be back in Nigeria in time to ring the New Year and content with a diagnosis from my Canadian doctor.

 

Whatever happens, I have to accept the inevitable: if this thing that just appeared all of a sudden is something permanent, I have to put all of my energy in finishing my VSO term, finding a way to cope with the sudden change, and mustering up the courage to face more challenges now that half of the good vision’s gone. I still long to watch the Masai dance around the bonfire in their colorful face paint in the nightfall of Tanzania, the lush green rainforests of Uganda, the coffee fields of Kenya and the magnificient coast of Malawi. That shall happen in 2009.

 

           In a sense, losing my vision feels like dying. I want to see more places, absorb the faces, remember the different shades of colors, read 1,000 books, read the face of my lover, all before I cannot see anymore. It’s terrifying. I tell people I’m okay with it, which I am, but there are times when I sit by myself, realizing the realities of being fully blind and I cry. I never want to be blind, but remain deaf. Deafness has its own deafhood, but blindness has more struggles than a culture of its own. But I shall find a way to go on, like Helen Keller, Father Cyril Axelrod, John Lee Clark, Art Roehrig, Polly Mansfield, Doris Fedrid, Jelica Nuccio, and many, many Deaf Blind leaders around the globe have. If they have found the courage to go on in life as a Deaf-Blind person, so can I. But I’d honestly want to have my sight for just a little bit more. I’m so young.

           But perhaps if losing my vision is death, then the moment I die, I shall resurrect a new person.

 

Tactile love,

Coco

 

PS: Who knows what caused the rapid deteroriation? We’ll find out soon enough.

November 5, 2008

 

At eight years old, I first learnt I had a retinal condition that would eventually deteroriate my vision as I got older. Usher Syndrome, to me, was not an issue I’d cared to remind myself of in my teens, until it became a problem in college. I struggled to come to terms that I was blind as well as Deaf, and that I would eventually have to learn how to adapt to life as a blind person. Cane orientation, Braille lessons and Deaf-Blind community networking started   when I turned 23, as well as advocating for equality for people like me. What I’d thought was a catalyst, a demolition ball ruining my life turned out to be a blessing. I am in a faraway, strange part of the world helping Deaf and Deaf-Blind people discover they have the right to have the same opportunities as any other citizen of their African country. If it weren’t for my blindness, I probably wouldn’t be grateful for so many things in my life, including the remaining vision I had. Whatever time I had left to see, I travel the globe, taking in its undiscovered beauties, vast mysteriousness and immersing into a rainbow of cultures. I’d seen the red sands of the Subsaharan desert, the mountains of Bavaria, the ancestry of the Romans, golden temples of the Orient and the miracles that were homegrown. All that before the age of 28, clearly I wanted more time until I could see my hair turn gray in the mirror, my friends’ children into adulthood, perhaps my own wedding. Wishful thinking, now turned into a somber reality I’d have to accept, that my vision was going to go sooner than I’d hoped.

 

In the final weeks of my journey across America this summer, I had packed up my bulging suitcases and got ready to head for the Big Apple. Sitting at the desk of 910 8 th Street, staring in the glare of the laptop, I noticed something that was surely not there before. In the remaining good eye – the one on the right – a strong blur had taken up half of the 5-degree tunnel, with a big, brown spot smack dab in the middle of the split between the blur and clear parts of sight. Horrified, I emailed several of my Deaf Blind friends and asked what the hell this was. They assured me it was probably a floater, a common symptom of Usher Syndrome. I had it several times, and it’d disappeared within three to four days.

           So, I waited patiently. I looked out to the skyline of New York City with the clear half, finding it a nuisance I’d hoped would go away soon. The brown spot hadn’t moved, or disappeared. The blurriness hadn’t dissolved, it remained the same. Taking my focus off the new change in my vision, I visited the Helen Keller Center, ate sushi with friends, had coffee and muffins by Prospect Park and walked the streets of Flatbush Ave, Brooklyn. A part of me panicked, wanted to go home to see my local ophthalmologist. But the other part of me that longed for Africa, longed to see my Nigerian gang, to get to the grind with my new organization. That latter half overpowered my concerns and I was on the afternoon flight out of John F. Kennedy Airport via Frankfurt, Germany. By the next morning, I landed in Abuja, Nigeria, ecstatic to be back and subconsciously praying that the stupid thing in my eye would go away. I didn’t want to think about the options I would eventually have to face: cataract removal via operation or leave it be and let it lead to full blindness. In 2004, I had a routine cataract operation on my left eye, to remove a seemingly ripe cataract. It led to sudden full-blindness and ever since I’d been very wary of another operation that put my right eye at risk.

 

Weeks passed. The damn thing was still there, slowing down my reading by 50%, making objects harder to identify, faces became strangers until they told me who they were, large objects were harder to find. After weeks of frustration, I finally gave up on hope it’d go away and I admitted my condition to VSO and my father. Understandably, they were very concerned, and off I went to see a Nigerian ophthalmologist for an examination before it was determined if I’d need treatment in my home country.

 

Dr. Femi Babalola’s office was inside the Racheel Eye Clinic in Abuja. It wasn’t a run-down building but it wasn’t extragavant. It looked humble, the white paint on the exterior walls wore out with years under the blistering sun. My interpreters, Bisi and Lola, accompanied me to the clinic to ensure clear communication. They are fluent in Signed Exact English. I sat in the small waiting room, right across me was a counter with shelves behind glass, glasses were on display. Next to it, a wall separating the two sections, was a secretary’s desk. She took my ID, looked at my forms I’d filled out, and said the assistant would be with me shortly. Shortly became immediately, and I was escorted into a small, dark office with a gadget in the middle of the room, a tall floor lamp with dimmed light, and closed curtains. I sat in the big dentist’s chair, saw a mirror across me that reflected the optical chart. The woman assistant made some inquiries, wrote it on a notepad, and said I needed eyedrops to dilate my pupils for examining. The doctor would be with me soon.

           I went out to the waiting room again, and was given my drops in front of several strangers. As the drop touched my eyeball, I suddenly felt a strong sting. My eye was burning and I tried to stifle a scream. I told the nurse it was too strong, but she insisted that it was the right kind and other patients had used it. Another drop in the other eye had the same result. I whimpered, but didn’t complain, and closed my eyes for a few minutes. The nurse returned, checked my eyes and was amazed it wasn’t dilated yet. ‘One more time’, she told the interpreters. I objected, saying it hurt too much, which was unusual. In Canada, it only required one drop in each, and it was as gentle as a baby’s tear. Painless.

           ‘Take it, just one more time. Then you’ll be seen by the doctor’, she said. So I took it, but this time, I could not contain my screams. I yelled out some curse words, and tears (not the drop liquid) came pouring out of my eyes. I had to wear my sunglasses, as a tiny fraction of light made it more painful to look around. After five minutes, the nurse returned. I took off my sunglasses, she looked bewildered. My pupils had not dilated yet! She accused me of keeping my eyes open after the drops, and I told her I had kept it closed behind the sunglasses. She insisted that I take it one more time, and I stood up and flat out refused. I told her that it was torture, and if the other patients had complained of the burning, they should look into getting a better solution from American eye clinics. I didn’t want to further damage my vision, but she said the doctor would not see me until I was a good girl and took the last drop. I got very agitated, and debated whether I should take the drops. So I did. And the result? No dilation! So all of that pain was worth nothing. The doctor saw me anyway, and after a hour of poking, prodding and analyzing, he said he would give me a prescription and it would go away. I said that until he contacted my Canadian doctor, I would not take any medication, not after the horrible experience I had with a standard eye dilation practice. He understood, and promised he’d get in touch with my doctor. He recommended new glasses, but I refused again. I didn’t want any diagnosis until I got a second opinion.

 

           After the trip to see Dr. Babalola, a series of emails were exchanged between him, me, my Canadian ophthalmologist, VSO Nigeria staff and my father that lasted weeks and weeks. Now, a conclusion is nearing – I would be home for the holidays, in December, and have the doctor at home examine me. She’d been examining me for over ten years, so she knew me and my condition inside and out. So, details are still being worked out, and it looks like I’ll have to slip on an old parka, find dusty boots in the basement, and don my favorite colored hat and brave the winter and watch my tan fade. I’d be back in Nigeria in time to ring the New Year and content with a diagnosis from my Canadian doctor.

 

Whatever happens, I have to accept the inevitable: if this thing that just appeared all of a sudden is something permanent, I have to put all of my energy in finishing my VSO term, finding a way to cope with the sudden change, and mustering up the courage to face more challenges now that half of the good vision’s gone. I still long to watch the Masai dance around the bonfire in their colorful face paint in the nightfall of Tanzania, the lush green rainforests of Uganda, the coffee fields of Kenya and the magnificient coast of Malawi. That shall happen in 2009.

 

           In a sense, losing my vision feels like dying. I want to see more places, absorb the faces, remember the different shades of colors, read 1,000 books, read the face of my lover, all before I cannot see anymore. It’s terrifying. I tell people I’m okay with it, which I am, but there are times when I sit by myself, realizing the realities of being fully blind and I cry. I never want to be blind, but remain deaf. Deafness has its own deafhood, but blindness has more struggles than a culture of its own. But I shall find a way to go on, like Helen Keller, Father Cyril Axelrod, John Lee Clark, Art Roehrig, Polly Mansfield, Doris Fedrid, Jelica Nuccio, and many, many Deaf Blind leaders around the globe have. If they have found the courage to go on in life as a Deaf-Blind person, so can I. But I’d honestly want to have my sight for just a little bit more. I’m so young.

           But perhaps if losing my vision is death, then the moment I die, I shall resurrect a new person.

 

Tactile love,

Coco

 

PS: Who knows what caused the rapid deteroriation? We’ll find out soon enough.

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