Living with Usher syndrome Poetry in motion, a fireside chat with Mani Iyer

Following on from the recent Spring Eye on the Future Forum, we were lucky enough to catch up with one of our fantastic panelists to speak more about his journey with Usher syndrome.

The Book Collector - a poem by Mani G. Iyer

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Mani G. Iyer was born and raised in Bombay, India. He has lived in the United States since 1985 and is deafblind due to a rare and progressive genetic disorder, Usher syndrome Type 2. Graduating from the University of Bombay with a master’s degree in Computer Science he went on to become a software engineer for 30 years.

What was it like growing up in Bombay?

“I grew up in a lower middle-class family and we were poor because my father was unemployed, most of the time. My older sister also had a syndrome, but nobody had a clue as to what was going on. My whole family just talked loudly. Growing up in a loud household I didn’t really realize or find out I had hearing loss until I joined school and the teacher came home personally to tell my parents that I had a hearing issue. Something was not right with my hearing and at the time, our doctor didn’t make a big deal out of it. I also didn’t play at night with the other children, I had a lot of problem seeing at night.”

How did you manage through school with the hearing loss?

“In elementary school I sat in the front row. My family could not afford something like a hearing aid, so I had to sit, and lip read where I could. I remember in the Eighth grade my father finally managed to get me a hearing aid. It was a hearing aid that you can put in your pocket, like a small box, and there was a wire running across and then you put it on one ear only. It was an item of fascination for everybody else and they wanted to try it. I ended up being the valedictorian of the school, I was lucky to be academically inclined. I remember my mother actually telling me to go outside and play as I would study a lot and want to finish my homework instead of play.”

“I continued education to college and university, where I sat at the front and lip read. I did well in further education. I would talk to the professors beforehand, telling them look, this is what my problem is and they made accommodations where they could, including having me right at the front. After university I completed my master’s in computing.”

When you graduated, you went into work and noticed your eyesight also deteriorating?

“My first job was in an office that was very far away from my home, I had to take a train and a bus. It was this constant commuting that I noticed another problem. I would bump into people a lot. I would have to keep saying, every day, “I’m sorry, I’m sorry”, as I just would miss where people were standing. I look back and can’t imagine how I survived doing that for three years. There were so many people in Bombay, now known as Mumbai, it was not a great place to be if you kept walking into people. It was then in 1985 I got a job in the USA and in the first month my project manager told me I had a problem with my hearing and sight. I was having a bit of trouble lip reading American English when I first arrived, and my project manager noticed. She recommended I go see someone. It was the first time I had ever spoken to an audiologist. It was then I got my first ever hearing aids at the age of 24.”

Read Mani's story

Getting hearing aids opened you up to wider healthcare as well, it was not long after you met your first ophthalmologist?

“It was a radical change. I could hear traffic and other things. I am so grateful to my project manager when I first came to the USA for telling me bluntly, I had to do something about it. It was super, I could hear things and engage more, but I kept stumbling. After three years in the USA, I finally met my first ophthalmologist who set me on my way to seeing a retinal specialist and getting a diagnosis for my vision. They did all the tests; I cannot tell you how many tests they did. I was 27 at the time and still driving. When I told my ophthalmologist, I drove to the appointment my doctor said: “you know you're still not legally blind, but I would advise you to stop driving before you hurt someone”, at the age of 28 I stopped driving.”

Without a car, the USA can be a hard place to get around, where did you head next?

“I decided to move to Boston. It was then that I used public transport for everything. It was a level of comfort not having to rely on another person driving to get you from one place to another. I eventually finished my career at 50.”

You also obtained an MFA degree in Poetry, what is it about poetry that really inspires you?

“Right after finishing work, I went into depression, had anxiety and started seeing a therapist regularly. He was very supportive in showcasing that I needed to find something I loved. My first thought was poetry. Since I was 14 or 15, I had been writing poetry. I even had articles published in the college magazine. I also would write poetry for my wife.”

“I take a huge amount of joy in having written the perfect line. It is a real joy to recite some great lines in the bathroom. I then applied to join the MFA degree program, and they had never had a deafblind person join the course. It was a new experience for all. The teacher, the other students and the course were very nice, and I graduated and started publishing my poetry.”

Moving onto the community work you have done, you helped establish a registry for the Usher Coalition, how did that happen?

“Right after I quit working, I got involved with the Usher Coalition. It was an accident, I met another gentlemen in the Retinal Specialists office in Boston. We got to talking and that was that. We started meeting and talking regularly, one thing led to another and we decided one of the clear steps forward was to establish a patient registry in Usher syndrome to help the next generation. The main objective was we did not know who in the world had Usher. Who are they? How many people have the condition? How do we spread the word and grow the community?

I originally had my mind on a global registry, just a USA centric registry was not on my mind. It would be a registry to help members of the community to get into clinical trials. So, I worked from home, the Usher Coalition gave me all the freedom and we used open-source software. It was a labor of love in all honesty. It was a very simple topic, somewhere for people to put their diagnosis, their thoughts, and any other information they wanted. All in the aim of speeding up trials and research in Usher syndrome.

Having been there at the start, how does it make you feel that the registry is helping people get onto trials?

“I feel very proud, and I like to think the registry is a foundation for younger generations being able to find treatments which will mean they never go blind.

The Book Collector

 

From Achebe to Marquez to Vonnegut, they live

neglected and disorderly in my bookcases–

 

books that languished in small town bookshops 

with rickety stairs winding dingier 

 

books I plucked out of manicured bookstores

boasting couches, scones, and cappuccinos

 

books I housed in neighborhoods right for them,

the new ones causing a stir or two

 

books I dusted on Sunday afternoons

one at a time, trumpeting random bios,

 

books that strayed elsewhere and I bothered

to give them back their orderly lives.

 

books whose words faded over the years,

Then their spines, their covers, their lodgings

 

books whose paper, when caressed, I dream

I worshipped with my eyes.

 

mani g. iyer

 

Mani’s work I Am the Dancing is available on Amazon.