Mani Iyer was diagnosed with Usher Syndrome Type 2A at age 28.
Mani overcame incredible obstacles growing up with USH in India. He has two graduate degrees and enjoyed a long and successful career in software engineering. He worked for a variety of companies over more than 30 years in the field, including Liberty Funds Group, Siebel, Oracle, and MathWorks. In one of his jobs, he worked to develop the first, automated dispatcher software used by police and fire stations.
Mani was born in Mumbai, the city he will always know as Bombay. Although Mani’s father was educated, he was usually out of work and therefore his family was quite poor. Mani was an exceptionally bright and happy child, attracting the attention and care of some good teachers from an early age. He was hearing impaired at birth, but no one recognized how severe it was until later in childhood. Mani was so bright that his father changed his birthdate on enrollment forms and put him into school at the age of 3. His teachers recognized the need to sit him at the front of the class where he could ‘catch’ as much information as possible. Years later Mani had the realization that he had learned almost completely by reading lips.
The seriousness of Mani’s vision problems went undetected in his early years. As a little boy, he remembers struggling to read an eye chart at the doctor’s office. No matter how high a power correction he was given, he couldn’t make out the bottom row of letters. He remembers his mother’s surprised reaction and some brief, confused conversation with the doctor, but that in the end his doctor had no explanation and seemed to brush off the problem.
At age 12, Mani developed night blindness. He was improperly diagnosed with Vitamin A deficiency. His peripheral vision had been waning for years, but now he was struggling to see in low light, especially on the walk home from school, and later work, in the evenings. In the crowded streets of Mumbai, he couldn’t help stepping in garbage and waste, even in daylight. People cursed him for stepping on their feet. Since he was undiagnosed, his family couldn’t understand why he did this. His brother would smack him on the head and say “what’s wrong with you? Watch where you’re going!” They assumed he was clumsy. Or absentminded.
Mani tried hard each day to make arrangements to have someone walk home with him. But on occasions when there was no one to accompany him, he had to make his way slowly, gingerly home, on what became an increasingly long and anxiety-filled journey. The onset of night-blindness was terrifying. He began having panic attacks.
In 8th grade Mani was given a hearing aid box that hung around his neck, with a long wire stretching up to his ear. It helped a little, but Mani hated it- it was always malfunctioning and the sound quality was poor.
Despite his struggles with vision and hearing, Mani was a distinguished student and finished at the top of his class every year. He graduated as valedictorian and went on to finish second in his class at university. He credits the kind and wonderful teachers he had along the way, while downplaying his obvious intelligence, curiosity and natural inclination toward enjoyment in hard work and study.
After a graduate degree in Computer Science, Mani worked in Mumbai for two years. Mani’s first visit to the US was for a project as a consultant in Clearwater, Florida. Moving to the U.S. made coping with his hearing impairment much harder. Suddenly lip-reading didn’t work as well. The english he was used to ‘catching’ was spoken in a new way, with a new accent. His boss told him “you need to do something about this.” A colleague went with him to see an audiologist and he received his first effective hearing aid. Mani remembers that day as the happiest, most amazing experience of his life. He walked out of the office and heard birds chirping for the first time. And the wind in the trees. Even the traffic going by his apartment sounded beautiful.
He met his future wife at the university and married her after returning from Florida. He moved to the United States at age 24, to work as a software consultant in the banking and finance industry. Mani remembers this move as a particularly difficult time. He wasn’t able to bring his new bride with him right away, so found himself alone for six months in a new setting.
When he was 28 he went for a routine eye examination where the ophthalmologist was alarmed that he could not give Mani 20/20 corrected vision.
He was referred to the Scheie Eye Institute in Philadelphia where they ran a series of tests. Mani was told he had Usher Syndrome. He was told he needed to “stop driving now.” He was a young, newly married man being told his life would be drastically different than he’d imagined.
Mani encountered discrimination in many forms due to sight and hearing impairment. Many times it was the thoughtlessness or forgetfulness of others that surprised him the most. In one of his last positions as a Senior Software Engineer, his work required frequent meetings in large conference rooms filled with coworkers. Mani would bring his FM system to the meeting. It involved a receiver placed on the table, that transferred sound to his hearing aid. But it required any person speaking to move the unit close enough to them to adequately pick up their voice. After the first couple of meetings, people would often forget to pass the receiver to whoever was talking. Eventually it became demoralizing to repeatedly ask colleagues to pass the unit. At another job it was a series of hallways that were difficult to navigate, just to reach the nearest restroom.
Mani speaks openly about his struggle with depression since 2010, when he suffered significant loss of sight. He believes anxiety and depression are an important issue to address within the Usher community, since coping with loss can at times go hand in hand with USH. Mani finds depression even more difficult to manage on a daily basis than the loss of vision itself. He believes it needs to be addressed separately, and stresses that there is a dearth of psychologists/therapists that understand and treat depression/anxiety from this perspective.
In 2010, Mani was forced to retire and go on disability. But he could not stop striving to do other great work. As a volunteer for the Usher Syndrome Coalition, he developed the Usher Registry, a global registry for the networking of researchers, connecting thousands of people with Usher Syndrome. He worked alone on the project for 3 years. But as he continued to lose his sight, doing software development became very challenging. In 2013 Mani decided to pursue his passion for poetry, and won a grant to the Vermont Studio Center, where he spent a month at the artist colony, writing in the company of fellow artists. That same year, he was accepted into the MFA program in poetry at Lesley University. Mani received his MFA in 2016, and is now a published poet. His poems have been published in Off the Coast, Poems2Go, and The Helikon Poetry Journal. His poem “The Book Collector” was translated to Hebrew.
When Mani isn’t working on poetry, he is learning new computer languages although he says it is becoming extremely difficult these days. Mani has also been learning Braille. He uses Voiceover screenreader program for the Mac and iPhone for his writing and online communicating.
When Mani communicates, either in person or through writing, one is stuck by his rich, internal world and beauty of soul.
“Losing my sight has been very difficult,” Mani says. “There is a fire inside me that tells me I should always be doing more than I’m doing, so I’m in a constant battle. All my life I was striving for more, striving for greatness. Now I’m working to accept myself, to stop beating myself up for what I’m not doing and feel good about what I CAN do. I am so fortunate. I have a wonderful wife. A beautiful family.”
Mani has been married 33 years, and says of his wife, Surekha, “I am the luckiest man in the world to have found her. She has been extremely understanding, supportive, and loving to me throughout this arduous life journey. And this, despite going through so much herself as the spouse of someone with USH.”
Mani has two children, a son and a daughter, he is immensely proud of. His son is a resident physician at San Francisco General Hospital. His daughter is a Research Coordinator at Beth Israel Deaconess Medical Center. He suspects his battle with USH made them mature beyond their years even as young children. Mani is most proud that they have grown up to be empathic, considerate, wonderful human beings.
ERG tests confirmed his children do not have Usher Syndrome. But due to the autosomal recessive nature of the gene, they are most certainly carriers.
Mani has a message for those who have Usher Syndrome. “Do not despair. There are a lot of resources, a lot of technology that can help us, and they keep growing and improving all the time. It is not going to be smooth or easy, but patience and perseverance will take us far. More than anything else, what gets in our way is the emotional piece, the baggage that comes with Usher Syndrome, and the sooner we learn to cope with it, the better our journey.
To the world I would like to say, losing two of our senses does not make us less human or less ‘normal’ (a word I hate). Just realize it is difficult to walk in our shoes. Support us in whatever way you can. Even a few kind words go a long way. Invite us into your fold and you will be surprised to learn how funny we can be!”