Mike (Alias)

Mike is a 28 year-old therapist with Leber’s Congenital Amaurosis (LCA), a degenerative condition that deteriorates the central vision and then spreads to the periphery. Though childhood was difficult for Mike, he found meaning in his life through his passion of helping others.

Mike’s story begins with his family emigrating from India in 1983.

While assimilating into a new culture and country, Mike’s parents noticed something off with Mike’s vision. He was running into furniture that should have been easily avoided.

His parents realized it was probably Mike’s vision, and so they sought medical help.

The first ophthalmologist claimed nothing was wrong with Mike, and his parents left relieved.

Unfortunately, the condition progressed and their suspicions returned, so they went for a second opinion. This next doctor noticed a problem in the retina. After further testing, Mike was diagnosed with Leber’s at 3 years old.

His parents were devastated, but rallied to support Mike to the best of their ability. As new arrivals in a foreign land, Mike’s parents were unfamiliar with the social and emotional support groups for the visually impaired. Because of that Mike coped on his own as a first generation American with progressive visual loss.

To correct some of his vision, Mike was fit with glasses.

“I was one of the only students with them. As a kid I thought that was the worst thing in the world.”

The other kids teased Mike for his glasses and for his visual habits. Mike was “weird” because he had to look at people from the sides of his eyes; a necessary habit due to his lack of central vision. So Mike appeared cross-eyed to his classmates, and they teased him for it.

“You know, school is like a jungle. Kids see another as prey, and everybody gangs up on them.”

One of the toughest moments for Mike was giving up competitive basketball. He loved the sport for its team dynamics, but the speed of the ball was too hard to follow, and it was difficult to handle passes.

“You can only say you’re a butterfingers for so long. Soon enough your teammates will start thinking something’s off with you.”

Mike was isolated by the LCA and by the way people perceived him because of it. He did not attend social or emotional support groups because his parents weren’t aware of any and the school didn’t provide them.

But his school did provide logistical aid via an individualized education plan (IEP). Through the IEP, Mike was appointed a teacher of the visually impaired (TVI).

Though Mike could have received more help, he was grateful for what he received through the program. Mike learned life skills he now uses everyday. They were things Mike found boring then, but now is infinitely grateful for. Mike learned how to use text reader programs and to type without sight. He even practiced with a cane.

“She had me doing all these things that I didn’t need yet. I felt like it was a waste of time. It was all a blessing in disguise.”

Mike’s TVI stressed the difficulty of living with vision loss. She knew developing these skills before needing them was crucial as it eased the transition from vision-dependence to vision-independent living. She was realistic early on when everyone else suggested it was too early to worry.

Mike was 15 when his parents, doctors and TVI explained the full extent of his condition.

Mike had the maturity then to see the glass both half-full and half-empty, he could still be hopeful while understanding it best to prepare for the worst.

“I wanted the answer straight: will I be able to drive?”

To his parents’ and doctors’ credit they did not sugarcoat their answer. Mike was told his chances of driving were slim. Though Mike did not like the answer, he appreciated the honesty.

This first question prompted others. The main question on Mike’s mind: What will I and what won’t I be able to do?

To get more answers, Mike investigated his condition on his own. There was one instance of research Mike will never forget.

“It was a timeline of vision loss for patients with LCA. An image of a woman was displayed, and she gradually lost the details of her facial features.”

Mike said that the reality of it was too much.

“I felt like I found myself on this visual display of vision loss. It freaked me out. Past, present, and future. I wish I hadn’t found that.”

With that video Mike let up on his personal research. He continued attending fundraisers and support groups, but his hope waned. And when it did, depression set in.

“I was not in a good place and I fell in with a bad crowd.”

“I was the one with the bad vision you know. When we’d get in trouble of course I’d be the first caught.”

And Mike was caught by the law, a mistake that became one of his biggest regrets.

“Not because of the trouble I got in, that was a good life lesson. It was the trauma I put my parents through. The last thing any parent wants is a call from the cops.”

Mike’s parents even warned him.

“‘You’re going to get in trouble. You’re going to get in trouble. You’re hanging out with the wrong crowd.’”

Mike shot back with all his teenage angst.

“I’m my own person, I’m going to get in trouble!”

And Mike paid the price. For six months he was held in a juvenile military  detention center.

“I was on a bad path. So I’m grateful for my LCA. There’s a chance if I wasn’t visually impaired I’d still be hanging out with that same crowd, and still getting in trouble.”

Mike knows that he would not be the person he is without his past. He needed a wake up call to take control of his life.

In 2007 Mike’s life took a turn for the better. Mike was attending a fundraiser for research in RP and LCA in San Jose. During the fundraiser Mike met a woman.

She asked Mike what he was interested in. Mike answered psychology, as he was and is fascinated with the mind and human experience.  

After chatting awhile the woman proposed a opportunity.

“She said that I should lead support groups for visually impaired youth. I guess she saw something in me that I didn’t see in myself at the time.”

Before he knew it Mike was working for a non-profit in Santa Clara County. He was leading support groups making kids smile and laugh.

Mike had a knack for counseling. The troubles of his past made Mike empathetic to the struggles of the youths he counseled. That and his charm made him an excellent counselor.

One afternoon a mother of one of the kids sat in on a group session. The session went well, and afterwards the mom approached him.

“She told me I was great with the kids, and I was a good role model. She got to talking about this camp, and said I’d be a great counselor.”

With a call and a short interview Mike got the job.

“At the time I was enrolled in school, but I wasn’t feeling it. I had enlisted in summer classes, but this opportunity just felt right.”

“Do you have plans this summer?” the camp asked.

“Yea, kinda,” Mike laughed.

Mike cancelled his classes and started working at the camp.

The camp is therapeutic in many dimensions, not just for the attendees but the counselors too.

The campgrounds are in a beautiful, secluded area in Napa Valley. The camp emphasizes recreation as a method of therapy.  There are creative outlets and exciting activities such as  kayaking and horseback riding. They even practice archery and play “beep” baseball with a ball located by sound.  

Beyond the activities, the camp is great inspiration. There were so many people with visual impairments from many walks of life and of all ages.  Many of the counselors had master’s degrees and even PhDs, JDs and MDs. But the one thing they all had in common was that they were visually impaired. Every one of them was living proof that despite visual impairment success is still attainable.

By having colleagues with college, graduate and professional degrees, Mike was motivated. At this camp Mike witnessed what his parents had always told him, but ultimately Mike needed to meet people who were living with vision loss to believe it was possible for himself. Mike’s colleagues were living inspiration for Mike and others at the camp.

“These were things I had to see and hear with my own two ears and own two eyes to have fully set in. When I met those people it hit me in the face, I could be an accomplished professional, just like them.”  

With all the chores and activities, attendees find themselves doing things they would not think they are capable of.

“Everyone does everything together. Some people take charge to start, then others learn through example.”

It was not long until even the shyest and least confident of the attendees were happily participating. The camp was like magic, it pulled people out of slumps and self-doubting attitudes.

During an arts and crafts session, Mike was helping a little girl with her project.

This girl had retinoblastoma at an early age and had both her eyes removed to keep the cancer from spreading. She wore two prosthetic eyes. But this girl was always happy, smiling and laughing, dancing and playing, wherever she went.

This girl was making a visor for her brother for his birthday. She wanted to make a red one for her brother because the girl knew that red was his favorite color.

As they were making the visor, the girl stopped and changed manner to ask something that was bugging her.

“I know I shouldn’t think about it because my mom teaches me to be thankful, but can I ask you something?” the girl started.

“Is it selfish that I wish I could have my vision for five minutes, just to see what my brother’s favorite color looks like?” the girl asked earnestly.

“Of course you’re not selfish,” Mike assured her, fighting back tears.

“This little girl doesn’t even know what a color looks like. She was five then, and she’ll never be able to see.”

Mike could feel how selfless this girl was. She was worried over her potential selfishness when she really was just curious of her brother’s favorite color.

“Before I used to feel sorry for myself and mope in my room. Here I am complaining about not being able to drive, not being able to do this or that, and then I meet this innocent little girl.”

This experience made Mike face his own issues in a new light.

“Yeah I have this one little obstacle, this one little struggle. But it really has gotten me to look at all the beauty in my life, and the beauty of the world in general.”

“Regardless of impairment, disability, whatever you want to call it, you can still have a very productive role in society. You can still accomplish your goals. You can still do what you want to do and be happy doing it.”

After seven summers of being a camp counselor, Mike cannot emphasize enough the therapeutic value of his camp and camps like them. Gathering big groups of people and spending quality time together had a positive momentum that is valuable beyond measure.

When asked if there was anything as challenging as vision loss for Mike, he answered frankly:

“To be honest, no. It’s just been the LCA, and I thank God that it is the biggest thing I have to deal with. I’ve been given a lot in my life, and I’m blessed not to have other problems.”

“Since I’m capable of giving back to others, I should, and I should do so as much as possible. I like helping people, and I really don’t know if I would have that goal of helping people without LCA.”

There was one thing Mike could not emphasize enough.

“Gratitude, gratitude, gratitude.  Gratitude and generosity, without a doubt. Appreciating what you have in your life and counting your blessings.”

“I heard it from my parents for so long, but I put it on the back burner, like we all do at that age.”

After Mike started working at the camp, Mike realized how thoughtful his parents were.

When the storm of his adolescence settled, Mike tied up the loose ends of his childhood.

“It really hit me one day, and not long after that we were sitting down and I told my parents: “You were right.”

“About what,” they asked.

“About everything.”

“And I could tell they really loved that. Like every parent is waiting for that moment, like I made their day. Made their life.”

Mike laughed happily, knowing full well they made his too.

Mike’s parents supported him through everything, from the very beginning. They encouraged Mike to try new things, and to do as much as possible--everything the mainstream kids did and more.

“We didn’t give him an option, there was no cannot,” his mom told us.

“Some parents don’t want their kids to leave the house. We encouraged him to leave. It’s better to explore, to adventure and learn. It doesn’t matter what disability they have, don’t make them feel like they are less than anybody else.”

A mother knows best. We all deserve the opportunity to come into our own no matter our differences.

Mike’s mom was not always positive, though. Things were difficult early on, when his future was still a mystery.

“I used to cry, worrying over what’s going to happen. But now we joke around. We laugh about it!”

“I’ve learned so much from Mike. He’s so strong. Without him I wouldn’t be as strong as I am.”

Mike is a therapist now. He supports those in need and inspires everyone around him. His desire to help others became a means to helping himself. Mike is living proof that people with vision loss can happily succeed.

“I’ve always found a way to do whatever it is, somehow someway. I just tailor it to the way I can do it. It may not be as exciting as if you do it mainstream. But it may even be more,” Mike said with a grin.