Cause of blindness - Leber’s Congenital Amaurosis (LCA)
Mandeep is a 28 year-old therapist with Leber’s Congenital Amaurosis (LCA), a degenerative condition that starts deteriorating central vision and then the periphery. Though childhood was difficult, Mandeep found meaning through his passion of helping others.
Mandeep’s story begins with his family emigrating from India in 1983.
While assimilating into a new culture and country, Mandeep’s parents noticed something wrong with Mandeep’s vision. He was running into furniture that should have been easily avoided.
His parents realized it was probably Mandeep’s vision. They sought medical help, but the first ophthalmologist claimed nothing was wrong with Mandeep.
Unfortunately, the condition progressed and their suspicions returned, so they went for a second opinion. This next doctor noticed a problem in his retina. After further testing, Mandeep was diagnosed with Leber’s at 3 years old.
His parents were devastated, but rallied to support Mandeep to the best of their ability. Nevertheless, as new arrivals in a foreign land, Mandeep’s parents were unfamiliar with the social and emotional support groups for the visually impaired. Because of that Mandeep coped on his own as a first generation American with progressive visual loss.
To correct some of his vision, Mandeep 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 Mandeep for his glasses and for his visual impairment. Mandeep 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 Mandeep 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.”
Mandeep 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, Mandeep was appointed a teacher of the visually impaired (TVI).
Though Mandeep could have received more help, he was grateful for what he received through the program. Mandeep learned life skills he now uses everyday. They were things Mandeep found boring then, but now is infinitely grateful for. Mandeep learned how to use text reader programs and to type without sight. He even practiced with a cane.
“[My TVI] 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.”
Mandeep’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.
Mandeep was 15 when his parents, doctors and TVI explained the full extent of his condition.
Of course Mandeep’s parents were encouraging; they believed he deserved every opportunity available to him. They wanted him to live positively, to focus on what was possible and do what he still could despite his vision loss.
“Some parents don’t want their kids to leave the house. We encouraged Mandeep 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.”
“We didn’t give him an option, there was no ‘cannot’.”
On the other hand, Mandeep saw 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. Mandeep was told his chances of driving were slim. Though Mandeep did not like the answer, he appreciated the honesty.
This first question prompted others. The main question on Mandeep’s mind: What will I and what won’t I be able to do?
Mandeep investigated how the LCA would progress, and how that would shape his future. There was one instance of research Mandeep 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.”
Mandeep said that the reality of it was too much.
“I found myself on this vision loss timeline. It freaked me out. Past, present, and future. I wish I hadn’t found that.”
After discovering that video Mandeep 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 Mandeep was caught by the police, 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.”
Mandeep’s parents even warned him.
“‘You’re going to get in trouble. You’re hanging out with the wrong crowd.’”
Mandeep shot back with all his teenage angst.
“I’m my own person, I’m going to get in trouble!”
And Mandeep 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.”
Mandeep 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 Mandeep’s life took a turn for the better. Mandeep was attending a fundraiser for research in RP and LCA in San Jose, CA. During the fundraiser Mandeep met a woman that proposed an 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 Mandeep was working for a non-profit in Santa Clara County. He was leading support groups making kids smile and laugh.
Mandeep had a knack for counseling. The troubles of his past made Mandeep 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 a camp for the visually impaired, and said I’d be a great counselor.”
After a call and a short interview, Mandeep 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,” Mandeep laughed.
Mandeep cancelled his classes and started working at the camp.
The camp proved therapeutic for both the attendees and the counselors in many ways. 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 a 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.
At this camp Mandeep witnessed what his parents had always told him: you can be successful in life with vision loss. Ultimately Mandeep needed to meet people who were living with vision loss to believe it was possible. Mandeep’s colleagues became living inspiration for Mandeep and others at the camp.
“These were things I had to see and hear with my own eyes and ears 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 by 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, Mandeep 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 it isn’t selfish,” Mandeep 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.”
Mandeep 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 Mandeep 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, Mandeep cannot emphasize enough the therapeutic value of his camp and camps like them. Gathering big groups of people and spending quality time together created a positive momentum that is valuable beyond measure.
When asked if there was anything as challenging as vision loss for Mandeep, 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 Mandeep 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 Mandeep started working at the camp, Mandeep realized how thoughtful his parents were.
When the storm of his adolescence settled, Mandeep 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.
“And I could tell they really loved that. Like every parent is waiting for that moment, like I made their day. Made their life.”
Mandeep laughed heartily knowing full well they made his too.
Mandeep’s parents supported him through everything, from the very beginning. They encouraged Mandeep to try new things, and to do as much as possible--everything the mainstream kids did and more.
Mandeep’s parents had worried, but ultimately they encouraged Mandeep to make his own decisions, and that freedom allowed Mandeep to grow into the man he is today. His mom confessed:
“I used to cry, worrying over what would happen to Mandeep. But now we joke around. We laugh about it!”
“I’ve learned so much from Mandeep. He’s so strong. Without him I wouldn’t be as strong as I am.”
Now Mandeep is a therapist; he supports those in need and inspires everyone around him.
“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.” Mandeep said with a grin. “But it may even be more.”
To learn more about Mandeep's condition, continue here.