Dr. Andrea Lendaris’ Story

Dr. Andrea Lendaris has Usher’s Syndrome, a rare genetic disease affecting hearing and vision. It causes deafness or hearing loss and an eye disease called retinitis pigmentosa (RP). Dr. Lendaris describes her vision as “different in the day, and it’s different at night.” It is extremely focused central vision, and at night that is even narrower, which makes seeing more difficult. For example, if she is sitting across the table from somebody and looking into their eyes, and they are talking, she can only see one at a time, but she can’t see their lips. So, if she is going to speech read, she will look at their lips, and that means she can’t see the rest of their face.

Since Dr. Lendaris was born in the 70s, genetic panels for testing did not exist, so she was not diagnosed with hearing loss until she failed a hearing screening in second grade and didn’t know about her vision until high school.

Dr. Lendaris remembers, “When I thought I needed glasses, I went in for an examination, and they looked into the back of my eyes and saw the disease. So, I kind of stumbled into learning that my experience with the world is not everybody else’s. Then you have to figure out what you are missing because you don’t feel like you are missing something when you are not aware that you are not perceiving things the same as everybody else.”

She taught herself to speech read, and in fact, she taught her best friend as well and so she made it seem to her friend that it was normal to just look at people’s mouths to figure out what they were saying. They ended up being able to talk across the room by speech reading for years. She admits; however, she didn’t know that she was missing things.

When she was told she was hard of hearing, she says she resisted it. She remembers being fitted with a hearing aid and being sent to school, but she didn’t know how to socially handle it. She ended up not wearing the hearing aid because, she says, “I thought I was doing fine in school, and I am speech reading, and I was being very stubborn about it.”

Once in junior high, she considered wearing smaller hearing aids in both ears in the classroom, but she still hid them. It wasn’t until college that she realized how much more she could hear and interact with her environment. It was in college when she met other people from other diverse backgrounds that gave her a moment of pause. Her friends were open about private things about themselves. Being around people like that gave her the confidence that it is okay to be different.

When she found out about her diagnosis of RP, it was devastating. She remembers thinking not only is the physician telling her that she is losing vision, but they are not sure when and that there is no treatment, but maybe if she took vitamin A, it might slow it down. There was no clear answer.

“The most difficult thing with my vision loss is when I was first diagnosed. I was still able to drive and take driver’s [education] and feel like a normal teenager, and then I had to give that up. That was a reality check for me when I was in my twenties.” Dr. Lendaris says.

She said a physician told her, “You may just want to go down the vocational route instead of college.” Dr. Lendaris loved science and math. At the time, she was already in advanced calculus and a sophomore in high school, and she just felt like her world had crashed. Thankfully, her mother didn’t listen to that physician, and Dr. Lendaris continued her academic path.

She says, “It was hard going back to school because I was like, okay, I am visually impaired. I was comfortable telling my school, but if you are blind, you need XYZ. If you are sighted, you don’t need anything, and the land in between was not well established for me and other people to understand what I needed. I made do with what I could. I never asked for accommodations until more recently in my life. And technology has changed, and that has also given me more independence.”

Another challenge was attending a public school that was going through a rezoning of students from different cultures, long distances, and varied economic backgrounds. Added to that was the backdrop of the 1990’s rise in violence in NYC, and Dr. Lendaris said she was in a school where there were shootouts and muggings on a routine basis. She says, “It wasn’t just my personal experience that I was struggling to find my way through, but also being in this environment of sitting on the edge.”

Pursuing Medicine

Dr. Lendaris thinks the challenges she faced going to school were part of the reason she took a longer road to pursue medicine which takes a lot of attention and concentration. She skipped a grade in high school to get out of the challenging environment. She was also advanced in math, science, and other classes in middle and high school.

And then, in college, she really loved speech pathology. Dr. Lendaris says, “It was learning how to work with people, and I think probably some part of me healed in just how you integrate into a world whether you are at school age or adults, and you acquired communication difficulties or swallowing difficulties, and I just found that very meaningful. And I enjoyed it. I knew if I wanted a career in that area, I had to go straight through and get a master’s degree, and that’s what I did.”

After she completed her master’s, she moved to San Francisco and lived there for five years. It was there that she completed her fellowship in speech pathology. She picked a city with public transportation, and her roommates and friends had cars, so she got to go hiking and ski diving and took a trip to Australia. She says it was her way of branching out and seeing things differently. She also met her husband.

Dr. Lendaris moved back to New York when she and her husband wanted to have children because she wanted to be near her mother and family. When she came back to New York, she was working in speech therapy, and she wanted to take the next step: advocate for patients and get involved with healthcare. She says, “I think it’s a fundamental right, if you will, to be able to take care of yourself, being able to take care of your family, for your health, and I like the idea of advocating and seeing someone more as a whole person.”

To Be a Patient and to Treat a Patient

She and her husband sat down and discussed her new path toward medicine. Dr. Lendaris shares, “I didn’t think I could do medicine, and I had a lot of angst — is it ethical, is this something I can do, can I be a patient and treat a patient, will my patients trust me, will I be a good doctor, all those insecurities.” She talked with doctors at the National Institutes of Health (NIH), and new specialists since returning to New York, and asked everybody, “do you think I can do this, is it okay?”

She wanted to do it but was concerned she would not be able to do it the same way as somebody else. She ran many different scenarios, concerned that she would not be able to respond appropriately. What if her patient saw that she could not see or couldn’t hear? Would they feel that she was not treating them, right?

Thankfully, the doctors taking care of her felt just the opposite. They said no, you would never be in a situation alone, and things are structured so that patients can be taken care of properly.

For Dr. Lendaris, becoming a physician with a visual and hearing impairment has enabled her to use her presence with her patients. She says, “I step into a room, and before I even start looking or listening, I’m observing and feeling the energy in the room. I try to remember when I walk into a patient’s room that this is not a high moment in their life. This is a serious situation and a tragic time for them, and I enter the space where I am sensitive to that, and then I listen. And even though I am hard of hearing, I use all my communication skills. Am I sitting in an optimal space for them, am I at their level, or am I sitting in a chair? I try to connect with people through my communication. Then we hear each other beyond just the logistics over the bells and alarms that are going off. Am I able to connect with them, and do they feel heard and respected? That is a major bottom line for me as a doctor.”

She continues, “And with the vision, yes, I’m a neurologist, and what if I don’t see their reflexes? I had all these insecurities about whether I can check my reflexes or what if I didn’t see their reflex response. I learned how to reposition my hands and use certain markers on the body, such as where certain bone prominences are and where the tendons are, so I don’t need to look there. I can look for where I’m going to see the reflex response. That is how I learned to tweak myself. But within that, I think my patients are really getting a more comprehensive assessment.”

Connecting with Lighthouse Guild

Interestingly, the Lighthouse Guild has had a role that slowly has been threaded through her life. In the first year of college, around 1995, she learned about Lighthouse Guild when she applied for and received a Career Incentive and Achievement Award, with a monetary gift of $5,000. She said that was a significant boost to her confidence. Receiving such an award made her realize a community exists that supports people with disabilities. She says, “I also think that was one of those moments when my mom was lifted. Maybe reassured that I will be all right and that there is success out there for me. I think the award did a lot on that emotional front and gave me confidence.”

When she returned to New York in 2006, she began looking for resources, and that’s when she connected with Dr. Bruce Rosenthal, Chief of Low Vision Services. They tried different lenses for her vision. Dr. Lendaris says he was willing to be creative with whatever technology was available, and he would tell her to let him know what she needed.

Dr. Lendaris shares, “Dr. Rosenthal was always of the mindset of, just find another tool. Think of it like a tool. You must think of what will help you get the input of information you need. And I felt that was it. That gave me this permission to start looking for tools that will help with the input. There is nothing wrong with me. I just have a different input system. And that’s where the strength that made this shift come from.”

Dr. Rosenthal told her technology had changed, and he suggested they register her with the New York State Commission for the Blind (NYSCB) as legally blind. This would enable her to get the services to help maximize and possibly improve her visual function.

Mobility and Independent Living Skills

Lighthouse Guild came to Dr. Lendaris ‘s home to provide mobility training, teaching her how to navigate using a white cane. She also received training to help her safely cook in her kitchen. She says, “I learned to always place the handles of the cooking pots inward and not outward, so I don’t bump into them. Little things you wouldn’t normally think of gave me that confidence and boost to feel I can do this.”

She continues, “One of the important things to someone who is visually impaired is the acceptance that you are not going to find something that will take it away. Hopefully, there will be something for a cure for your condition. Still, it’s more about how I can interact and function in this environment as safely and independently as possible.”

Dr. Lendaris shares that Lighthouse Guild helped her when she had insecurities and emotions while pregnant with her son Lukas. It was at a time when she was wondering whether a blind person could have a baby. For her, it always came back as an ethical question of whether she should be doing this. One of the things she worried about was what if she was in the apartment alone and there is a fire, and she would need to carry the baby down the stairs. She was thinking about the worst-case scenario and Lighthouse Guild put all of that at ease. She says, “They showed me how to do it. Because I am also hard of hearing, I got a vibrating monitor so I could feel it vibrating instead of hearing it. I go into the crib at night, and I need to put a night light on, but I also know how to feel for the top of his head and then come down so that I know where his body is. There are little tips that gave me the independence to be the mom that I wanted to be and not have to depend only on my husband to go and pick up the baby. So, it was wonderful, truly wonderful.”

Technology

Dr. Lendaris also met with occupational therapist, Inna Babaeva, who introduced her to all the state-of-the-art possibilities in the Technology Center. She plans to check it out more closely soon. Dr. Lendaris says, “I’m wondering if there is a voice dictation that I can use. Even if just to make myself more efficient at work. A lot of my work requires using the computer and electronic medical records, and I cannot see the entire screen at the same time either. Knowing where the information is or where to look for things, such as trying to find the mouse, or finding what you are looking for, becomes low-level energy things that require me to spend time doing my job.”

Shine the Light

Dr. Lendaris says Lighthouse Guild is where you can get medical care and have the measurements and objective things sorted out for you. And more complimentary are all the other programs and resources that help you rise to the optimal person you can be. You become engaged in your environment most independently and efficiently. She says, “It’s more than just the tools that they can offer you, but the support and the people that help you get that confidence to achieve it. It’s not just your medical care. It’s looking at you as a whole person. And it’s not just for people who are completely blind, and I think that’s important to share and accept that the circle is bigger than that.”

Today Dr. Lendaris shares, “I am very much in an ongoing process of learning how to manage my vision and hearing impairments. It was only in the last five years that I found the right mobility cane and the confidence to use it on a routine basis.” 

This summer, Dr. Lendaris began interviewing for an attending physician position. For the first time, she walked into each of these interviews with her mobility cane and spoke openly about the tools she uses to enable her to be a physician. She speaks. “It was empowering to say the least.” Dr. Lendaris hopes to shine a light on the spectrum of visual impairments and how the Lighthouse Guild is a place that can provide the medical, emotional, and technological support needed for success.