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Second Sense - Beyond Vision Loss

Nicole’s Story

Nicole wears a "Blind Skier" vest and holds her skis alongside her husband Gino on the slopes in Utah,

Nicole worked in downtown Chicago as the executive assistant to the CEO of a private equity firm. She drove to the train station, hopped on Metra and took a bus to her office.

Like most of us, she took all this for granted. Then, one day she lost vision in her right eye, seemingly out of nowhere. Nicole’s first thought was that she needed new contacts.

Nicole knew that Leber’s Hereditary Optic Neuropathy (LHON) ran her family. But LHON most often (80-90% of the time) affects males, and the age of onset is typically between the ages of 15-20. Nicole is a female and was in her late 30s at the time of her diagnosis. So, when the doctor told her that she had LHON, she was stunned.

Six months after the initial vision loss in her right eye, Nicole was driving home from the train station and noticed a loss of vision in her left eye.

Nicole’s job required working in front of a computer all day reading documents and spreadsheets, close-up work that required a high level of accuracy. After losing vision in her right eye, Nicole took a leave of absence. She did not feel that she would be able to fulfill the duties of her job at the high level that she expected of herself.

She did return to work for a period of time, but soon realized that adjusting to vision loss would be a long process and require her to re-train in many of the basic skills. Skills that she had performed for many years with ease. So, Nicole made the difficult decision to leave the job she loved.

Her next step was to call Second Sense, the organization her neuro-ophthalmologist suggested.

Everyone has a different path from new vision loss to life as an independent blind person. It may be one skill, one event or one person who sets them on their path.

For Nicole, that person was Marv.

Marv has been a volunteer technology tutor at Second Sense for 20 years. He works individually with our clients. For some clients, it is just a few sessions to learn one specific skill or address a specific issue. For others, training is more comprehensive and lasts longer.

Nicole started working with Marv for iPhone training during the pandemic. They worked remotely, with phone sessions nearly every week since August 2020.

To use her iPhone, Nicole had to start out learning the VoiceOver gestures — swipes and taps that allow her to operate the phone without having to seeing the screen.

These gestures can be as simple as tapping the screen with two fingers. Or as complex as using the rotor — where the user places their fingers on the screen and mimics the turning of a dial. Each turn gives the user a different option, such as setting the speech rate or hearing a list of links.

This can be challenging to learn remotely, so it does take time.

Nicole then moved onto the basics — deleting voicemail, entering dates in the calendar, and organizing apps. Now they are working on more advanced skills. “One of the first things I learned was to arrange an Uber ride,” Nicole shared.

A focus of all our training is to meet the client’s immediate needs. So Marv made sure to put this skill at the top of the list.

Nicole did have some mobility training. She learned the basic cane skills and learned how to cross streets. However, Nicole lives in the suburbs in an area that is surrounded by very busy streets with complex intersections. Since there are no buses or a safe walking route to the Metra train station, she has had to rely on Uber to get her to where she needs to go.

“I use my phone daily. I don’t know how I would get around without it. It is everything. If I didn’t know how to use it, I would be housebound.”

Since Marv is also blind, he often connects on a more personal level with clients.

This is definitely the case with Nicole.

She and Marv met in-person for the first time in November. “It was like meeting a member of my family,” Nicole explained.

In addition to training, Marv and Nicole discussed other things during their sessions. Marv told Nicole about his guitar lessons. And how he belongs to a band that plays in local bars and at the farmer’s market during the summer.

So, Nicole thought, “Maybe I can learn guitar.” And she signed up with Marv’s instructor. She and her mother make a day of it. “Every week, we go out for Taco Tuesday and then head to the lesson.”

Nicole has taken up other activities since losing her vision. She had been a very active runner prior to losing her vision, running both the Chicago and New York Marathons. So, she wanted to find a way to remain active after vision loss. She and her husband, Gino, learned about the many programs offered at the National Ability Center (NAC) in Park City, Utah. They thought it would be a good place for Nicole to visit and expand her horizons athletically with instructors who have experience working with people with vision loss.

The NAC offers skiing lessons, using a sighted guide. The guide skis just behind the blind skier, giving verbal directions as they go. Nicole decided to give it a shot. “I would never have done this if I wasn’t blind. Now that I don’t see, I don’t see anything to make me afraid.”

Nicole is also participating in group cooking lessons with her friend, Maggie. Cody, our Certified Vision Rehabilitation Therapist, holds the lessons in Maggie’s kitchen. “I have definitely gained confidence. I think the most important skill I learned so far is cutting safely, tucking my fingers away from the blade.

“The lessons are so much fun! We are not afraid to make simple mistakes and are always laughing. I told Maggie we should start our own YouTube channel.”

Nicole’s training has just begun. She is going to expand her technology training with our computer instructor. So she can learn to use a PC again. This time with a screen reader.

“I worked on a computer all day long in my job. Now I am like a three-year-old. I am always asking my husband for help. I want to be able to open Google, search the web, and go on Facebook. It may sound silly, or simple, but these are some of the things that I miss.”

Nicole is also on the wait list for additional Orientation and Mobility training. She wants to take one skill at a time, so she can focus and achieve her goals. With mobility training, she wants to be able to walk around her neighborhood and use the local walking path to take her dog for a walk.

The skills she is learning —and those she plans to learn— are all part of a full, active, and independent life. A life Nicole is willing to work for.