“There’s beauty even when you can’t see.”

Abby Stein

Over the past few months, lifelong Barrington resident Abby Stein has been stripped of something so innate most people don’t think twice about it — her ability to see the world around her.

“At the end of August, I started having problems with my sight. I felt like I was getting migraines, but I never got a headache. I went to my eye doctor, who said my eyes were perfectly fine. So I went to a specialist, who also said I was perfectly fine. I saw a neurologist, who sent me to the only neuro ophthalmologist in the state, who got me right in the next day instead of the eight-week wait I expected,” Stein said.

That’s when things took a turn in an unexpected direction.

“She looked at my eyes and said, ‘I think I know what you have.’ So we did the testing and talked about it the next time I came in. She looked at her computer and said, ‘I was afraid of this,’ ” Stein recounted.

Stein was diagnosed with Lebers Hereditary Optic Neuropathy, or LHON, a very rare genetic eye disorder found in .04% of the human population, which has caused her to lose sight to the point of legal blindness. Stein’s particular variant is even more rare, having been diagnosed in only four people worldwide. “It’s a very small population of a very small population,” she said.

“This disease affects your central vision, which is what you use to see everything. As of right now, I still have some peripheral vision, which is good. You can’t really find a light that’s right for your eyes though — they’re all different tones. Even if you have lights on in a room, they’re still just little spots of light,” Stein said.

A loss of self

To lose one’s sense of sight is life changing and tragic, but those who know Abby know this is bigger than just sight — it’s the loss of a part of her identity, self-expression, and where she finds much of her joy.

“I’m a light person. I love a lot of light. I’m a colorful person. Now I see in black and white. I love every color. On my porch in the summer, I have every color glass bottle you can imagine, every color flower. My deck is just beautiful! Now it’s just going to be black and white. Anyone who knows me knows that’s no joke for Abby,” she said, “I have a convertible Volkswagen that I love. It’s the one love I have three months out of the year. I have to sell it. People know me for my Volkswagen. Life is just not going to be the same.”

In the earlier days of the development of her condition, Stein experienced a lot of confusion and worry of the unknown. She said, “My eyes started changing every day. I kept asking my friends if they believed me, and they were like, ‘Yes, we believe you, we believe you!’ I didn’t really know what was going to happen to me. It totally freaked me out. I remember I was walking my dog around the block, and she kind of got me off track, so I went down the next street instead of the street I was supposed to go down, and it was a four-way intersection. I stood there and I had no idea where I was. I was turning around in circles and I started to panic. I called my friend Emily and the realization hit me like a ton of bricks. Like, I can’t recognize things. I can’t walk my dog anymore.”

The presentation of LHON progressed very quickly for Stein, with new and worsening symptoms arising constantly. “I went to the Services For The Blind And Visually Impaired, and the woman said, ‘I don’t think you need to be here,’ and I said, ‘I don’t think I need to be here either.’ Three weeks later, I had someone in my house teaching me how to use a cane.”

Life changes

Now, even after months of this new life, Stein still wakes up every day not knowing what to expect. About a week ago, things took a turn for the worse. “For the past eight days, it’s been dark. I’m literally sitting in the dark. A week in the dark is just too long. I live with my son, but he works, and I’m basically alone, aside from my dog. I can’t see my dog’s face anymore. That breaks my heart. I could cry just thinking about that. I talk to my friends, but I’m basically by myself.”

Entertainment has even been increasingly restricted for Stein throughout these days in the dark. “I can’t see the TV. I can’t read a book. I can’t even listen to a podcast because I can’t see my phone to find one! Someone from the state is going to teach me how to use my phone again. My phone will work with me and tell me what’s there. It’ll actually read it to me. It’s really interesting; I’m all for the iPhone. The accessibility is amazing. I also have a man coming to teach me how to use the computer again. I haven’t been on the computer by myself since Sept. 1. That’s been really hard. I miss Google, and Facebook. I’ll admit it!” she laughed.

The support of friends

In the midst of all this struggle, however, Stein has found support, and gratitude. “This community is wonderful. I believe that anyone with a specific issue should really connect with a community. It’s extremely important. The friends I have, the support I’m getting, it’s unbelievable. If I didn’t have these people, these friends in my life, I’d be in a rehab somewhere, because I keep falling. I’ve been in and out of the hospital a few times. Last night I tripped over my printer. I’m just falling all the time. You don’t notice the things in front of you that you could see before. You just walk into things. You have to relearn everything. Last night after I fell, I wanted to put a heating pad on my back, but I couldn’t get the plug in. It’s those things that are really frustrating,” she said.

In addition to the physical and emotional support she’s found within her loved ones and community, Stein has also received monetary assistance for her journey ahead, which she is endlessly grateful for. “I had a GoFundMe, which, believe me, I was embarrassed to do. My friend Cynthia talked me into it. I raised over $4,500. Even from people I don’t know! People have just been incredible. That’s really going to help me over these next couple of months. I really want the people from GoFundMe to know how thankful I am. You have no idea what that means to me,” she said.

Another way Stein has connected with her community, even long before the onset of her condition, is her career. She has dedicated her life to improving the mental wellbeing of others as a therapist, which she hopes to continue to do for as long as her LHNO allows. She has been working remotely through telehealth, finding ways to continually connect with and support her clients. She said, “My clients and work keep me motivated, and they keep my going.”

A worldwide community

On top of those in her circle, Stein has connected with people worldwide in her situation, who, in helping her feel less alone, have become friends. She said, “My friend Emily helped me get in contact with the LHON Association, and the woman wrote Emily back in the same day. She’s just lovely, and she got me hooked up with people who can call me and tell me what’s going on in their lives and their stories and what happened to them. A man today, Pedro from Brazil, wrote and said ‘I’m happy to meet you already!’ People reach out and they’re just so nice. The LHON Association woman also found two other people that have my strain - she works for the FBI, I swear to God.”

Through expanding her knowledge and connection with others affected by LHON, Stein has regained hope for the potential of one day returning to her former life. She said, “One of the people I talk to, his mother had it severely. She was really badly impaired. She woke up one morning and could see. One girl, she’s very sweet, started losing vision when she was 15. She’s 24 now, and she’s getting her sight back. It’s not perfect. She wears special binoculars so she can drive in the day. She’s starting to see colors, and she’s not even considered legally blind anymore. Most people don’t have those stories, but I want to believe that I have that story. I just want to.”

Stein is keenly aware that her future is full of uncertainty, but she has found peace and comfort in the love and hope she holds so dearly. “My vision hasn’t stopped changing, and I don’t know if it ever will. You don’t know. But my job and my friends are what fill me. And my dog. There’s beauty even when you can’t see.”