Vision Rehabilitation: A Client’s Story

Shanell Matos, a client of Lighthouse Guild since 2018, tells her story and talks about how Lighthouse Guild’s Vision Rehabilitation services changed her life. The 33-year-old resident of the Bronx is a stay at home mom and is working towards learning the skills needed to go back to school and finish her degree in psychology.

Q:  How has Lighthouse Guild impacted your life?
A: Who I am today is not who I was before I lost my vision. And that’s entirely thanks to the hard work of everyone at Lighthouse Guild. Some of the pieces I’ve lost I’ve managed to regain. But, I’ve also gained new ones. Sure, I’ve lost some as well, but I don’t miss them the way I thought I would. I have learned to find peace with who I have become through this metamorphosis of blindness.

Q:  How did you develop vision loss?
A: I have always been visually impaired, but I had so much usable vision it typically did not affect me very much. For the most part, it just meant I wasn’t going to be able to drive, and occasionally it took me a little longer to notice things. I was told at a very early age I would eventually go blind. But, like most young people, I believed I had more than enough time ahead of me. And, if I’m being honest, I prioritized other life difficulties ahead of future eventualities.

Q:  What was your childhood like?
A: I went through a lot. I helped my autistic mother raise my three younger siblings, survived homelessness, and regularly moved every two years. I came to believe that I was a strong, balanced, independent and resourceful person.

Q: Tell us about your life as a young adult?
A: The funny thing about life is it often teaches you how little you actually know just when you think you know it all. I eventually reached a point in my life where everything seemed to be going amazingly. I was in a loving relationship. I was engaged. I was living independently, and I was working toward my degree. All in all everything was on a positive track. I found out I was pregnant, which obviously was some of the best news I could have received. I had my beautiful baby girl in June 2015. I got married in November 2015. Then by January 2016, my vision was gone. I went from being able to see nearly everything to seeing only light.

Q: How did you cope?
A: I spent the next four years aimlessly doing the best I could with the very few skills I managed to figure out on my own. I had no resources, nowhere to turn, and while I had plenty of support, they didn’t know how to help me either. I no longer felt like a person. I was empty and broken. I felt like everything that made me myself was gone. I didn’t know how to be an individual much less a wife or mother. I felt like I was a disappointment to my husband who didn’t sign on for this. I felt like my daughter was short changed. I felt like a failure, a burden and useless. I literally had no hope left. No ambition left.

Q: How did you find out about Lighthouse Guild?
A: One day in a desperate attempt to make a change, I started googling low vision resources in New York City. Completely by accident, I clicked on something and it led me to Lighthouse Guild. That was the single best thing to ever happen to me. I got set up with Lighthouse Guild’s Vision Rehabilitation services.

Q: How has vision rehabilitation helped you regain basic life skills?
A: Of all the skills I needed to learn, orientation and mobility was the one I feared the most. The idea of traveling was terrifying. I was afraid of everything and everyone. I was convinced I was too vulnerable. I couldn’t see the possibility of success for myself. Jeff Ambury, was my first instructor at Lighthouse Guild. He is kind, calm, patient, and incredibly empathetic. Even through all of my fear he always made me feel safe. He never made me feel like my feelings were too much or wrong. He never pushed me harder than I was willing to push myself. He gave me the space to work out my own issues in my own time. His constant kindness and strength gave me the strength to be a little bit braver than I thought I could be. Each time I reached a little further he was incredibly supportive, and that gave me the confidence to try pushing my own limits and boundaries just a little bit more each time. And that has continued even to now. Thanks to Jeff and other Lighthouse Guild instructors, I am now able to travel independently.

Q: What other life skills have you learned?
A: Lily Harris at Lighthouse Guild, has helped me with my second biggest issue. When I met her I could not feed myself anything that was not pre-packaged and ready to eat without assistance. I could not use the stove or microwave. I was 100% dependent on everyone around me. This was a huge part of what made me feel broken beyond repair. I didn’t know how to organize anything. I was basically lost in my own space. Lily always fiercely believed in me even when I didn’t believe in myself. Now, thanks to all of her unwavering faith, I am able to cook and bake again. I’m feeding my own family without the assistance of everyone around me. My daughter and I even do kitchen experiments. I’m probably the most organized person in my family, and people are now asking me to help them organize their stuff. I’m finding ways every day to implement things from my sighted life into my blind life.

Q: How has Lighthouse Guild helped you as a mother?
A: Through Lighthouse Guild, I met a wonderful group of other moms who are blind or have low vision. That group has completely altered the course of my life as a mother.  Being able to connect with other women who have gone through similar issues has helped me tremendously.

Q: How has learning Braille helped you?
A: When I started classes at Lighthouse Guild, one of the major things I wanted to learn was Braille. My instructor Audrey Schading was a source of infinite inspiration for me.  Audrey was like having your best friend, your mom and your sister all rolled up into one amazing instructor. Thanks to her, I am now able to read for myself and I read to my daughter. In fact, I’ve been teaching my daughter to read. I’m able to label everything in my kitchen, and I can play games with my family again. I’ve started enjoying Braille art which has given art back to me. And, I’ve just generally felt more inspired to try new things.

Q:  What about computer skills?
A: I was incredibly intimidated by the idea of learning to use the computer. I thought it was going to be incredibly difficult, if not impossible. But my instructor Cheryl Chungs’ endlessly positive attitude set me completely at ease. She never judges my mistakes and is always patient, kind, and a fun person to work with.

Q: What would you like to say to the Lighthouse Guild team?
A: I am endlessly grateful for the amazing team I’ve had through this entire experience, and there are no words that can truly express just how much. Someday, I truly hope I’m able to give back to someone what was given to me from all of you. The gift you’ve given me is the courage and ability to go into the world and share who I am and what I know with others. You’ve given me the confidence to believe in myself again — not only as an individual, but as a teacher, friend, and part of the community. If I can help even one person who was where I was, thanks to the skills you taught me, then I will feel like I am worthy of the life you gave back to me. Thank you for everything you do and everything you continue to do. You don’t just change lives; you give people back their lives.