Living Closer to Blindness than Sight: Humility, Urgency, and Hope

09/23/2016 12:07 pm ET

My brother Peter and I are sitting at the bar of a delicious Italian eatery in Nolita called Il Buco Alimentari & Vinery   It’s taken us a little longer to order lunch today because I asked our waitress, Carmen, to read the menu to us.  On any other day, asking Carmen to read the menu would be unnecessary but Peter and I are doing lunch a little differently today.  

Back Story:

For those of you who don’t know me (in case my mom, grandma, and best friends aren’t the only ones reading this), my name is Rebecca Alexander, sister to NBC News correspondent Peter Alexander. I have an inherited genetic disorder called Usher Syndrome Type III. Usher Syndrome is the leading cause of deafblindness in the United States and around the world. There are three types of Usher Syndrome and although mine has the mildest onset, it is also the most recently identified with the smallest population of patients diagnosed (approx. 100 worldwide). Due to my hearing loss, I have a cochlear implant in my right ear and I wear a hearing aid in my left.  Without the use of these two assistive devices I am completely deaf.

Unfortunately, there are no assistive devices or technology to correct for my vision loss. A normally sighted person has 180 degrees of vision when looking straight ahead--I have just 10 degrees.  The vision loss part of my condition is characterized by what is known as Retinitis Pigmentosa or RP—a retinal degenerative condition that causes the cells of the retina to slowly die.

The easiest way to explain what my vision loss looks like is for you to take each of your hands, bringing the tips of your fingers to the tips of your thumbs to create what looks like the shape of the letter ‘O’—your hands taking the shape of a set of binoculars. Now hold your hand-shaped binoculars against the front of your eyes and look around you—look up, look down, look all around you, and try to imagine how you would navigate life if you could only see as much as you saw directly through the ‘O’s you’ve created with your hand binoculars. This is the best exercise I can think of to help you get an idea of what tunnel vision and progressive vision loss looks like.

Back at Il Buco, Peter and I have decided to take on the Foundation Fighting Blindness (FFB) #howeyeseeit challenge in which fully sighted people are challenged to perform everyday tasks or activities blindfolded. This challenge was created by FFB, not only to raise awareness and funds to treat blinding conditions—Retinitis Pigmentosa, Macular Degeneration, Stargardt’s Disease, and many others—but to help sighted people better understand the challenges that blind people overcome on a daily basis.

Peter is blindfolded and sitting on my right side—my “better ear” because of my cochlear implant. His posture is stiff and upright, as though he is sitting “at attention”, waiting for sergeant’s orders. Although his rigid stance looks awkward for him, it is one I am very familiar with as a member of the visually impaired/blind community. Many blind people sit or stand tall with strong posture —like military personnel—because without the ability to see, we rely keenly on our ability to hear (unless you have Usher Syndrome, of course—but that’s an op-ed for another day).

Peter fidgets while cautiously using his hands to locate his silverware, plate, and glass of water, struggling to find comfort in his temporarily blind circumstances.

RP most significantly affects a person’s ability to see at night or in the dark, which means that if we were having dinner in a typically dim-lit NYC restaurant, this meal would be a real debacle.

Luckily, it is lunchtime and this restaurant is fairly well-lit so I am able to see well enough to illustrate what the place looks like to my brother.

Often times blind or visually-impaired people find that having someone describe what their surroundings look like allows them a greater sense of comfort and orientation in their environment.

I use my index finger to outline the shape of the room and our location in it on Peter’s back. I make a small circle on his back and say, “We are sitting here, at the far end of the bar, close to the open industrial style kitchen, which is right here (I outline a bigger square to the right of where we are sitting to indicate the location of the kitchen in the room). There is one bartender standing in front of several long wall length horizontal rows of wine bottles (I continue by drawing lines to indicate the rows of wine bottles against the bar wall), and one other man sitting at the opposite end of the bar from us looking at porn on his phone.”

Peter: “He’s looking at what?!”

Me: “Just want to make sure you’re still with me here.” 

I continue to draw and describe the beautifully exposed brick wall behind us with a long booth and small tables fit for two people.

Peter listens attentively, carefully bringing his glass of water to his mouth, before slowly attempting to place the glass where he believes there is an open space on the table, above his place setting. He clinks the glass against his plate, brushes it across the bread basket, and skims the dish of olive oil, before placing it safely back on the table.

Peter resumes his alert, seated pose, inhales and quickly exhales, then says, “Wow, this is really difficult. Everyone should experience this. On the one hand, it makes me sad because I realize what dining out in a dark restaurant must feel like for you and on the other hand I feel a great sense of relief that I will be able to take this blindfold off when we are finished.”

The funny thing is, I feel a great sense of “able-bodied” pride in being able to help my brother while he is in this vulnerable position. I feel very protective of him, I want him to feel safe and know that he is not alone.

But I am also tremendously proud to be teaching him the tricks of the “blind trade”.

Carmen delivers our food and I serve some tomato salad and long leaves of romaine lettuce onto Peter’s plate. After several failed attempts at cutting the thin romaine lettuce leaves, I offer to cut them into smaller bite sized pieces for him.

Reluctantly, Peter agrees, and says, “Just don’t airplane the food into my mouth when you’re done, okay?”

I smile and say, “No promises.”

While cutting his lettuce, I explain, “When you can’t see the food on your plate, your best bet is to use the “sweep method.”

“What do you mean?” he asks.

“Take your fork in one hand and use your knife to sweep the food onto it with the other. You’ve got a much better shot at actually getting something on your fork that way.”

“Like this?” Peter sweeps the food on his plate with his knife onto his fork then steadily lifts the fork to his mouth as the food falls slowly back onto his plate.

Realizing that the food has not made the trip to his mouth, Peter chuckles and says, “We may be here a while.”

“How do you think blind people manage their weight so well?” I retort.

Peter smiles as he proudly chews the forkful of food he has successfully brought to his mouth. Our conversation is primarily dedicated to discussing how Peter is feeling throughout this experience. He uses words like, “difficult”, “embarrassing”, “frustrating”, and “humbling”. After finally chewing and swallowing a much bigger bite of fish than he’d anticipated, Peter says to me, “This is really hard. Do you feel self-conscious at all when you go out to eat and you can’t see what’s in front of you?”

I explain how I used to feel uncomfortable and self-conscious when I went out to eat. But, that was at a time when I was still coming to terms with my condition. Now, I have no shame in asking someone to cut my food into smaller pieces or bring my glass of water to my hand if I can’t find it. I’ve knocked over enough glasses of red wine to have learned my lesson that I need to ask for help if I need it.

As Carmen clears our dishes, she asks if we'd like to see a dessert menu.  I look at Peter, still maintaining his tall, firm stance, and say, “Well, I could look at the dessert menu but I can’t read the small print on it and my side-kick here is a lost cause, so I think we’ll pass.”

Peter shrugs his shoulders, turns to where he thinks Carmen is standing—he’s about 8 inches off--and says, “sorry Camen, rough crowd here today.” Carmen nods and smiles, and leaves us to bring our check.

As Carmen reaches to clear off the remnants of our messy lunch from the table, I thank her and tell her that I’d be happy to take home a doggy bag with a slice of chocolate cake in it because Peter is picking up the check!

 I turn back to Peter, who looks defeated, and say, “Okay, you can take the blindfold off now.”

Peter removes the blindfold from his eyes, his shoulders immediately relax. He looks around to orient himself, this time with his vision then looks at me and says, “You’re one tough cookie. I’m so glad we did this.”

I relinquish my responsibilities as his “lunch guide” and say, “Me too.”

I would encourage everyone to take the Foundation Fighting Blindness #howeyeseeit challenge. Make sure to have a “guide” with you for safety. Try one of your everyday activities blindfolded—if you know your own home or personal space like the back of your hand, try pushing yourself further out of your comfort zone to try something new—blindfolded. Whatever activity you choose, be sure that your “guide” asks you the following questions: What is the first thing you notice once you’re blindfolded? What are the strongest three feelings you experience without the ability to see? And how long are you able to keep the blindfold on before you feel the urge to take it off?  Now, imagine if this was your life everyday.

With only 10 degrees of vision, I am a woman living closer to blindness than I am to sight. The three most common and compelling emotions I experience on a daily basis are feelings of humility, urgency, and hope.

To learn more about the Foundation Fighting Blindness and the #howeyeseeit challenge, go to: www.blindness.org

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