1) Why the name Blind Motherhood?
The reason the site is called Blind Motherhood is two fold. First and most obviously, I am a legally blind mother of two little girls. My disability impacts my life and the lives of my children every day.
Secondly, I think all women, and parents in general, are somewhat “blind” when they hold a child in their arms for the first time. Make no mistake; being a mommy is not like it is in the movies. It’s a messy, funny, scary and amazing job.
Want to see how it feels to be me? Take your hand, completely cover your left eye and then squint your right eye down as hard as you can until you can just make out a tiny bit of light. Now without going back to your normal vision, go chase a toddler! Not too easy.
2) Was your vision loss immediate or gradual?
My vision started to change in 2009 when I began to experience horrible headaches. After being diagnosed with ocular hypertension, my vision continued to decrease. I first lost my peripheral vision, then my color vision. Depth perception and night vision then deteriorated. Eye examinations showed steady decline of vision loss. On January 3, 2012, I went to work like any other normal day, but came home with a horrible headache. I took a nap, hoping it would alleviate the pain and woke up legally blind.
3) How did you first react when you lost your vision?
My emotions really varied. At first, it was fear. Being in darkness and not being able to make out loved ones faces was absolutely terrifying. Then came the sadness. I was completely devastated that this had become my life. I questioned living; I even contemplated suicide. I then fell into a deep depression, but thankfully my experience as a social worker prompted me to seek professional help. I began weekly counseling sessions with a licensed psychotherapist. I also went back to my faith in God. Having been raised Catholic; prayer brought me a lot of comfort. My therapist told me I needed to mourn my vision loss like the loss of a loved one. It was a long grieving process.
4) Did you ever think your husband was going to leave you?
I get this question a lot and quite honestly the answer is no. My husband has always stood by me. He is my rock. I also figured if he hadn’t left me after ten years that included a lot of bitching and nagging, then he probably wasn’t going anywhere.
5) Were you born with pre-existing vision issues?
No, I always had perfect 20/20 vision prior to my breast cancer diagnosis and treatment. My husband likes to say when we first met; I had “eagles eyes.”
6) What do you mean when you say your blindness is a “neurological issue?”
My optic nerves, which are located behind the eye, aren’t sending signals to my brain to make me see. My vision loss relates directly to my brain, otherwise my eyes themselves are relatively healthy, which is not the case for most people.
7) What is the status of your vision?
I have absolutely no vision in my left eye. I see nothing out of it, not even flickers of light. My right eye has 20/800 vision. In the center of that eye I have a very small pocket of residual or remaining vision.
8) What can you see?
I can easily make out shapes, shadows and with the help of technology, I can even read large print. Depending on what I’m looking at I may have to bring an object closer to my face to see it more clearly. I often tell people the way I see is like looking through the top of a saltshaker, sometimes if I change my head position, the object becomes more in focus.
9) What’s the difference between being “blind” and being “legally” blind?
Being “blind” means having absolutely no vision at all, not even light perception. Legal blindness is a term developed and used in the Social Security Act of 1935. In 1934, the American Medical Association defined “legally blind” as having “central visual acuity of 20/200 or less in the better eye with corrective glasses or central visual acuity of more than 20/200 if there is a visual field defect in which the peripheral field is contracted to such an extent that the widest diameter of the visual field subtends an angular distance no greater than 20 degrees in the better eye” (Koestler, 1976).
Simply stated, having a visual acuity of 20/200 means that even with the most powerful corrective lenses available, a legally blind person can be no further than 20 feet away from the object to see the details that a person with normal vision (20/20) can see from 200 feet away. It’s also important to know that even when the legally blind person is 20 feet away from the object, others with unimpaired vision cannot assume that this person can see all the details that they are able to see.
10) Does being classified as “legally” blind mean you have no vision?
No, legal blindness does not mean you have no vision. It usually means that your vision is significantly reduced, but not totally extinguished. Most people who are legally blind still have some usable vision. Vision varies on a case-to-case basis. Some people may see things blurry, hazy, spotty, have missing pieces, or like a tunnel with no side vision. No two legally blind people see in exactly the same way.
11) What kind of medical treatment does someone require who is legally blind?
I am not a doctor. I am a social worker. Every person’s care and treatment is left solely in their own hands. I personally am under the medical care of an ophthalmologist, optometrist, low vision specialist and Neuro-ophthalmologist to manage my treatment. I spend a lot of time in the offices of eye professionals.
12) What’s the difference between the types of eye doctors you just mentioned?
You can learn more about the types of medical eye professionals by going to www.visionaware.org/info/your-eye-condition/eye-health/types-of-eye-care-professionals-5981/125. To learn more about Neuro-opthalmology, please visit the National American Neuro Opthalmology Society at www.nanosweb.org.
13) What are some things you can’t do since becoming legally blind?
I used to love to scrapbook and photograph things. It was just a hobby of mine. Scrapbooking is dangerous because of the blades used to cut paper. I still take pictures, but with the use of a cell phone, not a traditional camera.
14) Do you drive?
No, my vision is so terrible I do not and never will be able to drive again. Oddly enough, living in New York City, I never drove. I didn’t have to because of the city’s various options for public transportation.
15) Do you have any blind friends or belong to any groups?
I belong to several low vision/blind-parenting groups on Facebook where I connect with other parents who are experiencing the same situation as myself.
16) How did becoming blind impact your social life?
When I was studying social work at Columbia University, I read an article in a class that talked about people’s greatest fears, near the top of the list was “becoming blind.” I think about that article a lot. Immediately after losing my eyesight, several friends made every effort to remain a part of my life. As time passed, more and more of them stopped calling and dropping by. It may have been very difficult for some of them to witness how my life had changed. I hold no hard feelings towards anyone about this.
I have a few professional colleagues that I stay in contact with and through social media I have reconnected with some grammar/high school acquaintances. Do I have someone to go out on a girl’s night with? Not anymore.
17) Do your daughters understand that you are blind?
My 3 year old understands that mommy’s eye don’t work as well as hers. She has been raised to be cognizant of her surroundings and has been taught to take one toy out at a time. She is very good about picking things up and staying organized. She also knows not to move anything from its assigned spot, like the remote control or my cell phone. My 2 year old is also beginning to understand that mommy cant see as well as she does. She has learned a lot from her older sister, and although she may be unable to effectively verbalize the particulars of my visual impairment; she is equally helpful in locating items and staying organized.
18) What do you worry about most in regards to your children?
I am a complete germ-a-phobe. I do everything in my power to keep my kids healthy. I have a stock of Clorox Wipes and Purell that rivals hospital supply rooms. If my kids get sick, that means getting them to the doctor quite possibly dosing them with medication. Although I do have ways of accomplishing both of these tasks, healthier kids are much more easy to manage!
19) Do you use a white cane when you walk?
It depends. Not all blind people use a white cane. The cane is a tool. It identifies me as someone with a visual impairment so that other people might be more patient and understanding. The cane provides protection when I cross the street and gives me information about curbs and steps since I lack depth perception.
If I am in an area that I know extremely well, I tend not to use the cane. For example, I don’t have to use the cane to walk to my local mailbox because I know every crack in every sidewalk brick beginning at my front door until I get there. If I am with my husband, I rely on him, instead of the cane. If I am pushing my stroller in an area I know well, I don’t use it either.
However, if I am traveling alone or entering an unfamiliar place, I will utilize the cane for safety. Blind people usually use four main methods of travel: 1) white cane 2) a human guide 3) a guide dog 4) nothing at all.
20) Do you have a guide dog?
Yes! As a matter of fact I do! In September of 2016, I was paired with my guide dog, Frances. She was provided to me from Guiding Eyes for the Blind, located in Yorktown Heights, New York. I completed the school’s home training program over a period of 15 days, so that I could remain close to my daughters. Frances is almost three years old and the most beautiful yellow labrador retriever you have ever seen! (Admittedly, I may be biased.)
21) What “should” you if you meet a blind person?
Do – Touch us on the arm or use our names when addressing us. This lets us know you are speaking to us and not someone else in the room.
Do – Give specific directions like “the book is five feet to your right” as opposed to saying “the book is over there.”
Do – Direct your questions directly to us. We do not need to have someone else tell you what we want to eat, etc. Nothing makes me crazier then when people address my husband instead of me, especially when it’s about my kids.
Do – Treat us as individuals. Blind people come in all shapes, sizes and colors. Remember I am a person just like you.
22) What “shouldn’t you do if you meet a blind person?
Don’t – Shout when you speak to us, we can’t see but our hearing is fine. I cannot tell you how many people yell at me during normal conversation on a daily basis. Even my two year old will ask, “Mommy, why is that person yelling at you?”
Don’t – Be afraid to use words like “blind” or “see”. Our eyes may not work but it is still nice to see you.
Don’t – Grab us to lead us. Allow us to take your arm when we are walking together. There is nothing scarier, especially to a woman, then being abruptly grabbed by the arm. Your intentions may be good, but please don’t pull me where you think I need to be.
Don’t – Pet or distract our Guide Dogs. They are not pets; they are working companions on whom we depend. Guide Dogs are cute and cuddly, but when they are working, they need to concentrate. If you just can’t pass one by, politely speak to the blind person and ask permission before you pet the dog.
23) What is the most frustrating thing about being blind?
Ignorance. If you ask someone on the street to name someone they know who’s blind, the most common responses are: Ray Charles, Helen Keller and Mary from Little House on the Prairie. If those are the only three people you can think of who are blind, then you’d better do a Google search, quick. There are hundreds of blind people who have done remarkable and invaluable things with their lives. My story is just one of them.
24) Why are you bald?
25) Why wouldn’t you use any medication for your hair loss?
My doctor provided me the option using a foam-based daily medication. Due to my previous medical history, many of the common steroid hair loss drugs could not be recommended for me. I refused medication because I was afraid of the possible side effects as described by my doctor. It was the right choice for me and my husband fully supported my decision.
26) Do you wear a wig?
Yes, I wear a wig, but only for work-functions or for social occasions. When I am home with my children, I either wear nothing or use a head wrap/scarf.
27) How did your daughters react to your hair loss?
My three-year-old took it very hard. She adamantly said she “did not like mommy’s hair.” My two year old had no reaction.
28) How did you explain your alopecia to your daughters?
My husband and I told our daughters that “mommy’s hair was very sick and could not stay on her head.” We also told them “their hair was very healthy and it would not get sick like mommy’s.”
29) How has your hair loss impacted your marriage?
My husband has seen me bald many times before during my cancer treatments. He is un-phased by the change. Our marriage is the same and he still tells me he thinks I’m beautiful.
30) How do you cope with your hair loss?
It’s been a process. Oddly enough, I think being a cancer survivor made the loss less traumatic. I have seen myself bald before so I knew what I would look like without hair. As a mother, I worried about how my children would react to the change. They have so much to deal with considering their mommy is both visually impaired and now bald. Since the diagnosis only came in April 2016, I am still adjusting and I am letting myself feel whatever I need to feel on a daily basis.