I don’t write about my eyes as often as I used to, but I’ve been having this conversation with family a lot lately. I have Retinitis Pigmentosa, as do a handful of other women in my family. We all have varying degrees. Some can drive, some can read without much assistance, and some are totally blind.
I have never been able to drive. I do have a cane, magnifiers and bifocals, and occasionally use text to speech. I went through mobility training and learned how to do everyday tasks like a sighted person. I’ve also had a few minor surgeries like cataract removal. My eyes aren’t the worst in the family, but I also have other diseases such as cystoid macular degeneration.
Unlike the majority of my family members with RP, I started losing a lot of vision in my teens and early 20s. They lost most of theirs in their 30s and 40s. I had a difficult time accepting that I wouldn’t drive, but I was very involved in college when it came to disability panels and activism. It helped me cope.
What I see can be best described as seeing through a straw, but at the end of the straw, everything looks muddled like looking through broken glass. I have no peripheral vision left and am losing some colors. I’m completely blind in dim lighting and night. My right eye doesn’t see much and only picks up some shadows and light perception, but I still have my left eye.
Because I’ve had years of training and moved out at 18, I did everything I could to adjust and maneuver like a sighted person. I worked a few jobs in highschool and college and tried to blend in. I only used my cane on rainy days when the clouds hid the majority of light and at night time.
Not “looking” blind was important for me because I was bullied a lot growing up. College helped me get over caring about the awful people in the world though. I do still hear that I don’t “look” blind and people think I’m lying. I did have fog removed from my eyes and the cataract surgery helped them appear clear as well.
The most difficult questions and ridicule come from people hearing I have toddlers. I get a lot of attitude about how do I handle taking care of my kids and if it’s safe for me to stay at home alone with them. I used to get so offended and hurt by questions that insinuated that I was a poor mother because of my sight. Now, I just laugh.
I do things differently because of my blindness, but it doesn’t hinder my abilities the way people think. The most difficult thing is not being able to get in a vehicle and drive my kids to the park or store, but me and my husband are a good team and manage this pretty well. There are ups and downs to being a legally blind mom, but it makes me who I am.
- Not Driving. In case of emergencies, I have family near by that will and has helped when my husband is working.
- Changing Diapers. I have to use my hands to see sometimes. There has been incidents where I go to see if a butt is clean after a poop change, and I’ve missed a spot. I’d rather have a poopy finger while double checking than having a dirty kid.
- Messy Mealtime. I’ve been known to miss a toddler mouth and drop food from time to time. Sometimes seeing with your hands is the best strategy, the kids don’t seem to mind ravioli on the cheek too much.
- Mom Ouchies. During clean up time or headed to throw out diapers, I have been known to trip over a toy or run into a wall. I have my fair share of bumps and bruises. As the kids get older, they are learning to make mommy a path and pick up after themselves.
- Cooking Struggle. My father has been the head cook in a beloved family diner in our town for 15+ years. My big brother has cooked everywhere from country clubs to deli restaurants. We love to cook. As I lose vision, I have to find ways to still get things cooked. I use puffy paint to mark temperatures and taste as I go. Baking is my favorite, but being a blind baker isn’t easy. Very rarely do I burn or under bake, but it has happened. I can’t really read recipes very well without help or a magnifying glass, but I have learned to manage without them. The biggest part is to only allow the kids to help with prep. I can’t let them in the kitchen while I’m using a hot stove top or oven.
- Not Seeing Every Detail. The absolute most difficult aspect of being a parent with low vision is not being able to see if my babies have freckles or little details. I can’t see the colors of their eyes. I have to feel their faces to really understand how they look. I do take a lot of pictures and try to zoom and use low vision aids to help. I just don’t want to miss seeing their faces as they grow up.
- More Patience. Not being able to see means I have to do things slower sometimes. It has really helped me to learn some much needed patience. If I try to do things in a hurry, I spill something or some type of pandemonium could ensure. I keep a good pace and having a tight schedule helps.
- Hands On. This is an up and down. Yeah, I have gross things on my hands from time to time, but there’s a plus side. Because I use my hands as eyes sometimes, I get to reach down and feel my kids playing. I get to feel those moments that sighted people see. If my kids have an issue or want to talk, they stand close and hold my hand or sit in my lap. It helps feel what they are feeling in a way. If my son is having a dramatic moment, he will place his hands on the sides of my face and say “mom, this is big!” It helps my kids become more expressive and animated.
- Helping Hands. My toddlers are great at picking up after themselves, most of the time. When they see me fold laundry, cleaning, or getting food ready, they want to help. They want to be hands on like mommy. It’s endearing and helping with their development at the same time.
- Early Awareness. If my kids see a person with a cane, wheel chair, or guide, they already have some grasp on disabilities. The more education and awareness, the better the understanding. More understanding hopefully leads to less bullying. My eyes have made it easier for my toddlers to understand not everyone is the same. It’s been like a learning tool.
- Stronger Senses. I can hear if my cat sneezes in the basement on the other side of the house. Not having the best eye sight has allowed my hearing and touch to excel. My kids don’t get much past me. I can play hide and seek just like a sighted mom.
- Better Communication. Because I can’t see people nod or shake their head, we’ve learned to be a very vocal family. As soon as my son learned to speak, he started telling me things he saw and what was going on around him. He loves to explain things to me that I can’t see. He’s also likes to help find movies and shows on TV. He’s learning to recognize words to help me if the font is too small. I wouldn’t say my 3 year old can read, but he’s on his way.
Being blind has been a challenge, but it has never wavered my confidence as a mother. I just have a different system of how I operate in my home. I know I will get questions for the rest of my life.
I know people will say things like “you don’t seem blind,” or that they understand because they have bad vision too when really, a good pair of glasses gives them the freedom to drive and see things I couldn’t even imagine. It’s not about comparing ourselves to each other, because every journey is different and everyone has struggles.
I try not to let the little annoyances get to me. I still have people wave their hand in front of my face or ask if I can see how many fingers they are holding up. At the end of the day, I like who I am, and my vision has helped shaped me into the mother that I am. I know there are mothers with worse disabilities and conditions. I applaud those women as well as all hard working mothers who do their best for their children.