If you are like most people you probably don’t think about your eyes often. I don’t mean all of the things your eyes do for you, I mean the existence of your eyes in general. Your eyes being in your face is a given for you. I am not someone who has had this luxury in my life.
When I was 1 year old I developed bilateral retinoblastoma. This is a cancer of the eye which develops in young children. When presented with all the treatment options my parents chose to have my eyes removed. This was a decision that I will always be grateful to them for making. I have been blessed to have been healthy ever since. My eyes though. How does one deal with a toddler who suddenly has a lack of eyes in her face?
My parents did what most parents would do. They had prosthetic eyes made for me. As I grew older I learned to take my eyes out and put them back in again. I also learned that my ability to remove and replace my eyes made me interesting! I drove my parents crazy by taking my eyes out and leaving them places they didn’t belong. I educated my Friends about the mysteries of the prosthetic eye. But somewhere along the way I developed a deep insecurity about my lack of eyes.
I have learned in my life that this world is a very visual place. If you look different, people are going to judge you differently. So I can respect the fact that my parents wanted to shelter me from a certain amount of that judgment. They taught me to never leave the house without my prosthetic eyes in. If I was sick, or suffering from a headache, or couldn’t find my prosthetic eyes, they made me wear dark sunglasses. They told me to never let anyone see me without my eyes in. They told me that I didn’t look good without my eyes in. They taught me to be ashamed of something I couldn’t change. I don’t believe this was the intention. I believe the intent was one, to stop me from losing my very expensive prosthetic eyes. Two, to save me from the judgments of an uneducated world.
In the last few years though, I’ve learned something else. It is a lot more healthy to be confident in who you are with or without eyes then it is to search for The acceptance of the whole world. I will never be exactly like everyone else. When I go out in public people stare at me! They stare at me if I had my eyes in or if I don’t! They stare at me because I use a cane. Because I’m blind! They stare at me because I have an interesting hairstyle. because I have tattoos and piercings. Whatever! I have learned that they are going to stare! There is no getting around that! But I’ve also learned that I have a safe place within my family. That when my husband or my step kids look at me they don’t see a girl with no eyes. They just see me! They except me with or without the prosthetics. And they never ask me to change. If I’m not in the mood to wear my eyes it doesn’t matter. I can just be myself and not worry that the people closest to me, who should always except me for exactly who I am, are judging me. It’s a very safe feeling.
When I read on social media about parents of children who are struggling with the same kind of cancer complaining about their child not wanting to wear their eyes, it makes me remember the little girl I was, and the young woman I became. I understand and respect the desire they have to keep their children safe from the judgment of others. I implore them to also teach those children that they are beautiful no matter what they decide to do with their eyes. Teach them that people will stare, people will ask questions, sometimes people will be mean! But that’s life. it’s far better for them to know they have a safe place in their parents arms than anything else. They need to know that they are perfect in their parents eyes, even though they no longer have perfect eyes of their own.
Today I saw a post on twitter about a young woman who is blind being offered a braille menu for the first time in her life. The twitter post and subsequent BuzzFeed article made it seem like this absolutely normal moment was life changing for the young woman. At first it made me smile, that blindness was being discussed on social media. After a while though, it began to bother me quite a bit. I’m 24 years old and I have been blind for 23 of those years. I learned at a young age to ask for menus in braille. They aren’t always available, but in most chain restaurants they are. Because most of the general public isn’t used to interacting with those of us who don’t use our eyes to see, you have to ask for the braille version, but it’s always fun to be able to decide what you want for yourself. I myself, am a creature of habit. Once i find a food I like at any given restaurant I’ll usually just order that food because that’s what I want. The last time I was given a braille menu I used it for the purpose of showing my stepson what braille looked like in a book. I never saw something like a braille menu as anything more than I deserved. Maybe my opinion here is a product of the self confidence I’ve been actively fostering in myself over the past 2 years. But I believe the fact that what should have been seen as an ordinary moment in a young woman’s day became a news story says something very negative about how blind people are treated by the majority of the sighted public. If we as a Society are surprised and emotionally moved when blind people are simply treated like everyone else, what message does that send? From where I sit it screams that people who happen to not have eyes that work should feel very lucky when they are treated with common decency. They aren’t usually seen as full, capable, functioning members of the world, so when they are they should be extremely grateful. The sad part of this to me is that it becomes a vicious circle. Blind people are taught that they shouldn’t expect to be treated like everyone else. So they grow up not demanding the respect they should be given automatically. On the other side of this equation, the rest of the world is learning that they can, for the most part ignore blind people. When they do treat the blind like they are actually people too, they expect a parade for their goodness! I see this whole situation as just sad and wrong. I live my life demanding respect. If someone is genuinely kind to me I am thankful for that. But if I’m offered the same treatment as my sighted friends, I just call that a normal day. It shouldn’t be news worthy that a young woman who is blind was able to order dinner with the same ease as her sighted sister. Blind people need to become strong enough to take what they, as human beings in this world, deserve. And in return sighted people shouldn’t feel like saints when they do the minimum to include blind people in everyday life.https://twitter.com/buzzfeed/status/846786971385171968
A couple of instances have occurred in the last week that have bothered me quite a lot. As a general rule people don’t speak to me directly. They address their questions or comments to whoever I happen to be with. People act as if my blindness has rendered me incapable of doing something as simple as ordering a coffee. Although this annoys me a great deal, most of the time I don’t go through the effort of correcting them. The exception to this is when I’m alone with my step_children. I’ve spent the last year trying to teach these kids that my blindness doesn’t have to keep me from living a productive, full and happy life. Letting people overlook me and speak to my 15 year old feels like accepting a kind of defeat. And in doing that, I would be showing her that I’m less of a person than I actually am. This weekend my stepdaughter and I went shopping for my wedding dress. The saleswoman who was helping us was one of the most frustrating people I’ve dealt with in a long while. Not only did she not speak to me directly, but according to my stepdaughter, she didn’t even look at me once during our hour and a half of working together. Every time she asked my stepdaughter a question about what style or color of dress I was looking for I’d jump in with my answer. Some people take this hint and stop the behavior and start talking to me as though I am an actual person who can talk and think just like they do. This woman however, was not one of those people who could be taught. When we finally left my stepdaughter was absolutely annoyed and I was incredibly frustrated with the way the experience had gone. This incident came to my mind immediately the next day when I opened the door to the pizza delivery guy. Now I should explain that the pizza delivery guy and I have a long term relationship. This particular delivery guy has been delivering pizza to my house at least twice a month since October. He is fully aware of my blindness. Every time he delivers my pizza he asks me to sign the receipt. I do sign it, just in my own way. I have been blind my entire life so I don’t know how to write many print letters. I learned how to write a somewhat messy H and thats what I use as my signature. For some reason the pizza delivery guy chose this weekend to become unsatisfied with my signature. After I opened the door and said hello he looked over my shoulder and asked my stepdaughter if she could sign the receipt for me. I may have slightly overreacted to this because of my frustration with the saleswoman the day before, but I didn’t feel like it was appropriate for him to address my daughter when I was standing right in front of him. He has seen me sign receipts at least 12 times. There was no reason for him to ask someone else to do it. The fact that he asked a child to do it seemed even more disrespectful to me. I less than politely told him that I could sign it and sent my stepdaughter to get her brother ready for dinner. I signed the receipt and forgot about the whole thing until tonight. I ordered pizza for dinner and the same delivery guy brought it. He handed me the pizza and left without even asking for a signature. After I closed the door I stood in the middle of my living room and laughed. These 2 episodes have made me realize something. As a blind person I have the responsibility of demanding the respect that sighted women my age are given without question. I have the responsibility to make people treat me the way I deserve to be treated. It isn’t fair, and it isn’t reasonable, but it’s absolutely true. If I don’t demand respect, I will be treated like a passive child. I won’t accept that in my life. I won’t teach my children that it’s okay to treat someone as though they don’t exist because they are different. I will continue to push the people I interact with to see me as a person with all of the same rights, opinions, and thoughts as them. If you encounter a person with a disability, try to remember that they are a person first. No matter how different the disability may make them look or even act, they deserve a certain level of respect just for being a member of the human race.
I’ve spent most of the last year and a half learning an acceptance for my body I’d never known before. I’ve let go of damaging patterns of behavior and negative self talk, to replace them with a confidence in who I am and how I look. In the process I’ve gained 40 pounds and 4 jean sizes. I’ve also gained the strength to not let that become a bad thing. I realized that I’m more content with myself at 160lbs than I ever was at 120lbs. I have never dieted like a normal person. There was never a time in my life when I looked at eating as simply a necessary part of being a human. Food was good or bad. If I ate food that I loved, which of course was all bad, then I was weak. I spent 14 years denying myself the foods I wanted and beating myself up when I would eat them. When I would exercise it was never purely so that I could feel healthier. I always had my weight in mind. When I decided to let all of this go, I did it completely. If I wanted pizza I’d eat an entire pizza. If I wanted chips I’d eat the whole bag. I ate what I wanted when I wanted and I didn’t feel guilty for it. While I know eating a whole pizza is in no way healthy, I absolutely believe it is better than starving and hating myself for eating. In the past few weeks though I’ve been wondering if I’m ready to find the middle ground. I decided that I’m finally ready to define healthy eating and exercising for myself. Last month I left my nanny job to work with my boyfriend working nights running a paper route. This means hours sitting in a car every night followed by a whole day of sleeping. As a result of this, my physical activity has decreased. I thought at first that my weight would shoot up. To my surprise this didn’t happen. I haven’t gained any weight at all. I have felt myself becoming more lethargic and lazy though. I’ve realized that I want to move my body more than I do. I want to exercise because I want to feel better. I want my body to feel stronger and more energized. This week I took the first step in my fitness journey. I ordered my very first workout CD from Blind Alive. This company makes accessible workout materials for blind people. I love this because it means I can truly be in control of this part of my healthy lifestyle. When I want to exercise I can just get up and do it. I don’t have to wait for someone to go to the gym with me. I don’t have to follow anyone else’s schedule. While preparing myself to start exercising in a healthy way I’ve also been more mindful of what I eat. I haven’t been restricting my diet, I’ve just been noticing what I’m eating and how much of it. I’ve been eating because i’m hungry instead of just because I’m bored. My definition of healthy may not look anything like anyone else’s. Maybe instead of a whole pizza I have 2 slices for dinner. I won’t feel like I failed if I have cinnamon toast crunch for breakfast. I don’t have to count calories or hit a certain number on the scale to feel like I’m doing well with my health. I’m very much looking forward to starting this new phase in my life. Thinking of food as fuel and exercise as a way to make my body strong is an entirely new idea to me, but it is one that I’m ready to imbrace fully.
I am a Christian. I believe in God and Jesus. God is a real part of my everyday. I don’t doubt the power of God in my life. I believe with my everything that my life is not mine to plan, but part of a much bigger picture. I believe this. Well, I say I believe this. I believe I believe this most of the time. You know, until things get difficult at which point I get insanely control freaky and I start PLANNING! WORRYING! My boyfriend and I are compatible in most every way. He and I are an incredible team. We parent the children as a team. We take care of our life as a team. One of the only areas we conflict in is my worrying. I tend to over worry about our finances most often. When I worry, I go one of 2 ways. I get pissed, or I shut down altogether. Worried Harmony is not a good team partner to have. She is not a good mom. She is not a good friend. Quite honestly, she sucks hugely on every level. I KNOW this. Even though I know this, I still worry every time something comes up. This month for example, I have 2 weeks of unpaid vacation. I spent the last 2 weeks stressing out over this. I laid out an unreasonable budget for my boyfriend no less than 209 times. I stress my poor stepdaughter out with my worried, sucky, Harmony attitude. I had nights with my boyfriend where I refused to even speak to him. Not because things were bad, but because I was angry with him for not worrying with me about a possible time in the future when things may be difficult. How incredibly stupid is that? So yesterday I got paid. I made A private decision not to worry about the money situation. I prayed over my check when I got it, handed it to my boyfriend and committed not to worry about it. My not worrying about it equated to me telling my boyfriend I wanted nothing to do with the money situation for the rest of the month. “You deal with it. I’m not worrying about it.” I don’t think that’s exactly what he’s been waiting for me to realize. Mostly because he knows me way better than that. He knows I am incapable of not worrying about things. I can talk a lot of game about how I’m not going to worry while continuing to worry extra hard. Today I got a smack me in my doubting, worried, stupid human heart moment. A few months before I got my job, in the middle of my worrying I posted a bunch of stuff on EBay. I was going to be an EBay super seller and NEVER worry about money again!!! And then only 2 of my things sold. After I got my job I no longer thought about the EBay stuff. I let all my posts expire. Today I got a message enquiring about one of my expired posts. This item ended up selling today for exactly the amount that I won’t be making at work the next 2 weeks. What does this mean? This means that all my worrying was absolutely pointless. This means I’ve waisted days of our lives being a B word to my family for absolutely no reason. This means that God took care of us, like he always has, like he always does, even though my faith is CLEARLY a work in progress. I’m writing this as a public thank you and apology to God for being an idiot most of the time. And as a reminder to myself for the next time I want to slip into the worrying mindset. I am not the boss of my world and I don’t want to be. God can take care of us much better than I ever could. No matter how much I worry.
I trained with my current guide in December of last year. In April of this year I became lazy and stopped working with her. I need tips from anyone who has any about how to get back on track with her. Mobility is going to be my main focus for right now. Any help would be hugely appreciated!!!
I spent most of my life convincing myself I couldn’t have the things in this life that I wanted. When I was a teenager I told myself I couldn’t go to school because no one was helping me. I told myself I wasn’t smart. I was just a stupid little girl and I couldn’t do anything to change it. When I turned 18 I had a hysterectomy because I refuse to pass my genetic cancer on to an innocent baby. I spent the next 4 years telling myself that I’d never have a child. “Some Harmonys don’t get those things.” I believed I wasn’t worth loving, so I dated guys who were incapable of loving me. Then I cried when they didn’t love me. I told myself I couldn’t write well, so I never finished my stories. I told myself I couldn’t play piano, so I stopped practicing. I told myself no every single day. I knew moments of happiness. Laughing at jokes. Finding silliness in the kids I watched. My default mode though was sad. Dark. Down. I was an incredibly quiet and shy girl. I got away with that much longer than I should have because of my blindness. When you are blind people naturally overlook you. You have to stand up and demand to be noticed as more than an object of pity. I didn’t believe I deserved respect so I didn’t ask for it. “Some Harmonys don’t get those things.” People made me nervous. Life scared me. I didn’t know how to become more than just a character in other people’s stories. Tonight I’m sitting here with my step daughter sleeping in my arms and her daddy sleeping in our bed. I sang her to sleep with the song I wrote, and finished, for her and her daddy. On the shelf next to us is my high school diploma that I received last month. Tomorrow I will get up and go to the job I got because I didn’t quit looking when everyone I spoke to said they couldn’t have me watch their kids because I’m blind. At work tomorrow I will play with not only my work kids but the neighbor kids too. They’ll be outside waiting to play as soon as I come out, because I’m good at my job and they want to have fun with me. I’ll say hello to their mom who I know because I wasn’t to shy to have a conversation with her last week. After work I’ll go to my stepsons soccer game, then I’ll have dinner with the love of my life. I’ll have all of these amazing moments, and it’ll be just another Friday. Because it turns out, this Harmony does in fact get these things. I get the life I always wanted and never thought I could have. I get to be the girl I never thought I could be. I can stand confidently in a room of people and not feel like less than everyone else. I can go to the store with my eyes out and not feel like a freak. I can be myself and not apologize for it later. I can have it all. My life won’t be perfect everyday, but it’s mine and I love it absolutely.