Each of us has parts of identity that are visible to the world, such as our skin color, gender, and age. But we also have parts of our identity that the world cannot see. Sometimes these hidden identities have more power in shaping our world than the visible ones. One of my identities is that I am slowly losing my sight. I have spent my life consciously letting this fact shape me, but not define or limit me. When I was six years old I was diagnosed with Retinitis Pigmentosa, (RP) which is a group of rare, genetic disorders that involve a breakdown and loss of cells in the retina—which is the light sensitive tissue that lines the back of the eye. Common symptoms include difficulty seeing at night and a loss of side (peripheral) vision. RP is usually a hereditary disease; my grandmother had it, and my father and younger brother do as well. While my parents were hopeful that I would not inherit this disease, they were not exactly surprised by the outcome either.
I remember taking the diagnostic test and hearing the results from my parents but I don’t really remember how I felt about it. All I knew was that my grandma had only some of her sight left, and I knew that wasn’t good. I later learned that, fortunately for me, our family’s eyesight tends to degenerate slowly. Of course, at age six, I had no idea about the obstacles and heartaches that lay ahead of me. I also had no idea how strong and resilient I would become.
During my childhood, I dealt with my eye condition as little as possible, in part, because I had bigger things to deal with. My home life was far from ideal; my parents went through a very nasty and horrific divorce. Instead of feeling emotionally supported, I was often used as a pawn in their battles. So, when I was about to turn 16 I was so excited to get my drivers license and have the means to get away from all the conflict at home. While I knew it was a possibility, my heart broke when I heard my doctor deliver the news that I could not ever drive because of my RP. The last thing I wanted was to feel more stuck in the horrendous situation and all I wanted to do was get the hell out whenever I needed to. Seeing my friends joyously get their licenses and receive cars didn’t help. I just wanted a sense of freedom. I wanted out. But instead all I could do was ride it out, bide my time, and do the best I could.
It wasn’t until I went away to college that I felt a huge sense of the freedom I’d always wanted. This freedom, however, came with a big price tag because I was also forced to take full responsibility for myself and my disability. With this came an abundant amount of growth, as well as a whole lot of tears, embarrassment and grief. There were countless times I used my eyes as the butt of a joke; I was always making fun of myself so that people couldn’t see my inner pain. One of my favorite examples of this was when I was at a house party in college. A group of us were heading out and I took one step too far to the right. I fell off the porch, which was about a 4-foot drop, rolled into the bushes, instantly rolled out, stood up and yelled, “I’m okay.” Everyone thought that I was just intoxicated and that is exactly what I wanted them to think. On the inside though, and for days following, all I felt was intense embarrassment, self-loathing and shame. The resulting HUGE bruise on my entire hip was a frequent reminder of the incident. These kinds of incidents happened for years.
My desire for independence often manifests itself as stubbornness, especially when it comes to accepting help. I HATE asking for help, I strongly dislike waiting around for people, and I have had the mentality that “Gosh darn it, I can do it by myself.” As a society we are often very reluctant to ask for help, and many mothers, in particular, force themselves to think that we don’t need anyone, “We are women, hear us roar!” But the truth is, everyone needs help, and what fun is it really to go at it alone? I am slowly learning this lesson; it’s a HUGE work in progress. I eat a piece of humble pie almost daily now. I do it not only for me, but for my two young sons as well.
But LET’S BE REAL…
The embarrassment I feel is REAL. I do see how others look at me when I am in a store, holding my magnifying glass, attempting to read a price tag or labels. (Note to stores, please make those suckers BIGGER!) When I am wearing my contacts instead of my glasses there are those special souls who approach me and ask if I need help, and then tell me that I should go see an eye doctor and get some glasses. My old response came from a place of shame and I would “laugh” if off and say “Yeah, thanks, I’ll do that.” Now, I am upfront and say, “Well, I have an eye condition and I am doing the best I can.” I am fully aware that I am totally catching them off guard, so I just smile and go about what I was doing. And, most times they say “Oh,” and walk away. I used to think I would feel better when I could no longer see the judgment on people’s faces, or the pity. But now, I couldn’t care less. Everyone has something and this is what I have.
I often feeI angry and torn up inside. Just when I think I have a handle on my changing vision and the waves have subsided, my eyesight continues to worsen ever so slightly, and the waves of grief knock me over me once again. The ebb and flow of this cycle is exhausting.
I also want to scream at the top of my lungs every time I hurt myself. Hitting my head on well, anything, bumping into things, the most frustrating part about this is that I KNOW THAT IT IS THERE!
I feel very alone at times. I know that my family, friends and my husband do their best to support and empathize with me, but at the end of the day, they can never truly understand. They can never feel the constant grief and embarrassment I feel. They can never know the heartache of knowing that someday I could go blind. And, they can never grasp how vulnerable all that makes me feel. I’ve had to really dig deep these past several months. I’ve come face to face with my biggest fears, my insecurities, and my reality.
I ask myself the questions that I’m not sure I even want the answers to: “Will my sons be embarrassed to be around me and ashamed for me?” “Will my friends find me to be a burden, will they want to hang out with me and find me fun?” “Will my husband find me sexy?” “Will I continue to keep people on their toes?” “Will people love and accept me after the lights officially go out? And the most important question of all: “Will I love myself?” These are the questions that bring me to tears every time I think about them. The unknown of all of this scares me.
Other things that frighten me when it comes to my future and being open about it is trust. As I have gotten older, I have become so guarded. It’s become so bad that I give as little detail as possible when people ask me questions about my life. One of the reasons why is that in my heart, I hate talking about myself. I run from being the center of attention. I love being around people and am very social. I love learning about others and being their support, their rock, but I am simply not good about being on the other side of that. What I have realized though, is that for me to continue to grow and lead, I must let people in, I must begin to show myself and trust others. While this is very scary, I am excited to see where it takes me.
I decided long ago that I would not let my poor vision and uncertain prognosis stop me. I ‘ve been forced to “deal with it,” perhaps not always in the healthiest of manners, but I am grateful I did. Because of this and so many other life shaping experiences, I have not let my disability keep me from living a good life. I have moved by myself to a few different places where I knew no one and learned to find my way. I have worked in a variety of fields. I have learned to appreciate and love the small things in life because when you add them all up, they equal something large and extraordinary. I am also now on the precipice of turning a huge new chapter in my book.
I know that that I cannot turn the page alone and nor should others. To that end this post begins the blog that I hope will bring together mothers and fathers with disabilities of all kinds. I want to give you a voice and a way to tell your story and educate us on you and your life. I hope this blog gives us a platform to share our strengths, fears, joys, sadness, and what it is like to live this life. I want to give us a forum where we can feel ALL of the feelings and receive unconditional love and support while doing so.
I also hope this blog helps our friends and family. I realize it is very hard for those that surround us to know how to help, how best to support our disability, and for them to feel educated in a very personal manner. So here is to “Creating SPACE” for healthy, open and curious conversations that help bring education and awareness to us all.