What You May Not Know

Letter concerning my disability, optic nerve atrophy, which results in vision loss and is unpredictable. There is nothing to stop or repair the vision loss. The damage is permanent. This is for Kenzie ’s "Yes, I Can Smile and Still Be in Pain!" . For more info see "Legally Blind"  or "Troubled Thoughts"  .

To my loved ones and those I will meet in the future:

Concerning what you may not know

         Realize that just because I look normal doesn’t mean there’s nothing wrong with me. Just because I smile doesn’t mean I’m not hurting inside. Just because I appear optimistic doesn’t mean I always am. Just because I laugh about my disability doesn’t mean I’m not bothered by it. There is something wrong with me, and it’s easier than you think to smile when inside you’re hurting. People who judge others by a quick glance will have a hard time getting past this paragraph.

         Understand that this disability has a greater affect on me than most realize. No, I’m not fully blind. But I am fifteen, almost sixteen, and not getting my driver’s license is probably the biggest blow. There is so much that I will miss out on. I will never be able to drive my children to their first day of kindergarten. I will never drive to the grocery store to shop. I will always be in the passenger’s seat on road trips. There are other repercussions, too – passing this supposedly hereditary disease on to my children is a likely possibility.

         Accept that, as of now, nothing can be done to improve my vision. Don’t suggest glasses, contacts, or laser surgery. It just won’t work. I understand that you are trying to be helpful, but trust me, if there were any available options, I would have already seized them. I don’t need more doctors – I need understanding friends.

         Know that I’m not offended by ‘blind’ jokes, and I don’t mind laughing about my eyes. It seems the more I laugh about my disability, the closer I come to being okay with it. The more other people laugh with me, the more comfortable I become with being different and standing out a bit.

         Acknowledge the fact that I know how lucky I am. Trust me, I’m grateful I’m not in the hospital dying of an incurable disease, and I’m thankful that I’m not completely blind. However, I am in between. This is harder to deal with than it seems. I don’t really fit in with those that are blind, but I don’t feel like normal people understand how hard this is on me, either.

         Please help me when I need it. It will be obvious, and when it isn’t, I’ll ask. Don’t accuse me of using my disability to get attention. Even thinking of someone doing this makes me cry. I don’t want anyone’s sympathy- I want their empathy.

         Don’t be afraid to ask questions if you don’t understand something about my eyes. It’s confusing to even the best doctors. Lend me a shoulder to cry on when I need one, and listen when I’m ranting. No, I’m not crazy - there’s just a lot on my shoulders, though I may not always look burdened. Try not to treat me any differently than you would anyone else.

         See that my pain is not physical- I hurt on the inside, where thoughts and fears swirl around in my brain. One minute I'm fine, the next I'm not. Moments like these are completely random - the unlikeliest things can make invisible emotions plain to all.

         I know it may seem like I'm asking a lot, but really, it's not that much. And if the need ever arises, I will not hesitate to do the same for you.

         Thank you for listening and God bless!

                   Love, Jessica