My sister has disabilities, and is becoming aware of that factPosted: April 1, 2012
My recent habit has been to call my sister at least once a weekend. We mostly just chat aimlessly, comparing notes on food and rehashing Lily’s typified scripts. She usually has me say hello to whichever staffer is on duty at least twice, not realizing (or caring) that they have answered the phone and said hello to me then. We also do this silly thing where I will play songs from our young childhood that people have made into personalized videos on YouTube. (What can I say? I’m a sentimental type, and sometimes, Lily is, too.)
Today, Lily was reluctant to start the conversation, and had to be nudged to say hello. Once she did, she jumped to asking if I knew that she was born that way. I was caught off guard, and wasn’t quite sure how to respond.
It’s hard knowing what to say to her. I don’t know what it’s like to have a visible disability, let alone a series of them since birth. I don’t know why she’s suddenly so adamant about discussing these things now, as she nears the age of 29. My mom thinks she’s just become aware, in a new way, that she is different. Lily’s been meeting a lot of new people recently, and she’s such a good judge of character and so good at reading people that I’m confident that she knows when people are uncomfortable around her, even if they don’t ask, even if she can’t see them. She knows this, and she is…sad. She’s hurt, and uncertain, and she’s dwelling on it. How do I comfort my sister, who is bringing me her pain and confusion, when I don’t know what words will make sense to her? Her vocabulary is pretty limited when it comes to internal emotion, but it’s more than that: what help can my words provide? Can just telling her something – that we love her, that we are all born this way, that (as my mom is saying to her) she was also born cute – make her feel better?
It’s also a bit of a shock to me that I should feel so ignorant of how Lily has felt herself to exist in the world. Admittedly, she hasn’t given extensive clues that she has felt quite this way before, but I also feel like one of the downsides of seeing her as my sister means sometimes I forget that she’s a woman with visible disabilities. That we live physically far apart makes it easier to forget, to my chagrin.
I know life is unfair, but still: poor kid. I hope we can figure out how to help her cope.