My sister, her disabilities, and meeting my friends

I was just having a conversation with a friend who also has a sibling with disabilities, trying to work through a situation I recently experienced that made me unhappy that it was so hard to explain what my sister’s life is all about, and how that relates to me. It occurred to me that since I turned 18 (I just turned 31), only two of my friends have met my sister.

Let that sink in for a minute.

Two of the dozens of people I’ve met, loved, lived with, studied with, eaten with, gone on road trips with, camped with…many of whose families I’ve met…only two of them have met Lily. An ex-boyfriend, and a dear college friend.

The shock of this is lessened a bit by the fact that I lived at least 850 miles away from Lily after I left home for college, so it wasn’t like it was logistically straightforward for my friends to meet her. Most of those friends haven’t met my parents, either. However, a number of them have, mostly because my parents can travel on airplanes and Lily can’t. (She had ear tubes that kept coming out, which left her with some damage to her eardrums, and that translates to a fair amount of pain during ascent and descent in airplanes.) But still, it’s a shock.

I did have friends over for visits or studying or birthday parties or whatever when I was younger, although much more often in elementary school than junior high or high school. And I try to be open in my sharing of stories – Lily knows the names of my college housemates, for instance, although she’s never met them, just as I know the names of her friends, although I have met almost none of them. I don’t mean to convey some weird boundary here; I had friends and they did come over. But your life as a legal minor vs. your life as an adult? Especially when your sibling is also an adult? Well, let’s just say that there’s a reason there’s an adult-focused area of SibNet that’s run separately from the child-focused area.

It hurts especially badly on those days when I have a conversation with someone that upsets or puzzles or overwhelms them, and it’s just Not A Big Deal to me, because it’s such a normal thing for me to talk about Lily or what’s going on in our lives. My friend observed that it feels like people somehow just get it if they meet her sibling, and react more smoothly in the future. I’m supremely grateful that enough of my friends have really listened to me about Lily, have seen pictures and listened to cute voicemails, even said hello briefly while I’m on the phone with her, that it can be easy to forget that they’ve never met her. These are good, good friends indeed (and many of them, I’m delighted to say, I’ve known for over a decade). That I am so lucky also can make it super hard when I have to confront that new people who are important in my life – bosses, friends, dates, colleagues – don’t share those years of stories, and Do Not Understand About Us. And I can get pretty resentful, before I even catch myself expressing emotion, that many of these people can simply walk away from the conversation, and escape the reality that I live. (Not that I don’t love my sister or resent her, per se, but the truth is that our family is complicated and always will be. No two ways about it.)

Yes, there’s a story here I’m not telling, and there’s specific pain I’m not willing to give public voice to, right now. But it doesn’t so much matter – it’s a story I’ve lived in some ways before, and expect to live in many ways again.


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