Selfishness or self-protection?

There’s this song that I feel embodies my most violent emotions about what it means to be a single adult who has a younger sister with disabilities: Ordinary, by Train. Yes, the song from Spider-Man 2. (Remember the posts about how we are nerds?)

And when the world is on its knees with me it’s fine
And when I come to the rescue I get nothing but left behind
Everybody seems to be getting what they need where’s mine
‘Cause you’re what I need so very but I’m anything but ordinary

As physically typical and privileged as I might be, I’m not exactly “ordinary.” Even if you just accept the frequently-associated connotation of ordinary as lack of excitement, dry, or otherwise, well, boring. I stand out by being Lily’s sister, by my own PhD, by our mutual status as children of a mixed marriage that is also 100% a numerically minority (if well recognized) religion. People often describe me as weird. I am rather proud of that. 😉 I’m single at the age of 30, with a young but flourishing career that takes a lot of energy to maintain. (An established woman scientist commented during a discussion group I was part of that she sees women investing more energy in their students than men; students almost become surrogate children sometimes. I would argue that it’s a side effect of being a devoted teacher, having known men who also seem to give huge amounts of energy in the classroom.) I find myself feeling like I have more in common with the stereotypical man of my age, “ready to settle down and support a family,” than the stereotypical woman of my age who wants to start a family.

And it’s all complicated by Lily’s place in my life, the way I feel like I can’t easily depend on someone else to help me, despite an almost desperate desire to do so. I Must Be Self-Sufficient Because She Can’t Be. Learning how to let people into my life has been a huge challenge, and right now I feel the absence of a supportive partner keenly. I have, essentially, no regrets about giving what I have to Lily, even if I’m scared of what it will mean to give even more for her. She’s my sister – there’s no way in hell I’m going to abandon her or let other people hurt her. But it hurts some days when I realize that I don’t let people support me, and how that may eventually mean that I won’t be as healthy and strong as I need to be in order to keep supporting her.

I have conversations about this with my friends. (I have some absolutely amazing friends. I may want to have a primary romantic relationship, but wow, my friends are awesome and make my life so much better.) One of the ideas I think I developed during childhood was that I somehow had to earn attention or affection that was manifestly obvious; I knew I was loved and celebrated by my parents, but you know, it’s really hard to do something special with the kid who is able to quietly, happily play with her Legos while her sister needs hours of effort to learn speech or sign language well enough to ask for juice. Don’t get me wrong, I had a supremely excellent childhood, but sometimes it’s hard to remember that just being me is enough reason to “deserve” love, attention, or happiness. One of my friends recently reminded me that it’s okay to be happy, and just having her say that was such an emotional moment of relief so strong that I recall fighting back tears.

(Quick aside: Have I mentioned the perfectionism thing here yet? That many of us feel like we have to be perfect because of the problems our sibs have? Or that we feel we have to excel in order to be as extraordinary as our sibs are and cause our parents/families to set aside time for us? I find it much, much, much easier when dating to care about someone – cooking for them, paying for meals or movie tickets, getting them gifts, asking about their days and lives – than I do to let someone do that for me, because of that. When I fall short of my perfectionist goals, I don’t like to let people do things nice for me. Which is one reason I’m so ambivalent about celebrating my own birthday, and go all out to celebrate those of my friends and family. It’s sort of all I can do to accept that it’s okay to take a day to celebrate being alive.)

I feel like pulling away from my family just a little bit right now. It hurts to think that, despite the fact that I can tell I need some extra space to fully invest in living in a new place, with a new job and new friends – it hurts because I can’t separate the desire for self-protection and enjoyment of self from selfishness. But this is my birthday month, and I have new clothes and a new haircut and am reconnecting with friends who are now local while finally making new friends, and I want to try to be a grown-up, and just be me, and maybe find someone who can help me enjoy that. And that can’t be a purely negative thing to want.


2 Comments on “Selfishness or self-protection?”

  1. Amber says:

    Hey Elysia,

    I just found your blog. I really like it, since I feel that we have a lot of similarities in some respects. This particular post speaks to me because it’s something I’ve been struggling with recently. I’m working on getting my Masters of Art in Education so that I can become a teacher, but there are literally only a few schools in Juneau where I could potentially teach, and all of the art teacher positions have been filled very recently. So it’s highly unlikely that when I get my Masters next spring I’ll be able to find a job here.

    Unfortunately that means leaving my (much younger) little sister with my grandparents and moving somewhere looking for work. We are both currently living with our grandparents, our parents are out of the picture. I know I’ll have to take care of her for everything, because by the time she’ll be of age to go to college and everything I doubt that our grandparents will be around. I am perfectly fine with this in all regards. But I feel like I’ll be abandoning them if I have to move to the lower 48 just to get a job after everything they’ve done too. And yet it’s entirely normal, and practical, isn’t it? I hate being at odds with what I need to do for my career and what I feel I need to do for my family. Time is limited, they wont be around forever, but if I stay here there’s no possibility of getting anything better than register clerk at Joanne Fabrics (And I applied a year ago and they wouldn’t hire me then, so even that isn’t a likely possibility).

    • Elysia says:

      Hi, Amber! The work-family balancing act definitely sucks under most circumstances – it’s a topic that comes up a LOT amongst my friends who are scientists – but it’s much weirder when it’s your sibling.

      Is there any way that you can get help for your sister now? One of the reasons I feel okay being thousands of miles away from my family is that I know Lily is getting the help she needs through California-based agencies, regardless of what my parents can provide for her. (I’m sort of in a reverse situation from yours; my parents are around but basically the rest of my family is not.) It looks like Anchorage has an Easter Seals chapter that can provide some in-home services, and it might be worth it to find out if they operate in Juneau. Depending on your sister’s specific needs, there might be other agencies that could help, too. Even if you’re the primary person responsible for your sister, that doesn’t mean you have to do all of the work alone. I’d also check out Southeast AK Independent Living or the Stone Soup Group, if you haven’t already, and consider reaching out to others via SibNet. (By the way, I in no way wish to imply that you’re not able to find these resources on your own by providing these links! I just feel bad that you’re unhappy and even sometimes feeling like you’re abandoning your family, so I wanted to try to help in some way.)

      As an academic/recent grad school grad – I applaud you for pursuing a masters! Are you interested in staying in or going back to AK to teach? Are you more interested in moving to the lower 48? Do you know if there’s any way you could find a position in, say, Anchorage, or Fairbanks? Still very far away, I know, but you’d be within the state, if that’s important to you. I wouldn’t say you need to decide that right now, but it’s been part of my own career calculations; as a postdoc, I know my time commitment to my current job is relatively short, and that helps me feel better about being away. It may be that you will want to take some time to see what your career will be like somewhere else, knowing that you can come back. And like my dad and I have discussed, it might be that your family, or at least your sister, might move to where you are when you’re settled. (My dad and I have discussed the possibility of my family moving to me when I get tenure. Which won’t be for a few years, since I’m not even looking for a job yet, but the idea is definitely under consideration.)

      Also, the thought I had when I first read your post: sometimes it helps people to know that their loved ones are happy. It’s certainly not something that just siblings of PWD experience, but I think a lot of us do forget that if we don’t take care of ourselves, we become less helpful to our families. Teaching is a really important job, and if that’s who you are – you should be able to be that person! Being who you are isn’t selfish – not when it means being an educated, productive adult. Time may be limited for you to be with your family, but time is also limited for you to live your own life. Even if your commenting here means we probably both know that’s easier said than believed. 🙂

      Best of luck making your decisions! You’re definitely not alone in what you’re going through.

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