The purpose of the blog
This is a blog dedicated to sharing stories about what it’s like having a sibling with disabilities. In my case, that’s a younger sister – I’ve given her the pseudonym “Lily,” which is a play on an aspect of one of her names. She’s got a lot of medical problems, mostly congenital (= “birth defects”); there is no overarching diagnosis or explanation for why she has so many medical problems. The most prominent of these right now are epilepsy, her delayed speech and motor, and blindness.
Lily was born with hydrocephalus (“water on the brain”) and related disruptions to normal brain growth and development that resulted in developmental delays, motor problems, and speech difficulties. (Those are certainly not helped by her congenital cleft lip and cleft palate, which were surgically repaired during infancy.) Lily has only one eye, and high glaucoma pressure in that eye meant she spent her childhood wearing glasses, until her retina detached (hence the current blindness). She has a short stature, and while she’s hard to measure, I think she’s no taller than four feet. Given all of this, Lily has impaired mobility, so she normally crawls when she’s at home to get herself around. She uses a walker or a wheelchair when she’s away from home, depending on the situation. Oh, and Lily has braces that cover her feet and her lower legs while she’s walking.
Myself, I’m the older sister. I’m a scientist who primarily studies evolutionary genetics; my PhD focused on a field called population genetics, and in my professional life I am trying to combine that with genomics and the biology of microscopic organisms. I’m using the pseudonym “Elysia,” which is part of the scientific name of one of my favorite animals (a sea slug), which has a complex relationship with algae. In general, I’m physically typical – no major health issues, minor heart murmur notwithstanding. Since starting the blog, I’ve been diagnosed with fibromyalgia, which overlaps with anxiety, depression, and migraines, among other things. So maybe I’m not totally typical? But I present that way.
Why am I writing this blog?
When my father asked me why I waned to start a blog, I told him that I thought it would be useful to have a place where I could talk to other people about what my experiences were like. When he asked about those experiences, I noted that (as I mentioned in my inaugural post) one of my friends and I had found a lot of comfort in talking to each other about being graduate students and living away from siblings and family whom we love. I don’t think I’m particularly special or that I’ve faced amazing challenges; I do think that I think about life a bit differently than some people and hoped my stories could provide insight, comfort, amusement, or education. (Yes, I’m on my way to being a teacher who uses her own life experience to help bring perspective to the classroom.) I had zero desire that this would be a place for me to say, “Give me attention and feel sorry for me so I can feel special!” Rather, I wanted to be able to say things like, “Does this ever happen to you? / How else could I deal with ___? / Yes, this is an understandable/natural response. / This might help: ___.” Or even, “This sucks. And now that I’ve said that, I can get over it.”
About the picture
This blog is a little bit of a storybook (despite its nonfiction nature and diary-like moments). I wanted to include some illustrations of who we were, so there are cartoons I’ve drawn of what Lily and I look like. They are completely accurate and at the same time look nothing like us. 😉 They’re meant to be the faces of dice, which is why there are other squares with “traditional” die faces on them. Being a science nerd, I wanted to carry through the notion that our genes are like dice, and it’s chance that plays a significant role in how we end up. Hence the DNA strands on other die faces.
Important things to know
As you may have inferred from the pseudonym talk, this blog is meant to be anonymous. My intent is for anyone to feel comfortable coming here and reading or writing without worry that it will hurt them offline (or even elsewhere online). I anticipate that some of my thoughts and those of other siblings may reflect normal, understandable emotion that we still feel strange about admitting to feeling. I want to make it easier to share our stories, knowing that our identities remain ours to reveal or conceal, so please try to avoid using real names if you post/comment here. Your respect for our privacy is greatly appreciated; we will respect yours.
I’ve noticed that a lot of people feel like anonymity allows them to make complete fools of themselves online in a way that they would themselves probably find offensive in face-to-face interactions. So, regarding comments: don’t abuse anonymity. Thank you!
Finally: I’ve given the blog a PG-13 rating, so be prepared to encounter topics or language that are best suited for teens and adults. This is a space for me to honestly express sometimes difficult thoughts and emotions, and that means talking about complex issues and using the full breadth of my vocabulary.
Note: Some things are changing in my life these days (spring 2012), career- and health-wise, so the blog may change!
Another note: Want to be part of the blog, or ask me questions? I’ve got an email address you can use! elysia.btw, at gmail.com.