Given that, you know I HAD to click on a link about Sir Patrick Stewart being awesome. He helped to surprise Dawn Garrigus, who has a serious degenerative disease, at DragonCon, with a personal meet-and-greet. Dawn has a problem with her mitochondria, which are nicknamed the powerhouses of the cell – as a biologist, my heart sinks reading just the name of the condition. I am so glad she got this chance, and the pictures make it look like the rest of her family join her in being huge Trek fans, like my family. My heart goes out to her, of course, but also to her sibs – of course.
…and yeah, it makes me wonder if I could ever ask the actor my sister only knows as Captain Picard to record a message for her, as “Data” and “Deanna” and “Wesley” all did. My dad now sometimes plays that recording for her (have I mentioned this? if I haven’t, oops! if I have, I’m doing it again!) on the phone. Through a creative use of speakerphones, I was part of one of these moments – I could *hear* that Lily was suddenly sitting totally still. When the message was over, she was just so happy. “Deanna called me on the telephone!” Thanks to the digital transfer we made of that file, we can make this happen again and again.
There are so many people who have been involved in the making of the Star Trek universe, and so many more who are fans in some way, that I know we can’t all be superb humans who never do anything weird or hurtful…but I think we do a great job trying to be the best we can be, among us.
Edited to add: This isn’t meant to be a passive-aggressive way of expressing that someone should pass this info along to anyone, for what it’s worth; I’m not actually ready to ask any other actors for help in crafting something for my sister. And, given that I already have done so? I can do it on my own. (If I were to make a passive-agressive – or direct – appeal to communicate anything? It would be just a “thank you.”)
You might take from this, however, that Make-a-Wish could be a charity to which you would donate…or not to tease a Trekkie in your life as much as you might otherwise. 😉
I mentioned not long ago that I’d made a “conversation” book for my sister. It’s a small photo book, which could fit in many purses and definitely in many small bags and backpacks, and it’s meant as something Lily can share with people she meets.
I added a second book: a book about my perspective, as a sibling, about my sister.
Things I included:
– where I live and why, how I keep in touch, etc.
– a guide to Lily’s alter egos
– a description of some family and friends
– suggested activities
– “creative” stuff (art, play jewelry making)
– “normal grown up” stuff (cooking, cleaning, exercising, doing volunteer work)
– fun stuff (hanging out with friends, going out, making phone calls)
And oh, the pictures! Pictures of Lily cooking. Pictures of her action figures, her leg braces, her favorite movies. Pictures of her in her wheelchair, going for a walk with my mom (I took that picture over Thanksgiving) and bowling with her friends and participating in family get-togethers. Pictures of the two of us together, as youngsters and as adults.
So far, I’ve gotten positive feedback from my parents, since I had the book delivered to them (and a duplicate, in case of damage to the first). I hope to hear soon whether the staff find it helpful. I mean, the entire goal of the project is to have a little bit of input into Lily’s life, but one that preserves my non-parental relationship with her and doesn’t require me to find a ton of time for her while I am finally getting settled in at my new job. I feel like I’ve seen a LOT of posts on SibNet about people who are their siblings’ custodians or guardians or otherwise legally responsible for their sibs, or who are basically excluded from caretaking, but not quite as many that are about the way I am with Lily. We are close and I want to be part of her life, but she has our parents there to make sure she’s okay on a daily basis.
I’ll let you know how it goes!
Somebody used this phrase in a search engine and found their way here:
i dont want to care for my disabled sister
…and I can’t let that one sit silently.
Anonymous person? I hear you, loud and clear. There’s a reason I live 3000 miles away from my sister right now. (Okay, a bunch of reasons, most of which have nothing to do with her – I have this amazing job that can’t exist anywhere else.) There’s a reason my mom told me to go to the college really far from home if I wanted to do that, and not feel like I had to attend the local college that was my second choice.
Of course, I ALSO do want to care for my sister. This stuff isn’t easy, and there are times when all I want to do is scream at the world that this sucks – just because I am feeling mixed up about my relationship with my sister, not because of her disabilities! It can be freaking HARD to love someone who has really dramatic needs, some days, and I think it’s maybe that much harder when that someone has been part of your life for almost all of your life. I absolutely sometimes feel resentful that I am “stuck” with Lily, just by accident of our birth as sisters. I do believe that just being genetically related isn’t enough of a reason to make one person responsible to another. (The continuing choice to be responsible to someone IS a reason to be responsible to someone, I think. And I happen to believe that we as a community are obligated to each other, but I think that’s only a little bit related here.) I know that despite my resentment and frustration etc., I myself have made the choice to be responsible to and for Lily.
So: many hugs, if you want them, Person Who Searched For That Phrase, and best of luck. If you’re reading this, you should also feel free to contact me about writing your own post(s) here, if you think that you’d like that. Same for anyone else reading.
My sister was so happy to have me home for the Thanksgiving holiday that when I first announced myself to her, she grabbed on to me and had a hard time letting go. I can’t blame her, really – wouldn’t you physically keep hold of someone you wanted to spend time with if you couldn’t see?
It was great to see her. We’ve had enough space recently that we really missed each other. It’s so much fun to be with someone who gets you and cares about you but also is willing to give you a bad time, without malice and just because.
It was also painful, of course. Lily was so happy about celebrating Thanksgiving, and about having me there, that she wanted to share it…and said that she wanted to call Grandma. I quietly told her that I knew, and let the subject drop. I assume Lily interpreted this as, “Well, you’re asking for stuff again and we have our reasons for not giving it to you, so we’re going to talk about something else now.” That Grandma died is something I’m still not sure she has been told, and I am sure she doesn’t understand.
Lily’s also transitioning staff still/again. I keep wanting to sit down to talk about what other people prejudge her to be, partly because of this constant exposure to new people…and honestly, it makes me hesitate, because it’s also so painful to see her struggle to process all of these new people.
But! Let me tell you the cool thing I did that’s working: I made my sister a conversation book.
Most of you probably know that there are a bunch of websites out there that sell products that incorporate photographs. Well, I went to one of those sites and built a photo book. Each page has one or two pictures of stuff that Lily has in her life: her Star Trek action figures, her Medic-Alert necklace, her rocking chair. I captioned each page (or picture) with a phrase that I imagined Lily might say, were she to tell someone new about whatever was in that picture. (Um, using correct grammar. Mostly. :-))
Apparently her staff LOVED it. It’s simple and not super long, has some of the most frequent people and things she talks about, and matches pictures to words.
Bonus: I can order more. (I just got the one because I wanted to see how it would work.) Then if someone loses it or damages it, the information isn’t gone. I’m working on a similar book that has “our stories” in it, which is specifically from my point of view, because I’m not there every day. In the draft text, I list Lily’s various alter-ego voices and their origins. I describe the family and friends she talks about most. I tell them what Lily’s favorite conversational set pieces are: the correct responses to the questions she is likely to ask dozens of times per week or month.
This may not work for everyone, but maybe it will work for some sibs. (Or other loved ones!) It seems to be working for us, to bring my permanent relationship with my sister back into the focus of people who live close enough to spend time with her every day.
I have not been blogging recently. I have, instead, been on vacation, moving to a new place, starting a new job, and dealing with intermittent internet. Now that my life has calmed down a bit, logistically, I am getting back into writing. I’ve got a post in prep about how moving for this new job has made me think about my relationship with Lily over the years since I’ve left home, and what that might mean for us going forward. Part of me likes that we get to be something closer to “normal” sisters, these days, although we definitely are not like a lot of siblings. Anyways, more on that later.
In the meantime, a question! As you know, I’m a scientist at my day job. As part of that work, I read what are called journal articles. For the uninitiated, scientific journals are where we publish the results of our work. (The remainder of this paragraph will give an overview of what that means; the questions are in the next paragraph!) They physically resemble something halfway between a collection of short stories and a popular magazine, like Vogue or Popular Mechanics, and ultimately kind of make a giant Wikipedia-like body of information about all sorts of science. In brief, we write a document that gives an introduction to what we’ve been doing and why other people should care, how it relates to what’s been done before, the details of what we did, what we found, and what we think it means. We submit those to journals whose audiences would be interested (I publish in journals focusing on evolution and genetics, while a friend of mine publishes in atmospheric and climate science journals), and editors decide whether they’re appropriate for consideration. Papers they approve get sent to other scientists, who evaluate and criticize the papers, and the editor takes that into account and then either accepts the paper for publication or rejects it. This is a pretty nifty system, because it means that we get reviewed by our peers – fellow professionals who understand what we do and can help ensure that our database of What We Know is as accurate as we can make it. (There are, of course, politics and personal issues that can arise, but hey, we’re humans, and we as a community do try to constantly improve.)
In my inbox today was a journal about how communication happens within and between cells. There was a tantalizing title about using a common anticonvulsant as a treatment for multiple sclerosis. I say tantalizing, because Lily happens to take this drug (valproic acid, under the name Depakote), and our mom has multiple sclerosis. As a geneticist, I’m (professionally) fascinated by how different outcomes of health and appearance are generated by the same basic instruction set (i.e., DNA) (my current project is even studying human DNA!), and personally, I wonder how my mom’s MS might relate to Lily’s epilepsy (and my fibro). So, my questions: when I find these papers, would you, my audience out there in the ether, be interested in hearing about them, and my thoughts about it? Are there topics that fellow siblings or others in the community or readership would like to hear more about, from a casual but professional perspective? This is non-trivial work, so it couldn’t be a super responsive or frequent feature of the blog, but I feel like I should put my training to use for people who could benefit from it!
Leave a comment or drop me an email and let me know what you think!
I’ve been thinking about this topic for awhile, and after reading (and, okay, responding to) a Captain Awkward reader letter about science, jobs, and career/life fulfillment, and after the news that the US Supreme Court has deemed most of the Affordable Care Act to be constitutional, I thought…maybe I’d put down a few thoughts here.
Growing up, I always understood “the American Dream” to be this: work hard, and your success will be rewarded. Study in school, go to college, and you can get a job that lets you support yourself and your family without worry for the future. Talent and innovation will be rewarded. Laziness will not. Failure is okay if you keep trying – you won’t get ahead by failing, but you won’t lose your dignity if you’ve given your all, honestly, in pursuit of your dreams.
There are two strands of thought I want to follow:
(1) Academic achievement is undervalued in the United States. In our current strained economy, it is astonishing that talented, bright, accomplished PhD holders can’t find jobs, and that the jobs they do find – usually hard won – may not pay the bills, including health insurance costs, as employer-provided health coverage is a benefit not provided to some college instructors. This, while we struggle with our students not keeping pace with the science, technology, and interpersonal skill that the changing economy demands, and which these PhDs are qualified to teach.
(2) The cost of a basic safe and healthy life is too high for too many people in our country to claim.
The United States is in the throes of campaign season for our upcoming 2012 national/presidential elections. Our Supreme Court has recently decided on constitutionality questions including whether recently passed health care reform law violates our Constitution, marriage equality, and how money gets used in politics. Our economy is formally not in recession, I gather, but we – and a lot of the rest of the world – have a lot to do to clean up after some of our recent financial problems. Pundits are talking about income inequality and the collapse of the middle class, and there’s a weird tension about “we need jobs” against “we can’t spend any money, even for jobs”.
I’m a scientist, and I like using data to answer questions and explain things that I find striking. I like the idea of using data patterns to help establish policy. My opinion is that the important data here are the stories – stories that are anecdotes on their own, but can add up to quantitative data.
So here’s my story:
I grew up in a loving, supportive home. My folks encouraged me to do well in school, and helped me to do it. (I have the red-penned papers to prove it!) After graduating from a prestigious college which granted me merit scholarships but required a reasonable loan, I went to grad school and earned a doctorate in biology. I found a job, coming out of my graduate work, doing the research I love and am good at. During that job, I struggled with my health, and ended up with a diagnosis of fibromyalgia during an unpaid medical leave.
Right now, I am in danger of not being able to pay my bills.
My employment status had to change due (at least in part) to some technicalities that actually have nothing to do with my health, so I no longer have employer-subsidized health insurance. (This would apply to anyone in my kind of job who needed extra time to work on a project, if that time were not exactly one year.) I was eligible for COBRA, and signed up, so I am still covered. I am taking multiple medications to help control my joint and head pain and nausea (I am vomiting one to several times a day, which my newest prescription helps moderate), and have both a primary care physician and a rheumatologist monitoring me (and might need to go back to the neurologist). It’s clear that having coverage is extremely important. What that means is that I’m paying a scary amount maintain my health insurance, every month. (For what it’s worth? $750 per month. And I live in a place where that can be rent for an apartment for a month.) (Also, with my shiny pretty PhD, I apparently earn less than the median income (see Table A) in this country…as of 2009. I should make something around the median next year, due to a raise, although I am told to expect an increased cost of living where I will have to live for this job.)
This isn’t how I imagined my life. Didn’t I do everything right? How is it that I achieved what most people in my country understand to be one of the pinnacles of achievement – a PhD – and I have trouble paying my bills? How is it that I make less, after all of this schooling and work, than a lot of people in other fields who have earned a bachelor’s degree? (Please note that I am happy that other people make money, and I really don’t have an interest in making very much more than I do. I just find it fascinating that my credentials are both highly esteemed, in my title and the respect people express when they hear it, and yet not particularly valued, in terms of my salary and the cultural disrespect for professors and professional scientists as amoral and tending to indoctrination.) I have ideas of my own, and agree with some of the ideas espoused by scholars and non-professional observers, but I remain a bit bewildered.
Why do I feel like my American dream can’t come true?
Look, I know that my family is a bit unusual, in a lot of ways, including our collective medical needs. But we are also like many (most? all?) families in the United States: we work, we play, we try to be good citizens and friends and people, to give back where we can and to pull our own weight.
And yet my family and I are not unusual: we struggle to afford health insurance, and sometimes to pay other bills. (Sometimes we struggle to pay for other bills because we prioritize spending on health insurance.) There’s a stat in the CHE article I linked above, from the USDA: In 2010, a total of 44 million people nationally received food stamps or some other form of public aid. We’re a nation of ~310 million. We’re a relatively rich nation. It’s mind-boggling to me that we should have 14% of our population in need of help – more than one in ten. According to the US government, nearly 50 million Americans do not have health insurance, poverty is higher than at any point in nearly 20 years, and wages are, in effect, declining.
I don’t have the heart, today, to talk about the disproportionate effects of the current system on women, people of color, people with disabilities, people who don’t fit into the gender binary or are otherwise sexual minorities (I’ve now seen this described as the QUILTBAG community), and people (like me, and like my sister, and like people I know and love) who stand at the intersection of one or more of those groups. (Or the other issues that are described in this comic that I don’t totally disagree with.)
I am thankful that I am so lucky: despite struggling with my current job during my diagnostic process, I found a new job that I should be able to handle, and it will provide health insurance for me with a very reasonable contribution on my part. My job should better position me to do what I can to help give back: to teach, to volunteer, to do good science that furthers our common knowledge and promotes progress. I am hopeful that the changes in our legislation to reform our health care system help us to make progress, and help people who need and want health coverage to get it. I am hopeful that other changes that are in progress or in reach can help make the American dream achievable for all Americans, including those we welcome from other places. My friends – including small business owners and fellow academics – are all okay, for now, as are my family.
On the phone with me on Mom’s birthday:
Lily: Ellie, tell…ask Mommy Happy Birthday!
(I mention this because Lily has had a lot of difficulty with distinguishing “ask” from “tell” when she is speaking to us in the years since she started trying to separate the two. This is one of the few times she got it right…and didn’t think she had.)
Lily indicates that she wants more to eat.
Dad: What would you like?
Lily: I want birthday cake!
(I should note here that Lily’s birthday is before Mom’s. She already had her birthday cake and ice cream. Well, okay, birthday vegan brownies and ice cream. She didn’t care as long as she tasted chocolate and got to have whipped cream on top.)
Mom told me that Lily seemed aware of time in a new way on her birthday this year. During the evening, Lily apparently told Mom that her birthday was over. And then asked if her birthday were “tomorrow.” (The party never ends with this one. *insert eyeroll here, from the decidedly introverted older sister to her extroverted sibling*)
I’m the last of the June birthdays, so I get to reflect on the others before I hit my own “wow, I’m getting old” introspection.