Funny how life gets busy, huh?
I’ve been posting a lot more on the SibNet group on Facebook, since I’m on Facebook a lot for work and for fun anyways, and sometimes it’s nice to use my real name. I do want to start posting here again, though, because a LOT has been going on in the sibling life: new medications, new devices, new staff, new family relationships, and some plans in the works for good things I don’t think any of us expected to see happen.
Of course, now that I’m contemplating posting again, I am experiencing a temporary internet outage at home and so…we’ll see how it all goes!
Right now, it’s late January. Next month, it will be two years since my diagnosis with fibromyalgia. It will be sixteen years since my mom’s diagnosis with MS. It will almost be an anniversary of Lily getting her own apartment – sad, isn’t it, that I don’t remember the date of that event, but I remember the diagnosis dates?
This semester I am teaching non-scientists about biology. I have a huge class (for me!) and I’m trying to get to know something about them all. I’ve been talking about Lily with some. Someone asked about stem cells and placentas (that could be a whole other post!) and that led me to hear about that student’s parent with a post-accident paralysis, and to share my thinking about Lily having been born with only a single eye. I wanted to convey to this student – to all interested students – that it’s slow, hard work, this science stuff, but we are people with disabilities and medical issues, that we are people who love those who identify that way, that our lives and our work are often driven by those experiences.
With the help of some friends, I am trying to organize my life and activities in a different way this semester. I’m teaching one class for a second time, which makes it much, much easier to prepare. I’m hoping that helps me have time to take care of myself.
I guess I want to share here that an intensely emotional conversation with a good friend a few days ago helped me to realize that more of my life than I like to admit has been shaped by the conviction that I must not be a burden, whether that be due to my feeling that I was to care for Lily or whether it was the worry that my toddler self must have felt about how much Lily needed.
It’s one of those emotional issues that’s been lurking just under the surface for a very long time, and it hurts to confront, even at a very minimal level. It shapes who I am in the classroom, who I choose to be in my job, how I interact with friends and family, how I do or don’t engage in dating, why I’m always worried about money, even when I’m doing okay…probably more than that! I’m really hoping to find a therapist with whom I can discuss these issues; it’s both a great thing and a terrible thing to value independence and self-sufficiency, depending on whether you accept help or help others, and whether it changes over time. I hope I can figure out how to reshape those feelings to make them work for me.
Other than that, there’s a lot that’s gone up and down in Lily’s life. She’s been injured and did okay recovering. She’s had more staffing changes. She’s continuing to play with small talk and sophisticated sentence structure.
Right now, I miss her a lot.
Dude, the random stuff that comes up in the spam filter sometimes makes me laugh. Like this:
Now the man becomes agitated — why are you being shallow and selfish? Do you not care about any of his other good qualities? Didn’t you just hear him say that he always remembers his girlfriend’s birthday? In light of all of the good things he does, does it really matter if he knows how to perform surgery?
Which – yes, spam! – has nothing to do with anything I’ve written here. And my very first thought, upon reading it (besides that it was stolen from somewhere else) was: as a patient, as a professional educator, as a HUMAN, you’d better BELIEVE that I care if someone knows how to perform surgery…if that is that person’s job or they are asked to perform surgery. And the narrative structure of that little bit of text made me think that’s what was at stake.
And what do you know? I found the source of the spam text: an article on Cracked! I’m not sure whether I agree with the substance of that article, after a quick read (I find it a bit reductionist and it seems to endorse a way of life I don’t see or accept as a universal human experience), but I am relieved that I was meant to understand that remembering a partner’s birthday (which, hey, good for you! most people like that!) is not really what the world expects when you are in a situation where someone is bleeding on the ground.
This concludes my break from work to check the spam filter. I now return you to your life.
I’m in the process of changing medications to manage my symptoms and going through yet. another. round. of “exhaustive” blood tests (the phlebotomist/nurse was startled by the length of the order), as I’m struggling with nausea and am getting headaches more days than not. Somehow I am still managing to show up and not be entirely unproductive at work.
My sister is in a staffing flux that I think is upsetting her a bit – I called her last night and she couldn’t remember the name of the staffer who was helping her during that shift, and was more insistent than usual that she be allowed to talk to Mom and some other staffers she knows better. (How weird and scary it must be for her – to have to trust a stranger to help her, when she can’t see and can’t always say what she needs to communicate!)
So: I need to focus on self-care instead of blogging for a bit. I’ll still be monitoring the blog, but don’t plan on posting for a bit.
See you on the other side of this…
Hurricane Sandy has caused me a bit of stress. I hope that everyone affected is doing okay, and I hope that those people without power or clean water get it restored soon.
My family, being Jewish, does not celebrate Halloween. My family, being decent, does hand out candies to kids who go trick-or-treating. My mom was delighted to report that two of the kids who came by their house had visible disabilities, and were being assisted by people who seemed to be their families. I hope that those of you who have sibs with special needs and who do celebrate Halloween (and the other holidays happening around now) are able to enjoy an inclusive, happy time!
My dad’s birthday is coming up. Lily’s first idea was to get him soda for his birthday. Her second idea was to get him cookies. He has early-stage, well-controlled diabetes…which she doesn’t know/understand. The soda and cookies that come into the house are not the kind she knows how to buy! 🙂 I’ve suggested to her (and her staff) that Lily make some bookmarks for Dad, who is an avid reader. I’ve asked Mom to help out, too, possibly by helping Lily and her team to get the bookmarks laminated. We’ll see how that works. Lily has, in theory, agreed to this, during a phone call we has last weekend. I’m glad to have her offer her ideas for Dad’s birthday.
But sometimes it’s a little sad that my sister doesn’t quite Get It and I have to do “extra” thinking to make sure that she is as much part of family activities as I am.
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 have so many posts stored as fragmented drafts right now it’s a little funny. Some of them need very careful attention before going public. Since I am finishing up one job now and will have to move and get settled into a new job over the next couple of months, that time may not be easy to find, although it may also come during moments of procrastination. All of this busy-ness good, but can be stressful – which means my health is wavering a bit. (I also have another series of doctor’s visits coming up. Should be helpful – these are followup/checkups – but still, sigh. Speaking of which: I’ll try to put something up for fibromyalgia awareness day, later this month!)
I also wanted to take a quick opportunity to make it clear that I welcome dialogue here (even if as of mid-2012 the volume of visitors is on the low end), and would be thrilled to have guest posts. The Story of Lily and Elysia is an unusual one even within the sibling community, I think, and while I love having a platform for our stories, I also love hearing other people’s stories and would be delighted to help other voices be heard. Interested? Let me know!