My sister’s epilepsy still scares me
Posted: March 18, 2011 Filed under: Day in the life, Medical crisis 2 Comments »I didn’t sleep well because my neighbors were doing something that sounded like a cross between emergency plumbing intervention, combating a small mammal infestation, and plaster demolition…at 3:30am. I managed to get through my workday without too many mishaps, and walked home in the end of the lovely spring day we had here. I had been home for a few minutes and was just settling down to enjoy a few minutes of quiet when my father called. I almost didn’t answer, but figured that they knew I’d be calling later tonight anyways and it might be useful to find out what was going on.
As soon as I heard him answer the phone, I knew. I just knew.
Sure enough, Lily was just waking up from the heavy load of drugs they’d given her to stop the seizure that my parents couldn’t stop at home. (The neurologist gave them a prescription for ativan, which is enough to stop most of her worst seizures if administered early enough. But some of the grand mal seizures persist.) She was about to be discharged, they thought, but the family wouldn’t be home for my call.
It’s like this. It always used to be like this – always waiting for that call. Recently, I’ve gotten a lot of incoming calls from friends and not so many from my family, and my guard has gone down a bit: I have stopped worrying every single time the phone rings that it’s bad news. But it’s like this, and it will always be like this. There will almost certainly be more phone calls from the hospital, or after returning from the hospital. Especially since both of my parents have chronic conditions that could flare up, in addition to Lily’s only mostly controlled epilepsy.
This time, it was easier – there have been a lot of these phone calls in the past decade. Oh, sure, I fucking lost it pretty quickly after hanging up the phone – I started to clear some junk mail and my jacket from the corner of the couch where I intended to sit and read, and just started chucking it all. But it didn’t hurt as badly when I first heard it, and that scared me, even though it’s probably a good thing that I am learning how to cope without pain.
And it was harder, this time, knowing that I’m on the other side of a continent from my family, and that I am consciously moving myself away from being entangled in their daily goings-on. I don’t know what my role is, here and now.
Here’s what helps: I talked to Lily. She’s her normal post-sedated, post-seizure cantankerous self. Some family friends are with my family tonight, and Lily was able to enjoy their presence, even if it was only briefly in the middle of her very reasonable irritation. And I know Lily’s staff were around to help with the physically and emotionally tiring work of keeping an eye on her; rationally, I understand that I am not needed for purely logistical reasons, even if I am having a hard time accepting that, emotionally.
Siblings with disabilities and considering kids of my own, revisited
Posted: March 12, 2011 Filed under: Day in the life Leave a comment »Note from Elysia: I haven’t posted a lot here recently because I’ve been going through a lot of emotional and intellectual upheaval. What I’ve written (and not posted) has been pretty raw and personal, and I’ve been hesitant to share. But this is exactly the kind of headspace I want to communicate – the part of having a SWD that’s messy, and the part I really desperately want to hear from other sibs about. (How do you cope? What have you learned? Can this help anyone else?) That’s worth risking sharing some of my internal chaos, I think. So here goes…
I’ve written here before about some of the thoughts that I’ve had about having a sister with disabilities and the desire to have kids of my own.
Turns out that internal conversation gets a bit trickier when you’re in a new relationship; I suspect it’s going to develop into something way, way bigger when I do eventually get to the point of discussing with a partner our readiness for children. (Yeah, not looking forward to that. I suspect I’m going to need to have a really awesome psychologist around.) I mean, hell, my current therapist recently suggested something I kind of have been aware of for awhile but don’t much like thinking or talking about: my fear of the unknowns in getting pregnant are so strong that it results in abstinence as my primary birth control method. (Which is only true insofar that fear has stopped me from pursuing sex when in relationships while not on hormonal birth control; I was on it for awhile for other reasons and stopped due to insurance/doctor logistics, but wasn’t involved with anyone at the time, so never found out if I was completely uninhibited/less inhibited regarding sex while on the pill. Life: it is complex.)
Let me tell you, all of this makes life a lot weirder for me. I really don’t want my sister to be central to my relationship with my boyfriend. I deeply resent that I ended up this way, so afraid of giving birth to a child as medically complicated as my sister that it actually makes me unwilling/unable to have sex. It’s beyond frustrating to see that in myself, and to have nobody to blame. Like every other damned thing that’s hard about my sister’s disabilities, undiagnosed and congenital, this is nobody’s fault. Nobody asked for this. We (Mom, Dad, me) didn’t choose it, except that we chose not to give up on her. Lily certainly didn’t choose this. And now: this guy I’m dating, he didn’t choose this…even if he has, thus far, to some degree, chosen me.
I’m hyper-aware right now that this is a new relationship where infatuation still holds sway, rather than (much slower to mature) love, and I find myself in a position where I feel compelled to have these big, serious discussions with the guy that feel like they belong in a later phase of the coupling process. I feel this way because I fear that if I don’t, we can’t have as much fun with the physical part of infatuation, because my inhibitions kick in and I find any sort of intimate touch anywhere from anxiety-inducing to physically painful. (Not just fear; this is starting to happen.) If I want to enjoy sex, I have to talk about my desire for children and my fear of what might happen to them, even if I do everything perfectly to ensure a healthy pregnancy. I have to talk about how I probably developed too much of a sense of protecting my bodily integrity because I hated being in the waiting rooms or struggling to find a place to sit in a doctor’s office (they never have enough chairs for Mom, sister, doctor, and patient) and I hated seeing what they did to Lily that made her uncomfortable or unhappy. That I feel like my own body can and probably will betray me at any time, because I’ve watched my sister’s body do that to her, and now my mom’s, too. (MS being a different kind of scary than epilepsy, for sure, but they’ve both crossed my mind when trying to figure out where this comes from.)
That pressure has been overwhelming. I mean, this man, he’s awesome, and he’s been patient and has wanted to hear what’s on my mind and has been open to having tough and/or intense conversations; I’ve been able to talk to him about some of this stuff. It’s very clear that I’m putting pressure on myself; now that I’ve found someone worth the effort, and now that I’ve started taking some of the necessary steps to disentangle my life from my family, I just want to get past all of the mess – as quickly as possible – and move on to what I envision as a (more-)normal life.
One that I’ve long hoped would involve (hopefully healthy) kids of my own. Eventually.
A new element of my sister’s disabilities and our sibling rivalry
Posted: March 11, 2011 Filed under: Day in the life | Tags: sibling rivalry, sister with disabilities Leave a comment »It is occurring to me that my sister and I are both trying to establish boundaries right now…with our parents…regarding our independence. And I am beginning to suspect that it’s irritating us both, this process, and I don’t think my parents are 100% clear about to this, since they’re busily managing their lives and dealing with Lily’s seemingly ever-changing supported living situation.
Here’s the thing that I’m feeling, put crudely: I want out. I love my sister dearly, and my parents, too, and I would love to be able to be there for them and help them and make their lives better, because they have always been there for me and tried to do that for me. But I want my own life, too, even if it’s only for a few years – my own job, my own friends and lovers, my own place to live. I do, in fact, technically have those things, but: for too long I have not been able to claim them as mine without feeling like my parents were involved, or at least keeping an eye on me. This is the first time I’ve been dating someone and not even hinted at it to my parents. I recently had a very interesting and wonderful thing happen at work; this is the first time I didn’t share that with my parents. I no longer call them all the time, no longer am shouldering the stress of Lily’s drama while not being able to do one damned thing about it, no longer feel like I need to have them aware of everything I’m doing.
Finally, finally: I feel like I am living the independent adult life that they say they want for me, that they hold up as a model of what my sister should have.
My sister has a different way of expressing emotion, and very different needs and wants than I do. She sort of needs space from my parents because she is doing the normal teenager/adolescent thing of rebelling and forcing her way into the world on her own. Loud music, parties, friends, going out to shop or work out – this is her life, or what I see she loves about her life. (I really do find this hilarious, because despite my affection for loudly playing hard rock and sci-fi or action films, I’m happy to be relatively quiet and calm at home.) We both can be control freaks – which, not surprising, given how both of us were likely affected by her epilepsy during our very young years – but she’s the showmaster, always playing the crowd. I really think she’d do well as a talk show or game show host, given the chance.
So when my dad asked me to research something involving technology for Lily for him a couple of weeks ago, and insisted that I call him back that evening, and I did, I was – somewhat reasonably – pretty upset that he told me that he didn’t really want to be on the phone with me at the time. He said he hadn’t seen much of Lily for the past few days. He said that she had actually called him Daddy. And I was furious.
Because, see, one of her language therapists had, some years before, seized upon my father’s first name as one that would be a good exercise for Lily. She’s largely called my parents by their first names ever since, although she uses “Mommy” pretty often (and in conversations between just the two of us, she does generally call them Mommy and Daddy). Can you imagine how her actually choosing a nice behavior would hurt me, because it got her the reward of parental attention, and I hadn’t wanted to compete for that? I was already upset in feeling that my dad was sort of misusing my time without realizing it, and even more mad at myself for not being clear with him that I was actually busy and didn’t really have the time to do a research project for him just because he called and asked me to do it. To have made the time and then have my proffer of information cast aside…well, I was not happy.
She called him Daddy. And he hadn’t seen her in a couple of days. (Dad, did you realize when you said that…that you had heard my voice less recently? And had last seen me months before? I know I’m superficially just totally independent and that I live far away, but that really hurt a lot more than I expected it to.)
So Lily and I are at odds, I guess, in that there’s some element of me pushing our parents towards her and her pushing them towards me. And yet this is driven by us being totally in sync when it comes to our common goal of pushing away from our parents and living our own lives. It’s an interesting place to be: learning how to define boundaries, while my sister does the same.
Signal boost: Celiac disease awareness
Posted: March 3, 2011 Filed under: Media, Sibling networking | Tags: celiac disease Leave a comment »Some of y’all will remember my relating how Lily and I are nerds (and I’m maybe a little bit of a Wil Wheaton fangirl). Well, it turns out…Wil also is a sib: his sister has Celiac disease, as does their mother. He just posted about this, and about the new website his mom started to help raise awareness for CD. (Check out the comments on Wil’s blog for some website recommendations from Celiac patients – recipes, support, etc.)
In addition to wanting to promote that, I also wanted to share one of those not-quite-perfect response moments I too often have:
It can be extremely frustrating to have a loved one following a specialized diet because their medical conditions demand it, when the rest of the country is seizing upon it as the newest and bestest weight loss plan. (We can talk at some other point about my feelings and my understanding of the science of fat and obesity, but remember: I guest posted at Shapely Prose.) I wouldn’t at all be surprised if a lot of people end up losing weight and/or feeling way better if they reduce gluten in their diets, given how poorly we seem to understand the diversity of human responses to gluten and the preponderance of gluten-filled foods in this country – it’s quite possible that this fad diet will help people learn to cope with milder problems processing gluten. (I think my mom’s been having this problem; I had wondered if it were possibly related to her MS, since autoimmune diseases are just fun like that, to my non-professional mind: if your body is attacking itself, who’s to say what the fallout will be?)
So this little petty voice inside of me insists on snarking: gluten-free is a fad diet, even if that’s not how it started or its most crucial role and people are going to blithely skip about, reveling in their weight loss miracles and totally ignoring the fact that they’re benefitting from a diet that is, literally, a matter of life and death for a lot of people. Kinda like the Atkins diet; total fad diet, and yet based on the ketogenic diet that is the last resort for a lot of people with otherwise intractable epilepsy. You know, the way my sister’s may be headed. It can be ridiculously irritating to observe, and I know I’ve gotten mad more than a couple of times because of the waves of popularity of the Atkins-related diets and the lack of awareness accompanying that about the people who need such diets for therapeutic reasons.
Maybe someday I’ll post about food in more detail here. I mean, Lily’s diet has to be fairly carefully externally regulated, given that her anticonvulsants affect her appetite, and my parents are being super careful with her in the wake of her nearly-fatal Salmonella infection. Both of my parents have had their gallbladders removed, Mom’s got MS, and Dad’s got diabetes. The requirements and preferences of any of us are likely to run afoul of someone else’s requirements and preferences, which is not such a delicious development. (Hey, I just realized why I am so insistent on eating what I like when I want these days: I’m fighting what feels like the inevitable lack of food freedom. Sigh.)
/end snark and fussiness
I know people with Celiac and have known people with gluten and related sensitivities and allergies for years, but clearly not enough people are in the know. So congrats and thanks, Mrs. Wheaton, for the new website, and thanks to Wil for sharing!
