More fucked up than thou

I have to start this by saying that it has been about a decade since my sister and I could stand each other.

Things are the way they are between us for a lot of reasons. 

My father was a terrific father to small children, but when his children started forming their own opinions and disagreeing with him, even rebelling (very mildly in my case; rather extremely in hers), he couldn’t take it.  He was an angry control freak, and he did not respect us as people.  It feels very sordid to put this in writing.  You have to understand, I love my father and he and I get along reasonably well now – now that I am 27, have two college degrees and am about 2/3 of the way to a third, and have not lived in his house for most of the last decade.  It has taken a lot of work and fighting to get to this point, and I sincerely believe it would not have been possible if I had not moved out as young as I did.  Three years ago, he and I had a serious fight in which I told him that if a man I was dating treated me the way he treats me, I would call it abuse and tell him not to let the door hit his ass on the way out.

My sister has not been so lucky.  Her bipolar may be worse than mine; it is without a doubt more poorly managed.  She has anxiety issues and may also have borderline personality disorder – she has been diagnosed with it by one psych, and I personally believe it accurately describes her.  She also has an eating disorder that flares on and off.  She barely finished high school and spent the year and a half after high school utterly fucked up on drugs, alcohol, and mutually abusive relationships.  She enrolled and failed to finish multiple semesters at the community college, which only added to my father’s lack of respect for her.  I have always been the practical one, the one whose expectations are at least more-or-less based on reality.  My sister has not had long periods of not living with my parents.  She had an apartment for a while, but it was only a few miles away and she came over weekly to do her laundry (or to be more precise, to have my mother do her laundry).  A little over 3 years ago, she got pregnant and decided to keep the baby.  She didn’t bond with my nephew when he was born, though in the last year she has become much more involved.  However, she really isn’t capable of being a single parent, so she is effectively trapped in my parents’ house because she needs the help.  She told me years ago that she resented me for leaving when I did, abandoning her with our father; it certainly explains a lot of her behavior towards me.

I say all this not to exonerate her, but to explain the situation I find myself in.

You see, my mother’s life largely revolves around trying to keep my sister from harming herself.  My father and my sister have terrible fights, like he and I had for years before I left for college.  My sister’s mental health has been poorly managed since she developed bipolarism, we think at around age 12, the same age as me.  She has only had one good therapy relationship, and has disliked the way she feels on medication strongly enough to mostly be off of them.  She swings suicidal unpredictably.

My mother is the only buffer between my father and my sister.  They are dysfunctional in ways that are directly at odds with each other, and there is a constant tension and anger in this house.  She also gets dragged into fights between my sister and I, usually because my sister tells her how angry she is over something I said or did.

My parents don’t really understand how severe my bipolar is, for a lot of reasons.  I’m a more private person than my sister – it may seem hard to believe, since you read this blog and I write all kinds of deeply personal things here, but I haven’t ever been very open about my emotional state with my parents.  As messed up as my relationship with them has been at times, I have always wanted to be someone they would be proud of.  I live farther away, and have for a long time, so they don’t see the days I don’t manage to get out of bed or the projects that don’t get finished or the crying jags or the times I get suicidal.  I’m far more self-reliant than my sister is, and I make shit work until I can’t.  I also have a better network of friends, who I rely on in times of need instead of asking for help from my family; her friends have historically been users.  My bipolar looks different than hers – hers is more obvious, violent lunges in one direction or the other, where mine sneaks up on me until the whole world is gray or so bright I can hardly bear it.

I’m writing about this because I made my mother cry today.

My sister and I clashed pretty badly last night, and I told my mother about it today because for once, I didn’t want to be the bad guy.  I’m always the bad guy.  I’m always supposed to be on eggshells around my sister, and if she gets hurt or angry about something I said, it’s my fault.  And even though, for once, I was the one who talked to our mother first, I was the bad guy again.  Even though my sister presented some pretty damn fucked up opinions, which included an opinion that (among others) people with disabilities (later refined to ‘people who don’t contribute’) should be killed to ease world overpopulation, it was my fault that we clashed because I told her that what she was saying was fucked up and I insisted in a slightly later part of the discussion that science has not proven causation between weight and the amount/quality of food a person ingests.*  And furthermore, that dieting is more dangerous to a person’s health than being overweight.

Why is it my fault?  Because I’m supposed to be less fucked up and therefore more is expected of me.

Perhaps the most fucked up part of this is that more being expected of me is what led me to attempt to kill myself when I was 15.  I couldn’t bear the fact that I was constantly disappointing people, failing to meet expectations, and I really believed that people would be happier without me.  Then, it was more expected of me academically, because I was so damn gifted.  Since then, it’s become more expected of me in terms of work and relationships because supposedly I’m less fucked up emotionally.  Because yeah, putting that weight on me again is going to be a healthy thing.

*No, this is not an invitation to debate this point.  There are studies, which I am not in the mood to dig up right now, that point this out.

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Stranger in the family

In honor of Mother’s Day (albiet somewhat late), this is a post about what happens to your family relationships when you’re a PWD.

Now, there’s an important distinction to make here – people who have always had a disability or chronic illness and people whose illness/disability showed up in their adult years.

I’ll admit, I’m limited in how much I can speak about a disability from a young age. I can only say what I’ve observed. PWDs who became ill/disabled young often have really difficult dynamics, which get worse around the time they become adults. Families that are either too helpful, or completely unsupportive, or a confusing mix of the two – ultrasupportive at times, and unhelpful at others. As PWDs become adults, they often find themselves in a position where their family does not want to admit they have grown up – parents who insist on coming to doctor’s appointments (and even if they give in on this one, demand to know everything that happened), panic when their child with a disability wants to move out and have a ‘real life’, call constantly to make sure their child is following their treatment plan, etc.

As for myself, my genetic condition became disabling (probably because of the addition of a secondary illness, fibromyalgia) as I moved across the country from all of my family. As a result, my family is very much not involved in my day-to-day life, and really not inquisitive about my medical care. My mother has called me her ‘secret child’ – my sister tells my mother everything, but I really never have. It’s not that I shut my mother out, just that I am a more private person than my sister. Also, I suspect a lot of the way my sister talks to my mother is to get what she wants.

So we talk sometimes about my disability, usually when the medical bills are piling up frighteningly high, or I’m scared about the way the future looks for me, or going through piles of testing (which usually doesn’t show much).

The only time my family really interacts with my disability is when I fly over to visit, which has happened three times now. It’s an odd mix of reactions, to be perfectly frank.

The first visit, the thing I was having the most trouble with was my hands – so my mother changed the doorknobs on every interior door that I’d need to lever-style handles, which were easier for me as I just needed to figure out a way to push them down. They don’t seem to mind getting wheelchairs for me at places like amusement parks, or letting me sit somewhere while they wait in line and then just hop in when they’re near the front. They don’t make a fuss over the fact that I sleep longer, and take naps. They more or less get that I get a few hours of being ‘up’ during the day, and other than that, I must stay more relaxed and not be up and about, out and doing.

However, the emotional side of things is much trickier for them. You see, all of my life, they’ve called me a clutz or ‘fragile’ because of how often I get injured. It was, for me, an intense sense of vindication to be told that no, the injuries I had gotten all my life were emphatically NOT my fault and were related to this genetic condition. I’ll admit, I still harbor some resentment over the way they responded to my injuries.

There’s also this…I don’t know how to explain it. They don’t get, and don’t seem to want to get, what it is like to live as a person with a disability. The clearest example of this to me was a discussion we had in the car one day. My sister was pregnant at the time, and complaining about how people invaded her personal space to pat her belly. I mean, who would ask to pet or rub the belly of a non-pregnant person? Naturally, this made her very uncomfortable – particularly the people who just touched without asking. I compared it to random strangers on the subway asking about my medical history, and how that felt like a tremendous invasion of my privacy. I mentioned that when I was in a bad mood and people asked why I walked with a cane, I would tell them things like ‘it’s good for whacking annoying people’.

My mother’s response that I had a bad attitude. I should be glad that people are asking these invasive questions, because at least then they aren’t ignoring me. According to the PWDs my mother knows, being ignored was one of the worst parts of dealing with people when you’re disabled. And if they’re asking about your illness, obviously they care.

Now, I’ll be the first to say it, being ignored sucks. But that doesn’t make complete strangers asking personal questions (and feeling entitled to the information) any less unpleasant. This false dilemma – that either you will be ignored or people will pry – is terrible, and it hurt me deeply that my mother thought that my desire to have the same kind of privacy normal people get. Besides that…when random strangers ask why you walk with a cane, it isn’t that they care. It’s that they’re nosey and curious and gee you’re not quite normal so you have an obligation to explain to them why.

My father really just…doesn’t deal with it, and tends to be very quiet about it. My uncle and his wife have wanted to know what’s going on and how I’m doing, but no one else in the family inquires. My sister gets pissed if my disability causes me to get attention that she believes should rightfully be hers.

In many ways, my disability feels like a stranger in the family, and not a welcome one. Oh, they do things here and there to accomodate it. The physical side of things, they accept and work around, but the emotional side of things, they do not even want to acknowledge. And in general, no one wants to talk about it. My disability is something to deal with as little as possible – something I had not expected, and have been hurt by.

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