Archive for ‘Family’

20/08/2013

The very worst part of being chronically ill, is the guilt.

No really, I’m not kidding. Worse than; in no particular order,

the pain,

the tiredness,

the diarrhoea,

the bleeding,

the constant low-grade headache,

the skin lesions,

or even having to deal with tin-god junior doctors.

Seriously, worse than any of that is living with the guilt. But what do I mean by “the guilt”? Well that’s going to take a bit of explaining.

The average person can do pretty much what they want to do. Want to see a movie with a friend? No problem, “Which movie, and what time?”

Tell their partner not to worry about the housework, that it’ll all be done when they get home; yup, got that covered.

Or how about wanting to go to bed with a lover, going all out with the flirtation, the foreplay, the making them feel like they’re standing at the centre of a sexual whirlwind; then having to stop because you’ve run completely out of energy, or because your body has decided that this is exactly the right moment to need to throw up?

My own life is a huge list of cancelled plans, lost connections, and missed opportunities. I can’t begin to count how many times I’ve gotten ready to go somewhere, only to have to cancel at literally the last-minute. Or how many times I’ve missed events that I was really excited about attending; many burlesque events, artistic events, movies. Hell not that long ago I had to miss one of my favourite singers, Voltaire, because my body decided that it really needed 4 straight days of bleeding from my bowel.

In essence, I am an involuntary flake. Totally unreliable where any social life outside of my own home is concerned. To be able to do something as minor as go do the weekly grocery shop I rely on medicating my body to a point where I will “probably” get a few hours of not needing to be within ten feet of a toilet. Note the “probably”, the quotation marks are there because about 1 time in 10 it doesn’t work, with sometimes rather cataclysmic results for my underwear.

Now, you’re probably thinking that this should all lead to my feeling sorry for myself. But it doesn’t, or at least it only does very rarely. I’m used to not being able to plan with any certainty. The best I can ever promise is “maybe”, or very occasionally, “probably”; I’m used to being like that. I’m used to never being able to even think “definitely”. Definitely simply doesn’t exist in my life, and I’m used to it, I’ve had to grow used to it.

But what I’ve never grown used to is the guilt that goes with constantly letting other people down. For example, I quite simply can not remember the last time I went out for a night with my Partner-in-Crime. No memory at all, it’s been that long. And I feel terrible about it. I know she loves a good night out. I know she would love to have one with me, but…

See, there’s always that but. Even if we manage to make it out the door, odds are I’ll need to come home very early when my bowel starts to voice its disinterest in staying away from its porcelain best friend.

The same goes with friends. Over and over I arrange things with friends, only to have to cancel at the 11th hour because I simply can’t leave the house any longer.

So, boom, guilt for letting them down. For cancelling plans and leaving them in the lurch.

Then of course there’s the other sides to the guilt. The the side triggered by the worry you cause people you love. Or the aspect of it caused by not being able to pull your own weight. Or the guilt that strikes when you realise that you’re just a bad girlfriend, a bad friend, a bad lover, daughter…the list goes on and on.

And all this means that you say “I’m sorry” waaaaaay too much. So you find yourself feeling guilty for being sorry.

Yeah, being ill is rotten, but feeling unending waves of guilt is worse. Now if you’ll excuse me, the toilet is calling my haemorrhoids, by name.

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09/03/2013

The thing I hate most about my life.

Is not that I’m transgendered. I’m cool with that. No, actually I’m very, very happy with that. It’s a big part of not just what, but who I am.

It’s not that my sexuality seems to have shifted a little. I may not be overly fond of the fact that I’m what I think of as a 5% bisexual. But I don’t hate it, I just don’t hugely like it either. After all your sexuality isn’t something to love or hate, it just is.

It’s not even the way that I am always sick, hard as that may be to believe. And believe me when I say that always being sick is a very hard road to travel. Never being able to plan more than a couple of days ahead, simply because it’s impossible to predict what your body will be capable of in a few days time. Not being able to do the things you love, because they hurt too much. It does suck. But after so many years like this being ill has become rather like my sexuality. Just something that is.

I don’t hate that I’m kinky, or poly. More love is usually better (barring the occasional psycho second partner, or that rare person who simply is incompatible with your other partner), and how can finding ever more interesting ways of expressing that love be a bad thing?

Nope, the thing I hate most about my life is the, for me, immeasurable hurt that my existence in her life has caused my partner. Well more precisely the hurt my existence has allowed other people to cause her.

I adore my Partner in Crime. I simply could not wish for a better partner. She’s loving, caring, intelligent, sexy, beautiful, and unlike me can actually cook. And after almost 9 years in each others lives I would be hard-pressed to come up with much of anything about her that I don’t love. She’s given me 9 years of mostly happiness. And I like to think that mostly that’s what I’ve brought her also. But my nature, which is so often an issue for people on the street, has also from time to time proven to be an insurmountable issue for members of her family, and I suspect for people who are now former friends.

So I hate that my existence means that she has lost inclusion by parts of her family. I hate that I’m the reason for her losing out on those relationships. I hate that my loving her has led to her missing important family events.

I come from a rather small family myself (excluding various adopted family members who rather dramatically increase the numbers). Just myself, my mom, and my brother. But I know how much it would hurt me to be excluded from anything that might happen in the years to come. So I can at least begin to imagine how this has hurt my Partner. And all I can do to make up for that hurt is to love her as much as I possibly can, while I try my hardest to deserve being in her life.

Anyway this post is really just about me getting this off of my chest. Its been bothering me a lot lately, and better to vent than to let it build up until I finally explode leveling a large part of Dublin County.

19/02/2013

Living in a golden age.

(This was written at 4am this morning in a fog of insomnia fueled exhaustion. So if it rambles a little please be patient.)

Recently a wonderful and horrifying thought struck me, that we are all in the western world, and almost certainly in other parts of the world also, living in a golden age. Now please do not take me up wrong on this. I’m not saying that we’re living in a perfect age, I fully acknowledge that there are still inequalities, wrongs, discrimination, hatred, and all the other seething pus that humanity always seems to spend a lot of it’s time floating on. But right now life, even in this second Great Depression, is for most people in the West blessed beyond the dreams or imaginations of even our grandparents at our ages.

Information is there for the taking, piped directly in to our homes, and on to our laps by the internet. Why I just spent the past few hours taking a very basic crash course in film-set lighting, something that even in my memory would have before required at minimum a very understanding librarian and a lot of patience.

Medical care is widely available. Now it’s far from perfect, and the right care may not always be readily available for the right person all the time, but for the vast majority of people (in Ireland, and the UK, America…WTF Dudes?!)  it is achievable.

The much maligned welfare state exists in many western countries, and through national conscience helps to keep those in trouble from finding themselves on the street. It’s not for nothing that it is sometimes referred to as a safety net.

Education is up until 3rd level guaranteed. Admittedly it is still up to the student to apply themselves, and make the most of that opportunity, but at least they get the chance.

Those last remaining ill-regarded, and unprotected minorities are finally gradually being cared for by states laws. Roll on the day some of the cutest lesbian and gay couples I know can throw simply fabulous weddings.

Compare a world where the “Emigrants Wake”, a sort of combined going-away party and funeral for the still living which was even in the 80’s a major part of Irish emigration, is not really needed anymore. Now we have Skype, email, telephones (mobile or good old-fashioned landline) in every home. Our loves who are a world away have never been so close. Where as even 30 years ago a family member leaving for the States meant at worst good chance of never seeing them again, and at best rarely hearing from them.

Add to this the fact that the European continent has never been at peace for so long. (Yes, I know there was a war in Serbia and Bosnia not all that long ago, it was terrible, and I can only imagine the pain that people from there still feel to this day. I’m speaking here of the larger European powers not being at each others throats for once, and Europe as a larger whole.)

Nuclear war has shrunk from an ever present worry, to a pale shadow of its past self. And while that particular genie is still out of his bottle, and will forever more haunt our species to some degree, at least for now we only have to worry about the U.S.A., North Korea, and China starting something, at least until the next time Russia decides that Empire is a good idea.

When I think about the world I live in today, and compare it to the world I lived in as a child, or even a teen I find myself filled with wonder, relief, and not a little fear.

Wonder because the world has become wonderful in ways I never imagined. The internet, somewhat affordable air travel (for now at least), the freedom to publicly love whoever I wish regardless of their gender, HIV becoming to some degree a chronic illness rather than a death sentence. Hell even the small things like my entire music collection fitting in one pocket, while 1,200 books fit in the other is something beyond my own imagination as a child, but most days I walk around with a small library music and literature in my pockets.

Relief because the older ways of thinking are gradually, painfully being erased, and I for one don’t worry about the pain, a little pain isn’t a bad thing, it helps you to appreciate the joy that follows. In my own life I’ve seen Europe become a (somewhat fractious) whole, the power of corrupt religions called in to question, and the voices of the abused, tortured and raped finally heard. Of course those with the power doing something about it…well that will take some more time, and possibly a liberal application of cattle-prods. But I have genuinely seen life get better in my own lifetime. I’ve experienced it get better for me personally.

But I’m also experiencing fear at what I’ve called a Golden Age, perhaps I should have said “start of a Golden Age”. You’ve heard it said I’m sure, that to all things there is a time, and the sort of progress we’ve only just really started making is fragile. The wrong person in the wrong position of authority, and it could all come crashing down. The wrong act by the wrong well-meaning madman and we find ourselves at each others throats yet again. The very human tendency to say “that’s good enough”, when we should be saying “That’s a good start”, could lead us in to stagnation, and then in to decay.

Humans are still just a blip in history. Our whole history as a species is microscopic compared to our worlds story. And nanoscopic compared to the universe as a whole. But even in that short blip so many human societies have experienced their Golden Ages, lived without noticing, without seizing the potential that was offered. I truly fear that this chance to achieve greatness might be lost too.

But for this moment, right now, I’m going to concentrate on being happy that I live in a time of wonders. So those memories will sustain me if the time of collapse comes while I still live.

23/06/2012

I hate inheritance stuff.

Recently my mom wrote her will. I should actually say that she finally wrote her will after almost 5 years of my chasing her to do so. I wanted to have some legal certainty in what her wishes were in case of her death, and for there not to be a massive family shitstorm.

So during the phone conversation where she told me what it contained she mentioned that I’m to have all her jewelery. You’d think I’d be overjoyed. And I am, though not for the reasons you might expect.

I am of course delighted that my grand-aunts wedding ring will come to me, and not end up dropping into the familial aether. She was more  my grandmother than anyone else, and her husband is in many ways who I compare all men to (if you knew him you’d understand why so few ever match up), and I love the idea of having a solid piece of that part of her life in my possession to remember them both by. It also turns out that my mom is delighted that I want it, she’d worried that I wouldn’t want it at all. Silly Mom!

It also of course clears up her wishes about the family home, the disposal of her corpse, and all the rest.

But even though I was the one chasing her to do this, I hate it. I hate that she has a will because it makes me acknowledge that one of these days my mom will die. Mom is 60 now, almost 61. And she’s a very young 60. My Partner in Crime’s granddaughter actually refuses to believe that she is my mom because she’s too young. But like the rest of us she’s not getting any younger, and I don’t have to like that.

During the early years of our time together, I helped my PiC to get over the loss of both of her parents. I saw what it did to her. I’ve buried a lot of friends, and a lot of family over the years. I have a pretty good idea of what losing my mom will do to me. And the knowledge that she has her Will made out only drives that I won’t always have her more forcefully home to me.

So yeah, I’m very glad she has a Will. To me like voting, having an airtight Will is just common sense, and a duty to both yourself everyone around you. But I don’t have to like it, or what it means for one to exist.

22/05/2012

Two Children Thrown to Their Deaths in Italy.

I was going to post something about the Stability Treaty referendum which goes to the polls on the 31st of this month. Then I read something in the news that shook me.

Today, well yesterday now, a 41-year-old man in Italy threw his 4-year-old and 14 month old children from a 6th floor balcony, and then threw himself after them. I don’t really know what to say to it. It just leaves me with a hollow, sickened feeling in my chest. What could drive a father, who was presumably loving, to murder his children, and then follow them? Will we have a version of this play out in our own country before much longer?

The best part of being a child is knowing that the whole future lies ahead. There’s always tomorrow for a new adventure…

I just don’t have words for this, except maybe to say that suicide is most often a tragedy, but robbing two children, your children, of their lives while you do it is beyond comprehension.

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08/05/2012

When Mommy is Unwell.

So this weekend my mother went into hospital. It was sudden, very unexpected, and in no small part due to my living on the other side of the country, stressful as hell. As I write this she is in fact still there.

Anyway, this whole episode has made me realise just how much I worry about my mom. Not surprising really I suppose, she is 60, has ill-health almost as profound as mine, and lives alone, though admittedly within 3 minutes walk of two of her sisters, and one of her nieces. Although not that it really helps all that much, because the thing is that while they are there, I’m not. And I won’t be until this Saturday coming.

This is quite the switching of roles. My mother has spent most of my life worrying about my health. And now more than ever before I really get what that worry is like. I’ve lost so much sleep this weekend to my worries. I never really managed to relax. In fact last night my Partner in Crime, and I watched Captain America for the first time, but I’m buggered if I can remember very much of it. Because while I was watching it I kept worrying about my mom.

I guess that this post is really an angsting session. A way to let out at least a little of the stress I’m feeling before I implode. ‘Cause I’m just really worried about my mom.

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