I hate having to check myself before I do anything.  It feels oppressive, unfair and wrong.  And yet I do.   Check myself.  I check myself before I comment on how I feel or mention if I’m doing something “normal”, or potential energy consuming.  There is no law, at least not one on the books, that says I need to do this.  But I do.  Because I have lupus.

Trying to get people to understand lupus can feel oppressive or unfair.  Because it takes up precious energy and uses emotions which take up energy and I have lupus.  So it’s oppressive in some way.  But I talk about it, I try to help people understand.  And I feel the weight of responsibility, which can be oppressed.

Trying to balance hanging out with friends, having a vacation and living with lupus can feel oppressive.  But I’m not dead.  I have a job, a life, love and such.  And now and then I feel almost like who I used to be.  So I do things I used to do.  And then feel guilty about this because I have lupus.  And that guilt is very oppressive.  I’m not sure if this again is a self imposed law, but I can’t seem to shake it.  I have guilt because I can do things I know other lupus patients can’t.  I have guilt because just when people sort of understand my lupus, I do something so normal that it’s like I’m saying my lupus isn’t that bad.  I have guilt because friends and loved ones have to deal with the rapid change of lupus and our plans.  And it’s all so oppressive and unfair.

So I check myself.  I edit my actions and words.  I edit my dreams and my choices and I feel the oppression of all of this as well as the weight of being sick.  It’s unfair to those in my life,because I am never able to be completely free.  It’s wrong because I want to be transparent, but I don’t want to create more worry.  So I check myself.  And it feels oppressive and I hate myself for knowing what I’m doing and still doing it.  And yes, I just checked myself again before sending this off.

Goodness Me

His voice drifted lightly to where I was sitting. Melodic poetry swirled around me from the kitchen, where he was singing as he cooked.  Van Morrison, I suspected.  It was, after all, one of those days.  A day full of cooking and music while I sat uselessly in a chair trying to forget about harsh and ugly words.  Those which had flown so easily from my lips to lash at him.

And now he was in the kitchen, singing what I was certain was Van Morrison’s songs while he prepared what sounded like enough food to last at least a month.  Van, after all, was skilled at putting poetry to music and Beloved was nothing if not a lover of poetry and music. He also happens to not be a bad signer, having spent time with choirs in a previous life.  Me, I can’t carry a tune in a bucket and I have been offered money to not sing.

The four-footed one happens to be a lover of music, well at least fond of music.  She is a lover of food and will endure even my version of singing if it means a scrap of food might come her way.  She is also no fool, she could sense this mood that had drifted down upon me sometime while I slept and thus had given me a wide berth all day long.  She and Beloved are no fools, opting to provide me with my own space and ignoring my mood.

It is hard, these times, when I realize just how little I energy or strength to do anything.  It is hard to allow that lupus has found an upper hand again and now I must sit and rest, waiting until I had found the way through this latest downturn.  While Beloved had to manage the house, the dog, his needs and mine all on his own.  Not that he complains, not ever, which makes it even worse somehow. As though he is above this, saintly next to my dark sinned filled wretched soul.

The harsh, ugly words had been hurled his way after he told me to get some rest when he brought me a book to read, a knowing smile just about there on his lips. I had wanted to throw that book at him.  Truthfully I wanted him to have to sit in the chair, rest while the world went on all around him.  I’d not ask him to sit like that for long, just enough for him to see what it was like for me as fun went on where he was not.  (Not that my singing would entice even the most deaf of demons to come into where I was, but it  you get the idea.)

I knew, as the last lines of a song hung gently in the air, that soon he’d come to see if I wanted help heading up to bed. As if I were a small child who needed to be told to go to bed, or worse needed to be carried to bed .   Oh yes, this then is lupus at its worst. While not the disease, no the disease can be so much worse. Rather this is me at my worst, Beloved and the four-footed one being targets of my rage since I cannot throw a book or toss harsh words at lupus in any way that causes any damage.



Tasting And Testing

One of my students asked me what justice tastes like. It’s an interesting question, and one I’m not qualified to answer any more than I could comment on what a world of truth tastes like.

I know truth and justice in small-scale things, things close to me personally, but to be able to tell someone else? I haven’t the words. The same way that words escape me to say what the taste of freedom really is.

I have known people who say they know what freedom tastes like, with some describing it as a warm spring rain, others as the tang on an ocean breeze. The best description I’ve ever heard for describing how freedom tastes is when someone told me it tastes how a freshly mown lawn smells on a not too hot day.

I’ve heard that justice tastes sweet, but I’ve also heard the same about revenge. I’m pretty certain that given they are two very different concepts, they must taste of different types of sweetness.

The perception of justice, freedom and truth also vary from person to person so I suspect that would alter how one describes the taste of each.

As a free person/woman where I’ve not had to deal with personal injustices, rather those on a more social/community level, I’ve not had to worry about the taste of injustice and thus what justice would also taste like. And there is no way that I could know truly what justice tastes like until I’ve tasted the flavor of injustice within my own life. And the injustices I know are not just mine to personally taste.

The problem with large-scale injustices is that when they aren’t truly your own at a personal level you can do a disservice to trying to find the way towards justice for those who seek it and deserve it. It’s the difference between eating an authentic dish prepared locally by a local person versus sampling it in a restaurant designed to cater to a more broad reaching group which means the palates are different.

The first time I tasted pad Thai in it’s local form I remember being surprised at the brightness of the flavors. Not to mention the lack of the weirdly orange-ish sauce that normally comes with it. I also had no clue that medium chili meant hot on my scale. You have to experience it personally to know how it tastes, and even then it is based on your own perception.

The fact that there are people in this world who hunger for a taste, only a taste mind you, of justice is heart-breaking. The fact that there are people in this world who hunger for the taste of truth, rather than the taste of lies and misdirection is also heart-breaking. To ask that these people be provided meals full of justice and truth is not even excess, not when so many of us have that daily for meals and snacks. We have forgotten the taste of them simply because we have taken them for granted and no longer savor them on our tongues.

Friends, Fear and Finding Happy Medium

I made a new friend today.  The kind of friend that really likes me, as in my friend just wouldn’t leave me alone.  No matter how hard I tried to shake free, my friend stayed right there with me.

I know I shouldn’t complain or be trying to get free from my friend.  I mean some people really work to get a friend.  But this new friend isn’t human.  Okay sure some of you will point out I have the dog who is more or less human (yep our fault) and is a friend.  And this is true.  Okay, but a wasp?  As a friend?  Who brings other friends to just hang out, about, around me?  I can’t handle a friend like that.

Now the wasp may have the best of intentions.  For all I know the whole “gang” may be a peace envoy.  And the issue then isn’t with the wasp but rather with me.  My inability to see past those sleek, hard, black and yellow stripped bodies with sharp pointy objects on their behinds.  Let’s call it what it is…fear and prejudice.

I’m scared of them.  And I have a prejudice against flying animals at can repeatedly sting me, which is like ouch.  It’s worse that when they sting it’s not just a sting, it’s an injection of unpleasant substance.  Why can’t these creatures have a sting that feels like a tickle and if they must inject substance into our bodies why can’t they inject pleasantness instead?

Sure I can marvel at how fast they can fly, or great a distance they can cover with their gossamer wings.  I can even sit back in awe at their keen observation and focus.  But I don’t.  Because they scare me.  And because I’ve got a thing against flying needles if you will.

Could I work on this?  Perhaps, but fear of them works for me and provides Beloved with some excellent comic relief.  I mean I will squeal and squirm, contort and convulsive, twitch and tear up and this, folks, is when they are just near me.  They aren’t landing on me, and frankly how can they as I flail around like a headless chicken?  And that’s my strategy, until something doesn’t work.  Then I will find a new one.  Or barricade myself! 😉


Eyes rolled, mummers filled the air and scowls marked some faces. Yes we were co ing up to that precious time of hiring learning. You know the time, when papers are due and final exams are just about to start.

I could almost hear the eyes rolling in some students from where I was at the front of the room. It wasn’t that long ago that I was sitting back there, willing my eyes not to roll around.

I wanted to tell them that soon none of these pressures would be there as most would not continue on with their education beyond a bachelor’s degrees. I wanted to tell them the pressures of the real world would seem a million times worse than the papers and the exams. At least here they stood a chance of knowing exactly what to expect. Their performance expectations were ease to understand and with effort for some, achieve.

The real world, beyond the learning in these halls, doesn’t work that way, I wanted to caution. The rules change as do the expectations. Often times you have no rubric to judge with and instead you work hoping you are achieving and exceeding.

Academia allows you to go to class in your pajamas, walk around with uncombed hair and such. Try getting away with that in the real world, I thought. And just because you have things due, you can’t skip work the way you skip my class, I silently said to them.

What I said out loud was when things were due and the composition of their final exam. I ignored their wails and moans, I had been there and gone beyond. I wondered of they realized that none of it was new to their professors. I also wondered if they thought by doing so, we’d have a change of heart, just for them.

I wondered if they realized the whims of academia was nothing compared to the whims of the real world. Unless of course, you lived and breathed in academia. Then it was and is the real world and, well,my he pressures and expectations are a bit different. But when you live and work in it, the pressures are heavy, you just don’t mind them because it’s a labor of love.