Demonizing The Desire To Be Equal

Adam demanded that his first wife play a subservient role to him and when she declined to do so (and left) Adam asked for a new wife. He wanted a partner who would be an improvement upon his first in that she would be subservient to him. His wish was granted and Eve came into being.

His first wife, Lilith goes on to be portrayed as a demon, vilified as a woman who failed to know and keep her place. She becomes the thing of nightmares, her stubbornness and pride in being equal costs her everything. She becomes a figure who spends eternity eating children, those who are the very sign of hope, innocence and that which is good in life.

One can argue that Adam had no right to insist that Lilith become subservient to him as they were created equally and therefore both subservient to God. One could also argue that because of Lilith’s own stubbornness she brought upon her downfall. Ultimately the story of Adam and Lilith is a story of greed, both parties equally desirous of ultimate power to the point of being unable to comprise with each other.

The need to cast off the yoke of oppression or to fight from having the yoke of oppression placed upon oneself is no less of a struggle these days than at any time in history. Be it the oppression of women, the oppression of religious groups, oppression based on social class or race, these struggles play out every day somewhere around the world.

While modern woman may not be asked to eat children, she is no less vilified for seeking the same power as her male counter-parts. The stories we tell may be different, but she never comes out looking good and always seems to be justified as in the wrong. Change the gender for someone of a different race, religious view or such and the story is all the same. We tell these stories to explain why it is okay to do what we do to each other. We focus on our differences, ignoring those myriads of similarities and justify our behavior accordingly.

If I were asked to make the sacrifice as Lilith, that of freedom to be equal versus being lesser but able to stay “golden” I fear I too would choose to be a vilified. Because like Lilith, I’d struggle to understand why I should be less than another who is not so different from myself. Frankly I’d struggle with that even if said other individual was that different, because am I not worth the same as any other person? In my market regardless of color, race, gender or religion we all have the same value unless we do something as an individual to alter it. Yet as I go out in this world I must remind myself not everything carries the same set of measuring scales that I use, not everyone values the individual and rather may find the collective more important. And to these people I too am a demon.

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Never Anticipated This

I never anticipated that where I was born, what I did for a living or who I professionally associated with could result in me being unable to freely travel to countries.  Now I can’t change where I come from.  And I will be hanged if I will let anyone tell me who I can and cannot associate with.  Same goes for what I do for a living and I’m fully aware that what I do is something that a lot of people feel is unnecessary.

Perhaps if I had been born in a different country I wouldn’t feel so strongly attached to having had the freedom to choose my career. I may not even feel so strongly about keeping my career, but I was born in a country where the government did not dictate my choices.  And I was blessed to grow up with parents who didn’t tell me I couldn’t do things because of my gender or such.

I cherish my freedom to travel, to speak and to associate.  I also cherish the position I’m in that allows me to help others, to be a voice of the voiceless.  And now it is rather possible that I will have to consider which of these I value the most.  Or perhaps it’s a case of which of these is the best to continue to use for now so I can hold onto the others for when I need them.  At the same time I have to consider if it is possible that I may not be able to ever regain back that which others which to take from me.  And this time I know I’m not the only person in this situation.

What’s On Your Windowsill or Decorating With Dinos

My grandmother used to keep plants and candles on her windowsills. My mother kept seedlings on hers until they were ready to be planted in the ground.  A few of the much orders ladies I knew growing up kept powder on their windowsills, to keep the haints away.  These ladies always had yellow trim on their windows to ward off the haints as well.

But me, I apparently seek the not to grow life nor to ward off those who have passed over.  You see friends I keep dinosaurs on my windowsills.  I didn’t start out with a plan to keep dinosaurs on my windowsills.  Actually I didn’t plan on keeping anything on my windowsills.  However the four-footed one opted to out her plush dinosaurs on the windowsills she could reach.  Thankfully she only has two, but that’s enough for me.

I’ve  nothing against dinosaurs, plush or whatever.  I just have no need for them on my windowsills, but every day around eight in the morning they are placed on the windowsills to be removed only when it’s time to run around the house with them in your mouth.  Well if you are the four-footed one that is.  I have no more need for carrying dinosaurs in my mouth than I do to have them on my windowsills!

 

A Reminder So We Don’t Go There Again

They told some of us to go to the right, and others from the group were sent to the left. And in the rush to simply get out, and the confusion about what was happening, most of the group compiled with what was being said. The end result was mothers with young children or babies were grouped with the elderly and everyone else, if they appeared to be physically fit, was grouped on the other side of the room.

The man who was standing at the center of the room clapped his hands once and said “see, it is easy when it is confusing. Using confusion, panic and uncertainty will always help you control large groups.” He then asked us to go back to our seats so he could finish telling his story.

Beloved quickly pulled out his phone and typed in a few notes before they dimmed the lights again for the rest of the presentation. And I realized that we had been provided with not just a quick demonstration of what this man had been describing, but also a little view into what we would do in the same set of circumstances. And somehow what you think you would do is not always what you end up doing.

After the presentation we were invited to view pictures that somehow had survived scrapes of books, full books and so on. Most people left shortly after they had entered the room, but Beloved and I stayed, taking time to look at each piece. It wasn’t our first time viewing and hearing stories of those who spent time in the Nazi concentration camps, but it was the first time someone was able to place us into those first moments when the train stopped at the platform and you moved from a dark cattle car into some strange, brightly lit area.

Some people come to these places as a thing to do, or a means of saying they have visited them. For me, it is important that we keep these stories alive least humanity repeats itself. We have a long way to go to get beyond dehumanizing those who we see as “other”. Until we can reach this point, how can we really call ourselves civilized on intelligent?

Hey Watch This Or Maybe Not

Growing up, anytime someone said “hey watch this”, you knew it wouldn’t be pretty. The smart kids never said “hey watch this”, they simply did whatever this was after they had taken into account all the ways things could go wrong. You never heard the shy or quiet kids seek out an audience with those famous words. It was the brave, the ones who may not have thought it all the way through and those who were fearless who used those words. And most times, it ended badly. Scrapped knees, broken bones and such or something else bad happened.

Having that kind of experience to draw from, I was more than a little taken aback when my specialist announced those very words during my last visit. He was reviewing the latest set of reports from the vampire lab so he could compare them to earlier ones. Now I wasn’t sure if he was going to end up with a paper cut or just paper all throughout the room, but just as I had when I was a child, I sat back and waited to see what would happen. He was putting up results, making sure he lined each graph up against the next until he had gone across the entire wall. (That was probably a month worth of results.)

When he had them all taped up on the wall he stepped back to where I was and asked what I saw. I wanted to say paper on the wall, and I suspect he knew that because he asked me to view all those graphs together and tell him what I saw. When I didn’t respond he went back to the graphs, took a pen and traced the line that went all the way across the wall. He also said “Whee!” a few times as his finger traced sudden downward curves. And he ended it by running smack into the cabinet in the corner.

He told me he saw a roller coaster and he wanted me to see that lupus can be, well, complicated the way designing a roller coaster is. I don’t think he meant to run into the cabinet, but that too is part of having a chronic illness isn’t’ it? Those sudden obstacles that trip you up or knock you flat on your back. I had to hide the smile that crossed my face as once again the proof in those words was a less than graceful ending.

I guess in a way he found some fun in my chronic illness and I found some amusement in his ability to prove that no matter how old you get, those words normally result in a bad ending for the person who uttered them.

Guilt As Charged…And Self Accused

A friend of mine, who happens to be catholic, once told me that the underpinning theme in her life was guilt. She blamed it squarely upon her parents and her religion for they had taught her that if she was doing nothing she was guilty of a sin. She should always be busy. If she was complaining she was committing a sin for she should be considering all she had to be thankful for. I can’t say if that’s her religion or her parents, but I can attest that I too carry guilt as one of the underpinning themes in my life.

Someone once told me when you are chronically ill you feel a wide range of emotions because in a way you have to mourn for the self you have lost while you embrace the self that you are. What no one told me was that by being chronically ill, I’d be having guilt along as a side-kick unless I did something about it.

I used to feel guilty about being sick, about needing help. So I tried to not be a burden on other people and just go about being “normal”. The problem with being “normal” is that it required so much precious energy and strength that I was weakening myself too quickly and that allowed lupus to become more active. So then I’d be in worse shape than I was before. And now I have that to feel guilty about because I didn’t take care of myself and made things worse.

I had no idea how the dishes could make me feel so guilty. Not even a huge pile of dishes, just a few cups and plates and some cutlery. Sitting there, waiting to be washed, but I was resting. So they’d wait until someone else came to do them. And I feel guilty about that because of course I was doing nothing other than resting while this other person was out working and had come home to the dishes he had left in the morning.

The sound of the washing machine carries the weight of guilt for me, as does the sounds of timers going off. Because I know that if I hear the washing machine going while I’m resting it means that Beloved is doing more work than he should, just so I can rest. Which wouldn’t be bad, except I spent all day resting and still can’t do anything and he has already put in a full day of work.

Each meal he lovingly prepares for me used to taste of guilt. How can you be so tired, so ill that you cannot even prepare a light meal for a loved one or for yourself? How? It’s called living with a chronic illness. And the list of things that sounded, tasted, felt guilt is huge. You could easily be crushed by this weight if you let it fully settle upon you.

One day while I was trying so hard to be “normal” even though I was very sick, I decided to do some light house work and cook a meal for Beloved. So that he wouldn’t have to work so hard. That was the day I discovered that the washing machine does an incredible job of shrinking clothes and there is no way to scrape eggs up off the floor. Nor is there a way to quickly clean the spill inside the oven. Maybe the guilt managed to get shrunk in the washing machine, maybe it was collected and washed away with the spilled eggs or perhaps it was burnt off with the spill in the oven. But after that day I no longer feel guilt about what I cannot do when I’m physically unable to do it. Because that was the day that I learned Beloved has a very colorful and interesting vocabulary when push comes to shove. I also discovered that he goes an odd shade of purple at times

Chronically Complicated Marching

Time marches on and we kind of march with it. Some people march with amazing flare and style. There are people who can march and juggle at the same time. Others seem to glide along, feet barely touching the ground. If you happen to be like me you tend to march out of step, stopping when you should be going and sometimes getting off the path, but you still march.

Regardless of your marching style, or the length of your march, it all ends the same…in death. When you are young you don’t consider that at the end of this grand adventure known as life comes a stopping point. You march and dance like crazy wanting time to go by faster and faster. And then you hit milestones that show you time is passing as you find your own way to march. At some point though you understand that there is an end to this marching, that there will be a resting point and you begin to contemplate what that rest will be like.

If you have a chronic illness like I do, you may be more aware of the rest point that peers your age are. It comes with the package I guess. Or maybe it’s just the reality of too many hospital visits with overworked and somewhat detached medical professionals. So you start to think about what you want to happen if your march comes to a slowdown while you are in the hospital. There are so many choices from doing everything heroic to just letting things be as they are. There is this thing called a medical directive, or living will to be filled out.

And it hits you, the absurdity of this all. You are in the hospital, getting pumped full of medications and treatments which are designed to help maintain your health, extend your life even. And someone pops into your room with a clipboard and a cheerful voice and tells you that although it’s an uncomfortable topic, they want to know if you have a medical directive. If you don’t, this nice person will proceed to go through the information that basically comes down to, in the event your heart stops beating or you stop breathing do you want: A) to be resuscitated or B) natural termination.

So you are in your hospital bed, maybe being pumped full of poison to keep you alive and you are now asked if you want them to take an measures to save you if something else should go wrong. And you state your answer and if you are like me, you realize you are a bit of a hypocrite. Because killing off your own immune system with toxic poisons is not natural. Nor is it dignified, not really. And yet you choose for your own death to be natural and dignified.

When the march comes to itself final resting point for you, you want to take the rest, on your terms in your own way. And that’s the thing that I struggle with the most as I battle with lupus. Sure right now I’m taking the medications and treatments on my terms, deciding what I will and will not do based on my own risk assessments. But at the end, I want to die on my terms, if that means with medical assistance so be it. But until then, I am, in my own way, asking the medical community to extend my life with this illness. And it’s all absurd, but it’s life. Life with lupus the chronic complication.