The Monsters We Hunt

We all hunt monsters from time to time. If you are a parent you may be hunting those pesky monsters that live under beds and in closets and only come at night. Or perhaps there is monster lurking in the basement or cupboard and it must be found, removed or subdued. Or perhaps you are a grandparent, aunt, uncle, guardian or older sibling who carries out the tasks of hunting the monsters.

If only all of our monsters were this simple to deal with. If only they all hide most of the time and only threatened to come out and scare us. Unfortunately we have real monsters to contend with in this world. Some of the brave folks in law enforcement and such hunt these monsters and put them away to keep the rest of us safe. Sometimes, though, the monsters still are able to hunt and hurt us.

The worst monster I ever encountered upon happened one day when I was looking in the mirror. That’s right, a reflection of myself. The worst monster I ever encountered. Because when I looked in that mirror what I saw was everything that I have ever known to be wrong about me times a million. I saw all my horrible failures and flaws, magnified and repeated to me in a loud and ugly voice.

This, this warped image I have of myself is the monster I hunt on a regular basis. I need to hunt it, to find it and subdue it so that I don’t have to hear it or see it anymore. But I have no interest in killing this monster because after all this monster is a part of me. I must understand this monster in order to learn how to live with it and control it.

In Real Life Acts Of Love

In the movies things omits always work  out.  Fingernails don’t get broken, the most unruly of hair can be turned into something wonderful and amazing, and love conquers all.  But that’s in the movies, and in Hollywood anything can turn out to be a happily ever after.  Heck racial intolerance or religious differences can be overcome with the magical idea of love.  For Hollywood, fairytale so and romance novels all tell us love conquers all.  We just have to find our true love, and we will know when we find it for it shall feel perfect.

Now I’m the owner of a patch of unruly hair so I can attest to the fact that sometimes there ain’t nothing that can be done for unruly hair.  Other times a gallon of hairspray and a pray may make it hold still enough to look decent.  And a broken fingernail can be filed and will somehow grow itself out in time.

And true love in my life, is a man who sings slightly off-key as he struggles to create flavors from back home.  True love, in my books, is a man who doesn’t get his feathers too ruffled when I change my mind and tell him it’s still not right.  And love is a man who puts up with the uncertainty that is part of the package that comes with me.  No questions asked.

Of course that man who done that cooking left me a mess about as wide as the Mississippi herself!  And love is part of cleaning up that massive mess, perhaps not happily so, but cleaning it because love and good intentions is what made that mess in the first place.  And by no means is my life a happily ever after, but it’s sure got a lot of happiness in it.

Oinkella or Waiting For Take-Off

It would seem that pigs can fly after all.  And not just those that board airplanes either.  At least not by judging  by the latest addition to the four-footed one’s treasures.  You see she has acquired a pig that squeaks and has wings.  The wings tend to make a scrunching sound when you wiggle them. And the tail is long with a knot at the end.  So fine not a real pig but still…a flying pig none the less.

Oinkella, as we’ve taken to calling the new toy, must be everywhere the four-footed one happens to be. Which means Oinkella, who doesn’t get around on her own, must always be in line of sight or we have a bark feast.  To be honest I’m currently looking for ear plugs because we’ve had a few wee crisis moments already.

The first crisis moment happened when the four-footed one was getting ready to settle down for the night.  You see someone forgot to bring Oinkella to bed so much barking ensued.  And continued to ensue until someone, human mind you, went and rescued Oinkellla.

We had a somewhat repeat performance in the morning when someone was eating her breakfast and discovered that Oinkella had stayed behind.  Human to the rescue again.  Although in all honesty this was more to stop the barking than to save Oinkella.

I’m waiting for Oinkella to get the hang on flying, or walking, soon because I’m getting a bit annoyed at having to fetch her all the time.

A Funny Thing Happend On My Journey With Lupus

There is a funny thing that happens when you are diagnosed with a chronic, invisible illness. It’s funny, but not in the “ha ha” sense of things. Rather it’s funny in the sense of odd, peculiar and unusual. And what is this funny thing you might ask? It’s called the cloak of invisibility with a shield of a visible label. I know, sort of defeats the purpose doesn’t it?

Let me explain…once you have a diagnosis in the medical world, you end up with a label and are forever after referred to as that label. I have become “lupus patient”. Let me share with you…on my last visit to the hospital I was admitted as “lupus patient Sally Sue”. I wasn’t “Sally Sue who happens to have lupus”. I was up front and center a lupus patient, name coming after everything else. When this happens enough times you end up in a strange situation where you find yourself identifying and maybe even referring to yourself in that way. You become your label. And what a powerfully visible label it is!

When I have medical appointments, I am “lupus patient Sally Sue” who also must be deaf or perhaps not worthy of some medical specialists time. They talk into records (for transcribing later on), they talk at me, but never to me. After all I am “lupus patient” first and foremost. As if I have become something of a case number.

At the same time as all of this is happening, there is a huge chance that you are trying to be “normal” for loved ones, friends and whoever else you deal with. You don’t look sick; you don’t want people to see you as a burned or such so you simply pretend things are fine. You become creative though, in your invisibility cloak. You can’t keep appointments, you miss important outings, but you get creative with the reasons why you weren’t there. “Oh that was on Tuesday, sorry I had (insert whatever excuse avoiding the fact you were too tired, too sick etc.) suddenly come up. Next time I will make it.” You smile of course and are so sincere when you say these words.

Keep in mind if you say it enough times you soon won’t be invited anymore because let’s face it if someone keeps turning down invitations or has to leave early (insert other items here)why bother continuing to invite them? So you soon find yourself off of guest lists, off of invitations and such. You become the person in the room who no one really sees any more.

Of course there is a pretty good chance that you won’t want someone to see you, not the real you anyway. I’m talking about the you that feel ready to burst apart into a million decaying or damaged pieces. The you that, if you looked how you felt, would be locked up on charges of frightening people. I frequently feel as though I’m something out of a Tim Burton movie, or perhaps Beetlejuice. And now and then I want to shout at people, remind them I am still here, but not if it is as “lupus patient”.

Perfectly Imperfect or Who Put Lipstick On The Pig And Can S/he Be Stopped

Some days you just know are going to be a bit more of a handful right from the start. Not every day can be perfect. Some days the only shining example is that of the glaring imperfections in the day. Now some people have this cute little bit of magic they do where they can find the humor or the opportunity within those glaring imperfections.

They call them opportunities for improvements. I call that putting lipstick on a pig, but hey I get the idea. Except have you ever put lipstick on a pig? For the record I’ve never done it and I would never do it, but at the end of the adventure you’d still have a pig, just one wearing lipstick. So these opportunities for improvements are still pointing out the imperfections that need fixing, it’s just a fancy way of saying it.

Other people have these magical skills that have them prepared to deal with the fact that nothing in life is perfect, that everything needs improving and that into every life must fall some rain. (For the record for some of these people the definition of “some rain” is actually a deluge.) I mean if you know it’s going to be wet and windy or just dreary you can prepare for it. I wonder, though, if these people ever have the idea of hope in their lives. Do they hope for the perfect moments, or are they content for it to be less than all the time.

And now back to the story…this morning I woke up to a day that started with hope and a touch of perfection to it. I mean good coffee (yes I know I may have a crazy addiction to the stuff), plenty of time to do what needed doing, no insane traffic snarls on the way to work (this includes no crazy livestock roaming the roads which is on occasion a major drama) and somewhat decent weather. (I mean it can always be better weather here, but I’m not really going to complain about that.) And the first bit at work was good too.

It was part way through my work morning that the wheels fell off and we headed from a good day to the day of utter and complete imperfections. Imperfections which ranged from technical failures (such as a system failing when I was using it for demonstrations) to people failures (people deciding to do things without first having all the information) and let’s not forget everything else in between those two items as well. Oh and we ran out of coffee too. So that was the icing on the cake that slide on the floor, out the door and into the mud. Where it was eaten. Eaten by a pig, that happened to be wearing lipstick.

But of course there is a bit of perfection even in this day of utter imperfections, frustrations and what have you. Because you see, the perfection was the fact that everything was so wholly imperfect that in a way, it all lined up to a perfect storm of “let’s not do this again”. So I guess in a way it was a somewhat balanced day.

Disney, Happiness and Me

Someone once said that Disneyland was the happiest place on earth. So happy in fact that the only tears you will find are of joy and excitement. Unless you actually start to look closely at things, there are tears of frustration, boredom, overstimulation and anger just to name a few. I suspect there are tears of loneliness in Disneyland as well.

I’ve been there before, this place of magical happiness; this place of carefree fun and pure joy. And I’ve never felt a part of any of it. I was never able to capture the magic of the place nor even hang on to a shred of that which the people I was with managed to have. No matter how hard I tried, it slipped through my fingers, and perhaps the harder I tried the more it slipped through.

Disneyland is not a place to visit when you are intense pain. Nor is it a place to visit when you are struggling to move or stand. Sure it is, I’ve been assured, wheelchair friendly and all that wonderful stuff. But when you are trying to hide your disability, or when you have an invisible disability sometimes things aren’t that easy. Disneyland isn’t super wonderful to visit when you have to minimize your sun exposure because rides in the rain just lack a little something.

None of this is Disney’s fault. None of it is really the fault of lupus either. I know, that sounds odd doesn’t it? But it isn’t. It’s really my own failings at finding a way to summon up the joy or grasp the magic while in so much pain that standing in line seems like torture. When moving in a crowded area means being bumped which means sore joints will be made more sore. When it means plastering on a much larger than usually plastered on forced smile just to ensure I’m not ruining anyone else’s time. And it means realizing again that there are things that set us apart as if an invisible wall exists, whether I’m the one who built the wall or not is irrelevant; the wall is there.

So for me Disney is the perfect place of loneliness. It is one of the few places I’ve managed to visit and feel utterly alone and isolated while being fully surrounded by people having the time of their lives.

Too Many or Am I Selfish

I’ve been trying to wrap my head around the whole idea of multiple wives or husbands as the case may be. In other words, I’m trying to sort out polygamy and how it would work. I know it exists and there are issues around it depending upon what people believe, but that’s not what has me confused.

What has me confused how it all works logistically. I suspect there are schedules and time tables and everyone just somehow all pulls together to make things all happen. And that’s where I get lost. What if you don’t want to stick to the schedule? What if something comes up? And why does everyone have to pull together all the time? It would drive me insane.

If you were the husband with multiple wives, or the wife with multiple husbands, I wonder how you handle all the emotions and behaviors that are always simmering just at the surface. And these things tend to feed off one another which just creates more of a whirlwind. So why do it? Why bother with the whole sharing of a spouse (surely there are issues alone with that given human nature) and trying to get everyone to get along when that’s not really human nature?

I cannot imagine sharing Beloved with others in that sense. Not because I need him with me all the time, that would be funny given we live in two different countries part of the time. I just cannot imagine having only part of a person rather than the whole of that person. I like knowing all of Beloved’s darkest secrets, his deepest thoughts and those things that make him stay up in the middle of night. If he were to unburden himself with another in the same way I suspect some of the bonds we have, that which makes us a couple would be less in place.

I don’t care what anyone else says either about it not being a case of jealousy because there is no way that you cannot be wondering what the other spouse of the same gender as yourself has/does that you do not have/do. Human nature again. So you see, I just can’t wrap my head around the benefits of this type of a relationship. Of course I struggle to wrap my head around the benefits of a traditional marriage with traditional vows too so…

Coffee Tears

There is no use crying over spilt milk.  Spilt coffee is another story though.  Especially when it’s the last bit of coffee in the house and you were really looking forward to that cup of deliciousness of the coffee beings.  Then crying makes all the sense in the world.  As in it simply cannot be helped.  Or that’s my story.

But in all good stories, no matter how steep the hill is that you need to climb, when you are crying over spilt coffee there is a hero who comes along and fixes it.  Usually just in the nick of time.  As in just before the tears threaten to become an indoor lake in your kitchen.  While I may be a fan of water features, I can’t say that I want an indoor salt lake in my kitchen.

The best part about my hero today is that I got a fresh cup of coffee without having to wait for it to be made.  I got freshly made coffee and a supply of coffee waiting to be made when I need it.  And yes need is the correct word because at this point in my life I need coffee.  Not always, but frequently.  If I had coffee always I’d be crying tears of coffee.  Potentially salty coffee which might not be so tasty.  And even if it isn’t salty, it might not be good because, well, recycled coffee that my body has already used.  Umm thanks, but not thanks.

Here’s Mud In Your…House

I keep waiting for the end of the muddy season.  You know, when the dog can head outside and come back without spreading the mud all throughout the house.  Not that she cares if it’s the muddy season, the cold season or the sunny season.  She is able to find delight in each and every one in its own way.

I, on the other hand, have yet to master the skill of finding joy in each and every part of the season.  The muddying season means endlessly cleaning floors and he parts of he walls she can reach.  The cold season means she can traipse though the house dragging her cold weather gear everywhere.  In the sunny season she brings in dead grass, insects and dirt.

But regardless of the season, she finds joy in each moment.  When its muddy outside she finds puddles to play in, others to splash around in and comes back soaked, soggy and exhausted,  after cleaning her up she’s ready for cuddle to warm up and settle down for a long sleep.

In the cold weather she will romp around, fast, chasing her own breath in the air.  She will come back in, cold and cuddly well ready to curl up in arms or near the fire.  And to make up for the shorter times during the cold that she spends long hours out in he sunny, warm weather.  During the sunny days no insect is safe from exploration, which in her way means to be tasted.

And while I’m not so interested in tasting the insects, I do which to find the joy in each season the way she does.  Just once my feet dry and the mud has been removed off the walls!

Worry Less Laugh More

I used to worry about the future a fair amount.  I worried about exams; what to wear; doing the right thing to impress the right people; I worried about all sorts of things.  I mean I worried about what to make the next day.  And then lupus came along and taught me a valuable less; worrying just wastes time and energy.

I still do worry now and then, but after these last few flares I’ve gotten better at not spending too much time worrying.  Because you never know what’s going happen and worrying about what may or may not happen is not like having a crystal ball.  It just creates unnecessary stress and such.

The latest flare had a specialist concerned I was going into organ failure.  I wasn’t, exactly, but I’m a hair closer to that now.  The specialist asked me if I had people I needed to get in touch with, if my affairs were in order etc.  I laughed.  Not because I laugh in the face of death, for I’m not there yet.  Instead I laughed because no matter how much time I have my affairs will never be in order.  It’s not possible.

I did phone Beloved to tell him that things have changed, but not to worry too much.  Things are under control sort of.  He came, listened to the doctor, and started to go into wry mode and the asked for a second opinion.  Which helped settle things down a bit.  And instead we have decided, once again, to enjoy the moments we have.  Living as much in the moment as we can and not worrying too much about tomorrow and what it brings. Because that just cuts into our time together so forgive us if it seems we are laughing inappropriately.