Space To Be With Lupus

My mother used to tell me that if you can’t anything nice about something or someone, you shouldn’t say anything at all. My father used to say that if you can’t behave properly in public, you shouldn’t be in public until you get a handle on your behavior.

My friends told me that there is no reason to be angry or to bounce off the walls. Beloved told me that it’s okay to be angry and to bounce off the walls when you have to deal with the ghosts of a dream from way back. He would also tell me that the pain sort of disappears and everything is kind of like a scene rather than the whole earth shattering life.

The thing is, I can’t always say nice things about lupus. Oh I’ve tried. And I’ve tried to found the positives that lupus has brought into my life, but sometimes I just can’t find the nice words. And I can’t behave properly because I’m tired of giving so much of myself or my dreams away.

Sometimes all I can do is look for the freedom and the space to be angry and loved. To bounce off the walls and to settle into a comfortable spot. And sometimes that seems impossible to find. Because friends don’t want to see you hurt or upset all the time. They want you happy and full of life.

No one wants to hear the tears of lost dreams, or the ghost of the girl I once was. Except Beloved. He listens. Sometimes he bounces off the walls with me. Sometimes he tilts at the windmills and other times he just finds a place to sink down into and hold me while I try to forget about that ghost of a girl.


Dreaming A Little Dream

I have a dream, it’s more wishful thinking and wild hope than a dream, but it is mine nonetheless.  No this isn’t a brilliant dream like freedom or equality or world peace.  Sure I have those dreams too, but they require so much help from dream I have requires one simple thing from one being.  You see I dream that one day, soon, the four-footed one will cease to track muddy paw prints all throuh the house.

Sure sure I know that the damp season is not always going to result in mud.  But right now, after removing muddy prints several times today, this is my dream.  Is it too much to ask for?  It would seem to.  I put it up there with world peace and such.

Yes I know, some of you will point out the real issue has nothing to do with mud.  Oh no, I understand completely what you are talking about friends.  Yes I know, her listening skills require work.  And I know she requires steady training, but for now can I please just dream of no more muddy paw prints in my house?

And yes I do understand that mud is something she finds simply irresistible.  And I am not wanting to deny her fun, honestly none of this is on my mind.  I just need a break from the muddy paw prints all over my floors.  For the record we do have cloths and such to wipe said muddy feet before mud is tracked all through the house.  However someone refuses to wipe her paws these days.  It’s a phase I’ve been told, but another someone needs to grow out of the phase of letting the four-footed one do whatever she wants.

Yes see I have a dream friends.  A dream that one day Beloved will stop giving into the four-footed one.  But that isn’t going to happen because she simply has to wag her tail, or give him puppy dog eyes and he basically is powerless to holding his firm stance with her.  And she knows this.  So instead I dream of no more muddy paws on my floors.

In The Way

I listened to a little boy explain to his dad how when the boy grew up he was going to be a vampire,but the good kind not the bad kind. I had no idea that there were types of vampires until today. And I forgot that when I was young, I could grow up to be anything I wanted too. Except I didn’t. Not really. I seem to fcall wanting to be able to fly. And never work. Instead I was going to have a place for all the animals to come and be my friend. Yes, all of the animals. Instead this weird thing happened. I grew up. Life happened, so did school and acareer and somewhere along the lines, Beloved happened. I have had animals in my life, to be sure I have. But not all of the animals. Nope, not all. And sure I love my job. Most of the time. But it’s not the same as a day stretching endlessly to be filled with whatever catches your fancy. It gets in the way sometimes. As for flying? Yes well only in airplanes, I’m afraid. So to that young man explaining how he was going to be a vampire when he grew up, I say go for it. But know life gets in the way.

The Flip Of The Dream

There is something to be said about creating one’s own hours and having the ability to do what one wishes from wherever one chooses to be.  A dream to be sure, and yet some folks have it and live it.  And I’m not going to lie, there are days when I wish more than anything that I had that all set up for myself.

I don’t.  At least not yet.  Perhaps not ever, but I may be trying it on account of life with lupus sort of makes adhering to schedules a bit more fun than I can handle at times. The ability to set my own hours and days would be a bit of heaven really rather than having to drag myself to work on the days when it all seems too much.

And working from home, bed, or the hospital if it comes to that, would make things so much more straight forward.  No need for awkward explanations or dancing around a subject.  Just me doing what I can when I can.  Not that this is normal or typical, but there are times when you need to do what you can.  And if you choose to work alone, the need to keep steady income as well other things such as insurance become rather important.

And that’s the catch with these things, there’s always, always, a flip side.

Fruits Of Passion

When I turned eighteen, thought I would have all the answers and do what I was passionate about.  When I turned twenty-one I realized I didn’t have all the answers, but I was much closers to knowing what all I needed did my passions would be set.

When I turned twenty-five, I knew I was on the path to having many things as I kept my passions and dreams at the fore front of things. I was so certainly that hanging onto what I thought were my passions and  dreams wold give me everything I wanted.    What I was holding onto were my parents ideas of passions and dreams.  And what felt like it was burning bright was really just an idea repeated over a million times.

When I turned thirty I decided to explore what I really wanted and how to get it.  A bit like getting to know myself all over again.  And I realized I didn’t want of feel the same things my parents once held.  I was carrying the ghosts of my parents’ dreams and passions.

When I turned thirty-five, I understood what it was to try to grasp your passions and feel the white-hot glow of something so brilliant you cannot even describe it.

Now that I’m older I get that the idea isn’t to necessarily achieve all of this for stability.  After all stability can be overrated and is only what you make of it.  The trick is to always grasp for and try to reach these dreams and passions, on matter here they take you.  And no doubt when I turn seventy-five, if I reach that number, I will have a different idea of what a passion is

Lupus Ramblings Of Sorts

I came home in the light of the morning; the house was still dark and still. I let myself in, slipping through the door silently so as not to draw attention to my return. The four-footed can be a light sleeper at times, so I did not want to give her reason to stir.

Except as I turned to head into the kitchen there she sat. Just looking at me. No barks, no whining nothing. Just the stare that said everything. From the back corner, Beloved got up out a chair and said, “well then, that’s that”.

Yes I guess it was that and in the that, there was a ton of unsaid words. Hurt would hide between the silence of the words, waiting to exhale without drawing attention to itself. The hurt would stand in for the unsaid accusations and the incredible guilt. Because I missed the transportation back. Not on purpose, not really. Just a little. Maybe.

I didn’t plan to be gone that long, but then I didn’t understand how randomly the transportation would come to bring me home. I didn’t think they’d wait up for me. And of course they did. And all that was left unsaid spoke in volumes enough to shake me to my core. I wanted to shout at them, to tell them that I don’t know when or how I’d live my life right, but I was going to enjoy it as much as I could while I could.

And yet neither of them deserved that. They waited, worried, fretted and stressed. While I, well, I stayed out and played a bit. Ignoring my health, my rest, and yes them.  Because a chronic illness can mess up more than just some of the stuff you thought you’d have as a future.

Silly Me, Still Learning

When I was younger I remember thinking there would come a day when I would no longer be carrying books around with me in a backpack.  I also remember thinking here would be a day when I would be finished with classrooms.  Ha!  I still carry books in a backpack and am in a classroom most days.  Silly me!

I’m not sure when the change happened, but now I cannot imagine not carrying around my books or bopping in and out of classrooms.  Although I confess that I struggle when I’m on the other side of the desk these days.  And yet, I still sign up for classes and continue to be a student.  Because there is always something to learn. I just tend to do my learning online these days.

I’m now wondering if there will come a time when I cannot carry my books with me  because they are too heavy or I am too frail.  I know there will come a day when I won’t be in a classroom all the time.  I’m okay with that.  And if I really need to be in a classroom I can always sign up for classes that require me to attend them in a classroom.   Who knows, I may come back around and enjoy it!