Merging Two To One, But One And One Isn’t Two

The email politely invited me to join Beloved on a trip this summer. A trip that would have Beloved meeting a prominent person. It isn’t the first invitation I have had for such a trip or even such a meeting. I have, since being with Beloved, found myself at dinner parties, galas, dances and such where there are far more prominent people that I need to know. I may have become a bit jaded by this as it doesn’t actually impress me all that much.

When I phoned Beloved and explained to him that I was thinking of declining, a close friend who was visiting made such a loud gasp that surely half the universe must have heard or felt the effects of it. She had seen the name of the person I would be meeting, and she could not fathom turning down a once in a lifetime type of meeting with such a figure. Beloved wasn’t surprised by my response, he is used to me declining things due to health and, well, I reckon my own independence.

He suggested, in his gentle way, that I should not respond to the invitation yet, to sit with it and think upon both attending versus declining such a meeting. This too is not new for Beloved always makes these suggestions when I am faced with the fact that being in a relationship with Beloved has a very heavy dose of interacting and meeting prominent people. I knew this aspect of his life when we first were together. But it was his life and I was free to have my own life.

Beloved finds it charming that after all these years, these invitations and such rankle me. I rail against the idea that I’m property or something to be brought along because I must be occupied in some way. I know that isn’t really what is happening and it’s a nice thing to be invited along and so on and so forth. But there is a part of me that digs in my heels and points out that it is his life, his professional choices that have this aspect to things. It isn’t my choosing or my life.

I do not ever insist that he come along with me on any of the things that I do for my professional life or even for the advocacy work I do. Those are part of the make up of my life. Yes Beloved and I have a life together, but we are also two separate people with different interests, needs and passions to fill. Sometimes I think people, especially people Beloved spends time with, forget this wee aspect.

And now if you will excuse me, I need to save the universe from another incredible gash while I sort out how I shall politely decline this latest honor.


The Dirty Bits

Beloved, not being from North America struggles sometimes to understand why certain things are held onto as near and dear to the heart and other things are ignored. Such as the need to own one’s own piece of property and while ignoring how one can work oneself to death just to have the money to acquire land. He finds it amusing that people will put work before everything else to get the money for a down payment on land and then continue to work like crazy to make all the payments.

He grew up knowing that he wouldn’t ever really afford land. A small flat perhaps, but not a single-family dwelling unit that stands alone. Not one with a white picket fence and 2.5 cars in garage. So he didn’t spend his early adult years working three jobs for a down payment on something he would forever more be a slave to.

Then he came here and realized it was the thing to do. Own a house, own a piece of land. And he watched people he knew work insane numbers of hours at the cost of time spent with loved ones just so they could afford a piece of dirt. Dirt that ultimately does not belong to you because when you die, move or what have you the dirt can be sold to someone else. When he was first here he said that land doesn’t enrich anyone’s life.

And then we bought a small house. Very small. Too small really. Because it was cute and we liked bumping into each other in the hallway. (That got old, but we love the house so there is that issue still there.) And suddenly this man who claimed land does not enrich people’s lives is spouting all sorts of stuff about the need to feel the earth on one’s hands to be truly fulfilled. The man who claimed he did not need property now not only needs property, but feels a need to put his stamp all over it.

Wait until we have to move and say goodbye to our wee bit of land. What will he do then? Will he revert back to the comments about how land has caused nothing but damage, wars and strife or will he still feel the same? I wonder if he will settle for a flower box of dirt to put his hands in!

To Do Or Not To Do That Is The Question At Hand

I’m not a huge list person.  I have an informal list of things I’m working on or doing, but it’s a loose list.  It isn’t written down, just what’s in my head, but if it were to be written down it would be in pencil with almost no pressure put on it.  And the paper it would be written on would be a tiny scrap of something, you know the kind that’s just perfect for a piece of chewed gum to fit into.

This morning I woke up and decided I had maybe three things I would consider doing.  I got on with my morning routine and then suddenly I was all out of energy.  And I felt, well, very unwell.  So I got ride of my list and opted to get done what absolutely needed doing. accepting that the rest could wait.  For another day.  Or later on if for some reason lupus decided to cooperate.  (Wishful thinking for the most part.)

Now in the past, I would have considered this all to be a failure.  Failure to get the few things accomplished I had planned on getting accomplished.  Settling to get done the one thing I absolutely had to get done would, in the past be a sign of giving in, almost a weakness.  But that was the past.

I’ve learned that if I don’t heed these warnings there will be many more days where things just won’t be gotten to for a long time.  Some things will have to be forgotten at this rate.  And at that point the failures are bigger.  Big enough to result in barely getting out of bed or managing to take care of myself.  Big enough to result in unwanted, but exceedingly necessary trips to the hospital.  So yeah that kind of failure.

So today when that sudden exhaustion and other feelings hit me, I just did what needed doing and curled up with the four-footed one.  We watched mindless shows and napped.   We did not worry about what we failed to get done.  Instead we celebrated the success of holding lupus to a specific line.  That line is minimal interruption in my life.  One day is minimal versus a week or so in the hospital.  And this, my friends, is why I don’t worry too much about my t0-do lists.

Not After You

There was no fate worse than being the person last picked on a team when I was in elementary school.  Death, in fact, would be better than being the last person picked.  If you happened to be competitive in any way, but not very good at the activity being set up, you would want to ensure not only that you weren’t the last person picked, but that so-and-so was picked after you.  Ideally there would be a few people who’d be picked after you.

If you weren’t into competition and/or really did not care, well then being picked last was completely okay.  It simply did not mater to you.

These days it isn’t so much being picked last that can be a fate worse than death.  At least not in my world.  Nope, that special honor now goes to how long I’m stuck waiting on doctors or other medical professionals.  There is nothing worse to be stuck in a waiting room well past your scheduled appointment only to be taken into another room to have to wait even longer.  I understand that doctors and medical professionals are busy.  I know there are other people who need help as well.  But please don’t make me be the person who is waiting the longest.  (Okay so I am a bit competitive!)

What I do when I arrive for my appointment is see how many people are in the waiting room.  I look the group over and make a silly decision about how I need to be taken in before some of these people and get back out before they are released.  It isn’t like I have any control over these things.  Yet still, I cannot be the last person.

Of course I am relived when I get called before some of the other folks. But this is temporary because then it becomes a question of how long do I spend waiting to see the person I have the appointment with.  And the longer I wait, the more it becomes the same as being that last person picked when I was a child.

There have been times I’ve wondered if they have forgotten about me, and just when I’m getting ready to leave the room, in walks the person I have my appointment with.  Of course there are apologies and explanations and somehow I can’t help but wonder why don’t I get that attention.  Which is silly because I do get the same attention and if I need extra time I am able to get that as well.

Even though I know all of this, please, don’t leave me in the room too long.  And please don’t put all those other people before me!

Working Lupus

I was recently asked what made me go to work every day. There are a lot of simple answers to this question. According to Maslow’s hierarchy of needs, a steady pay is definitely one of the reasons. I’m not independently wealthy so I need a means to pay the bills. But of course I could go elsewhere and get some type of pay so clearly that isn’t the only answer to the question.

Another simple answer is that I love what I do. I know that sounds a bit hokey and fluffy, but it’s true. Now I can’t say that I love it enough that there aren’t moments where it doesn’t feel like work, but on the whole I love what I do. The fact I get paid to do what I love is a bonus. A huge bonus.

However when I look at this question more deeply, the fact is there is far more to it than just a simple answer. Dr. Maneesha Pednekar said it best when she was talking about ensuring a company takes care of it’s employees the same way it does it’s customers. She said:

“Employee experience is as important as Customer experience. Crafting memorable moments for Employees to remember for a life time. Somethings will never go out of fashion. The human connection, trust, empathy, hope, optimism and the opportunity to inspire and be inspired!”

My current work, place of work and people I work with/for manage to fill this and so much more.  This is to some extent what helps keeps lupus at bay.

Devious Devices

Today I ran out of battery power.  Well not me as per say but my devices.  Perhaps it’s a case of me failing to manage my device power levels appropriately.  I can accept this is a failing of mine.  Especially since my phone, tablet and wearing technology all were at less than 20% battery power at the same time.

Now having an energy crisis is not a small thing these days.  Life is basically run off of and held within my devices, or so it seems.  Thus I did, upon getting the low battery warning, rush to find outlets, Chargers and the likes.  I was a girl on a mission to get that all taken care of.

Once my devices were all nicely tucked into power outlets I wondered what the real Rush was about.  Would the world end if I let my phone die for a bit?  Probably not.  Would disaster for all mankind arrive if my tablet went dark?  Well it might on account of the work I was doing was off my tablet.  And in all fairness my tablet is what warned me it was running out of power.

I’ve let these things creep into my life to the point of dictating my responses which isn’t right.  But here I am charging them and keeping an eye on them because they seem to control me or have control over me.


Deadlines.  We all have them.  How we deal with them is up to each of us.  Some of us hide from them, pretending they don’t exist, however they just loom over our heads until they are right above us, pressing down with incredible weight.  Some of us get with right on whatever it is so we more than meet the deadline.  We end up well ahead of the game. In those cases the deadline seems to have little weight on us.

Now life might be interesting without deadlines, but what would we really get done if we didn’t have to get it done by a specific time?   How many things would just pile up and never get looked at or dealt with?  So yes we need them, perhaps not too many of them  and maybe, just maybe we need to figure out how to manage them a little better as far as assigning them or doing the work to get them met.

Speaking of deadlines, I’m pretty sure I have something that needs to be done, but I can’t remember what it is was because I just pushed into the later pile.  And today my later pile is rather large!