I’m A Horrible Person

It appears I have been gifted with the award of being the most horrible person in a friend’s life.  I had no idea I was up for this award, so it goes to show things can happen despite your lack of attention.  And evidently it is my very lack of attention which makes me the winner this go around.

I have a fair amount of things going on in my life, some by choice and some by anything but my choice.  This means that sometimes I fail to check all my various contacts on an hourly basis.  Frankly it may be a daily or weekly basis even. At any rate this friend assumed I’d be checking in with him on an hourly basis.  Which I wasn’t because I was in the middle of a health crisis requiring a stay in the hospital.

So I missed a message from my friend saying his mother had died and he wanted to me call him, ASAP.  I missed this message for oh I don’t know a week and a half.  When I got his message, his phone was going straight to voicemail.  I left a message and sent him a message expressing my condolences and explaining why I hadn’t been in touch when it happened.

He informed me that a horrible person.  A truly horrible person for not being there for him.  So yes I wasn’t there, and it sucks, but I kind of had a legitimate reason. I was in the hospital with no means to contact him.  😦

And Then

When I was young, I would run through gardens and fields, never worrying if they were wet or muddy.  When I was young, I’d find a swing to play on or a tree to climb or a hill to fall back on and watch the clouds waltz their way across the sky.

When I got older I stopped running through gardens and fields.  One’s heels tend to get stuck in soft earth after all.  And mud splatter isn’t the most ideal thing to have on your cloths. When I got older I’d never find time to hop on a swing or climb a tree and watching those clouds make their way across the sky was another indication of how much time had already slipped away from me with, so many things left to accomplish in the day.

And then I got sick.  And in getting sick time stood still and rushed away all at the same time.  I wondered if I’d ever have the energy to make it down a hallway, never mind walk through a field or climb a hill.  And instead of having someone push my swing, would someone be pushing my wheelchair?  The movement of the sun, moon and stars marked time in some surreal way.  Each day and night blending into the one before it as if it didn’t matter so much anymore.

And suddenly I was better-ish.  I was out and about.  I was running, sort of, cringing at the pain I knew was coming my way.  But still I’d do it just to enjoy the perfumes rising from gardens, tangled and unkept as well as though so immaculate you thought even the insects were placed just so.  And in doing so, I set aside a timetable to get things accomplished.  Things would get done as they would, based on what I had time for.

I left my heels long in some forgotten box, enjoyed the rain and the mud.  Forced Beloved to tell me what he saw as he too gazed up into the sky and wouldn’t settle for answers such as “rain clouds” or “coming storms”.  Maybe, just maybe, by being sick I found a bit of a rabbit hole to go down.  No I didn’t see Alice or the Mad Hatter, but I did find a way to grasp back the simple pleasures that I had enjoyed as  a child.

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.



Stained Glass, Stained Soul

Beloved has a things for stained glass windows. He cannot make them as he lacks the artistic talent for that.  He cannot install them as his thumbs seem to rebel against labor of that sort.  But he can find an incredible amount of beauty in them, especially the way the sun illuminates them.  And he does pay homage to them when he can.

No matter where he travels to, he will seek out stained glass windows to capture on his phone and sit beneath, to let the colored light play against his skin while he contemplates his life.  To him, there is something special about being able to sit bathed in the unnaturally colored light and reflect upon his actions, thoughts, desires and dreams.  He can spend hours in silent contemplation, lost in a world I have no way of entering.   Mostly because I tend not to darken the door during these moments.

There is something sweet and precious about his ability to find meaning, purpose and something so much larger than we are yet connecting us all to the same one thing.  And I find myself sitting in awe of this, of a simple act that is not so simple nor as easy as he makes it seem.  And while he is refreshed from his moments or hours of contemplation I find myself breathless from trying to chase my thoughts into a meaningful pattern.  And in these moments of peaceful stillness and calm he seems blessed in a way I don’t know how to reach.  It is as if we are meant to be alone for that moment however long it stretches, he lost in contemplation while I am left waiting and holding on for the moment to pass in order to reach above to get back to him.

A Void

There is something tragic about this hole that resides somewhere within me.  I suppose we all have some type of hole within us and that is why humans reach out to and need contact with other humans. This hole, I fear, is of own my own making, perhaps from when I looked through at myself in the mirror and did not like what I saw.  So I slithered away from the mirror to shatter it later on.  And created a void in my life while I created a hole on the wall where the mirror once sat.

For years I chose to ignore the void, instead staying as busy as I could.  The problem with ignoring such a void is that it grows.  The more you ignore it, the more it is fed and soon what was a small mirror sized hole is suddenly the size of watermelon.  A watermelon that kept growing until it threatened to engulf my very being.

So naturally I filled it.  I filled it with surface things, not realizing that it would just grow deeper until there a hole down to my very foundations.  Just when I was sure I was going to be lost in the hole, a hand reached down and offered me help.  Actually it offered me a hand up out of the hole.  And so out of fear of being lost to the hole, and yes I dare say a bit of curiosity as to who would be so foolish as to offer me this kind of help, I stretched my own arm out and up towards that other human.

Slowly, ever so slowly, this warm hand started to pull me out of the hole.  But the hole wasn’t about to give up a prize such as my very being.  Sometimes I’d slip a few inches back down before making a few inches above the where I had been before.  I emerged awkwardly into the bright light above my hole and looked back. When I was in it, at first, it didn’t seem too bad, but when someone told me I looked tragic, it made me think.  Maybe, just maybe, I wasn’t too good for human contact.

So I worked on filing the hole, filling it with the love and friendship of good people.  I still haven’t managed to fill it completely and sometimes I can feel it starting to shift back to what it was before, but now I reach back to hang onto the surface.  I suspect I will never fully have the void erased, and to be honest I’m not sure I’d want that either, but I probably won’t get as far down as I did before.



The Problem With…….Me

The problem with the beach is that in order to get to the water’s edge, I have to carefully make my way across the sharp stones, course sand and debris before I reach the soft, wet sand and feel the water gently caress my feet.

The problem with the beach is that in order to enjoy myself, I need to wear protection:  beach shoes to make my way down to the water’s edge, sun screen (enough to cover a large house, applied a million times over), a large hat, sleeves and an umbrella.  It’s a lot to carry or wear for a few hours of water and sand.

The problem with the beach is that Beloved adores it.  He needs to feel the water on his feet, he needs to walk the wet sand and let the gentle breeze that is always present blow his worries away.

The problem with the forest is that there are roots and branches on the ground, threatening to trip me up.  I have to watch where I place my feet which means I cannot enjoy the majestic beauty of the forest.

The problem with the forest is that I have to jump small pieces of shrubbery and try to avoid landing on sharp stones while my balance is less than stellar to go with my shorter legs.

The problem with the forest is that Beloved adores walking through it.  He feels as if he is apart of something magical when he strides across the secretive landscape, finding treasures along the way.

The problem with time is that it keeps slipping through my hands, far too fast for my liking, at least when Beloved is around. Before I know it, it is time for him to leave again.

The problem with time is each moment seems to take an eternity to pass when Beloved isn’t here.  A lifetime seems to pass from one breath to the next while I wait for his arrival.

The problem with love is that while it is a sweet thing, it is also a bitter thing.

The problem with love is that it is fickle and fragile.  It twists and it turns with no logic, leaving me behind and struggling to find my footing.  The problem with love is that I don’t understand it, not really.  It just sort of happens and you hang on for the ride, hoping the low parts zip by faster than the good parts.

Relationships: It’s Complicated

Have you ever thought you had a pretty understanding of how your relationship was going? You knew how to read things and could tell when something was going sideways? Yeah that was me too. Until today.

Today I discovered that where I thought I had a good handle on things in a very close relationship, I realized I had no clue how the other party really felt. Until the other party decided to show me. By just ceasing to interact with me. Completely. No warning. No signs to be read in advance. Just suddenly shut me out.

Shut me out of my contacts, my texts and all of that. Yes friends, my phone has decided I am not worthy of a relationship with it any longer. It stopped working for me. And yet, when I mentioned this to a friend, it worked just fine for my friend. I feel betrayed and hurt, not to mention confused why my phone works for someone else and not me. I am the one who charges it and takes it out on adventures.

I’m beginning to think my phone caught me looking at newer phones and is jealous. But I’m loyal to my phone and I thought we had an understanding around this. Evidently I was wrong. Please tell me I’m not the only person who has been shut out and denied by their own phone.

Lessons, Never Ending Learning

Education, they said, was the key. Always take advantage of every educational opportunity that comes your way I was told. And so I did. To that I end every opportunity to go back to school, to attend seminars and lectures was seized with both hands. Informal opportunities were consumed with glut and greed.

And then, well then there was a slowdown thanks to lupus. A forced slowdown mind you. I tried to push through it, my normally good grades paid a price and so did my body. I tried to ignore it, I tried to pretend. But lupus persisted.

But lupus decided to provide me with a different opportunity. Still a chance to learn something, only now a chance to apply more biology and medical terminology in the most personal way. There was no escaping this learning, try as I might. I was a captive student and I would get the same lesson over and over again until I learnt it. (There are some I still haven’t been able to fully learn, such as resting when I feel the disease becoming more active.)

I’m pretty sure I have a medical degree’s worth of education from lupus, if I were to want a specialty in the illness, but medicine never appealed to me. Instead I chased more ethereal things and dabbled happily in the world of theoretical beliefs, ideas and constructs. But lupus persisted to educate me.

When I proclaimed loudly that I did not need math, lupus showed me how much I needed math to manage my medications and such. When I protested at the tedious need for detailed and accurate recordings, lupus smiled and forced me to keep even the smallest of details recorded.

And I guess in a way they were right, education is the key. You need to have knowledge in order to make informed decisions, even if we are talking about lupus

Something Smells Off

I was recently in an environment where they have “scent-free” zones set up. There are huge STOP signs and “scent-free” signs in these zones. The floor is also painted a different color in case you missed the million signs as you somehow managed to sneak into the area.

As a guest, I had no inkling that they had these zones. No one told me when I was invited to stop by and do some observations in preparation for a project I was going to be assisting with. First off, I want to say that I do not douse myself in perfume or other products. I do have a light scent I wear from time to time, but I didn’t have time to put it on this day.

When I arrived at the reception area I was asked to sign in and grab a seat, someone would be by for me shortly. The person who came and got said we had a few areas to look at and expected me to stay over the course of two shifts when I had been told this would only take 90 minutes. The employee demanded to know why I thought I could set the time for my visit and when I showed her the email from a senior director she frowned and mumbled something.

Okay so it isn’t off to a great start, but I’m just making observations and taking the odd note here and there. Suddenly we walk over to this STOP sign hanging from the ceiling. She tells me every time I see one of these signs I need to follow it. (The sign was swaying from side to side and the smartass in me wanted to ask her how long I’d have to follow the sign, would it stop swaying on its own or was there a time limit. I didn’t ask, but oh how I wanted to.) She then pointed to the sign next to it. The one that practically screamed “scent-free”.

“We can’t go in there if you won’t follow the rules” she said after informing me that I broke the rules by having scent on me. The scent, in case you are wondering, a mild laundry detergent. Apparently, I was supposed to wash in an un-scented detergent, which to me still has a scent to it. She informed me that some people working in the area had sensitivities to perfumes and other scents.

I’m all for ensuring people can still breathe and not have watery eyes while they work. But I wondered how on earth it was okay to mandate that because your co-worker has an issue with scent you are restricted to the soap, detergent and deodorant you use. I mean where does that fine line get drawn.

Needless to say, we didn’t go in that area, and to be honest, I cut the meeting super short. I wasn’t interested in the attitude I was getting as the employee told me that I was expected to walk through these zones to get to places of observation and the rules applied no matter who I was.

When I got back to the office, I fired off a short email to the senior direct explaining my side of what happened. I didn’t expect much to come from it other than us maybe losing the project, but instead I got an email back. One that started with an apology and followed by saying that they were having an issue right now on balancing the needs of being sensitive to people’s health sensitivities, but also being realistic about things. The email went on to say there was no real reason to walk through the areas other than the “guide” wanted to prove the importance of the signage.

How do you balance these kinds of issues? Ones where people feel strongly about them, either because they are personally impacted or because they know someone who is impacted by it? And what about the person freedoms

Magical Cooking

Now and then I end up with. True experiment in my kitchen.  Not on purpose or design. It just kind of happens.  Typically when I end up with these experiments they have a hint of charcoal to them.  Okay who am I kidding, I can make incredible charcoal with nothing more than my oven.

Today’s experiment was something that should be simple and delicious:  crispy chickpeas.  The recipe called for a can of chickpeas, drained and dried.  A little olive oil, some salt and pepper.  Oh yeah and a hot oven.  Easy enough.  And I had to shake the pan occasionally.  Again not rocket science.  Just a timer and attention.

Despite my best efforts, despite following the recipe I ended up with a few crispy chickpeas and some charcoal.  I didn’t ask for the charcoal and I don’t really have much use for it, but maybe I can save it for drawn get on the sidewalk when the weather warms up.  Or perhaps I will save it for an experiment for something like the princess and the pea.  Who knows.  Of course who knows why I have this skill for using my oven to create charcoal.  Perhaps the answers will come to me at some point or perhaps  shall continue to make charcoal while I experiment with recipes in my oven.