One Of Those Moments

I’ve been debating writing this post.  I’ve struggled with if it’s the right thing to post or not.  And in the end, after the mental debate was done, I decided I would post it, because chances are I’m not the only person who has experienced something similar.  You see now and then we encounter ignorance in our lives.  Most of the time we just get past it, but now and then it strikes too close to home.

While out and about today, picking up something a little special for myself I encountered that form of ignorance that stopped me.  Actually, friends, it left me a bit hurt and later a bit teary eyed.  Which yes is silly, but it’s also just a fact of being human.  And no I don’t expect everyone in the world to be versed in lupus, that would be asking too much and frankly few people get it unless they or a loved one has it.

And yes it is a “horrible autoimmune illness” as the man in the store was explaining that he was so relieved that his wife had cancer rather than a “horrible autoimmune illness like lupus which is life ending”.  It isn’t, life ending.  Lupus I mean.  You still have a life, or at least I have a life with it.  Sure some things have changed and altered by this illness, but it isn’t like I’m just going through the motions either.  And I made a point of letting the couple know that life, does in fact, happen with lupus.

It was after, when I was explaining what had happened to a friend that the tears came.  Before it was just anger.  Neither is exactly appropriate.  At least not when it comes to addressing a lack of education and I know better.  But I’m also a human.  Who has lupus and at times struggles with the downs of the illness.  This time I got caught with the ignorance on a down point.

Sure living with lupus is a struggle at times, but not always.  And sure there are down moments, but the same can be said for people who are perfectly healthy.  And life, my friends, is what you make of it.  You can embrace it with arms wide open or you can drift along and see where it takes you, merely observing and getting your toes wet now and then.


Glass Measures

In the movies, or television for that matter, if a person is holding a glass when s/he receives bad news, it almost always slips out of the person’s hand and shatters onto the floor. As if it represents how the news is shattering the person’s life.

In reality that doesn’t always happen. Sometimes glasses are broken in a tightened grip and sometimes, if you are like Beloved, you set it down carefully and gently. You take great care to not pass the horrors of the news onto other people or objects. I know because I’ve watched him receive bad news in a way where he set his glass of whisky down carefully before rubbing his face with both hands and heading to the door for some fresh air.

To look at him, unless you know him well, you’d never know that he received bad news. But the tightness, just there by his eyes, the slight crease between his brows and the set of his jaw told me all I needed to know. Just as the way he placed the glass told me he needed time to himself. He’d tell me everything when he was ready. Until then, I’d leave the glass where he placed it and just wait.

When he did come home, he didn’t pick up his glass. Instead he came over and took my hand to lead me gently to the large chairs facing the window. There he shared his news, never once taking his eyes off the scene outside the window. But when he was finished, then he looked at me with those soft eyes of his before he got up and took to his glass of whisky, silently drinking.

I would have thrown the glass if it were my news. But it wasn’t. It was his. And in his way, he is far more mature, far more composed than I am. And so, he set it down gently to pick up later on when he was ready.

When Your Parents Told You So…

When I was younger, my parents used to tell me to write a letter to the person I was upset with.  They didn’t tell me to send it, and in fact they never did let me send it, but they would insist that I write the letter.  The idea was that once I put my feelings and thoughts to paper I would find some healing or at least a way to move on.  And the letter would be ripped up or tossed on the fire so that I would have the satisfaction of watching it get destroyed.

Now when I was first diagnosed with lupus it occurred to me at some level that I could or maybe should write a letter to lupus.  Not that lupus would care, however it would still provide an outlet for things.  I didn’t do it.  I felt instead that I would be better served by taking that bundle of emotion and tying it into other aspects of my life.  And that worked well when it came to sorting out eating healthier, exercise regimes and such.

To be honest throwing that energy into learning everything I could about the illness and getting lost in school too all helped me.  But now, now I have time to consider things from a different place.  A place that reminds me that I have lost many things, and it’s okay to be angry about that.  It’s okay to rage about that anger, it’s part of the grief process.  And it’s okay to grieve for who I used to be.  So I have taken that idea and decided to write-up an obituary of sorts for some of my dreams and hopes.  And at the same time I have taken that idea and also written a gratitude journal for all the things I’m grateful or appreciative of since lupus has come into my life.  So maybe my parents may have been on to something.  But I’m going to do it my way!

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.



Not Impressed

Someone once said that with a quarter you can call someone who cares.  I may have even said something to that effect from time to time, typically when I have been feeling less than charitable.  When you break it down, I’ve basically told someone that s/he should find someone else to tell his/her sorrows to because I don’t care to hear it.  In some cases it’s come down to not caring about the person let alone the issue.  I know, not nice.

It got me to wondering though, what would I do if I didn’t have someone to unload my problems, rants, complaints and general mess of life upon?  What would I do if someone told me that s/he didn’t care?  I mean aside from feeling hurt and what you.  Well, knowing me I’d take the quarter that was being offered although I can’t remember the last time it cost only a quarter to make a call from a pay phone (and come to think of it, I can’t remember the last time I saw a pay phone) and probably think ill thoughts of the person.

Knowing me I’d not only take that quarter and be filled with anger, but I’d find a way to get my issues heard.  No I wouldn’t write the latest greatest song based on a relationship gone bad.  Nor would I write some heart-wrenching poem.  I’d probably write some seething email or letter.

Of course the fact is that I cannot imagine being in a situation where I needed to tell someone something and that person told me that s/he did not care.  But then again I rather enjoy being alone and not super close to people or needing people that much in my life.  And maybe, just maybe, that’s why I cannot understand being in that position.

Rolling Away From Anger Towards Gratitude And Appreciation

Someone Beloved knows from years ago was recently in the media discussing the importance of enjoying the little things in life while having gratitude for each moment.  We didn’t catch the live segment but a friend from Beloved’s home sent him a link to the recorded discussion.

In between rain storms and my need to rest, Beloved decided to listen to the discussion. He wasn’t expecting anything ground breaking or such from it.  He was just curious, idly so as he out it, because when he knew him, Beloved would not have suspected the boy to grow into a man discussion gratitude or appreciating the little things.  In fact when Beloved knew him best, he was an angry young man who was at war with himself and the rest of the world.

Beloved was curious as to what would bring about such a change, what life experiences had provided him these lessons.  It turns out a horrible car accident initiated the experiences which in turn taught the lessons.

A car accident which resulted in paralysis in basically the blink of an eye.  He indicated in the discussion that a spinal injury can prevent the body from properly regulating temperature.  He said a spinal injury can make you wish you could feel the rain against your legs when a summer squall suddenly popped up.  Being paralysed and dependent upon others helped him to relearn that life is made up of moments of rainbows and gentle breezes, the trick is to enjoy it all as best as you can.

Beloved listened to the discussion a few times and noted whether you are in a wheelchair or suffering from a chronic invisible illness, you tend to savour the good moments more than others would. I suspect it is because you know the dark moments that others can never even fully dream of.  And I know from my experience you don’t have the energy to keep fighting everyone and everything when you have to heal yourself.


Spontaneous combustion has always intrigued me. I mean one minute a person is just sitting there, probably in his/her favorite chair, minding his/her own business and then WHOOSH up you. Well part of you anyway because in all the pictures I have seen there are still parts of the person left behind, usually feet and a portion of the legs. I’ve always wondered about if the person is even aware of what is happening as this combustion takes place. Surely if the person were to be aware, it would be super brief. And I must confess to being intrigued how a person can be consumed by fire and nothing else around the person be destroyed.  

As a child I had many questions about spontaneous combustion. I blame my mother for she used to say things like she was getting so mad that smoke would soon be coming out of her ears. Was that the trick? Did a person get that made that they just suddenly went up in flame? (My mother never did reach the smoking point, not even the smallest of wisps of smoke came from her ears, so I never got to witness what could be the beginning of the process. To be honest there were times I wondered if her ears did smoke, what would I do about it, throw water on her or get the extinguisher.)


As I grew older, I kind of filed the whole thing to be back of my mind. It got buried between school work, then my job and about a million useless facts that I must hang onto because someday I just may need them. (Of course by the time that day comes around I won’t’ remember where I filed those facts; heck I will probably on some game show and blurt out the wrong answer as the tiny person in my head desperately pulls out a useless fact not worrying about how it fits as an answer.)


And then today spontaneous combustion hit me again. No I did not ignite, although I did wish for a moment that someone else would just go up in smoke. I may have a bit of a morbid mind come to think of it because I’m pretty sure no one else in the budget meeting had thoughts or wishes of the accountant suddenly combusting before our eyes as he explained why we can’t have this or that and why we need to cut more things and do more with less. After the accountant did not go up in smoke, I wondered if maybe my mother was onto something, if maybe a person could get so worked up, so emotionally wrought that s/he would just go up in a plume of smoke. Just a theory because I’m not that angry and no one else is volunteering to let me test out the theory.