When The Process To Get Help Hurts

I’m not the kind of  person to find joy in filling out forms and yet having a chronic illness like lupus sometimes results in the need to fill out forms.  Forms for exemptions from things.  Or forms for accommodations for things.  Sometimes the filling out of the forms for an accommodation due to health hardship is ironically enough a hardship in and of itself.

Not only is the filling out of the forms to be a challenge when your hands hurt and your head can’t seem to make the thoughts connect, but sometimes the questions themselves hurt.  Questions like “how different is your life now versus before” or my all time favorite one “how has your disability impacted your life/quality of life”.

I understand that these questions are important, but when they are asked, it’s as if you are confronted again with all you have lost or had to adjust to as a new normal.  Sure on a day-to-day basis I am still dealing with these changes, but I’m busy trying to get through as best I can so I don’t take a close look at the loss in my life.

Being asked these questions is the same as shining a spotlight on what feels like my failings.  I did not ask to have days where pouring a cup of coffee seems to be the same type of challenge as climbing Mount Everest.  I do not enjoy realizing that the long hikes I used to take are just that, things I used to do.  I am no longer able to do that.  And I certainly hate to remind myself that in my life, daily pain and medications are the norm now.  I hate being reminded that I carry out a ritual every week, one that is necessary to save my organs, but also means putting toxic substances into my body that most people will never take for the rest of their life if ever.

And that’s the rub with lupus and other chronic illnesses, you are in a state of struggling with your new normal which can change on a regular basis so you never fully mourn your losses. Instead you are harshly confronted with your losses now and then after you think you’ve done a decent job of filling in some of the void made by the changes.

Thankfully the form I had to fill out today, the one asking me what my life was like before my condition changed and how have those changes impacted my emotional, physical and spiritual health was one on the computer.  Otherwise it may have been sent in with a few watermarks of my own…tears that is.


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.

Secret World or Secret Socities

Fancy handshake? Check. Unusual clothing or adornment? Double check. Secret location? Check, check and check. Plans for building an empire or taking over something? Check. The beginning of a secret society meeting? Sure, if meeting under the table is a clandestine location and wearing a blanket over your shoulder counts as unusual clothing. Empire building? Well let’s just start off with a few building blocks and see how that goes before we build a whole empire. (Blocks can be a bit tricky don’t you know.)

The secret society? The Masterful Moppets, aka toddlers. Yes toddler. Have you ever known a more secret, odd group of beings? Their only downfall on the whole secret side of things is that they like to share, sometimes over share, what they are doing, have done, or learnt. But hey we all have to have our faults. Other than that, to me the world of the Masterful Moppets is a complete mystery with strange rituals (rubbing one’s thumb over one’s favorite blanket repeatedly), odd language and symbols and let us not forget a magical force or entity they believe will bring them/give them anything they desire.

This magical force seems to respond to tears, wails and cuteness. Not necessarily in that order though. The magical force or entity? Sometimes known as mama or dada, perhaps mommy or daddy. It matters now so long as the force responds to their manipulations, and if not, surely they can wear this entity down into giving in. Or at least try for the motto of the Masterful Moppets is try, cry, and nap.

Fine Dinning And Fine Conversation

While having a lovely meal with some friends, I couldn’t resist asking one of my friend’s what happens to all the cosmetic fillers people put in their bodies after the person has died.  What I wanted to know is if there would be proof long after a person was deceased that said person had used fillers.

Now a brief aside here, all of my friends are used to these odd questions, typically posed while we are sharing food and/or drink.  In other words it wasn’t completely out of the ordinary and everyone, well other than Beloved, was okay with this question.  Beloved was repulsed by the question.  Mostly because he had been enjoying his food and does not want to think of decay while he is eating.  I know, he is odd.

I am still waiting for an answer to this question, by the way, as my friend didn’t know.  But she promised to check with a few other doctors who do that work more than she does.

And this one, innocent question I posed lead to a most delightful conversation about what to do when you don’t know a loved one’s wishes after s/he has been deceased.  My doctor friend causally tossed out the fact that bodies are never released to families any longer, instead just funeral homes etc.  The reason being is that some people would not deal with the remains appropriately.  She shared stories with us about people who basically lived with their deceased relatives, unembalmed etc. for years.

By this point Beloved was no longer interested in eating and so he pointed out that in some cultures, those who aren’t “afraid of growing old or dying”, have ceremonies where they bring their deceased relatives out each year.  Mostly bones of course, but still.

It was around this point the waiter came and asked us if we were finished, not because the restaurant was busy or because we were loud, but rather because he disliked the conversation.  So we paid our bills and left, heading to my friend’s house for coffee and such and to carrying no the conversation.  We also made a note that we wouldn’t be dinning at that establishment again because we were a bit miffed with the waiter.  Although Beloved did point out that the conversation wasn’t one to inspire ones appetite.


It’s easy to lose sight of things.  It’s easy to be caught up in details and apply that tunnel vision to everything.  There times this is a good thing, and then there are times that we miss out on so much because we simply didn’t allow ourselves to look further afield, check out what’s happening on the sidelines or take in the whole horizon.

If we only glance up occasionally, if we only shift our focus for the briefest of moments, it is easy to not see everything.  At times what we miss might just be an entertaining moments, or every day things.  Nothing major.

But now and then, every once and awhile we will encounter an experience where perhaps if we just paid a little more attention to things, we may have been there for something big.  The problem is no one knows when those moments happen.

Now I am not saying I would have made a difference to the outcome, but perhaps if I had spent a little less time with my head buried in my own work I may have noticed when a colleague changed.  I’m not talking hairstyles either.  A group of my coworkers and I all wondered this very thing.  If each one of us had taken a little more time out of our own worlds perhaps the one coworker could have felt as if he could reach out.  Instead, for whatever reason, he felt the easiest way to cope was to end his own life.

If each of us shifted our focus a little, if we all stopped getting stuck in those small details we might be able to be there for someone when one of those moments comes up in their lives.  And maybe, just maybe we’d be a little more connected and aware.

Unusual Visitors

One of my neighbor’s has taken to feeding the stray cats in the area.  At first he put out a few dishes of food out near the trees where the cats can sometimes been see.  He’d collect the empty dishes and set out new dishes full of food on a daily basis.  This went on for a few months before he decided to do something different.

He moved the food dishes to his back door to make it easier for him to ensure there was always food and water available for the stray cats.  He also started setting out little catnip toys for them to enjoy.

And naturally we started noticing more cats in the area.  We also started noticing that some of the birds were disappearing as well as the squirrels.  Logically it made sense, increase in cats means a decrease of small animals.  It was a tough choice, let the cats starve or realize we might have fewer birds and such.  I couldn’t say the cats were eating the birds, which another neighbor suggested, but naturally birds and cats will keep their distance.

The four-footed one didn’t attempt to make friends with the cats.  Instead she kept her distance.  But when the skunks and foxes started coming into the neighbourhood, well she couldn’t resist these new beings.  Thankfully the foxes were too shy to play.  As for the skunks, they clearly are used to dogs as they let the four-footed one come up and sniff them.  She also tried to play with them.  They weren’t interested in play, but thankfully they also didn’t spray.

The neighbor who thought he was helping the cats didn’t believe us about the foxes and skunks.  That is until one say when he was setting out the food and a skunk walked right into his house.  Of course the skunk didn’t stay, it walked back out of the door which wa still being held open due to shock.

We now have more birds and squirrels on the neighbourhood.  And the skunks still visit now and then.  As they as passing by.