Bend It Like…A Willow?

When someone first told me that a willow tree was also a symbol for lupus, I laughed. Not because I find willow trees to be funny, to be honest I haven’t really considered them much, rather because I found the idea of a tree being a symbol to be, well, unusual.

Then I started looking into willow trees and discovered that these trees are incredibly remarkable. They have medicinal uses, especially around fevers, pain and inflammation (think of Aspirin). Hmm sounds an awful lot like the issues I encounter on a regular basis with lupus. Inflammation? Check. Pain? Double check. Fevers? Low grade almost all the time.

In addition, these trees were used for art and tools given their strength combined with flexibility. Hmm sounds familiar again. Lupus has taught me how I used to underestimate my strength and determination. Prior to lupus I was somewhat comfortable assigning the label “too hard” or “too challenging” and giving up based off those labels.

Since lupus has become my constant companion, I am up for the challenge because on top of being strong, I am flexible. Not super yoga bendy. Not human pretzel bendy either. But I’ve learned to flex and adapt to changes because that’s life with lupus.

Another interesting aspect of the willow tree is that for the most part, if a branch breaks off or a cutting is made, they almost always take and become trees. I like to see this as my life with lupus being no matter how much lupus throws at me or changes, I still find a way to see it through to my goals or dreams. Even if they are a bit altered or part of something I had wanted which was bigger.

So yes, a willow tree makes perfect sense. Now if only I were tall and graceful like one!


Minding My Own Business

Isn’t it funny how you can be there just sitting around, minding your own business and suddenly the gently flowing creek you happened to be sitting by is a river and the straight path you were following is all twists and turns.  Sometimes it happens and you can see it happening and other times it’s a bit like waking up from a deep sleep and discovering that your hold world has changed while you had your eyes closed.  (Everyone else seems to be aware of the changes or rather the changes are how it has always been to them, and you are struggling just to find your place.)

I was just minding my own business today, doing some research as I am wont to do and suddenly what was a nice and peaceful day changed into a hectic race to pull stuff together for something I didn’t even know had existed before a off-the-cuff text made its way to me.  And it was as if I had awoken from a deep sleep and suddenly had to respond to questions and requests with tools I did not know existed, research had carried on with out me and there were new theories to explore and such.

So with a sense of excitement, thrill and yes apprehension I got into the race of getting things pulled together to submit a proposal because obviously people need to hear me speak about my passion.  (As if.)

Once the proposal was submitted I tried to go back to my research, but I couldn’t.  It was too “tame” or rather my frame of mind had shifted to something else and suddenly research was the last thing I wanted to be doing.  (Not that chasing the four-footed one around the house with a squeaky toy was the answer either, but I did it.)

I think, at some point, I will get back to my research.  Probably when I need things to calm down again, and once more the river will become a creek, the path will be straight and maybe, just maybe, I will rest against a tree trunk and take it all in.

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.



Because It’s Me

One of  specialists recently asked me to create a list of things I cannot live without.  I’m pretty sure it was supposed to be a motivational exercise regarding my lupus treatments.  I somehow doubt he wanted to get this list.

Things I Absolutely Cannot Live Without

  • Coffee (neither can the people who have to work, live or be near me)  This is non-negotiable and is in fact a safety issue
  • Books (books are life, enough said)
  • Dogs (these are also life)
  • Silliness (life is not nearly as much fun when you are also so serious)
  • Did I mention coffee, books and dogs
  • My own space
  • Magnolias
  • Freesias
  • Animals
  • Good food
  • Pushing the envelope and breaking rules
  • Equality (or at least the attempt to reach it)
  • Free speech and freedom to learn

I watched his face as he read my list.  I have honestly never seen anyone’s eyebrows manage to travel that far up a forehead.  It was honestly impressive.  (And between friends I was rather pleased with his reaction. Or maybe it was my ability to create that kind of a reaction in someone who is serious and all science-based medical all the time.)  And that was just a quick think on my part.

I know, some of you will tell me that was irresponsible on my part, and true it was a bit childish, but honestly this man brings out the worst in me.  Mostly because he is so clinical that he has to check the file to find my name.  That’s right, I’m basically an interesting puzzle for him to sort out, not a human being.

This happens when you have a chronic illness.  Especially when you have a chronic illness that refuses to follow normal treatment. You become a thing of interest, something to be studied.  Somehow you cease to be a human and instead become something to examine.  And as long as I can, I will force these people to see that while my lupus case may be interesting from a medical point of view, I am a person.  My illness is basically just a side-kick of sorts.  Not necessarily a wanted side-kick either.

Once his eyebrows came back down and he managed to regain a more healthy shade of pink, I asked him what he couldn’t live without.  (Because I’m annoying that way in case you haven’t noticed.  If you have, it’s been super kind of you to not mention it!)  Clearly I threw him right off his game because for the first time he spoke to me as a person.  He actually became a person to me, or maybe it was he allowed me to see the human side of him.

Now I’m not suggesting some type of miracle has happened here and I’ve ceased being a lupus case and have moved to being a human, but hey if even just briefly I could incite a change in this rigid, bow-tie wearing man who I will take it.  And maybe some time I will finish that list, but now, well now I need some coffee and to curl up with my dog while I read a good book.

Gadgets Galore

Sometimes all it takes is a new gadget or toy to get someone involved in something that she had been reluctant to do before. Sometimes, but not always. Certainly not if the person we are talking about is me.

One of the things someone gave me to help with my self-care routine is a tea scoop and steeping device all in one. It is supposed to provide you with the right amount of tea while also allowing you to put it in your mug so that you can steep your tea in basically two very easy steps. When your tea is steeped to the set amount of time or to your liking, you simply pull this device out and enjoy the brew. Easy peasy right?

And since I’ve protested the journey of cutting back on my caffeine by kicking and screaming this lovely person thought this would make it easier to move into a tea routine. As though giving up coffee would be that simple. And someone else happily provided me with lovely fruit flavored teas so that I can enjoy them hot or cold while still using my cute little device. Because let’s face it, these people collaborated! 😊

As cool as the gadget is, as amazingly fun as it is now to brew a mug or beaker as Beloved used to say, it still doesn’t replace coffee. How can it when coffee basically runs threw my veins? But still there is something I cannot deny about this gadget. Will it get me to drink more tea and thus cut down on my caffeine intake? Perhaps, and perhaps it’s a short journey that takes me back to beans and all the fun gadgets that go with making coffee.

What I can say right now is that I’ve consumed more tea than I usually do so right now we can say it is an experience to the good side of self-care.

Stormy Inside

I sat in the dark room, letting the flash of lightning illuminate things.  The thunder seemed to rumble the window seat I was on.  And somewhere in the deeper shadows, Beloved stood.  I knew when he came in the room something wasn’t right.  I could tell by the way he moved.

With the night flash of lightning I could read his face, displeasure or uncertainty straining his features.  I wasn’t really sure and somehow the way he moved closer still caught my breath.  I wanted to hold a hand out, beseeching him to stay.  But some thing held me back at the same time.

It isn’t that I wanted him to go, every part of me wanted him to stay.  But only if he wanted to stay.  And as the window seat trembled again I could no longer be sure if that was from the thunder, my thudding heart of his heavy step.  And maybe it didn’t really matter.

Id asked him, a while ago, to come away with me and come away he had.  And now he had asked the same, but I wasn’t ready to leave it all.  I wasn’t so sure I wanted to leave things behind as I ran closer to where he was.

And so we had fought earlier.  The weather providing a storm to match my mood.  When the storm had started he was packing books, carefully and methodically.  His back stiff with all the unsaid words.  Who could blame him though, he had come when I had asked him to with me?

And as he packed, I came up to my favorite seat and watched the storm darken the sky, matching my mood.  I knew I should have been packing, or at least helping, yet there I sat.  The minutes ticked by, lost in the sounds of the storm and soon the noise of his packing stopped or was lost to the storm.

But I knew when he made his way up to the room.  And I knew he wouldn’t ask again.  I knew him, who he was for so long it was like knowing myself, all the good parts.  And still not knowing the right way to fix this all so I shrugged my shoulders and offered up the severity of the storm.  Surely he would see the sense in waiting it out.

After all neither of us wouldn’t give an inch easily, unbending steel and so much to lose.  He offered up a quiet “right” and shifted out of my line of sight, sighing as he did so.  And it should be so easy, to go to him, but sometimes it’s hard to know if I should stay or go.


Gentle Now

Bless my heart, and bless your hearts as well.  Not in a bad way mind you.  Just in a sense that we all, we’ll lets face it, this time of year tends to mean people are harder on themselves.  Perhaps you made resolutions, or goals.  Maybe you set yourself a new set of expectations.

We do start off with the best of intentions don’t we?  We mean well, we want the best for ourselves and those we care about.  So we vow to hit the gym, eat better,and spend more time disconnected.  It’s great, that whole new field of changes.  Wide open space and bright new canvases to paint upon.

And then reality, or life, comes to our doors.  We mess up on eating right.  Somehow a cheeseburger or fries ends up being consumed.  We miss a day at the gym because we have too many meetings or what have you.  So get down, we get hard on ourselves.  We forget that this is a journey, not a short sprint.  Habits take time to adjust.

I know I berate myself for slipping up, for making a bad choice or just forgetting to do what I planned.  It is, of course, the wrong thing to do.  After a mistake like that I should dust myself off,encourage myself to get back up there and try again.  Instead I toss more energy into punishing myself and soon, al too soon that is, I’ve lost sight of what I was trying to do.

friends, let’s speak more kindly to ourselves.  Let’s remind ourselves that change is hard and nothing that is meant to last a lifetime is built or created in one day.  Let’s encourage each other, catching each other when we stumble and most of all let’s be gentle because the hard part is change and transitions.