Attitude, Belief, Lupus and Me

Over the course of my life I have heard that my attitude makes all the difference.  When I used to hear this kind of stuff I’d chalk it up to my parents or some other authority figure trying to control me in a way I didn’t want to be controlled.

When I got a little older I took some courses in psychology where I was taught that you can trick yourself into believing things that aren’t actual facts yet, at least when it comes to yourself.  For example if you dont feel confident but you keep telling yourself you are a confident person and pointing out the things you did accomplish with confidence, well you’d wind up believing in yourself when it comes to confidence.

So I would try these little tricks of the kind when I was feeling the effects of a flare.  I’d tell myself I did have the energy for a shower and getting dressed and my follow thigh would happen even if it was a huge struggle.  And I’d basically carry on with whole day by breaking it up into little bits.  Sure there were some things that became too much to do, but I would wind up the day by feeling really pleased with myself and all I had accomplished.  I’d even feel proud when other people marvelled at how I pushed myself on despite being in a flare because I was in charge not my illness.

Here’s the rub though, I never enjoyed any of the time I spent pushing myself so hard.  In fact I barely remember most of what I  did and why I had to do it at that time.  I just remember it felt like I was pulling myself through thick mud and there wasn’t a helping hand in sight.  The reality is there were tons of helping hands, most of them trying to pull me out of the mud to rest when I had expected them to get into the mud and push me through.  Truth be told, there was no real need to push myself so hard because the only person I had to prove anything to was myself.  What I should have been doing was being more compassionate towards myself, caring a bit more about my health and less about how I could push through and beyond what some of my health coworker’s were doing.

As a result, my disease would flare horribly out of control and end up doing permanent harm to myself.  Which I would then shrug off as I pushed through something else.  It was a pretty regular routine in my part, until recently.  You see I acquired a new member of my medical team and he put it to me like this:  “why should I bother to put in time and effort to keep you alive and healthy if you won’t put in the same for yourself ?”  He also told me that all my accomplishments in my personal life and my work life wouldn’t mean much if I ended up stuck in a hospital.

What I had realized was this man had listened to me talk with other lupus patients about the importance of rest and self-care while I refused to do the same for me.  He wondered why I disliked myself so much that I saw no value in me as a person.  And he voiced all of this and much more during one of my appointments.  It’s not that I dislike myself or devalue myself (although I am my own worst critic), it’s that I felt that if I could push back at lupus id win the battle. I have since tried to shoe myself the same compassion and understanding I share with others who have a chronic illness and I must say it is a huge relief to not have to do more than I feel I can do.  It’s nice to accept that some days having a shower and getting dressed is a huge accomplishment and that is perfectly fine.  The only thing that has changed, and it’s such a small change with such a huge impact is that I’m allowing myself to be a woman who sometimes must stay within certain limitations, but those limitations do not reflect on my impact.


Wishing It Would Happen, Anyway

I love the people who with things to life.  I’m not saying this in a rude way, I truly love those people who have the ability to simply wish for their hearts desire and it comes to fruition.  Frankly I’m envious of this skill.

You see friends when I wish something I’m almost guaranteed it won’t come true.  More like I’ve managed to wish it a thousand miles away.  As in never in this life can I expect to see that wish or somewhat close semblance to that wish in my world.

I can’t put into words how magical it is to see these people and the power of their own beliefs or rather the power they have in the power of their own beliefs.  It should be simple shouldn’t it.  Just believe that if you wish for something hard enough it will come true.

How do I not have this ability?  Is it my sceptical nature that gets in the way?  Perhaps those darker clouds of pessimism get in the way of the healing and nurturing light that allows wishful thinking to become true.  Perhaps it’s a lack of wish fertilizer because I’m busy fertilizing theories and questions all day in terms of doubt.

And maybe that there is the rub.  When you spend your time with doubt, even when wishes do come true you doubt the magic of the wish and it becomes one of those moments of considering if it isn’t wasn’t coincidence or something that was just going to happen anyway.  Following that worry, won’t it all just happen anyway, wishes or not?

Coming To Be

It’s times like these, when he’s off in his own world and I’m free to study him that I wonder how it came to be.  How we came to be.  We certainly aren’t star-crossed lovers, no Romeo and Juliet here.

He is so pulled together, so eloquent and articulate next to my fumbling, ardent weirdness.  Although he’d make a face at the word weird.  He prefers and insists I’m quirky.  As though that’s a good thing.

He is calm and steady, a compass that points true north.  I’m full of whirlwind energy and uneven ground, with a huge need to just simply explore.  There is gentleness to him, a sense he knows where he belongs and I’m still pushing and fighting, resisting every step.

ive known his past and can’t understand how we’ve come to be.  We are so different and so alike in other ways.  He is so sure of his place where as I’m so sure of what I believe even if I have no clue where my place iS.

A friend of his confided that upon first meeting me there was raised eyebrows.  I’m not at all like his past.  Not a swish of soft skirts, no soft voice and domestic comfort here.  No ladylike grace and genteel ways.  I’m more like a bull in a china shop, brash and sure of some things and stumbling around others.  I’m loud at times, and find skirts to be the cause of an allergy when hey come in contact with my skin.

And it’s at these times I wonder about all of this as I watch him.  He seems happy and comfortable enough.  He’s sure of this even as I have a need to pull out a microscope and study us. He smiles and promises me no matter what, this still works.

I wonder how he knows, how he can be so sure when I still can’t understand how it works, but know that somehow it does.  I wonder how he can be so calm in his belief, ignoring pasts and focusing on present and future with a steady commitment.  I wonder what happens if one day I give in and say yes.  If I toss the flowers over my shoulder and settle into domestic normalcy.

He catches me watching him and raises an eyebrow, my thoughts surely written bold above my head.  He doesn’t say a word, just smiles at me and shakes his head.  The unspoken words pass between us, him telling me to go ahead and keep looking.  His smile tells me his faith in us is strong enough for all of this.  And I find myself wondering why I do this.  Why I feel a need to examine this.  Why I can’t have faith and belief in this.  But he accepts it; he’s told me a million times before, he isn’t going anywhere so I can study him and yes until there is nothing left to study.

I Can’t Can I?

I bit back the words, knowing it wouldn’t matter what I said.  Sometimes people believe in something more than you do.  It gets awkward when those people are believing in something to do with you and you can’t seem to find the same faith in yourself.  These past few weeks I’ve found myself in this situation far more than I’d like.

Sitting in his cold office, biting my tongue to prevent the words “I can’t” from coming out was not exactly how I had planned this visit going.  I had planned on breezing into his office, reviewing my labs and breezing back out.  So where did it all go wrong?

Well it started with getting when I got out of bed and discovered someone had placed ground glass in all my joints.  And not just any ground glass, but the kind that multiples all the time.  Which means by the time my appointment came around there was no breezing or even gliding into his office.  What there was, however, was an amazing shuffle.

On top of the stiff, painful joints was bone weary exhaustion.  The kind of exhaustion that can’t be slept away.  The kind of exhaustion that reminds that sucks away any energy you may have had.  The kind of exhaustion that when you blink your eyes you wish you could just get an IV to capture that energy back.  Which means it was a slow shuffle, amazingly slow shuffle into his office.

When he suggested that I could make it down to redo my labs if I hurried I had to bite back those words.  Those words that said I can’t do this any more.  Those words that wondered what he had medicated himself with and why wasn’t he sharing.  Instead I painfully slide off the sharing, did a fast shuffle down to the lab, let them take my blood and then did a fast shuffle back.

Because I could do it, I didn’t want to because I knew it would hurt.  But I could do it and I did do it.  Pay for it?  Oh yes indeed and he knew it.  But he felt the labs needed to be redone so we could avoid the whole ground glass in joints thing.  And I agree because it’s no fun at all.  But oh good heavens the pain in the short-term!  I can’t would have been easier, for the moment.

I can’t even tell you how many I can’t moments I’ve had, not in total in my life.  What I can’t tell you is that I can’t is something I try to not say because those words, in a way, become a prison or a gate that hold you back.  They seem to gain strength in a negative way, if you have a person who believes you can standing beside telling you that you can. The minute you say I can’t it’s like you give it double the strength!

Two Sides Of A Coin

Today I saw two very different sides of humanity.  One side made me smile and be filled with hope, the other disgusted me and made me speak out.

Some friends and I decided to go for brunch in an older section of town, which means it’s has very steep curbs.  Not the most friendly thing for anyone with any type of mobility issues.  A man in a wheelchair was crossing the street and would soon be confronted with one of these steep curbs.  No where had a ramp or anything been created to allow him up onto the sidewalk and judging from the curb height, he wasn’t going to be able to get his wheelchair up there on his own.

Cue humanity that makes me smile, and yes bring a tear to my eye at the same time.  A group of teenage males decided to be the ramp for the man.  The group of him surrounded the wheelchair and lifted the man up out of harms way.  No one asked them to do this, they simply saw where they could be of service and so they stepped in and did what needed doing.

Fast forward just a bit to where we were eating brunch.  One of my friends is blind and another wears hearing aids.  We try to ask for tables away from the crowded areas to allow for everyone to hear and for everyone in a group to feel safe.  Today was no exception.  We got a nice table, the menus were brought and as is our custom, those of us who are sighted, take turns reading to our friend who can’t see the menu.  Because very few places do menus for the blind unfortunately.

Another party was seated somewhat close to us and as hey got to talking it got louder and louder.  Loud enough that my friend had to remover her hearing aids, thus effectively removing her from our conversation.  Our actress was a lovely young lady who asked the other party to keep it down as there had been several complaints about how loud they were, at which point someone from the party started swearing at the waitress.

Theloud party decided to say disparaging remarks about homosexuals because apparently this is a funny thing to do.  At which point I could sit there no longer so I asked them for their loud entertainment, so great  was it that everyone at m table had ceased speaking.  I also informed them that disparaging, ignorant remarked and crude language are inappropriate in public settings.

A member of their party said that since I was with a couple of dumb people, surely we shouldn’t complain.  We were ignorant for their party had let us have the table we had.

a few other people in the restaurant also decided to confront this noise party, as I explained that the word dumb simply means a person is unable to speak.  There are reasons for disabilities, but ignorance isn’t a disability…it’s a choice one makes, mostly out of fear or laziness.

Two middle-aged men came to stand where I was, they had their arms around each other and said they’d love to sit down with this rude, obnoxious group and educate gem about how to behave in public and answer any questions the group might have about homosexuality.

at this point the manager threw the loud group out of the restaurant, and apologized  to everyone else and tried to make things better.  The thing is, he couldn’t, nor should he have to make up for ignorant, childish people.  I wonder if more people stood up what the loud party would have done.

I hope in my life I encounter far more people like those young men and far fewer people like the loud table.  By the way does anyone know why they don’t make menus in Braille?

It’s A Head Thing

The power of belief is an amazing thing.  It floats and hovers around the corners and cracks of our lives, some of us more attuned to it than others.  It is how some people explain things they can otherwise not explain.  It is how some people live their lives.

Beloved and I are both somewhat skeptical.  Okay very skeptical when it comes to some things.  Beloved has been dealing with almost daily headaches for a few weeks now,  these aren’t the stabbing, ice-pick in the head kind.  More the steady, dull and unending kind that just make everything you do a chore.  When you can’t escape from them, then it becomes pure horror.

Numerous tests, scans and specialist have suddenly become a part of solving the riddle. So far to no avail.  Pills have been prescribed, the kind that will get you rough even the toughest pain provided you don’t mind being put into oblivion for a period of time while the pills work.  Pills that make you sick; make you sleepy; leave you dry-mouthed and others that leave you addled have all been handed out.

Nothing  can explain the sudden arrival of the headaches.  Nothing can explain their continual insistence in staying.  And nothing seems to make them leave.  At most he gets some relief if he takes pulls that basically put him to sleep.

A coworker suggested Beloved see a homeopathy doctor and since nothing was working he gave it try.  This doctor in turns suggested a therapist who works in her clinic.  A therapist who practices things such as acupuncture and cupping along with other traditional, eastern medicine.

The therapist told Beloved his problem was adhesions, thick adhesions wrapping around the energy flow, or at least that’s what he understood.  The therapist decided cupping should be done to get deep into the adhesions as well as get the blood and energy flowing properly again.

And so Beloved came home looking like he had been hugged by a very passionate and exceedingly aggressive octopus.  Perfect circles covered his torso and back as well has his neck and arms.  These were deep purple, some tinged with red.  He said they were tender, not painful, but tender.  he said the therapist warned him that it would be the power of his belief or skepticism that would either allow this to work or fail.

the headache didn’t go away even though he was desperate to have gin through the cupping and a round of acupuncture.  The therapist said it was belief, a strong belief that this would not work tha blocked the traditional means from working.  The therapist also told Beloved that if he could just open to the possibility that science cannot explain everything, then maybe the sessions would work.  If something doesn’t change I’m going to have to name the headache and start charging it rent! 😉

Present Touching Past

“It’s the energy you see,” he said as he spun n a circle, his arms held out to his side.  “More like the altitude,” I muttered to myself “that’s made him off his rocker”.

We’d spent the better part of two hours climbing this hill, man-made to be sure.  It isn’t that it was a steep climb, but at one time it had been terraced, now it was just uneven and seemed to be waiting for a misstep.  He had also insisted that we stop at “key” areas  where “energy flows bubble up”.

I couldn’t see or feel any change in these spots, even though he claimed he felt lighter and full of calmness.  I had decided he just arbitrarily came up with reasons why he wanted to stop and rest.  It was the only thing that made sense to me.

Now that I was standing at this high place I couldn’t help but marvel at the amount of work and determination that would have been required to be this huge hill.  I had to remind myself it was much smaller today than when it was in its hey-day.  Wind, rain and time had all eroded much the height and  sharp lines of the terraces.

Faith, desperation, belief, fear or what, I wondered, had led humans to create this special place.  A place that not all would be allowed to climb.  What deity demanded this kind of place?  Wha else did this deity demand to hear th requests, prayers and dreams of the people wh who came here to worship?

While he continued to marvel in the energy and the power he seemed to be picking up from everywhere, I wondered what made people suddenly abandon this place and perhaps this deity?  Could we even know for sure if this was a place of worship or could it have been some type of palace for a ruler?

Was he , in his modern garb and strange ideas of how to communicate with the energy here, creating some sort of link between the present and the past or was he just foolish?  Is there every a way to prove something like this?  Or for that mater, disprove it?

I took in the view and wondered what it would have looked like all those years ago.  I know trees had once been in the now barren fields below the mound.  The ancients from here and used up all the wood, cut down and destroyed all their trees and none seemed to have ever grown back.  Was that a sign of this place’s power or was it a reminder of how complete human footprints can be in nature?

We were silent on our trip back down to the car.  He was lost in whatever it was he had contacted up there and I as left pondering how much we haven’t really changed as a species.  We still seek power, powerful places.  We still leave our lasting mark on nature and believe the higher power will give us our desires.  We still alter, change and destroy as we see fit.