Here’s Mud In Your…House

I keep waiting for the end of the muddy season.  You know, when the dog can head outside and come back without spreading the mud all throughout the house.  Not that she cares if it’s the muddy season, the cold season or the sunny season.  She is able to find delight in each and every one in its own way.

I, on the other hand, have yet to master the skill of finding joy in each and every part of the season.  The muddying season means endlessly cleaning floors and he parts of he walls she can reach.  The cold season means she can traipse though the house dragging her cold weather gear everywhere.  In the sunny season she brings in dead grass, insects and dirt.

But regardless of the season, she finds joy in each moment.  When its muddy outside she finds puddles to play in, others to splash around in and comes back soaked, soggy and exhausted,  after cleaning her up she’s ready for cuddle to warm up and settle down for a long sleep.

In the cold weather she will romp around, fast, chasing her own breath in the air.  She will come back in, cold and cuddly well ready to curl up in arms or near the fire.  And to make up for the shorter times during the cold that she spends long hours out in he sunny, warm weather.  During the sunny days no insect is safe from exploration, which in her way means to be tasted.

And while I’m not so interested in tasting the insects, I do which to find the joy in each season the way she does.  Just once my feet dry and the mud has been removed off the walls!

Worry Less Laugh More

I used to worry about the future a fair amount.  I worried about exams; what to wear; doing the right thing to impress the right people; I worried about all sorts of things.  I mean I worried about what to make the next day.  And then lupus came along and taught me a valuable less; worrying just wastes time and energy.

I still do worry now and then, but after these last few flares I’ve gotten better at not spending too much time worrying.  Because you never know what’s going happen and worrying about what may or may not happen is not like having a crystal ball.  It just creates unnecessary stress and such.

The latest flare had a specialist concerned I was going into organ failure.  I wasn’t, exactly, but I’m a hair closer to that now.  The specialist asked me if I had people I needed to get in touch with, if my affairs were in order etc.  I laughed.  Not because I laugh in the face of death, for I’m not there yet.  Instead I laughed because no matter how much time I have my affairs will never be in order.  It’s not possible.

I did phone Beloved to tell him that things have changed, but not to worry too much.  Things are under control sort of.  He came, listened to the doctor, and started to go into wry mode and the asked for a second opinion.  Which helped settle things down a bit.  And instead we have decided, once again, to enjoy the moments we have.  Living as much in the moment as we can and not worrying too much about tomorrow and what it brings. Because that just cuts into our time together so forgive us if it seems we are laughing inappropriately.

Lupus My Internal War

“You should feel a nice gentle stretch right there…” she said in a calm and soothing voice. What she should have said is “this is going to hurt like nothing you’ve ever felt before” and followed that up with an evil laugh because that’s more what it was like. But I’m sure she’s a lovely person who got into physiotherapy solely to help other people. I’m sure she’s not into torturing humans; I mean she doesn’t look like the sort of person who would do that. Yes I know, you can’t go by looks.

As she carried on with her routine I wondered why healthy people, sane people for that matter would willingly part with good money to be tortured. It doesn’t’ make sense to me. Torture, by the way, at least according to my insurance company, is not a cheap form of therapy. Surprisingly, the insurance company will pay for the expense because it is more responsible than medical device options. Or perhaps it is because deep down they know it’s torture and so they will part with the money provided they aren’t’ the ones feeling the pain.

When I told a friend I was heading off for physio, basically light stretching and body manipulation she was envious. So envious in fact that she asked me what my doctor wrote in order to get this covered by insurance. I told her he wrote “diagnosis: lupus” and if she wanted that she would have to take all the rest of the things that came with it as well. She said that was a bit extreme for some pampering.

She calls it pampering and I call it pure hell followed by days of slowly recovering. So why go through it if it isn’t relaxing or reliving? Because like so many things with lupus you have to go through discomfort in order to get things into better shape or to protect things for further damage. It isn’t about pampering, a spa day or restorative treatments. It’s literally hell and I get it because in some way this is my body’s internal war and last time I checked, war is hell.  I’m just hoping for a truce soon.

Night Musing or Mixed-up Mind

Sometimes, in the darkness of the night that seems to hold everything still, I can see the field of dreams I once rested my head upon. It doesn’t always happen, but when it does It’s like being 17 again. Not that I really want to be 17 again, because frankly once was enough. But the magic of having a whole field of dreams resting at your feet just waiting for you to find them…that calls me back sometimes.

And sometimes in the darkness of the night so inky black that you cannot see your hand before your face, Beloved’s voice will come from what seems like a million miles away even though he is right there beside me. In those moments, where he seems so far and is so close, he will whisper his fears of not having enough or not being enough. As if in the dark, where no one can see our faces, it becomes okay to admit to these doubts. During the day we dare not speak them for isn’t the truth visible anyway? The inadequacies, the poverty and the deficiencies are all out in the open for the light to hit them if we seek them. But at night, after a day of pretending not to see, after a day of being too busy to remember what was completed and what wasn’t, well then the words he cannot say during the day find form.

And sometimes, in those moments as the sun is just coming up, bathing the room in a ghostly pale light I will ask him to come with me, to explore that field of dreams that once was so bright and so possible. He never answers because I have yet to ask him when he is awake. What if he says yes, what if he discovers that my field of dreams is really just a sad illusion painted over with the hopes of teenage naivety?

It’s in all these moments, before I wake up to bright lights and sparkling blue eyes that I wonder if he would just pack it all in on a whim and head off to wherever a finger lands on a map. I wonder if he will ever get tired of things and go back to his field of dreams. If he realizes that not having enough is more than I could ever ask for and more than I’d ever need.

A Different High

When I was a child one of my favourite things to do was swing.  I loved to hop on a swing and get it to go as high as it could, almost like flying.  And I’d get brave with that swing too, I’d get it going so hard that the legs, which were supposed to anchor the swingset down, would end up lifting a bit off the ground.  And if I was feeling really brave as the swing was slowing  down, as it was coming time to stop swinging I’d get myself to a point where I could just jump off the moving swing.  My mother used to claim this took years off her life.  And I was the kind of child who sometimes would be thrilled by that knowledge and thus do it more frequently than I otherwise would have.

And today I found a park with a swingset.  An empty swingset that would I could hop on and fly once more.  So of course after glancing around to make sure there wasn’t anyone around, I jumped on that swing and got to making it fly.  Probably not nearly as high as I did when I was a child, but still fun.  Besides I’ve got to work against gravity more now because, well, I’m bigger than I was as a child.

And for the record I did not jump off the swing before it stopped.  Not because I’m not brave, but I’ve got brittle bones and what have you to think about these days.  Besides now, when I want to go flying I can get in a plane and reach other heights!  But I will let you in on a little something, swinging is still as much fun as it ever was!


As I was listening to friends recite their wedding vows it occurred to me that when it comes to the whole “in sickness and in health” part sometimes you get the short end of the stick. Thankfully they threw in the whole “till death do you part” bit so that if there is a serious illness the union had an out, in “good” time.

Not that this is something my friends have to worry about and I wish them well in their “official” life as a couple. But it did get me thinking about my own circumstances. Had I been born during a different time I would have already completed my life, certainly the medication that keeps me alive wouldn’t be available and therefore the chances of having reached my current age would be very slim.

And there is that whole piece about providing an heir, which has never been a possibility for me. The whole putting someone to death from not bearing children would be fairly moot for me, because again…hell chronic illness so probably already dead.

It does make me wonder, sometimes, how Beloved has come to the decision he has and wants to stick around. He knows things aren’t going to get better, not with my health coupled with my poor luck. He doesn’t mind though. For him any time spent with the person who stole your heart is a gift. He doesn’t add the time up the way some people do, the way our friends talk about fifty or sixty years down the road.

Granted he hasn’t planned my funeral either, but we are both aware that between ill-health and choices made the fifty years is a very far-reaching target, thirty being more likely unless there is more medical intervention and choices become different. Sometimes I wonder why he sticks around, knowing that for all the “good days” there are far more “bad” ones. That in the long run I rely on him far more than he on me because let’s face it, lupus is not the most reliable illness, save for knowing flares are likely to come when you least want them! (Not that I have ever wanted a flare, but happening when Beloved wasn’t’ being honored would be nice for a change; or letting me finish an entire school year without missing days would be lovely.)

It isn’t that Beloved got into this whole thing and then was blinded side by the side-kick. Nope, I decided to be upfront with him about my ever-present sidekick so he could run as fast and as far as he wanted to. What he did was stay, in sickness and in health, but mostly sickness these days because there are more of those. What he has done is listened carefully as I’ve gone over my medical directive with him. He has watched me fill out form after form declaring no “lifesaving” efforts for this girl. And he has read through the brochures of places that help people end their lives with dignity. (He joked once that it would be cheaper so simple give me too much of my meds and just let me die of an overdose. We laughed for hours at that, I safe in knowing he’d never be able to carry that out.) And we’ve held hands in the scary quiet look of a grey faced doctor trying to gently explain things that really didn’t need to be said.

So I guess, despite not having the ceremony, not having the dress, the cake or the ring. In some ways we have completed our vows; “in sickness and in health” has been tested and is solid. We’ll come to the “till death do you part” piece all in good time; our time, our terms.

Who Knew I Had Such Power or Grading Life

A student emailed me the other day, expressing her disappointment with her mark on a paper. She did not ask what would have made the paper better; she did not seek to book an appointment with me. She just wished to express her pain at not receiving a mark she felt she deserved. As a result, she told me I had “shattered (her) hope and dreams for a brilliant future”.

Who hasn’t been disappointed in life, sometimes by our own hands and sometimes by the way circumstances fall together? Who hasn’t come up screaming and swinging at how unfair it all is only to set back in a moment of silence and recognize the role S/he has played in getting the current point? It’s all part of the package known as life.

How one mark on a small paper at this time in her life will lead to shattered hopes and dreams I have no idea. It does not make her any less worthy as a person. It does not mean she is not allowed to still reach for the golden ring. It may mean she has to work a bit harder somewhere along the line. But it is only one mark and in a few years it won’t’ even matter any longer. Because no one cares about you grade point average once you are out of school. It is totally irrelevant as I have learned.

Graduated on the dean’s honor roll? Good for you, either you worked hard and sacrificed some of the experience of college time or you were able to find the fit between your classes and enjoying student life. The corporate world really doesn’t care much beyond the fact you have your degree.

I wanted to tell this student to relax, enjoy the whole experience as school and realize that in the grand scheme of things, this mark won’t matter. It won’t make or break her as a person, unless she lets it. And there is so much more to life than grades, some much more of life is spent outside of school than in it unless academia becomes your home. No one will think any differently of you if you were B or C student. Outside of the classroom it can be hard to tell the A students from the C students in casual conversation.

I also wanted to tell this student to never give someone else that kind of power over her life. Never let the opinions of another matter more than your own ambitions and determination. But I didn’t tell this student any of these things. Because she didn’t want to hear any of that, she wanted to place the blame of her future failings squarely at my feet. And that’s up to her. I won’t own it, and I think it’s rather sad if she opts to use this logic for her future. But it is up to her to make of things what she will. And if she wants to say her whole life went to hell in a hand-basket the day a professor gave her a C- on a positional paper regarding the role of women in theology, that’s fine. I just hope she also includes that her life took this direction because she failed to support her ideas, cite sources properly and ignored minor things such as spelling and grammar. After all if you are going to tell the story, you might just as well tell the whole thing right?