the last burnt sienna crayon

A lot of people believe there is “a way” to do things.

A lot of people are afraid that they haven’t found that “way” and are afraid that something bad will happen if they have done something “wrong”.

A lot of people are afraid to follow their own instincts and so look to others to “show them the way”, and eventually feel trapped between choices that they are not happy making and a feeling of helplessness in the face of some fatalistic dictum. It causes an awful lot of people an awful lot of anxiety.

Of course, I’m talking about me here and assuming it applies more widely. I write that from my own experience, not really from observation. For, I have most frequently been one of those people. In fact, I believe that I have probably most often been [allowed myself to be] subject to the feeling that my role on this planet was was simply to carry out someone else’s orders, not to make my own. So far I have always been the vassal, not the master. I think I was always waiting for that mythical time when having paid my dues, that I would get my reward and gain some kind of power, and suddenly be respected and listened to.

But to be quite honest with you, I’m not really feeling like waiting patiently for something that probably isn’t going to happen naturally in response to any kind of dutifulness on my part. I’m not in that kind of mood at the moment. I feel more like throwing out the rule book because I’m starting to realise that there was never an agreed contractual end to my serfdom. So I’m going to institute my own little personal peasant’s revolt, and see how it goes in maybe doing things my own way for a little bit.

One of the most helpful things someone said to me recently (besides all of your lovely and supportive comments here, that is. thank you!) was to remember that this is all just “trial and error”. The topic of discussion was MS, living with MS, treatments for MS, and “the way” that you are maybe “supposed” to do things. He just said “remember, no one actually knows anything for definite about this bloody illness anyway, or about most of the drugs used to treat it for that matter. You just have to try things, come up with your own thoughts and adjust accordingly.”

There was a lot of freedom in that idea. If I “do it wrong”, what does it actually matter anyway?

Who am I?

You tell me, because I’m not sure anymore.

I’ve tried to collect together all of the things which I’ve known myself by over the years, but it just doesn’t seem to make a coherent whole. It doesn’t make any sense. And then I try to collect together all of the things that have influenced or even directly caused those things which I have known myself by and I realise that for a large percentage of my life, I have come up with some excuse or other for “not being myself today/this week/month/year/decade/etc”. And if percentage wise I’m spending more time making excuses than actually ‘being myself’, then how can I really claim that the me that I am less of the time is the ‘real’ me?

For a large percentage of the time, I have always felt that my life has taken ‘time outs’ and I, the ‘real me’, was just sitting in waiting for whatever influencing factor that was masking me to go away, or for me to finally achieve the back to the real me’ state.

But I must have been mistaken. Because the mask never comes off. It only seems to change. It changes from day to day and year by year. And saying that makes it sound like it really must just be that ‘changing thing’ that we’re all supposed to do as we go through life anyway, but for some reason it doesn’t quite feel like that. It doesn’t quite feel authentic. It doesn’t feel like a natural evolution.

My striving has always been to be my most authentic and honest self, like some mythical, unblemished, Platonic Form or something, to all and particularly to me. However, whereas I used to think I knew who or what that authentic Form was and what she liked and how she thought and how she acted, I’m just not so sure anymore. When do the blemishes become no longer something to sweep away and make excuse for, but become the thing itself? What if all my blemishes aren’t something added to cover up me, but are actually now me?

If you start with a table and break off one of it’s legs, you can probably fix it back on, with the right glue and nails. No harm done in the end, it’s still a table. But once you start to take a chisel to the table and gouge out some big gaping holes, it starts to become something a bit different. And you no longer wait for it to be fixed back to its ideal state, you have to accept that it is now either a sculpture or junk, and not useful as a table any longer.

And lately I’m starting to feel a bit like that chiseled table, starting to accept that there is no ideal Form for me to become anymore. And I’m wondering how much I get to control what the finished sculpture of me will look like. Or do I simply call it junk, throw it all out and start from scratch? But if that were the case, what do I do with all the stuff left over, from everything that has gone before, the thought patterns, the beliefs, the dis/likes, the behaviours?

I think in the end I just have to keep chiseling. But without my Platonic Form to model myself after, how do I know what my eventual goal is anymore?

The window envelope sat on the bed waiting for, daring me to, face it.

“To the parent(s)/guardian(s) of ______ ”

Of course it’s a standard, administrative way to address correspondence to the parent(s)/guardian(s) of a child, but after our/my struggle to become the parent(s) of _____, I’d really rather not be referred to as the guardian(s) of _____.

Call me picky, but. . . some things still just rub the wrong way. some things still hold the memory, and I’d rather not.

I knew what the contents of the letter would be, and I knew I would have to open it. I knew that if I opened it I would have to read it, and I really didn’t want to, but thought I may as well get it over with.

Yes, it retold all the gory details of that unpleasant meeting in May, where it was made perfectly clear that I am completely wrong, though he, our professional correspondant, was aware of how controversial the argument was, though he was aware of how passionately I felt about the issue at hand, and how he could understand how i felt and how stressful the whole thing was, but in the end. . . i was wrong. A room of two senior professionals (one, top in the country), one junior, and another adult all stood on one side of the line drawn in the sand, and I slid my chair back, quite literally, to the other, ganged up on, and standing out. Was I that strong to stand on my own there? Am I still? No, I don’t think I can be that certain. Passionate, convinced, but not certain. This nonconformist not only has a sensitivity to rejection, but a fear of standing alone, and of being wrong.

He didn’t use the word “wrong“, per se, because when it comes to philosophy and ethics, you can’t really, and you can’t prove anyone as being “wrong“, you only really have the majority and what they say to prove your case. But he and his collegues made themselves perfectly clear. No one in this country would support me in my opinion, and as I live in this country, that’s what any respectable and responsible parent/guardian would do. . . in their opinion. And as far as anyone is concerned, their opinion is what counts, as I am not a top professional of this kind in the country, only a parent, for what it’s worth.

I still don’t think he is “right” but he is not “unfair”. I am sure I must conceed. Everything tells me that his arguments are hypocritical. . . but I’m not interested in arguments anymore. I’m done arguing.

Who decides what “right” we have to anything?! He was as much making a decision for her as I was. When it comes down to it, no body has any “right” in this matter anyway, not me, not him, not even HER, as God has all the rights and has made all the decisions already. We simply don’t get a choice. Facts are facts. What right do we have to pretend they aren’t so. Don’t we do a child a disservice in teaching them denial, in teaching them that everything is ok, when it may not be. The line in that sand has a row of ostrich on one side, and me on the other.

But I must learn to quell my passion when it gets shaken up. It would seem that it, the things that it holds to, and I, are “wrong”. And I can’t in all honesty say, swear, that those on the other side of that line are not “right”.

So I went shopping and bought myself a tub of Ben and Jerry’s.

in the field of medical ethics, can i really be in such a complete minority? and does that actually indicate that i’m as wrong as everyone else here seems to think i am? for, when everyone else is actually more qualified than me, do i have a right to differ so strongly in opinion, when it affects more people than just me? but if i do what everyone else is wanting me to do and i don’t feel that it is really the right thing to do, then am i wrong to do it because i’ve not followed my strong gut feelings, or am i right to do it because i’ve followed the opinion of the more qualified majority?

when in the end, it’s not really my decision anyway, i just have to come to a decision to put to the person making the decision which may or may not affect his decision.

i choose ice cream.

i have a friend who used to call me “radar ears”.

that was because i learned at a young age how to pick up on what other people were saying. in case they were saying it about me. because most often, they were.

i would sit in assemblies with my vision turned forward toward the stage and whoever was speaking to us, and my ears focussed backwards towards whoever was sitting in the chairs behind me whispering about me. making fun of my clothes or hair or about how they were glad they didn’t have to sit next to me or talking about who they would invite to their new secret club. . . making sure to say ‘but NOT sienna, OUR club is only for cool people.” whenever there was a birthday party, more often than not, i would not be invited, though the invitations were always handed out right under my nose. there was a girl called A who would rally the troups at the playground. they would sit on top of the climbing frame and look down on the world around them (both literally and figuatively) and she would say “now, who should we make fun of today? oh look! there’s sienna!”

the school counsellor was even called in by a teacher. she pulled me out of class one day and tried to ask me what all the problems were about. i really didn’t have anything to tell her, because i really didn’t know. then she called all the other girls out of class for another meeting without me. to talk…about me. then she had a third meeting with all of us involved, obviously creating a big unhelpful ‘us and them’ situation. (or more accurtately ‘me and them’)

one of the girls even said “maybe it’s because she doesn’t go to church. maybe if she came along with one of our families we’d be able to get along better” well, isn’t that rich?! bullied becasue i didn’t go to church!

so i developed my ears. in a way it was a defense mechanism, but in another way it was a pretty useless one, as there wasn’t really anything i could actually do about it. i supose i always would rather know what accusations were being brought against me than to live in blissful ignorance.

so we all grew up, like all children do, and we all moved on, like all human beings have to, and along with maturity some of those girls are now stil very good friends. (believe it or not, i’ve even had the odd appology as an adult!)

but i’m still pretty paranoid about being left out of a party. and i promise you. . . i still have very good ears!