the last burnt sienna crayon

It’s perhaps ironic that the subject that I have been chewing over in my head for awhile now (to speak or not to speak/the nature of talking and vulnerability) is beginning to “take voice” at the same time as my decision to give in and make an appointment with the speech therapist.

I lost my ability to speak once in an MS relapse. I mean that I lost the ability to control and use the muscles around my mouth and throat, not my will to. The only person who could understand what I was trying to say was my husband, and that took a little while. The sudden removal of my ability to communicate verbally with others left me a bit shell shocked and terribly frustrated and it left the others i tried to speak to simply stunned, sad and not knowing how to respond to me. I will always now have the possibility of problems with the muscles in this area as there is now scar tissue/inflammation in that area of my brain. (My current decision to refer myself back to the speech therapist is because of the number of times I find myself choking on my food and drink recently. Had a particularly frightening episode last night.)

But that’s not exactly what I’ve been thinking about on the subject of ‘talking’. I’m a pretty chatty girl, and in many ways, I wish I weren’t. I really wish I didn’t feel such a need to express what goes on in my head to people, mostly as I’m convinced that people don’t really want to know (which is perhaps why I blog it instead, if you didn’t want to know, you wouldn’t click! And besides, it keeps me quieter in ‘the real world’, therefore avoiding that whole “did I just offend you? What did I say wrong?” feeling that I’m so good at creating).

I wonder how I would adapt if I lost my ability to speak again, I rely on my words so.

I remember deciding to go to my weekly Bible study one week during that relapse, even though I knew I would not be able to contribute in any useful way. Unfortunately, that evening the study dissolved into argument and bad feeling around a particularly heated discussion on the Pauline teaching on women and I felt completely helpless. I watched my friends saying things that upset each other and upset me terribly and I felt completely helpless, both in my ability to express my thoughts/feelings and to wade my way through the murky waters. I felt out of control of my relationships in the midst of bad feelings, and I didn’t like it one bit!

I rely on my voice to ask questions, to discuss and to understand the people and the world around me. I rely on my voice to try and make other people understand me. Without my voice there would be a barrier between you and me.

Silence generally makes me uncomfortable, visible and vulnerable (although talking makes me feel pretty vulnerable too, so I guess I can’t win). I feel a perpetual need to fill the gaps when the conversation stops. I often feel a great responsibility to carry the conversation, to be interesting or funny or witty (which has been more difficult lately with my aforementioned cognitive issues). And I have an inordinate fear of being misunderstood, so I say as much as I can to explain myself, as I have learned over the years that words and actions that seem completely natural and normal to me, aren’t natural or normal to most everyone else in this New World. So I talk, perhaps more than most, to attempt to explain, excuse and exonerate myself, to prevent such possible misunderstandings (I am still floundering in my “two countries separated by a common language” cultural divide).

And besides all of that, I love conversation. I love connecting with other people and finding out about them and sharing something of myself, and I can just never figure out when that happens to be a welcome thing to others and when it happens to be annoying. I just don’t love being dissolute, obtuse and irksome.

I guess I feel if I’m uncomfortable in the silence, then whoever I am with must be uncomfortable too.

Apparently, that is not true. Apparently, there are people, who find silence a normal and ok thing. I guess I didn’t grow up that way. So I am trying to curb this need to speak. Apparently it’s not always polite, where I live now. I don’t like to annoy people and like Eliza Doolittle taking lessons in how to be “a lady”, perhaps I should try a bit harder not to say so much. Perhaps only speak when I am spoken to??

But on the flip side, and perhaps from a more positive perspective on the subject, isn’t silence between friends an indication of security and to be valued? Yes, I am certain that and a balance between the speaking and the silence is the ideal and to be sought after. This will come, perhaps slowly but surely as I learn to relax into my life more.

However, for now, the thought continues to occur to me that I have not been able to find that balance yet. The thought continues to occur to me that I had better work harder at not saying so much, for I would rather be heard through my silence than ignored through my words; I would rather be conspicuous by my absence than invisible by my ubiquity.

Somebody gave me something.

And they were always quite clear that I might not be able to keep it. They said that I could only have it if I was fully aware that the something might change or even be taken away completely. And I agreed. I knew it was more important to have the other things that went along with that ’something’ and to just enjoy the ’something’ for as long as I could. The whole is more important than the part, and I know that.

But that was before I had the ’something’, that part of the whole. That was before I fought to have it. That was before it became the most precious thing to me once it was mine, and now I don’t want to give it up. Now because I fight for it still and sometimes win, now because in my failure I don’t always value it as I should and when I don’t I regret it, now because I love seeing it more than anything else, now because I have a choice whether or not to put the effort into the fight to bring out my ‘thing’, I fear the day that I may not have it to bring out. It is the most beautiful thing I have ever seen and I love it.

I might not have to give it up, all this worry could be for nothing. And ‘they’ could warn me, ‘they’ could let me know if I have to. ‘They’ could tell me that I never have to worry or think about such loss again, or ‘they’ could help me prepare for it, quite easily ‘they’ could open the future, but ‘they’ won’t allow me to. ‘They’ tell me that it’s wrong, that I should just enjoy my ’something’ for as long as I can and then deal with it if it happens. ‘They’ tell me it’s the principle. The future was never mine, nor is it any of ours, to know. Even if we could.

But I find myself like a dragon guarding my treasure and lashing out at anyone who threatens to take it away prematurely, even for a moment. I want to keep my ’something’ and there is nothing I can do about it if I can’t. And I agreed to this, this contingency. I always said that it was better to have loved and lost than never to have loved at all. But I never knew.

I never knew what a wonderful, valuable, precious, intoxicating ‘thing’ a smile could be. Someone gave me a smile, only for a time, maybe, and it’s not the only thing that counts, and the value should be on the whole treasure, not just the gold trinket. I know it’s selfish to want to keep it when it might only have been a loan. But the truth is, I don’t know how to let it go. I didn’t expect to be so impractical.

I’ve had a rough afternoon. I’m not going to shout about it here, in fact, I am learning more and more that, especially in regards to issues like these, where I must stand alone in my opinions, but find a way to stand up for them all the same. It is best not to say anything at all. I know it just invites invalidation. But, once again, my definition of what is right, doesn’t match everyone else’s. But I still think it’s right.

I’ve had a rough afternoon, and the love I feel for my daughter has almost never been stronger than it has been recently and my wanting the best for her has almost never been stronger, and my fighting spirit, like that Momma bear protecting her cub, has almost never been stronger. It’s just hard when a mum defines ‘the best’ differently to how everybody else does, when they simply can’t see what I’m talking about.

But then I’ve felt a bit lately like someone who has been trying to cope having lost one of their senses that they usually rely on. I’ve felt a bit lately like I’m not ‘clicking’ with other people quite right. I’ve felt like I’ve lost my social awareness. I’ve felt a bit like an alien again.

I’ve had a rough afternoon, and all I can think of is this song. And reading it, I am crying again. And I haven’t actually done that in awhile now. Until today.

Flowers are Red
by Harry Chapin

The little boy went first day of school
He got some crayons and started to draw
He put colors all over the paper
For colors was what he saw
And the teacher said.. What you doin’ young man
I’m paintin’ flowers he said
She said… It’s not the time for art young man
And anyway flowers are green and red
There’s a time for everything young man
And a way it should be done
You’ve got to show concern for everyone else
For you’re not the only one

And she said…
Flowers are red young man
And green leaves are green
There’s no need to see flowers any other way
Than they way they always have been seen

But the little boy said…
There are so many colors in the rainbow
So many colors in the morning sun
So many colors in the flower and I see every one

Well the teacher said.. You’re sassy
There’s ways that things should be
And you’ll paint flowers the way they are
So repeat after me…..

And she said…
Flowers are red young man
And green leaves are green
There’s no need to see flowers any other way
Than they way they always have been seen

But the little boy said…
There are so many colors in the rainbow
So many colors in the morning sun
So many colors in the flower and I see every one

The teacher put him in a corner
She said.. It’s for your own good..
And you won’t come out ’til you get it right
And are responding like you should
Well finally he got lonely
Frightened thoughts filled his head
And he went up to the teacher
And this is what he said.. and he said

Flowers are red, green leaves are green
There’s no need to see flowers any other way
Than the way they always have been seen

Time went by like it always does
And they moved to another town
And the little boy went to another school
And this is what he found
The teacher there was smilin’
She said…Painting should be fun
And there are so many colors in a flower
So let’s use every one

But that little boy painted flowers
In neat rows of green and red
And when the teacher asked him why
This is what he said.. and he said

Flowers are red, and green leaves are green
There’s no need to see flowers any other way
Than the way they always have been seen.

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.

i’m not ready to talk about my trip yet.

patience. i’ll get there.

just wanted to bump up this post, as i was interested to see if there were any further thoughts out there. thanks to chas and smudgie for comments so far.

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.