Saturday, March 19, 2016


Had quite the adventure over the past few days.

Thing 1: Went to the dentist, whom I've been seeing for fifty years, yes that's fifty years... anyway, I had some dental work done, absolutely painlessly which was great! But I told him, no mercury! He said they didn't even have any, they don't use it anymore, haven't for quite a while. On the way out, I stop by the front desk, tell them I'll be happy just to pay them then and there, but Desk Person said they don't even have a card machine and they need to send it to the insurer first. Desk Person predicts that they won't pay, because they didn't use mercury--which, of course you know, is quite toxic--but the non-toxic and superior stuff, they won't pay for.

So the insurer will pay for toxic chemicals that doctor says specifically not to use, but won't pay for non-toxic chemicals that the doctor specifically calls for.

This, by me, is not good.

Then, on another day, I had quite a chat with a friend I've had for years and years. And years. And years. But that's a different story. Anyway, Friend is going through hard times, that stuff happens when you get to be Our Age, they spoke of their issues, I spoke of mine. There was a difference... Friend's issues come down to choices. Choose one way, there are costs and benefits,  choose the other there are different costs and different benefits. I suggested they just do the math, count up the cost and benefit, and see what total cost/benefit you prefer. Well, Friend wasn't quite ready to go down that road, but from my point of view, that road has to be gone down, and will be gone down. Easy for me to say, it being Someone Else's Problem.

We spoke of my issues, and I didn't see a lot of choices. It's a true thing that I need at least some supervision  just to be safe... someone needs to be in the house to make sure I don't hit the floor when making transfers, I'm getting better at it but it's really safer to have someone hanging out Just In Case.   My ever-kind and ever-supportive wife has found some renta-care-givers who are truly superior, but there's a cash cost to them, and although they give my wife some breathing space and let her get out of the damned house and not be chained to me for a well-needed break, there's a cost. I've had a completely free and quite supportive friend look after me from time to time, but said friend has landed a job and isn't always available. At all. Same for other friends, who are busy with jobs and such... See a pattern?

I really do choose not to hit the floor, but simply making that choice doesn't always help. Who in a wheelchair wouldn't choose to be able to walk?

So that's the question before me... what choices am I making? Are they good ones? Are they wise ones? What choices am I making that are really and truly my choices? And are they good ones?

As ever...

We'll see.

Interesting stuff the MS Highway puts before us who follow that path.

But interesting... well, we've got plenty of that, don't we?

Wednesday, March 16, 2016

Today's prescription

Here's something for us all to do, gentle readers:

Pay attention.

I am finding that during certain hours, some things work very well, and during others, they don't. Early in the morning, all the transfers from wheelchair to anything else go quite well, quite easily, quite simply. During other hours, they don't go so well and I far too frequently have to call for assistance from a caregiver or my always-amazing wife. Things like move my legs to wherever, help pull up my shorts (trivial to do with two free legs, not always trivial to do with one hand holding me up and one hand on said shorts). Is there something to do about it? I haven't found it yet. But it does keep my attention focused.

And the simplicity of "pay attention" is a good prescription for anyone, MS or not. So, that's the call for all of us, gentle reader, and certainly what I have to do quite soon to do the Early Morning Bathroom Rituals, but fortunately said stuff goes best in the early morning so let's do it and exult in the victories. But before one can rejoice about them, one must perceive them. So, dear readers, i share my prescription with you:

Pay attention.

Monday, March 14, 2016

A good start

Days seem to go somber as I just sit and look at the outside world... I'm going down a very dark version of Memory Lane, remembering day after day of Doing Things Totally Wrong. Having to remind myself over and over of Ram Dass's call to "be here, now."

And a new call to myself, to my own consciousness, something very specific that needs to change.

I need to become unattached to "not caring anymore." Yeah, I still need to unplug about caring about specific moments/people/actions of the past, which are past and gone, very much over and gone... but to specifically becoming unattached to Not Giving A Damn. Mostly about simply being alive.

Living in a morass of Not Caring is not good for me. Or anyone. It's not like I need to become more attached to caring, it's that I need to be unattached to Not Caring.

An interesting call. Perhaps being fully within Being Here Now will leave no room, no purpose, to Not Caring. The active dissatisfaction with simply being alive and somehow wanting that to be different so I wouldn't be mired in the world of Not Caring. Which, believe me, is not a good place.

There's nothing to be done about the myelin "wiring" problems that MS comes with, but malignant Not Caring... That I can change.

And why is that so hard?

Even knowing that, I don't think would make a difference. Gotta change my consciousness, and that doesn't come with an easy method.

What if I start with being Here, Now?

Is that not something I can do, MS or not?

Perhaps I should start doing that... being here, now.

A good start, yes?

Friday, March 11, 2016

My, it has been a while since we e-chatted.

Hm, what's happened?

Had my always-amazing wife take me to the eye doctor, who has upgraded herself to a major new and glitzy office, lotsa screens and not that very same projected slide thing I've been tested with since my first glasses in fourth grade. 1968-ish. Anyway, the upshot is that the eyes pointing in different directions is quite true, doc said that she could fix it with surgery but when, not if, it happened again, it'd be time for the same surgery again which might not work again, so let's not go that route. Which was quite fine with me, I must say. Enthusiastically. She suggested I do what I've already been doing... use a napkin or scrap of cloth and cover one eye, which I'm doing at the moment. Which makes my "seeing" much better, if I use the correct eye to do what I want to do. I bounce the cover from one eye to the other, to keep exercising one eye at a time. I need an eye patch, I guess, like one of the Night Raid characters from the anime Akame Ga Kill.

Sitting here to do this is somehow a lot to ask. Sometimes too much to ask. Or is it? Or isn't it? Hard to know, hard to tell. I would, if I could, spend time getting myself simply comfortable enough to live within my skin, withering as my experience is. Always, always withering... Oh well. That's humanity, life, and age, all pretty much the same thing...

If I can, I'll drop a note or two to a person or two. Since I've been having flashes of living at Yale and in New Haven post under-grad and in the master's program, I suppose I should e-chat with my Yale friends. At least say hello. Someone somewhere on the east coast, I've been nudging with handbell music. Composing has been off the table for a while... I dunno if doing that is a "thing" I still do, that may just be part of my life that's over. For now, at least. In the meantime, enjoy the outside air, things are definitely changing as we approach the season of Wood, which it definitely is, even with the Pasadenan drought interrupted by the occasional raging rain, which my phone suggests will torrent down this evening. Which the plants definitely like, plants like rain much better than irrigation. Which should come down this very evening... we'll see.

But no matter what my emotional or energetic state may be... my emotions are not so bad, usually, energy is pretty much missing, but the smell and feel of the air is wonderful, and neither of those have anything to do with my withering state. So, that remains my prescription... Enjoy what you can enjoy. Doesn't matter what it might be. Even if it's something like the Star Trek movie #1, which as a film is pretty crappy but visually it does have it's advantages. Which I still enjoy. Plus, the soundtrack is pretty cool too.

So since there's so little, as in "nothing," to do about the "having MS thing," it doesn't mean you can't enjoy what there is to enjoy. So, as best you can...