Friday, April 22, 2016

A good idea

An interesting conversation yesterday with a caregiver... I gave my wife some time off so she could care for herself rather than me, and so I had a professional caregiver to hang with yesterday.  (I don't always need lots of "care as such" for the caregiver to do, but if nothing else, it's prudent to have someone who can walk hanging out with the guy who is wheelchair bound and who has found himself "floor bound" too often, it doesn't happen much any more but it's better to have someone there, y'know?)

The conversation often came to things like "What are you really afraid of?" and "Why are you afraid?"

I think I have finally come to a real understanding. I am not afraid of thing X Y or Z happening. It's not about fear. It has never been about fear. It has been about deciding what X Y or Z are going to be like.  It's about stuff like "I don't do things A B or C because then X Y or Z will happen, and I don't want that, so I'll just give up now."

It's not about fear. It's about deciding what is definitely going to happen and then just giving up, because those things are going to happen, after all.

Definitely going to happen is about things like "Don't try to walk because right now, that isn't going to happen." Well, that's why I have a wheelchair, after all. But what's important to not do is to decide upon the future which, being the future, isn't "decidable."

So, what do I need to do, then?

Pay attention. Be here now. Do what can be done at whatever moment it happens to be. "Man up," as the saying goes. Because really, how bad can things get? Looking at my fears and concerns, the worst thing imaginable is, at worst, an irritant. An annoyance. But not a reason to give up.

Giving up is not a good idea. So let's not do that.

And that... is definitely a good idea.

Thursday, April 21, 2016

Simple works best

I did a phone-in yesterday, chatting with a whole bunch of MSers about the life-with-MS thing.

It was quickly quite clear that we MSers have a lot in common. Most everyone, if not absolutely everyone, related the experience of having their ever-so-comfy life go completely to shit once the MS really hit. And ever so many of them were fighting a rather nasty fight with pain, especially lower-body and leg pain, and an even nastier fight with how much of what pill to take when because whatever they were taking didn't seem to be doing much good.

Well, here I am in medical-cannabis California, and I tell the MSers that I just have a bit of the correct variety of cannabis and the pain and spasticity go away. Pretty much immediately. Still hurt? Have more. After all, the lethal dose of cannabis is on the order of forty-plus pounds of "smoke it all at once," so there's basically nothing to worry about. And the right varietal is miraculously effective. So, even though I have pain and spasticity, it's trivial to get rid of them. And I watch cartoons and laugh. Not bad as side effects, laughter and enjoyment and comfort.

So that's my personal take. Western medical world has no miracles. Go get stoned and laugh instead.

Or as a friend of mine learned from his Marine father, don't overcomplicate things. Western meds certainly embody overcomplication...

So I recommend the old reliable way.

Simple works best.

Friday, April 15, 2016


Yesterday, I had a wonderful acupuncture treatment, and later on in the evening, spent time soaking up and grooving on the energy of the season, the energy of Wood.

This is something really, really good to do during this season, MS or not. As the article highlights, the season of Wood is the surging of springtime energy, a time of restart and renewal.

Perhaps I'll try to groove on the energy of the day and express it by simply sitting at my computer and poking at some music stuff. I don't have to resurrect the dead, I just need to poke at the music. Let renewal do its thing. Or, as some friends of mine have said of their own meditational work, do the work and let the work do you.

So, what's gonna happen? As Tolkein wrote frequently in the Lord of the Rings, who can say?

But renewal is definitely worth at least trying.

So, happy Spring to all of us!

Just breathe the air, let the energy of the day soak in, and... as to where it will take you, who can say?

Wednesday, April 13, 2016

MS Message

A call yesterday from the urologist was quite informative.

This whole "nervous system" thing is quite amazing. All sorts of anatomical stuff basically takes care of itself. According to urologist, bladder is as he called it "smooth muscle," has nothing to do with the voluntary do-it-yourself stuff that arms and legs and such are all about. Internal pressure sensors in the bladder go off when bladder is full enough to set them off; the only voluntary muscle is the one at the urethral sphincter, which at age 2 or 3 or so we figure out how to control enough to not leak and to void bladder when we choose to.

But us MSers, we have bad wiring, so all the nerves take care of stuff on their own doesn't work so well.

My own experience with bladder stuff, being in the Cath Club and all, is all about cooperation. As is my experience with transferring from wheelchair to wherever, even for things like going down the ramp to the back patio and getting into the sun, because at some point it requires going back up the ramp, which either someone pushes me up or I just go for it and do it myself. Which after I do the Hard Thing and go up this one Hard Ramp Place, everything works pretty reasonably. But it's at some point all about cooperation.

I haven't figured out the "cooperation" thing for the "sitting at the computer and doing stuff" thing. I suppose I sort of have... There are times like now that tend to work, times like later that live in the "don't even try" zone.

Cooperation is definitely a "thing" to work on. And it's about time to leave the computer and go sit in the bathroom to do morning bathroom stuff that works best in the morning. Well, I got that down at least, but how to work music stuff into it... that's going to take something else to do.

An important thing to work on. Cooperating with myself. Hell of a new MS challenge, eh? Pay attention and act with love?

An interesting "MS message," eh?

Tuesday, April 12, 2016

Challenge enough

An interesting question, asked by a rabbi delivering last Sunday's homily at All Saints church in Pasadena. 

The rabbi asked, "What is your story?"

Interesting to be asked of this particular MSer (me), who right now isn't exactly sure what the story is.

Well, I can talk all sorts of neurological stuff. Challenges with the catheter as I make my way through the cath club. Being basically wheelchair-bound. Nowadays being kinda lotsa bed-bound.

But none of those are my story.

I used to be an organist, still would be minus the wheelchair and bed and such. I'm not writing new music, read that rather as "any" rather than "no new."

Is that my story? Everything that I once was is gone? I don't think so, and I sure won't fight for "loss" to be "my story."

But honestly, I don't know what "my story" is any more.

Maybe that's how I'm being called, wheelchair and bed and catheter and such and all. To be open to simply find what "my story" is.

Certainly, I'm, getting a lot of practice in simply noticing... The time I spend on the veranda outside, just noticing how the sun is rising differently every day, how the scent of the air changes, every five minutes or so.

Is that my story? Simply to learn as Ram Dass says frequently, just to "be here now?" 


Perhaps that's my task... simply to be aware.

Challenge enough...

Tuesday, April 5, 2016

Not bad at all

Had a charming talk with a fellow friend of mine here in Southern Cal, someone I used to work with and whom I've known for decades. I remember the birth announcement of his second child, now twenty WHAT years old? Wow..

Anyway, he said that a little news of my experience with medical cannabis should be shared, so here I go. I find that it helps me simply to be comfortable... Reduces or eliminates pain, reduces or eliminates spasticity. I've been experimenting with the differences between smoked and eaten, and the latter can't be titrated but a little experience shows when and how much of what works best... and so, there we are.

If you are like me accessorized with MS, I strongly suggest you try it. I dunno about what it may or may not do for the MS process itself, although I have been told by my medical caregivers that cannabis is neuroprotective, which I definitely need, but as to its effects on me?

Fabulous, and certainly gentler than the DMDs promise to kark you up. And really, something to add to the enjoyment of listening to beloved cartoons, movies, music even... Given the way MS stuff has racked me up, comfort and enjoyment are...

Not bad. Not bad at all.