Tuesday, September 29, 2015

Hell of a gift.

Well, quite the week so far... For the first time in quite literally over a decade, I've had to cancel going to this Significant Thing in another city because, alas, right now, I don't have the strength. My daily life is bathroom, bed, bathroom, bed, bathroom, bed... You see the pattern. I pray that I can spend some time working on computer stuff before I have to pack it in. It doesn't take much... and then bam, I hit the wall, and it's over.

I really should try to work more with the "writing in bed" thing... doing stuff like this from the bed rather than the studio computer, which requires sitting up in the wheelchair which adds to the "energy sucking."

My ever-patient wife prods me, lovingly and often quite correctly, to seek out help-the-handicapped computer stuff... a better keyboard, a better mouse, to remove the failure points and make my computer-using life easier. Perhaps I'll do that today, lying in bed. Or maybe I'll put Cartoon Network on and got to sleep with that in the background. I tend to go back to sleep a lot, at least I want to be comfortable.

It is moon cake season--here in huge-Taiwanese-population southern California, it's definitely time to enjoy moon cakes!
We're having ours with Dark Oolong--perfect for cloudy and cool, which it sometimes is, especially in the morning, and which pairs superlatively with moon cakes.

Well, it's time to head off for Morning Medical (for lack of a better word) Madness, then some breakfast even, maybe I'll try to poke at some music which is hideously overdue to be finished, before I hit the wall and have to pack it in.

And how long will I do creative things before I hit the wall... Who can say?

We'll see how much tea and moon cakes do for me. In the finest of MS-treatment situations...

No side effects.

I spent some time yesterday with someone whom I've known quite simply for decades... He's still working at the school I used to work at, and he told me beautiful stories of the daily miracles of students discovering the miracle of music! And also of what The Grownups have done to the place, and it's quite clear that as painful as my disconnection from that place was, staying there would have been... horrible.

This was quite an amazing gift of MS... it quite literally got me out of hell. The Enterprise couldn't deal with accommodating me and my MS, long and complex the details of said separation may be, but getting out of there when I did? Couldn't have left at a better time... unless you think about "sooner."

But this was the most amazing gift of MS... having no choice but to face and deal with the truth of my current-life situation.

To my gentle readers who are not "accessorized" as I am with MS... this is for you, too.

Face the truth, and deal with it.

A gift of MS for the non-MSified as well as those of us who are ... MS-equipped.

Hell of a gift, truth.


Sunday, September 27, 2015

Very good medicine

Sent some e-mail this morning to a friend of mine from my dim and distant past, who like me has been "accessorized" by a... what Lewis Black would probably describe as a "fuck STUPID" disease. I was e-mail chatting with her regarding medical cannabis.

Self-prescription doesn't always work out well, but those of us who need medical cannabis, and I mean NEED, not just "wanna use," or as Bill Maher put it, "I'm suffering a lot from whatever it is I told them I have..."  But we need to become our own weed masters. Who select and blend varieties for the specific good they do us.

I found a varietal that very specifically eliminates spasticity and leg pain. Other varieties are good for mid-day, others that are good for last thing in the evening.  One thing I'm finding interesting is to explore the labeled-as "hybrid" varieties, or making my own blends--a pinch of this one, a pinch of that one, perhaps a bit of that one, too... Which is especially good if I need a little more support, to feel good about being alive. Right blend clears the darkness and gets rid of leg pain.

Sure beats injectable DMDs that make you sick for a week, maybe feel good for a day, then get sick for a week again. And don't make you better.

But as for the cannabis, I do feel better. It may actually be helping the MS, cannabis is neuroprotective, and CBD (as my cannabis doctor tells me) is anti-inflammatory, both of which are specifically good for MS... And feeling better is good for pretty much everyone.

Side effects? You get munchies, which for someone like me who basically doesn't get hungry any more, is a good thing, or you laugh. Which for me, are the primary effects... the reason I use it.

Laughter is very good medicine.

Wednesday, September 23, 2015

All I got

Got something done this morning,  on wicked-overdue music. Stopped working with it hand control went wack.

Doing this now to practice "not giving up." If you were to see the errors I'm committing and then correcting with errors which then require MORE error correction... you'd see why I give up as much as I do. When "typing" becomes functionally equivalent to rubbing your face against the keyboard, calling it "typing," and then rubbing your face against the keyboard while calling your work "correcting the errors"...

Well, ain't much point to "typing," is there?

I'm pretty much at the edge. All set for back-to-bed. Will I try again later?

We'll see. Probably not, but who can say?

Was going to share something thoughtful.... but rubbing my face on the keyboard and calling it "thoughtful" ain't much help.

May have more tea, osmanthus oolong today! Will go to bed ASAP, may need to do the Cath Thing, may not.
And that's all  I got.

And so to bed.

Because that's all I got.

Wednesday, September 16, 2015

No side effects

Wow, what a Monday-- my wife had a birthday that was catered by a friend of mine who has been a professional chef for decades--yes, ending with an S-- and in my simple little charming mid-century home and its feeble kitchen, oh Lord did he do amazing things.

The menu appears below:

Every serving was "Oh my God!" good, and a testament to its utter amazingness was that every single person there had not a single desire to take a picture of the admittedly awesome offerings.

Vegan (not counting the scallops) and organic. Nobody cared, nobody even noticed, because everything was SO [squeal] GOOD!!!

The gifts continue--today, again we can open the windows and enjoy the breeze, because we're into the low 70's, not the (ugh) low 100s. A lovely gentle rain (of all unexpected gifts) has made the back garden VERY happy--as a friend said, plants like rain better than they like hose-water.

It was glorious to enjoy a fine dinner in the back patio/yard. Being accessorized by my ever-[insert obscenity here]-changing bladder means that I'm not into puling on pants, getting them on and off is a huge problem... Simply covering my legs with a blanket is well into "good enough," and staying at home makes pantless and blanket-only work beautifully.

A really good acupuncture treatment Tuesday. House call, treated on the couch--you gotta love it! But we were speaking a lot about the place I'm in, and maybe needing to cop better to "it's OK to be done with thing X" stuff, and to being in a place where really, all I want to do is lie down and maybe sleep or listen to beloved cartoons with my eyes closed and sleep... I'm not sleep-deprived, I just want to shut off and recover. Not die, Lord no! But just to ... pack it in and rest.

I showed my acupuncturist some favorite moments from Steven Universe. Not moments that are funny, although those are fine too, but mostly I love the "heartfelt" moments of people really coming face to face with truth--which in some circumstances, is also very heartfelt.
I wish I could fuse with my wife... Who knows what might come of it? Oh, there are Greg and Rose stories too, those being Steven's parents--also very heartfelt.

This presents an interesting challenge for the acupuncturist... how to get my own joy to be as heartfelt as that felt by these little painted people. It's a challenge for both the care provider and for myself... to feel like I have nothing at all to strike the flames within my spirit, but to be significantly moved to hear stories about being significantly moved.

Sure I'd love to be out of the wheelchair, but to set my heart aflame and create--that's one of the many significant things I seem to have lost.

Or have  I? Well, even this is hard right now, but in the future--who can say? Well, Garnet can, of course, but that's definitely another story.
And so... a snack, and off to bed. Garnet told some gems one day, "Have FUN!"

That's be another great prescription, no?

No side effects...

Saturday, September 12, 2015

The only option

Got the day started with the Usual Stuff, which worked well enough. Made my wife her morning matcha and delivered it in a tea bowl not a tea cup, which she really enjoyed.
For "afters," we are enjoying osmanthus oolong, a very global and quite charming tea. Tea-wise, it's a good day.

Let's see... placed an order for something, sent an e-letter, am currently typing this. I do still have music to worry about and finish...

But instead, I'm going to lie down. Catch up on missed Larry Wilmore shows, must must MUST catch some favorite cartoons with Wifey, first on the list being this week's new episode of Food Wars and Steven Universe, an important episode where Connie's mom finds Rose's sword...
... which makes mom freak out, lay heavy crap onto Connie, then Connie and Steven save everybody, and Connie finally pushes back against her dangerously-control-freak mom.

And high time for that, too. I expected Stevonnie would be the one to push everybody over the edge, but it was good for Connie to deal with it personally.
Again, this beloved show often comes down to "we need to tell the truth."

Art imitates life.

I keep coming up against this myself, and I too keep coming to the same, well, sentence...

Time to tell the truth.

Ram Dass has spoken of "Love God, and tell the truth," but the major components are "love" and "truth." Being in the MS state has pretty much removed a lot of options that are often quite enjoyable with which I can distract or (too often) delude myself, but time and again, I come to a wall with only one door, and that door, the only way through the barrier, is...

To walk through the door of "truth."

This is quite the gift of MS... to have option upon option stripped from you, until the only one left is...


Wednesday, September 9, 2015

Time to tell the truth

Had quite a powerful acupuncturing yesterday. Some very powerful points, but fortunately not particularly painful points. For example, Spirit Burial Ground--a point they reach for when your spirit needs to be resurrected.

Also a very good talk about coming to grips with the truth of the moment. Some things to which I had to say farewell were surprisingly easy to come to terms with. One might have expected the farewell to the "graduation organ gig, I had to give up playing the organ because (a) I couldn't control the pedals anymore, and (b) I couldn't get onto and more importantly stay on the bench without falling over. And this was a farewell after doing this same gig for forty years. And yet, somehow it was OK to say goodbye.
Partially because not being able to use any pedals was just so unsatisfying... But it was OK, it was time to let it go.

Now, I'm in a different state. A much worse one. The "I can't do this at all" list keeps getting longer... and for certain things, it's just time to come clean; things have changed. Definitely.

Tell the truth with love; very much my prescription this week. The truth has power; the anime Earth Maiden Arjuna (superlative soundtrack, amazing visual design, but for the most part, with a really skanky script) at some point features a character saying that truth has power simply by being true. And definitely, true is definitely true.
So... be true to yourself; be true about yourself. Even if it's hard, be true. And tell the truth with love... even if, and especially if, the truth is very, very, hard.

So hard as this is, this is a gift indeed. I no longer have a choice.

Time to tell the truth.

And yet, the harder it is... speak the truth with love. Face it--yet, still, speak that truth with love.

Tuesday, September 8, 2015

Might even work

Small victories... are victories, regardless of size.

I got these Things from Apple, to do various necessary Things... none of which they seemed interested in doing. Well, I got my wonderful-beyond-wonderful wife to do some stuff tosome cables, and suddenly, The Thing finally works. Now there needs to be another wire located and used to connect Another Thing to something, and I expect Things there will work too.

All this fancy wireless crap, and to solve the problem, all it takes is a particular wire with a particular connector. Low tech works better than High tech. Not just "sometimes," Often.

Ah, for the MS world to be so easily helped by low tech. It often is.. even if I am in the Cath Club, it really is quite low tech. The catheter is basically a straw, with disco ends. But it works, and quite well too... At least, when B-san is interested in being cathetered.

That's something the West can learn... instead of trying to find a hammer that'll squash everything indiscriminately, maybe try cooperating with where the MSer is, here and now. As a friend of mine said he learned at a Zen center, "Pay attention."

O-Sensei, the inventor of aikido, illustrated particular moves while calling them "blending."

Perhaps we could try blending, O-Sensei style, with the MS condition?

Who knows... might even work.

Sunday, September 6, 2015


I had a great talk with a great friend yesterday. I will not attempt to distill it here, beyond this: "Dude, it's time to get real about what your (i.e., my) current state really is."

Alas, my current state is not good.

I'm having an interesting meeting of "giving up" versus "owning the current truth," the difference between good discomfort and bad discomfort; as one Rolfer said of the changes in their treatment methods, "It has to hurt good."

An interesting metaphor... Yeah, it hurts, but it hurts good not bad, which makes it actually kind of enjoyable.

That, I can deal with.

My current state is that things don't hurt good. They just feel bad, the sort of thing that discomfort (especially pain)  is supposed to signal you that it's time to stop doing the hurt-causing thing.  Everybody understands this... Everybody has lived through some version of "I got sick when I ate that, so I don't eat that anymore."

Perhaps I'm just habituated to stay here, "on campus" (my house). Unwrapping why I find [long list of things] unpleasant doesn't tend to reveal ways to stop it. Transferring into a vehicle can be nasty scary, so I don't do it. Which means I don't engage the world. So, the easy answer is, deal with it, dude, unless you want to be imprisoned in your house. Well, I want to deal with neither.

Now that's a conundrum.

I return to my decades-old video-game metaphor... if it takes too many quarters to have fun, I stop putting in quarters. An example: There's a Taiwanese tea shop in town that I adore. They make tea like nobody makes tea. I truly love their tea and the people who work there.

Tea can make me go wicked diuretic, even at home; kidneys have no interest in my convenience. So, if bladder goes nuts and wants to be emptied, theres a significant to-do that needs doing, to sum it up, getting the nozzle into the nozzle.
You don't want a more "anatomical" picture. Trust me.

To sum it up, it's just no fun to do all the stuff necessary to leave the house and try to have fun.

So that's what's in front of me. Do what I can to work on music. Fiddle with computer stuff. Place orders for things that I can get shipped here and thus free my wife from [rumble rumble] having to go shopping. I'm willing to throw non-deliverables like pharmaceuticals (like thyroid pills) into her court, but things that I can get from places like Amazon, I will.

Well, it's not that productive, but...

You do what you can, with whatever you got. It doesn't always work, but it does sometimes.

"Sometimes" is sometimes all you got.