Thursday, December 31, 2015

Enjoy it

Had a nice visit yesterday from a student-turned-friend long before the "student" thing was over. He was among the anime-loving that I would hang with... Friday afternoons, I would show anime to the kids, because who could complain about that? There's no tutoring Friday afternoon, there's no "why aren't you home doing homework and studying the day before the weekend," we just watched cartoons and had tea and enjoyed life.

Not a bad Friday afternoon.

He shared some quite powerful changes some of our anime-loving number have gone through; his mom also came over to pick him up, we all talked about some College Things that the college counselors never really talk about when prepping high-schoolers for the change to that particular world.

One thing I told them both was that Guy in a Wheelchair can tell you right away... Things do change. Us MSers will be very quick to tell you... oh boy, do they change.

Tomorrow, it's gonna be January 1, and Pasadena goes whack for the Rose Parade. We may get some sort of airplane flyover, which can be seen easily from across the street. My wife and her mother have in the past actually taken the trouble to visit the parade route, but winter colds have "told" them that watching it via broadcast (webcast, in our case) is the Way To Go tomorrow.

Although I do miss the Goode Olde Days when the folks once in Firesign Theater would simulcast their own commentary over the radio; watch channel X and turn the sound off, listen to radio channel Y and listen to them, and dang it was great!

And here's your brain popper for the morning. Today is the first, and only, December 31 for the next 365 days. Today is a new year. The calendar people want to make a big deal of tomorrow, but today is technically, and actually, the first day of a year.

So, happy new year!

Enjoy it!

Sunday, December 27, 2015


In the "liturgical" church world, it's still Christmas, and will stay that way until January 6th, the feast of Epiphany. It is still a time for joy. Not for shopping or decorating or... you know the list.

Now, who couldn't benefit from that? Y'know... Joy.

A superb Facebook post (sorry, don't have it at hand else I'd point you at it) discussed the difference between "taking" and "giving." Happiness comes from "taking," as in "I wanted This Thing and I got it so now I'm happy." But meaning, meaningful-ness, being meaning-full comes from giving. Giving doesn't just do "poof, now you're happy!" but and you can do it and not "become happy," and yet somehow... it's better.

Giving, even us MSers can do. Sit with a friend. Make tea. Listen to music... listen to your friend. A particular person called the other day, worried about his mother aging and all that comes with it and who is not doing well with it, and he reached out to someone whose life is also going in dark places health-wise (that'd be me), and maybe I could help her deal with it because I seem to be doing better with the journey?

Just listening is giving. The sort of giving that even us wheelchair- and more-than-a-little bed-bound can do with trivial effort... and joy.

My amazing and wonderful wife has her mother visiting for the holidays. We are blessed not just by her mom's boundless humor, and my wife's boundless love and happiness to have her mother here, but mom will do things like pop off to the store or wash a few dishes... the sort of things that give moms happiness just to do. Giving, y'know. Something moms are really good at, the "giving" thing.

Karen takes her mom off one afternoon to see some really really cool stuff here in Pasadena, and a friend of mine comes over to hang with me so they can feel free to pop off and not worry. Said friend I really enjoy hanging with each other, and yesterday I had him go through some vinyl records I keep carefully, including oddities like a recording of Fred Blassie singing "Pencil Neck Geek," stuff I don't even remember hearing, like the one labeled "Tupelo Chain Sex," Rufus Harley playing jazz bagpipes (you should hear him do Windy)... and a recording of a jazz version of Pictures at and Exhibition that as far as I can tell may not exist anywhere else besides that very record. I sent him home with it to enjoy on his record player, which he too has guarded jealously. I make him a cup of tea. I send him off to the neighborhood Starbucks for some ground coffee, which he puts through my French press (I got a lot of fun cooking gadgets), which he loves using and thinks makes a really good cup of coffee.

Zero cash exchanged. Well, I did buy my friend a hamburger for lunch, but he was the one who went down the street to pick up lunch for us both. Cash-wise, I don't think any of this counts.

But you see a pattern, don't you? Meaning comes from giving. Meaning reaches within, in a different and more profound way than just "happy" does.

And this kind of profound meaning is nothing that being nastily MS-ified stops from happening.

So, MS friends, there's your zero-side-effect prescription for the day. OK, I guess there is a side effect...


Thursday, December 24, 2015

A merry Christmas, indeed!

So many of the MS Blog community will, from time to time, talk about their holiday preparations... Got the cookies ready, making some beloved dish for the family, going out to see folks. That sort of thing. The wonderful, and very joyful, magic of the season.

Well, what have I been doing? Besides lying a lot in bed, which ain't too holiday, even if I am occasionally watching Christmas Carol?

Well, let's see... I sent music to churches quite literally all over the country--Virginia, Texas, Oklahoma, Massachusetts, a few more, it's a bit of a blur... Ordered Christmas gifts to be delivered to the other side of the country as well as here at home. Saw a friend whom I can very rarely see in person, who happened to be here in southern California and could actually visit! To celebrate, I made one of his favorite teas--pu erh, of course. Not the stuff of Victorian Hallmark Christmas, but quite nice for cold weather and great for your health any time of the year.

So, I want to gift all of you with some music, my dear readers! The "proper" for Christmas Day, the text you're supposed to use if you're in the formal-liturgy world, is "Hodie, Christus natus best"-- today, Christ is born, today the savior appears.

And so for all of you, here it is, an excellent 2013 performance by a really really really good orchestra and choir.

Have a merry, merry Christmas indeed!

Tuesday, December 22, 2015

Sol in solstice

Today is the winter solstice. Astronomers and astrophysicists and similar folks can tell you exactly when UTC the solstice occurs, but here in dark cold and wet Pasadena... It's the solstice. Given how overcast it is, there's no Sol in solstice, as far as I can see. Which ain't much with this cloud cover.

Many spiritual writers of many pursuits speak of how the darkness comes  so that the light can return.  This is true metaphorically on n anatomical level; you eat only after you're empty, you can't fill if you're already full. Biology and gastronomy and spirituality: When all those tell you the same thing, best to listen.

And so it is with us on the MS Highway. The number of things we have each lost due to this neurological nonsense, if written on just scraps of paper, could cordon the planet. Each of us has lost things that were very, very close and precious to us. And they're all gone.

And yet, the darkness means that light will return. These can be very dark days, sometimes very dark,  yet the promise of light remains with us.

So then, this is what lies before us, this particular day.

Look into the darkness without fear, without darkness within ourselves, and see the light that is already there.

There is a Sol in solstice, after all.

Friday, December 18, 2015

How's that working out for you?

Had a wonderful, wonderful, acupuncture treatment yesterday. For those of you who fear the pain that might (must? or so you fear) entail... First, some acupuncturists hurt a lot. Some hurt a lot. But this one doesn't. There are always points that are going to hurt anyway, and we all have our list of them, but most of the time, there's no pain. Some times the brain interprets the signals it's receiving as pain because it has no other way, but one can train one's self to experience it differently, and it can be quite nice, actually. Except the points that just plain hurt.

We also had a very good dharma talk, about (among many things) what I can call most quickly "keeping grudges." Such-and-such group did me wrong (or so I feel), even thinking about said Group sets me off sullen/mad. I can't quote het correctly, but one of her thoughts boiled down to "How's that working for you?"

Clearly, it's not.

I am reminded of Dicken's Christmas Carol, the exchange between Scrooge and the ghost of Marley. Marley says of himself:
"I wear the chain I forged in life."... "I made it link by link, and yard by yard; I girded it on of my own free will, and of my own free will I wore it. “ 
Well ... clearly, that's me too.

Another good thought: That was then, this is now.

Today, I am typing in today's way. Today, I am using the music software in today's way. Foaming about how this ain't the way it's spoze to be, this ain't the way I've spent years getting good ta ... the list just keeps going on and on.

So, today ... I'm going to do what I can the way that I can. If a small and easy change will make things better at all, and the change is "makable," make it and keep moving.

I had an idea (for example). Note it. If I have the strength to start it, start it. It really really doesn't matter how much gets done. Just do something. But only what can be done, in the way it can be done.

And really, what does it profit me to wig out over how I can't do it like I used to?

Well, age does that at its own speed, as apparently does my neurological nonsense. And spending what little time I have at raging at those two?

How's that working out for you?

Thursday, December 17, 2015

Then and now

After many sessions of "cutting stuff loose," and more still to come, yesterday there was a moment of wonder...

A record... a VINYL RECORD that has to go on a turntable... was unearthed from the carefully stored record collection. All sorts of records are still there, but I found one that is very, very precious to me.

I'll futz with the color & such, but you get the idea. It's a recording made by the Yale Band in something like 1981. And on the record is a track from their performance of a transcription of Respighi's Church Windows. And on that very track is what may be one of the only if not THE only recording of me playing the BFO, as I used to refer to the Big F... Organ, in Woolsey Hall at Yale.
It was a life-changing performance. Absolutely everything changed that evening. Everything.

I'm having it digitized so I can share it, and I'll share it here when it's ready.

Am I attached to it? Hell yes. But this one time... it's kinda worth it.

It was fun, dammit!

The good part is that nowhere and never do I go into "Oh, I used to be so good at XYZ" and all the regrets left in shards for one to trip over. It was fun, it was amazing, it was unbelievably major, and ... it's over. But None of those things matter. If there's anything I do not need to be attached to, it's how now is not then. And of course, presuming that this makes "now" horrible. Actually, the moment then made now amazing.

And which of us need to live in the world of regret that now is different from then?

Then provided me exactly what was necessary to create now.

Being accessorized with MS was provided then, to create now. If my time with the concert band and the BFO, worked that way, shouldn't the MS Journey?

A very, very trusted friend once said "You needed to get MS."

So, then, this is our mission, not just for us MSers but for us humans...

Enjoy the amazing that is now. Because it is amazing, if you can only see it.

It's right in front of us. Should we not, then... enjoy it?

Sunday, December 13, 2015

Good place to start

Another interesting journey with that amazing whatever-it-is that we call "attachment."

I invited the son of a long-time friend of mine to raid my costume closet. I have (and as you might guess, now "had") a lot of great and marvelously interesting things to wear... Indian kurtas, tails in both black and grey, lots of Renaissance-Faire gear, some really obscure ties. And that's only the beginning... I wasn't a hoarder, but I was definitely a collector and user of fine costumes.

I told this young fellow that although us MSers are encouraged to "never say never," I had to be honest, that there was a mathematical truth to the non-zero probability that I would be wearing all these things again when I got out of the wheelchair, but it would take someone like Astrophysicist Tyson to calculate them.
What was most interesting, on the spiritual path, was what things I was absolutely NOT willing to give away. My opera cape, black with red lining, which I got in high school as a tribute/emulation of Virgil Fox. Notorious cape-wearing organist. My wooden tie (pine, with hinges). My transparent tie with a cow on a beach under a palm tree not on, but in it. My "Romeo jacket," a Ren-Faire classic. The trews that I had made.

I guess it's the ultimate attachment, to want to keep something and have it displayed at your own funeral... My wife offered to bury me in it, but I said that just toss me off the side of the ship or some such will be far cheaper and easier to deal with, but yes, please display my cape and my beloved K-Zildian cymbals at my service. Which at least I don't think about taking with me to the next world, Egyptian-Pharaoh style. At least for them, you paint stuff on the walls for them to get in the next life. Well, that's the vast majority of afterlife goodies.

But yes, I am still quite attached to glories of my past adventurous life.

Thus it also goes on the MS Journey. But often more subtly, maybe sneakily. I used to type 100 words a minute, which meant that when I wrote stuff, I didn't just write it, I "firehosed" the text. Lots and lots of text! Huzzah! Well, given how I [monstrous air-quotes] "type" nowadays, that ain't happening. And that bothers me. Oooh, write a book on my experience with MS, as some have suggested. Not gonna happen. "Just talk it in, edit it later, don't worry about typing," They say... It's not the way I think, having done massive writing on the computer for decades, and every author will concur that the key is not writing but rewriting, which takes typing. And here we are again.

Am I painting myself into a corner? Perhaps, but the typing problem is indeed the way of things, right now. The wheelchair is the way of things right now... things change. Not always in fun ways.

At the end, what am I left with? What is there to DO?

Tell the truth. Cop to your own issues... no need to justify anything, just tell the truth. It's horrible, it pisses you off, it's a hammer-blow to your heart, but speak the truth. At worst, you let the steam out of your head. And who needs to drag a grudge around? Life in a wheelchair is interesting enough as it is.

Yes, indeed... truth. Tell the truth, and tell it with love.

Good place to start, indeed.

Friday, December 11, 2015

Acceptance vs. cop to the truth

A superb discussion post-acupuncture yesterday; my acupuncturist and I were talking about the difference between denial and acceptance.

As it turns out, not counting the national pastime to which I have elevated denial, I don't seem to accept acceptance. I don't really know what it is, and it doesn't really mean anything to me.

But as I told her, what makes sense to me is an old, I think 1960's era term, "cop to." Sometimes, you gotta cop to the truth of whatever it is. But at the core, it's all about truth.

Speaking universal cosmic truth is most often out of my pay scale. But speaking the truth about my internal state... that's doable. Perhaps too doable. Sometimes not so much fun, but doable.

But an internal conversation about my relationship with [whatever] that centers around the truth of where I am in said relationship... that's what's important.

Simple things like "X makes me happy," "X hurts." On the bottom line... we are called to tell the truth.

I am (or so I've planned) hosting a friend's college-age son, who's about my pre-wheelchairified height, to raid my costume closet. There is at least one thing I'm not quite able to give up yet, but let's tell the truth here... There is a mathematically non-zero chance that I'll want to wear it again, but that number is very, very small. Very small. And so, the truth is that it stays in my closet to maintain the delusion of wearing it again, or it goes to someone else who then becomes happy.

And if stuff doesn't get chosen, it goes to someone else. Because overstuffed closet or sharing happiness, really, is that a choice?

That you might want to look at yourself in the mirror and justify its virtue?

Truth. Might as well try it, why not?

Thursday, December 10, 2015

No matter what size

A completely new adventure!

Caregiver extraordinare / wife found me a life coach whose area of expertise is musicians. I've had exactly one session and I'm already benefitting.

One way to sum up her coaching points is that when there's something that's in the way, or something that's in the "can't do it" stack, why not, oh heck, try something you CAN do. Doesn't matter what it is. Just do what CAN be done, and just leave behind that which you can't.

A very good lesson in, among other things, "pay attention." If I'm paying attention, I see what works. Who cares what doesn't? Ram Dass has often written, if you're putting so much thought into how things are "supposed to be," you'll never see things as they actually are.

And things are already better. I have been having successes! Not the monstrous ones I used to, but that was then, this is now, and they were nonetheless successes.

I'll take 'em, no matter what size.

Monday, December 7, 2015

Tradition continues

A new project today! Someone is coming by to chat about music with me... Business-y stuff. It's gonna be interesting... I have absolutely no idea what's going to happen. Just like, y'know, life.

I just sent some music (score and parts, for the performance of said music) to some folks in Tulsa, OK. A couple of days ago, I sent music (again, for performance) to these folks somewhere in Arizona. Great thing, this Internet!

Before being accessorized with a wheelchair, I had been an organist since... oh my, 1973. You can tell I'm a music guy first and a business guy second... I got the music ready and delivered before I go to the trouble of cranking out an invoice. You can really tell I'm not a business guy because I describe cranking out an invoice as a "trouble."

And another project, not as fun on paper, at least... gotta find substitute caregivers for time my wife needs to be somewhere else than within care-distance of me. I'm gonna go to my First Call Guy first, but we'll see where it goes.

Anything else worth reporting? Besides Tung Ting oolong (or "Dung Ding" as this firm transliterates it), which I heartily recommend for pretty much everyone... nope.

But the tradition continues...

No side effects!

Wednesday, December 2, 2015

What a way to start the day

What a great way to start off the day! A couple/three cups of matcha, then I use what little typing power I have to write to the mayor of Pasadena telling him to back off the cannabis-purveyor nonsense.

Apparently, the City wants to discuss removing permission for cannabis purveyors to work here in Pasadena. Not enough people are being "medically helped" by this "medical marijuana" nonsense, or something like that.

I told him that I have MS, I am confined to a wheelchair, cannabis significantly lowers my suffering... and what good does driving off the cannabis purveyors do for Pasadena? For anyone?

State of California says I can grow it in my back yard. But the city doesn't want to OK its sale.

Alas, I did have to say... from my point of view confined to a wheelchair, whoever thinks they are making things "better" are delusional. Drive the cannabis purveyors out of Pasadena, and I or my caregivers have to get it somewhere else. Which I can. And have. And will.

And thus spend no money on goods and services here in Pasadena. Great idea for the city, huh?

Perhaps we haven't seen all the bodies strewn on the streets by medical marijuana because of all the bodies covering the streets from being gay-married.

What a way to start the day.

Saturday, November 28, 2015

At the end of the day

The big excitement of Thanksgiving was the arrival of my parents from Conway, South Carolina. Here we are sneaking a moment in Nuala's Garden, out back:
No Black Friday anything. We all had better things to do.

Such as sleep. Which the three of us often did, snoozing in the afternoon.

And having Dad take Mom to the front yard, where today... we have roses!
And some very interesting chats. Dad clearly is resplendent with what the Three Treasures herbalists would call "Radiant Health," but Mom ain't doing so good.

She doesn't walk as well as she used to; she says her best "walking" is pushing the shopping cart in the market, which she likes because the cart assists her. Guy in Wheelchair, that'd be me, knows all about walking issues and the evanescence of mobility; wife and I both suggested a Translator, as the device is often called, a wheeled walker that can also be a transport chair.

Mom has been especially having difficulties with not being able to help people as she once did. She was a "circulating nurse" in her earlier years, a primary-school teacher for what, 40 years? And he life was really engaged with just plain helping people.

And now, she is the one who needs to be helped. Which for her, is completely foreign territory.

Boy, do I know how bad that feels. I was an organist since the age of 13, a high-school teacher for gobs of years, a percussionist and singer and writer of music. Here I am playing the largest organ installed in a church in the world.
But not any more. I won't say "never again," but certainly... Not today. I can't even get onto the console, much less sit at it without falling off or even operate the instrument.

Mom's "today I can't" comes from age, mostly. She's 83, I think. Here's her 30-years-younger son, in pretty much the same "not today" condition.

We had a good talk, a very good talk, plenty of snoozing while she sat in the chair next to me snoozing in the bed. I showed her some Steven Universe that makes me happy,  didn't even take a lot of effort to explain what Gems and fusion were. (My great joy in this cartoon is not the details of what fusion is/does but in the sweetness of Steven for Connie, and Greg and Rose falling in love. Who fuses with who is not that important, it's just a vehicle for self-discovery. Like the saga of Pearl and Sardonyx... but that's a long story._

For both of us, and I would offer that all of us in the MS Club, the challenge is really a change of consciousness. We are each called to do... well, something, and what that something is. is individual for each of us. I'm still working on what I'm being called upon to do; one of Mom's tasks is not to give to others, but to give in the act of receiving. To be one who is helped, not to do all the helping.

The challenge we each face is our very special challenge. MS is just a part of it, for us MSers, but there's plenty more to dig through.

But at the end of the day, as Ram Dass often writes...

We're just walking each other home.

Friday, November 27, 2015

Now THAT'S a prescription

Congratulations to all of you, my dear readers, simply for surviving Thanksgiving.

My parents came all the way from South Carolina (nearly on the Atlantic coast) just to hang out with me. Which, given my current condition, involves a lot of sitting and sort-of talking. But that was just fine!

Goodies were provided by various places off site, my wife took my dad out to pick them up; Dad was amazed to see how much downtown LA has changed since he left, so many more tall buildings eclipsing the famous city hall tower, which a friend of mine always called "the pointy building."

He said nothing of the Triforium (brightly colored thingamabob in the foreground), but neither does anybody else, nowadays.

I introduced my mother to the cartoons that bring me such joy, about which she knew nothing. The joys of Steven Universe, and the many really dear moments where the characters quite clearly care about, and for, each other. They love each other; they'd even die for each other.
Took a while to explain Gems and "fusion," but I think she got it.

Mom's something like 84. She's definitely on the "boy I'm getting old" track... She sleeps a lot, she had no interest in seeing the sights of Los Angeles, she doesn't walk so good, doesn't need a wheelchair but does avail herself of them. 

She's basically going through a lot of what me, the MS Guy, is going through. Thirty years younger, and all. Oh well.

She has been talking about "maybe this is the last trip," or of there's another one, she's not sure when or whether it'll happen.

Dad's doing great. He spends every day being chased by, and chasing even, the grandkids. His cardiologist told him "If you don't want to come in, come see me next year."

Now that's a prescription.

Tuesday, November 24, 2015

That would indeed be nice

It has been a great joy to see the work of my fellow MS bloggers returning to these pages. Zone. Whatever. But we're all still hanging in there!

Let's see, parents are coming to visit this week.  Wife is going nuts getting the house ready, which I of course can't help her with. Fun fun fun. I'll be getting house-call-acupuncture. Which is nice, but doesn't help deal with the house.

I did manage to order a new shredder from Amazon this morning. Well, I guess that means I helped? Sort of?

Still watching cartoons when I can. Typing & "do something productive" stuff, that ain't happening right now. And my favorite cartoons are fun, but the new stuff, nobody knows when it's coming out.
And that's definitely the MS Road. Things are going to change. Nobody knows when.

A friend of mine who does the "caregiver" thing from time to time, giving my wife a break, said that from his reading about MS, nobody knows anything.

Yup, that's pretty much our world.

Steven Universe said one day, that it sure would be nice if things work out like they did in cartoons.

Yup. That would indeed be nice.

Saturday, November 21, 2015

Far better than nothing

Yesterday, hanging with a friend, I was asked to describe my MS experience (physically at least), so here it is:

Imagine yourself having drunk too much alcohol. Except, your mental faculties are completely unaffected by whatever you had to drink. Your mind is perfectly, completely, untouched. Everything else, physically, is all bunged up. You can at best sort-of walk, maybe not stand up at all, can't control your hands and arms or... anything, really.

And physically, that's my world. Brain works, body doesn't, and there's not a damned thing to be done about or with it.

Oh, Lord knows there are plenty of other issues... how much time do you have, dear reader? More than I have in the "being able to type/talk about things" department, definitely. But in a nutshell, that's my physical world. In a word, it sucks.

My friend said he had been reading up on MS, and that it was quickly clear to him that everybody who has been accessorized with the MS stuff gets a unique-to-them version. Everybody is different, and nobody knows anything about how to take care of that many completely different people; or in other words, every person with MS is different and the medical world is completely lost.

Welcome to my world, I told him.

But as I also told him, boredom is not one of my problems. Same thing may go wrong every day, e.g., issues with B-san, Mr. Bladder, or "Alan" as I call him (who is basically just a balloon, a character in the cartoon Amazing World of Gumball, which is functionally what the bladder basically is, anyway), but it's always a unique experience in the working with the external and internal equipment. Kind of a meditation, it can be, working with all the various components and getting them to work together. Cooperation in the catheterizing process is quite a significant contribution to success and comfort.

Saw some videos about doing transfers from the wheelchair to the fill-in-the-blank. The car, the commode, the bed, just a different chair. And yet again, being an outlier puts me in a challenging position... All the tools and techniques seem superbly suited for, if not designed specifically for, someone who is in a wheelchair because they're fully paraplegic. I, of course, am sort-of-plegic... I can get myself from the wheelchair to the commode in my house using my legs to get me from place A to place B, and I have arm bars and other stuff to make sure I don't collapse but I do have to make the transfer using my legs. For which I am really grateful, to not be completely paraplegic, but it does involve a risk of hitting the ground, which thank God I don't do any more. Much, at least. And won't, insh'Allah.

And off to the next bit of the morning bathroom adventure... and then if all goes well, breakfast, and then back to bed. Make morning tea for wife. And that's pretty much it for the day.

Well, right now at least...

At least I got that much.

Far better than nothing.

Monday, November 16, 2015

Pretty much the usual

And so we begin the wind-up to many special days.

And no, I'm not talking about Black Friday. In this internet Amazon-rife world, getting Christmas gifts runs pretty much 24/7, 365 days a year. Figure out what you want to get someone, order it online, tell the online folks when you want it delivered and whether you want it wrapped. Which kinda thing is really, really welcome to folks like me pretty much living in a wheelchair.

Actual Thanksgiving is a lovely holiday. My folks are coming from South Carolina to spend it with me and my wife. How and whether I'll be even able to leave the house much less eat a nice big dinner when I rarely want much if anything... Those we'll deal with when we get there.

Football games... as a Yalie, I only care about The Game, which is how us Yalies refer to it, the Yale Harvard game, which is the longest on-going college football game in the world; it has been ongoing since 1875, which makes it 140 this year. A bit of a shock, I was there for #100... I don't want to watch it. they never televise it and live-blogging or not, they never cover the marching band show which, besides the final score, is all I care about. And part of the yearly ritual is to try to tip the hat to some Harvard grads without gloating if Yale wins. All our problems should be so silly.

And the ongoing life in a wheelchair. Which is kinda weird, actually, seeing things from wheelchair perspective all the time shows you pretty much everything differently. Not like the MS Journey doesn't...

But the kicker for this Game following Yalie is the weather. iPhone predicts something in the mid 40's, which ain't so bad, but considering that during my years, we had to take the entire marching band into the (fortunately ample) men's room so that the valve oil in the brass instruments would un-freeze and allow the instruments to play... oh kids today, they don't know what they got.

Any other MS news? Well, I still got it, it still does amazing things and simultaneously sucks.

Pretty much the usual.

Saturday, November 14, 2015

One thing at a time

Yesterday was... as the friend who helped me survive it called it, "Memorable."

I used to go "off campus" (leave the house, bed, property, everything, and go out into the world) all the time. Certainly hugely more frequently when I was still driving, but even after that, I still went into the world not infrequently with my wife, for dinner or shopping or whatever. But getting out of the house just doesn't happen much, or  "at all," any more. A lot of it is vague leg pain and/or spasticity, plus staying near to the bathroom because B-san, Mister Bladder, or "Alan" as I've come to call it (him), does what it wants not what I want.  Yeah, sometimes it's OK but I never know what's really up. My last contact with the urologist involved him talking about "Well, with MS, stuff like that tends to happen." That's definitely high on the "Oh well... Sigh... " list.
But much of what was so very difficult yesterday really encapsulated the reasons why I stay home all the time. In a word, transfers.

Moving from the wheelchair to pretty much anything can be quite a paradigm "unpleasant experience." For whatever reason (I'll come back to that), circumstances seemed alas-inevitably to a world of "I can't." It inevitably involves what walking people would call foot drop, but in my case it involves the foot sliding forward off the foot-pad at the front of the wheelchair. Which inevitably happens when I cough or spasm and the legs just kinda fly about, but on my "A" wheelchair, I can at least drag my feet backwards fully onto the pad. I sometimes envy one of my fellow MS bloggers, Nicole Lamelie, in her "My New Normals" blog, has an amazing picture of herself on a wheelchair, but said chair has great foot-pad stuff plus her chair doesn't lead with her toes, it leads with a wheel, so if something's gonna run into the wall, it's gonna be the chair not her toes. It looks like a chair that requires more room than my poor little house provides, but it does look cool.

But anyway, back to the nasty challenges of The Day. My friend, who was truly doing the Lord's Work yesterday, had to do lots of ineffective and scary dead-lifts to get me out of the chair and onto some other surface, like say a bed because I was nasty fatigued and needed to rest. But at the end of the day, I absolutely would not go to the place of "never again," but I'm definitely in a very clear and definite "not today" place. Not dark, not despairing, but definitely, not today.

I had tried to involve my friend to do some "training trips" because my parents are coming like 3,000 miles to have thanksgiving with us, and I'm sure it would be less a source of despair to go to a nice restaurant that we all enjoy than to spend every minute of every day beside my might-as-well-be-hospital-bed.

But what was really, really interesting was after a day full of "oh sh*t I can't" was my return home and maybe it's time to cath myself and there was absolutely zero problem making the transfer from the char to the commode seat, and back. Absolutely zero problems getting into and out of bed. Zero problems. What tend to be the usual "oh well" moments that require a little foot adjustment manually was as challenging as it got.

As I think about the whole thing, quite gently and calmly, it comes down to leg strength/coordination and--here's the big one--arm support. My "B" chair goes into and out of the trunk/back seat/whatever with no difficulty, but the "A" chair has no-tip-over bars sticking out of the back of the chair that make packing it, and pushing it (which I sometimes really need) difficult for short-armed pushers. But it also is clearly The Chair for chair-to-car transfers. And if you were to look at my at-home bathroom, it's all about transferring using both arms to provide the real engine of supporting the transfer. There's just something about the ergonomics of the "A" chair that make it possible to put the chair in the perfect place to kinda push myself up until I can grab onto the roof of the car or the door or whatever, but then I am in total control, such control as there is. The "B" chair is just off enough to make it impossible to use both arms to share the support; one just won't do it. And the "B" chair is very poor at staying out of the way enough for care-giver to deadlift me out of the chair and stick me into the car.

So, what's the moral of the story? Well, beyond getting a zero-transfer just-push-your-chair-in van, which I'm really not at all excited to get because I just finished paying for Karen's lovely little Prius, insane low-amount-of-gas using car, and I have little interest in buying another. Which can't fit into the garage with the current Prius. And I sure as hell have zero interest in buying a new house to fit the van that I have zero interest in buying. As Finn the Human said on Adventure Time, there's gotta be another way.

So, the gift of yesterday's MS experience was: Remove things that make your life difficult, use things that make your life easier, live with what you can't remove. Such as the nasty fatigue I seem to be immured with, nowadays, the seemingly constant "I need to sleep now" that seems to be filling my life. When my life isn't filled with bathroom-centric challenges. Which it also pretty much is.

But... One thing at a time. And certainly, one ting you can change at a time. Because trying to change things you can't change is not a path to happiness. Or, in a single word, "Duh."

Friday, November 13, 2015

Don't need an astrophysicist

A gently powerful acupuncture treatment yesterday. Among many poetic points was one called "Assembly of Ancestors," who are called upon to support you.

And I really do feel better, supported even, today. Doesn't have much to do with neurological nonsense, but this morning at least, I feel like I'm definitely doing better.

Have no idea how this stuff works. But as Ruby on Steven Universe said, "Don't know--don't care."
Exchanged some notes with a Olde Timey College Friend, who is going through her own medical issues, with added bonus of not-quite-experienced-enough doctors who assured her that certain procedures weren't much but when it was all over, caused her hours if not days of nasty pain.

At least our MRIs don't hurt. They make a lot of weird noise, but at least they don't hurt. For days.

Oddest "WTF is us with that?" moments over the last few days, could be age as well as The Disease. I find reading text on my iPad to be vastly easier than from a book, which makes me sad since I have my friend's latest book and am having problems reading it. But at one point, I tried covering just one eye... covering the right made everything clear up, things were great! And here I am at the computer typing this, but to make things easy enough to read comfortably, I'm using a napkin between my glasses and my face to cover my... you guessed it, left eye.

Things are cooling seriously off here in Pasadena. Yesterday when I got up at 5, phone said it was 38 degrees. outside.. hell of a long way off the 100 it was a couple of weeks ago. You take what you can get, right?

There is magic in the fall, and a different magic in the winter. There are many things we MSers can't do, but feel the magic of the season, that's definitely still within our reach.

So... as best you can, connect with Nature. It's really quite amazing... As many astrophysicists will tell you, "Nature is more imaginative then we are."

Don't need an astrophysicist to tell me that!

Wednesday, November 11, 2015

Kino's Journey, always ongoing

Quite an adventure yesterday: I hit the floor again, in a completely new and different way... The wheelchair tipped forward while I was trying to pick something up off the floor, I slid off (also forward, sorta) and the chair went backwards.

My dear and wonderful wife had to find a neighbor to help pick me up, but with her amazingly fast Internet research, she found a video of "picking someone off the floor" using only two people... and it worked, very well! Took a couple of tries to get right, but when they did, it was great. I'm back in the chair, no serious nasty effect taken from the experience, and I was able to recuperate and actually have breakfast (which had been on my list before "It" happened).

And yet, I went to my usual place of "Actually, this ain't bad!" I'm lying on the floor while Karen is doing her best to find help, I look up and see a window, which I look through and say "Looks like a very clear sky today! Wonder how warm it's gonna get?" Not so bad, lying on the floor as I may be, at least I'm enjoying myself.

Is this not a challenge us MSers (us humans) face all the time? Something bad happens, and yet we can find something beautiful. Honestly beautiful... and honestly enjoy it.

Be here now, as Ram Dass has said for many years. Sometimes the here and now sucks, but it is beautiful at the same time.

It's Kino's Journey all over again... The world is not beautiful, and yet... the world is beautiful.

Monday, November 9, 2015

Hell of a disease

It has been a few days, hasn't it? What has been going on? Sure, I could say "Same s--t, different day," but that's both glib and wrong.

I haven't returned to the writing, or arranging, or working on the actual creation of, music. Did have a few ideas about a big-Christmas-service postlude, how to make a favorite carol sparkle with organ and brass, what carol to use... Maybe a 6/8 instead of a 4/4, how would I make that fun and celebratory for the organ, to start with?

I gotta say, hell of a lot better thing to worry--even to think-- about than whether I have enough catheters before insurance decides that I need them... Oh, I so do not wanna go into the duel with the devil. Some wisdom traditions refer to "the devil" as ahriman, the Adversary... But whatever one might say about these people, and anyone who interfaces with them at all much less regularly, putting adversarial imagery into one's consciousness can't really be helping. At all.
Giving them more power is a bad, bad, idea.

In better news, the last few days have been completely hit-the-ground free. Never even close! Got a request for some music from some nice folks in Texas, a high-school teacher even, we enjoyed a couple of brief but I'm sure filled-with-smiles exchanges about the joys of living in that particular world. And it is a joyful place indeed. When your mind rests not on interactions with middle management, a universal horror, but on the sparkling light of the young ones discovering the magic within themselves... it's a truly beautiful place, indeed.

Middle management cannot even conceive of the real magic that we do. I got to school late one day, found that one of the faculty had somehow hit the ground, paramedics were called (everyone was OK, in the end, nothing Truly Bad happened) but the kids were of course freaked out.

I told one of the little ones (this is "little" for high-school, remember, 14 years old maybe) that she was eternal, we are all truly eternal... but this thing we drive around in, this body and all, that's temporary... and nobody likes to be reminded of that. So here I am, a guy in a wheelchair, telling a beloved student that she is eternal, it's just this body that's temporary, it has issues, nobody enjoys that, but... eh, whadda ya gonna do? That's a Life Lesson, isn't it?

Good to remember that when you're wheelchair and often bed-ridden. Eh, it happens. I am and always have been an eternal being of Light; this body's issues are... feh. A temporary inconvenience.

MS as the doorway to see what is, at one's core, eternal. Light.
Hell of a disease, ain't it?

Saturday, November 7, 2015

Today's prescription

Interesting, let's call them "issues," are so thick they're seemingly impenetrable.

Is it The Disease? Is it Age? Is it just Mortality? The "things just stop working sometimes" that is part and parcel of this incarnation?

Are any of those things treatable? At all?

Well, mortality sure ain't. Nor is age. Nor, apparently, is The Disease no matter what Big Pharma will tell you.

So, what do we do, then?

Well, I guess... live?

What other options are there? (They usually look pretty dark, as you consider what options there are, which were aren't any of.)

Well, that's sure a bright way to start the day.

About all I have left is be comfortable, as best I can. Achieve what I can achieve with what tools I have. When I can. Which isn't often nowadays, but do the best you can with what you have.

And laugh.

As the Reader's Digest told us years ago, laughter is the best medicine. So, there's your prescription for today...


No side effects! Go for it! And besides...

it's fun!

Tuesday, November 3, 2015


Change of seasons comes when it wants to. Here in southern CA, it has changed from whack hot to whack cold. My MS experience has vacillated from heat-sensitive to cold-sensitive; as I'm trying to type right now, I'm definitely cold sensitive. The heater in the bedroom I can adjust because the thermostat is accessible from my wheelchair, but the one in the living room can only be reached with long arms and standing up. The first I can do, the second, not so much. I'll have to get a long-armed friend to come over and poke at it, at which time it'll probably run hot again. For my convenience.

I have been enjoying, yes enjoying, my sensitivity to things, watching my wife. She's my caregiver, and a generous one at that, but she is radiantly beautiful. She's my Flame Princess, always sweet, always regal,always beautiful.
Beauty surrounds us. The list of things I can no longer do changes daily and grows ever longer, and exposes many issues to deal with. And yet, there is beauty.

As the series Kino's Journey often said, the world is not beautiful; and therefore, it is beautiful.
Of course, Kino had a talking motorcycle, but still... The world is definitely not beautiful.


It is.

Sunday, November 1, 2015

Small gifts are still beautiful

The nation has survived Hallowe'en again. I suppose... but then again, I have far better things to do than go spelunking for sadness. Photos of niece and nephew were dangerously adorable, I might get another cute pic in the next few days. We had no visitors, but then again, our neighborhood isn't a "kid" neighborhood, maybe teens both at the low numbers and the high ones, none of whom (at least in said This Neighborhood) they have little interest in wandering the streets to get candy.

Even on that magical night when, as the Venture Brothers show so eloquently said, we discover... ourselves.
Not a lot of MS-y stuff to talk about. Organ system X seems... disoptimal in a new and I wish I could call it "inventive" but more usually in a "withering" way, hand control is not always doing well, when they work (under control) at all which sometimes doesn't happen,y'know, the whole "withering disease" thing.

Is there anything good? Where are those "gifts" you've been promised?

Really, really experiencing the outside world, gently but inexorably (I don't really need "inexorable" with MS, but the seasons don't do the "withering" thing at least) changing from autumn to winter, or as the Five Elements people would call it, from Metal to Water. Which change is actually quite beautiful. Seeing how the change in the overcast into clear puts really cool solar energy into the solar-powered lights that twinkle so beautifully at night, and how the morning clouds foretell the evening twinkling. (As I write this, pretty darn overcast so no twinkling... yet.)

Being MS-ified does a lot about "temperature sensitivity," I've become both heat- and cold-sensitive, and really experiencing the differences if I approach it with open arms and open heart is a gift I never truly experienced before I was... accessorized with MS and the wheelchair.

Using that sensitivity to see how beautiful my wife is both wearing her Fancy Duds and a towel over her head post-shower, is really, really, beautiful. And don't worry dear, I have no pictures to post; poor manual coordination means I don't wander around with my phone snapping candids at just the right (wrong) time. What energy I have is spent primarily on enjoying... you.
So, happy November! I hope the quotidian life-stuff goes well--paying bills and the mortgage, the sort of stuff I do immediately first thing in the morning on the 1st of every month, notes with friends or for those of you still pursuing such things dealing with home-based business whatevers, maybe even some creativity, even in a small way.

Small gifts are still beautiful.

Saturday, October 31, 2015

Adventure enough is, well...

Well, it's Halloween as I write this, or Hallowe'en if you want to spell strictly,  the evening before the day the Catholic church ages ago dedicated to all the saints, so all-hallows (all saints's) day gets all-hallows evening, or all-hallows-evening which became hallow-even or hallowe'en.

Or, if you prefer the Celtic calendar, tonight will be Sambhain, or as more people spell it "Samhain," gotta love those crazy celts and their wacky spelling and pronunciation. (Used to be the name of our cat, now of blessed memory, but that's another show.)

Sambhain is the time that the veil between worlds is at its thinnest; a good time for scrying, fire ceremonies, and other celebrations and mysteries.

Ah, if life with MS could only be handled with a really cool fire ceremony. I don't think even Burning Man can do it.
Festivals or no, times are dark, if you don't mind the metaphor. I had a friend over yesterday, when I booked him I had hoped that it would be a good day to adventure off-property, maybe get some lunch while we were out. Nope, yesterday was a stay home and pretty much stay in bed. Sleep if I can. My friend was over anyway, he's an amazing caregiver, he was perfectly happy to poke at his own computer as he fought with the state's something-or-other system, watch the occasional cartoon--he really loves Rick and Morty, and I'm so happy to share it with him because I love it too.
But my life is basically get up, enjoy some time in the Cath Club clubhouse, go back to bed, listen to cartoons or YouTube--I've been digging the "Crash Course In..." series--and try to sleep, if I'm lucky. I have zero interest in eating (it's no wonder that I'm 130 pounds, if that), I'm usually sorta kinda willing to sorta kinda try and at least eat something, but it's tricky to find what will interest me that is also accessible to my fading manual dexterity which is also actually nutritious. Breakfast is easier than other stiff, lunch is always the feeblest eating.

Lord, I never thought I'd come this way. Who can predict where having MS will lead you? I knew before I got The Diagnosis that my legs were on their way out, but zero creating and zero leaving the house and zero "go have fun" adventures because I just don't have the oomph for them, and even matcha doesn't help.

Earlier this morning I placed an order for this really really cool kind that comes from Munich, Germany. I don't really count ordering from German websites as an "adventure," although it is one, in its own way. Kinda.

I made a call yesterday to a longtime friend affiliated with This Important Place. Said place has developed... issues... that I'm really glad never came my way. Not all adventures are worth having.
But, as Alton Brown often said, that's another show.

So, the small morning victories...  write a blog post, send a note, place an order. Make tea, set up for making it for Karen when she gets up, go start the morning Bathroom Stuff. Come back to the kitchen, make and have breakfast, go to bed and stay there until the Cath Club calls for attention. See to that, then go back to bed. Repeat the last two steps.

Enough adventures, transferring from the wheelchair to the bed or the commode. Which, given the times I hit the floor because my legs gave out under me, is adventure enough.

Adventure enough is, well...

Not just enough, but plenty.

Tuesday, October 27, 2015

Your choice

Seth Godin's marketing (not MS, hoo boy, not MS) blog this morning talks about "Bravery is for other people."

I suppose people might call my attitude towards the MS Experience as "brave," but basically, what else do I have to do?

My transfers from wheelchair to commode involve doing my best not to hit the ground. Is that "brave," being willing to kinda get up and kinda walk sorta with each hand firmly contributing to keep moving? No, it's do it or don't make it to the commode; basically, there's no other option. I can freak out, or I can keep not hitting the ground.

I am reminded of the time I was on the back of a motorcycle and my friend (the driver) gooses the bike up to 80MPH. Shortly, he stops by the side of the road and says "Most people freak out when I go that fast, but you didn't."

I said, "I figured that anything that detracted from your driving, like freaking out, would be a Bad Thing. So I didn't."

Apparently, nobody had ever done that before. Not freaked out to make things better for everyone.

And during the not-freaking-out adventure, it was kinda cool, riding at 80 on the back of a motorcycle.

So that's the lesson for this morning, MSers. Find the fun. Or find the funny, because there often is something very funny about the moment.

So, freak out, or enjoy the ride? Laugh, even?

Your choice.

Saturday, October 24, 2015

We take what we can get

Massively huge difference yesterday.

In the company of a very strong, resourceful, and patient friend... I went "off campus."

I left the house. Got into a car. Was driven to a nearby, but different city. We had tea, and I kinda ate something for kinda lunch. (Disinterest in food has been happening for decades, so that wasn't a "feature" of yesterday's adventure. Besides, the leftovers await me for lunch today. Which, I expect, will be quite enjoyed... at least, a little.)

Then we got back in the car and went to a herb shop, which as my aforementioned amazing friend described, had some really amazing stuff. I used to swear by a place in Santa Monica, but this is (a) wicked closer and (b) wicked better, I think this is a change we definitely gotta work with.

It took a wicked lot of energy, and for various reasons we were off-campus during the Great Weakness hours, 1-ish to 4-ish in the afternoon, which meant my getting into and out of the car involved Said Friend basically dead-lifting me out of the wheelchair and getting me back into the car. But we made it. I made it.

We also agreed... we're doing this again. It was, on the bottom line... fun.

We may be able to fine-tune hours of going and being off-campus, anticipating the "I really need to lie down and close my eyes and go into neutral" hours that have been arising every afternoon, regardless of location.

But it was HUGE to leave the home property.

Whatever it was that I had been fearing... it didn't happen. Yeah, we need to fine-tune things, but going off campus is at least doable.

Lunching off campus isn't really a good idea yet, but going off campus... that's doable.

My wife may not be the best person to do the transporting, with me needing to be dead-lifted out of the wheelchair when my leg-strength goes away during the mid-afternoon low times. But leaving the house is definitely doable, and doable with at least a little enjoyment.

We take what we can get.

Thursday, October 22, 2015

From time to time

The saga continues. I hear that the conference that I usually speak at, open! has been progressing apace, and it seems that the hotel hosting it is of course celebrating Octoberfest and trashing the whole facility, adding beer and bratwurst of course, excusing the trashing of everything.

This bit... I don't miss.

Insurance nonsense continues... I gave up hoping for insurance to come through, I sent a message to doc about "Is this 'keep trying different prescriptions given that we already know which one works really a good idea?' especially the bombardment of cruft I get from the MS Pharma world, offering different things that will make everything better and then don't, but they sure cost a lot, like $100+ per day for the rest of your life, what a great idea, what about THAT one?

This "keep trying stuff when we already know what works" thing falls into the category of "What, are you high?"
So enough of that. Time for more tea.

My wife has found some interesting "get friends to help" apps on the web, when they work out (or don't) I'll share them with you, for those who need or want friends to help folks like me (us) who too often need help.

But... from time to time, who doesn't need help?

Well, those of us who still have problems fusing... We don't have it as easy as some do...

Wednesday, October 14, 2015

We'll find out

The recovery from our dear little cat's transition is moving ahead quite well. Wife and I still see and/or think of her as we trundle through the house, but we're both doing OK. Karen reminds me that she's had some sort of Special Pet Friend since pretty much middle school or thereabouts... pretty much non-stop; a brief pause after the transition of the beloved pet, and then another one sought us out. So, we have a very good track record of Animal Friends and Us finding each other, so hope springs eternal. It's gonna be fine!

Another call to the urologist's office to try to sort out this prescription/insurance battle. Apparently, it seems, I need something called "pre-approval" before doc can even ask about whether said drug is OK to prescribe. I don't get this at all... isn't the whole "prescription required to dispense drugs" thing essentially, at the bottom line, about "approval?" Doc has "approved" of me taking this, and has moved onto the next stage: wanting me to take it.

But no, some nameless faceless entity who has never met me and knows nothing of me or the history and details of my interactions with various pharmaceuticals, They have to Pre-approve before the person who actually knows me is allowed to do what he knows will actually help me.

"Helping the patient" seems to be not a goal of The System.

... Great. ...

There is a special place in Hell for those who chain up the system to maximize profits at the cost of... everything else. At the cost of the patient's health.

Primum nihil nocere, the Hippocratic Oath requires. "First, do no harm." The insurance company is practicing medicine without a license and breaking the First Teaching of medicine: First--literally, first-- do no harm.

So... they suck. Moving on.

I've been enjoying new powdered green matcha tea that I picked up from Germany, of all places. I'll probably zip off to make some for my wife, then off to the bathroom for the Morning Bathroom Stuff. A story you don't want to hear more about. Trust me. I also paid the final installment for Autumnal Fun of Property Tax stuff, so that's done.

Who knows what the day will bring? Phone predicts gentler weather today, I'll see if I can plant something in Nuala's Garden (the name we have chosen for the backyard plant glory). I'll see if I can maybe type something from bed using my nifty bluetooth keyboard with my iPad. Get something else done, maybe? Or give up now, because I'm already starting to run out of juice?

We'll find out...

Monday, October 12, 2015

On we go

Things are going well after the farewell to Nuala. Both my wife and I are dealing with Our Things in our own way, and that's OK. It will be a while before we hear (think we hear) a noise somewhere in the house and think immediately that it's the cat; Karen says she has gone through the house looking for the friend she can pick up and cuddle and... the little one isn't there. At least not in a cuddlable form.

The usual "final cleanup" things still get seen too, each in their own time. The cat food in the refrigerator, Nuala's bowls of water that haven't gotten picked up, washed, and put away. Yet.

As I told our vet on The Night, "I didn't cry over getting MS. I didn't cry about not being able to play, or even sit at and operate, organs any more. But I am crying about my poor little cat." It was a hard night, and continues to be hard, but gradually the "hard" is backing down.

And now, we return to the standard make-you-scream fights with the insurance company. The pill my doc wants me to take works far better than the one the insurer wants me to take, but of course I don't need the one doc prescribed. I need the other one. I'm gonna call doc's office today and see if he can do anything about it with them;  he told me he has this kind of fight all the time.

What a great way to spend the fleeting moments of our lives, here on this little earth. Fighting with the insurance company that, apparently, cares not a whit of anything besides their bottom line. Which I understand a company cares about, but really? Telling me that I don't need the drug  the doctor says I need and that is tested and proven to be a superior help.

I don't need it... Really. Do tell me, how do you know? Do you even know what I look like? Or what I look like when I have to deal with you people?

So, then...

On we go.

Sunday, October 11, 2015

Well done, MS

This to some may be off the "what's up with your MS?" mainstay of MS blogging, but I need to share this, at least...

Yesterday, we set our precious little cat free from her old, frail, and failing body. She loved us, and adored being with us; but oh, as all us mortals eventually come to the same place, she was pretty much done with that old body, time to cast it away and be set free.

We thought that a very poor final gift was to put her in the box she hates, drag her to the office she hates, and have her last experiences in this mortal coil be unpleasant... But instead, we took her to the back patio. Karen made the whole back yard shine with beauty, putting candles out and even some roses, sent by a friend's daughter (who may not have had any idea of what was planned) that just lifted us all.

We were graced by Dr. Robin Holmes, of a group here in Pasadena called Gifts of Peace. Karen quite correctly told Robin last night, "You're a pastor." She ministered to us as well as the dear little cat. I'm sure many of my readers aren't in the Pasadena (just east of Los Angeles) are, but if you come to this difficult place, you want people like her to help you.

A very hard time, a very beautiful time, a very precious time. Wheelchair and all mattered not a bit, and being "disabled" actually enabled me to cradle Nuala in my arms and let both of us be at peace with... everything. We MSers are ... inconvenienced, let's use a gentle word, by things like wheelchairs, but last night, it didn't matter.

Today is the first day since we moved in here that we haven't had Nuala with us. She loved it here since the day we brought her over, she had spent her life as an indoor cat before, but when I showed her the cat door, joy simply radiated from her--"You mean I get to go outside?"

There is but one more thing to do, to close out... Robin will bring ashes back in a special, and beautiful, box. And, as I promised and Robin agreed... then we'd have tea, and celebrate together.

So what were MS's gifts, in this intense time? Being able to hold the cat and not care about anything because the chair was holding both of us up. Living in a world where I have immediate, personal experience of "this body ain't nothing" and feeling that the truth of the moment, and the touch of the warmth of spirit, is what really matters.

Well done, MS. Well done.

And so the next chapter begins. As I said to Nuala last night, I won't say goodbye. You'll be back... after all, she already is. Somehow, somewhen, somewhere.

And when we reconnect... we'll both purr.

Saturday, October 10, 2015

So, physician...

So the saga of the 19-plus-year-old cat continues in an unusual way... My wife took her to a Special Animal Doctor Place yesterday, where they did all this stuff and such, but my wife described it as a very dear, caring, gentle place.

Not like a human doctor visit, eh? I mean, one's MD may be gentle and kind, but the waiting room? Full of happy patients and their caregivers? No wall-mounted TV saying that "If you die, ask your doctor if XYZ is right for you," or any of that nonsense.

Apparently, the doc told my wife, those happy people and animals are all chemo patients. Ever hear of human chemo victims being radiantly happy?

Apparently, doc said, they don't use even close to the nearly-killer dosages they use with humans. Their goal is not to eradicate the disease, but to keep it contained. And, more importantly, to help the animal to live comfortably.

Now that's a goal, ain't it? Live comfortably?

My personal MS experience, and let's be honest, everybody's MS-experience is personal and completely unique despite maladies we share ("Everybody with MS goes through this," my urologist told me about joining the Cath Club), is that nothing helps. Nothing makes things better. But there are things to do that increase comfort... Take a little of these herbs, have some tea, keep the air conditioning going at whatever level is comfortable, pet the Cat while we still have her, listen to things that warm my heart.

Comfortable is a very, very worthy goal. Which having been attained, is darned comfortable.

Now, how would the western "treat MS" world be different if the primary goal was "get the patient comfortable?" I certainly don't think being ravaged by DMDs that do nothing but make you feel worse counts as "comfortable." As certainly, allowing one's self to sink into the mire of "it used to be so wonderful before The Disease" or whatever, that certainly doesn't count as "comfortable." That, at least, is non pharmaceutically treated: Change your consciousness and your world changes.

Try that, DMDs. Bitter, moi? Probably. Definitely...

So then,  "changing consciousness" to increase comfort...?

No side effects there...

So, physician... Heal thyself.

Friday, October 9, 2015

Why not us

Had a truly wonderful acupuncturing yesterday. Not nasty painful or anything, and when these five-element folks really connect with you, you feel great. I'm getting to the point where I start to feel great before the needle comes out. Not always, but often... More each time.

Had wonderful talks about the sorts of things that are, to my perception, actually getting in my way. All she did was listen, she offered a couple of suggestions, but mostly it was listen. No judgement, no here's how-to-fix-it (even though I don't really understand what it's about), just listening. Very reassuring, very supportive, and who knows? Her next idea may be the thing that really gets things changing. We'll see.

Dropped a note to a college friend of mine, his wife has The Disease, but she's doing good work in, his words: "Engaging the world." This is very hard for me... engaging even the world of my home and studio is too often beyond me. That was very much the topic of my chat with my acupuncture-caregiver yesterday. I try to do X, and here's how it fails... here's how I fail, let's be fair and accurate.

I blame little to nothing. MS isn't something to blame; depending on whom you ask, it doesn't exist--the Chinese say it's just the name us westerners give our symptoms, but there is nothing extant behind those symptoms. Naming it and blaming it gives it power, and who among us needs to give power to things that don't exist?

My dear wife is having to deal with our beloved cat who's clearly coming to the end of this part of the adventure. She's 19 and a few months, which web-friendly cat-age calculators says she's starting to edge up to the high 90's in human years. Things stop working (well, I certainly know how that feels), and I feel so bad for my poor wife who not only has to be caregiver to failing husband but now has to run around with Cat to radiologist, oncologist, the list keeps expanding. And we both have to deal with the Usual Question about how much cash to sink into the aging cat, and the inevitable confrontation of "Yes it's expensive, but not trying is something that will have too high a cost, too."

We MSers deal with this ourselves. New MS drug, they say. Costs a million dollars, they say, for the rest of your life. At least we get to see that other people try it, it doesn't work, so there's no point in coughing up the million bucks.

Doesn't that make us feel better?

Actually... no. But it does save us money. Which we'll then spend on the Cat, it would seem. Or not. We'll see. But we can definitely do whatever it takes to keep her happy and comfortable, so that whatever time she has with us will be enjoyable.

And if that's good enough for a cat...

Why not US?!?!?!?

Thursday, October 8, 2015

In a word...

The cool and wet seems to be getting replaced by the dry and hot. Again. Well, that's LA for you.

I'm getting an acupuncture treatment at home later today. You can't beat house calls! I miss my Olde Time Guy, with whom I still stay in contact, both as an MD and as a friend, but the new person is gentler and has a different spin on her treatments, which is working out well for me. And she has a young one who likes Adventure Time and Steven Universe, so we're in very good shape there!

Did some business that needs doing...first installment of California property tax, for example.

I'm finding that I'm still dealing with electronic business pretty well... property tax, mortgage, DWP stuff, car payments, those all go well. People ask for music, I send it--just sent something to Kansas! But I don't do at all well with the "put a piece of paper into a folder" businessy stuff... find the right folder is somehow very challenging. Thank God for automatic payment systems via the web! They make everything so much simpler.

Fights with the insurance company continue. The usual nonsense, I say I need this, doctor who prescribes it says I need it, insurance company says I don't, I call the doctor, he says dammit yes he needs it, insurance says no he doesn't. I suppose when all insurer really wants is to collect money, e.g., I pay the insurer, they pay out nothing & therefore get more money, it's a great gig, I guess. Cash-wise, at least.

Dropped a note to an old college friend of mine who recently got diagnosed with breast cancer, kinda bad but kinda not bad, at least not the almost-kill-you-with-chemotherapy kind; we've been chatting about the various kinds and benefits that cannabis can provide. We used to do a lot of it informally in college, so it's not a vast gulf to jump, but us MSers know this all too well. Will Thing X help me? Who can say? Well, try something, did it work? Can't really say...

In a word, it's very...


Monday, October 5, 2015

Amazing symptoms

Keep your mind active, They say. It's important, They say.

Well, here's a way to start off the day, exercising the mind. Quite something to do so casually, knowing technological history a I do...

This morning, I ordered some extremely high quality Japanese matcha from a company in Munich. Website is entirely in German. So I had to figure that out, using what German I remember and some poking around a few dictionaries. It may arrive 10/15. It really is a great way to start the day, and the Germans have beat the Japanese at their own game. It's quite lovely stuff, gentler than what had been my standard in ceremonial tea.
It's interesting, and kinda sad, to see how some of my neurologically accessorized bloggers have been reporting their "adventures,"  and how they've been withering too... My herbalist said that the Chinese medical folks call MS a "withering disease," and man, have I been withering. And from what I read, so have they.

Neurological that goes bad doesn't get better. Except when it does. But as to how, when, or even whether that will happen... nobody knows. Time after time that I was in the hospital, visiting doctors said "Oh, that's neurological. We can't help you."

Not exactly promo materia medica, "We can't help you." It's a little more personalized than "Nobody can help you," but that's not saying much.

So what are we left with? Do the best you can with what you got.

Given what I used to do as a daily matter of course, just firehosing material with next to no effort, calling adding a couple of notes "a triumph" because it was what I could do today... I gotta admit, there a serious change-of-mind required.

But this is a very interesting thing that we are called upon, as the MS accessorized... Change your mind. 

Sounds easy, don't it? Well, it IS easy, if you're willing to work at it and to stop working against it, which is harder than walking out of your wheelchair.

Be here now, as Ram Dass is famous for writing. Well, for me, "here and now" doesn't seem to include a lot of sitting at the computer and creating. But here and now is here and now, so that's the challenge: Be here now.

Quite an amazing "symptom" of this disease...

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...