Next time...

Haven't had much to share, recently. Dunno when I'll be able to share more, just sitting at the computer to do this is...hard. Maybe too hard, depending on the day.

I am wheelchair-bound and all but bed-bound. Bed is where I'm going back in very short order.

Basically, no music is happening at my house any more. It was fun, but it ain't happening today,

We acquired two six-month-old black kittens, and gave them Irish names. They love to play with each other. They seem to know that I love them too, but they seem to prefer me at a distance... for now.

And that's all I got today. Blessings and love to all of you!

See you next time.

First, an apology and a correction. I am sorry that my recollection, and thus my writing on it, were incorrect. My doctor-turned-friend is going the Big Chemo route; he is definitely gonna just give up and go gentle into that good night. Quite the opposite!

Moving on... (As Steven Colbert the character used to say frequently.) First, I can't tell you enough how important it is to care for your caregiver. Wife got sent off to see a favorite artist/band, PJ Harvey. She came back glowing, and still is.

I have been introduced to an entirely new (to me) medical world. Stravinsky called the organ "the monster that never breathes," but I wonder how he would have spoken of The Hospital, which is a very interesting non-localized creature indeed. I am currently transitioning to a new GP ("internist" on the label) whom I first met during a hospitalization. I really like her, I really connect well to her. But my last guy had what my wife has called a "boutique" practice; the guy who mans the front desk gives great help, but he can only do so much. My new doc has web stuff and all this useful info about prescriptions and even more! I need blood drawn, just go down the hall! Need a podiatrist? We know where to send you, our office makes the referral and their office will call.

A whole new world! But isn't that what traveling the MS Highway inevitably leads each of us...

Things DO change. Constantly; and yet never. Or as afriend said years ago...

Why not both?

The next level

Oh, what an adventure yesterday provided. I actually left the house! And went to a new (ish, at least in this context) doctor, an internist affiliated with the big hospital here in Pasadena.

I miss the guy who had been my regular MD. He's off "treating patients" because he's dealing with his own diseases, plus the usual MS gunk.

I really like this doctor, but she and I have some gulfs to bridge; she's not as into acupuncture as I am, but that's now a problem, fortunately. She's not as "with" cannabis as I am, or as my old MD was. But the conversation went as one might expect...

"What about marinol?" She asks.

"Tried it. Doesn't work," I say.

"What about baclofen?" she asks. For anti-spasticity, she says.

"Tried it. Doesn't work," I say."Plus, I didn't like the overall effect. Cannabis works way better. Especially if you the right variety."

For those of you who use cannabis as I do, try Candy Kush. It absolutely zaps the pain and the spasticity. Beats the pants off marinol.

She was very aware of my distrust of the Western medicines. She told me very clearly that everything has side effects, if that's what your (my) problem is, that's a big one.

I told her, by me it's simple. It needs to make me better. Cost of side effects is fine if the drug makes me better. Unlike for example, tysabri that makes your brain turn to mush and then you die. Or use the injectable DMDs that make you feel like shit for a week, and then a day and you feel not bad at all, now you repeat for the rest of your life. As I explained, I already feel like crap for the entire week, the "feeling bad" doesn't need any help. And a far as I can tell,  they don't actually work. Expensive, and painful, but effective? Not so much, as far as I can tell.

But the basic "internist stuff" was great. Talk about digestive and elimination stuff. Talk about hunger and the lack thereof. It was a fantastic visit, and I'm definitely going again in a week or so.

So, on balance good news, doctor-wise, but the Western world doesn't do so good with Chinese medicine and herbal stuff like cannabis. By me, most of the Western-world drugs seem to be a means of moving money around but they basically don't work, as far as I can tell.

So that's my gift for today. Find people who listen. They may start by disagreeing with you, but at least they listen.

And if you can, take it to the next level.

... Find someone who cares.

A good place to start

It's definitely time to visit the "gifts" world... rather than the "barrage of symptoms, creative things not created, especially like the things that used to be so trivial to create,  and a growing list of tragic losses" that seem to be the sine qua non of the life lived with MS. Rather, I think it might be better to explore the gifts that have been presented me. Yes, gifts.

Pasadena has been horribly hot, 100+ temperatures by 3PM. But this morning, it has been more like 72. And the sun is warming, not baking... at least not yet. I had a cup of tea and a superb English muffin, toasted and blueberry jam! I sat outside and smelled the air... looked at the trees and the clouds... Listened to the birds and the city... someone was doing old-school woodworking, using non-pneumatic manual hammers. And then, the power saw, coming from another direction.

In a few minutes, I sat on the veranda puffing at my vape stick. Life was very, very good. And all I needed to do was just be there, and pay attention. No side effects, beyond I dunno... inner peace?

So MS has led me to a place where I sit. And breathe. and listen. Would I like to return to the "beauty making" place? Hell yes. But all things in their own time.

But, at the moment, Thing One is to enjoy being alive.

A good place to start.

It has indeed been a while since I blogged at y'all. Things have been unchanged, things have been very changed.

Well, I have little energy... a fantastic days is one where I can take myself down the ramp into the back patio, and then take myself back up. The whole "sitting at the computer" to do stuff, not so much.

I have no television (long story) so I have no way of watching conventions "live" like I used to in the good old days of actually having a working TV. This is good news..really, what's gonna happen that's gonna actually mean something?

But MS wise, I'm basically withering.

What else? My MD/acupuncturist/neurologist/spiritual advisor is out of action... He's shot through with stage-4 cancer, doing the chemo thing, I've placed an "I love you" call, but no response no news.

I don't imagine he'll be blogging any time soon. What's there to say? "I'm stuck in chemo, it sucks."

But it has been a delightful time to simply be here now, as Ram Dass likes to say. The days are often quite sparkling before they heat up to nasty summer hot, I love hearing the birds chattering and maybe even seeing some butterflies. The wind changes every few minutes, the scent changes--sometimes you can even smell the burger place down the street doing mad with burger-izing.

So that's what I got on offer at the moment. Stay cool, stay hydrated! Happy summer!

Sometimes

So I've been contemplating typing this blog entry for days, yes days, all sorts of quiet contemplative things... As you can tell from the date stamps on these posts, that hasn't worked out so good.

More immediate concerns presented themselves this morning. I had zero interest in eating anything, and settling on just giving up wasn't a good long-term solution, so I thought screw it, I'm gonna get stoned. Maybe that'll work.

Two disclaimers: First, I haven't gone into Cheech and Chong style "Get stoned, get the munchies, eat a lot" in decades. That's not usually the road I take, at least. Second, yes this is self medication and self prescription, which most MDs will tell you is OK if done judiciously. But I do my cannabis doses with multiple doctors's approval, so there. And like all those nasty DMDs actually do anything besides move money around.

So I go out onto the veranda, have a few hits, and in short order, I'm totally grooving on my second cereal bowl.

Then I come to the studio and type this.

Sometimes, self-medication works!

A rabbinical poof!

A wonderful moment with a beloved one... And here's how it went:

Concerning this Thing, which isn't at all important to the discussion, I was correct. My beloved one was correct. But we didn't agree at all.

And here's the good part: At some point, I said "You're right. But so am I. We just disagree about the connection we're trying to make. But you are indeed correct!

Conflict: Poof! Gone!

Being the "right one" doesn't help. Cooperating, however, does.

A friend spoke of a rabbi who was told by person A that Thing X was the way it was. And the rabbi said. "You're right!"

And then person B objected, saying that Thing Y was actually the way it was. Completely differently from Thing X. So the rabbi said, "Indeed--you're right!"

Then someone said "But X and Y are different. They're not the same. They can't both be right!"

The rabbi of course, then said "You also are right."

Being right matters sometimes. But the other person may also be right.

Remember that. Because if you can...

Poof! Conflict gone!

Personally I don't need to keep working over differences that don't exist.

This, too, might very well be right.

Poof!

A gift and a prescription

High time to touch on the actual gifts of MS.

Stillness. Paying attention. Just noticing. These are all things that have arisen to the fore. I don't "do" things like I used to... Going places away from the house, getting involved with things that I used to do a lot. An awful lot. And now I don't... Instead, I work on just paying attention. Just be here now, as Ram Dass often says.

i sit in the backyard and feel the wind. Smell the wind. Listen to the birds, and squirrels, and whatever else is nattering in the back yard. Listen to the sounds of the city.

Each one of these is a beautiful, beautiful gift. And what has brought me to said gifts?

Just sitting. I did, after all, supply a chair to sit & wheel around in... why not make the most of it? To simply sit, and simply live?

So that's the gift, and that's the prescription.

Pay attention.

And why not... enjoy?

Today's gift

Interesting days indeed. Getting things done... not so much. Go somewhere to do things... nope. Doing computer things, but it turns out, doing them wrong, then taking pretty serious emotional effect from screwing up things that I used to do effortlessly and, more importantly, correctly.

So where are these glorious gifts of MS?

Yesterday I was sitting in my wheelchair on the veranda, and I found myself completely going into simply listening. A bird. The sound of a car going by. The sound of humans going by and just chatting with each other. The sound of the wind going through the trees. And, as it does constantly in the back yard, the wind changed. And changed. And changed again.

This is definitely a very amazing gift... I am pretty much stuck in a wheelchair, I have no way to drive myself places so without caregivers hauling me, I'm stuck here. I often don't even have the energy to do things beyond listening to my favorite cartoons (like Steven Universe)

... or listening to Virgil Fox going nuts on the organ

...and maybe going to sleep. And yet, simply sitting on the veranda and simply listening.

That... that was a truly wonderful gift. As Ram Dass says often... just

Be here now.

Therefore, I say to you, MS or not... it's simple.

Be here now.

And just listen.

"Good" and side effects

A great chat with a caregiver.

She shared that she was wigging out about "math" stuff. Most probably, basic algebra stuff, explained poorly as only basic algebra can be malexplained.

And what I told her was this: Change the frame.

For example, you drive all over the place here in the greater LA area, you are always greeted with needing to be somewhere at a given time, on an empty freeway it takes a certain time, the freeway adds to that travel time depending on when and where you're traveling. All that tells you that to get to the desired location, you need to allow so much time and that means that you need to leave at particular time.

But this is algebra. Change the frame to stuff you're already familiar with, and suddenly the problem disappears. It's not an "algebra" problem, it's a "just do it" problem that you deal with daily. But if you frame it with scary letters like X and Y and such, you're setting it outside your comfort zone.

So, change the frame. We MSers, we can certainly say a lot, and which of us can't say a very large amount, about our problems, our disabilities. And yet, "tell the truth" includes telling the truth about what you can do.

So indulge yourself. Take a moment to enjoy what works... Because there are things that still work and work well. I can still enjoy the air. I can still laugh. I can still reassure caregivers who need care.

And those all matter. Adding good to the world comes in many colors and flavors... so, why not make the world better? Even in a small way. Because big good starts from small good.

So, that's your prescription for today. Do good.

Good only has side effects of... well, good.

Why not try...

An interesting pursuit that I have been following for a while now... Giving things away.

For example, cooking devices. I don't really cook any more, my kitchen, wheelchair, and manual dexterity do not really lead to fiddling with cooking gadgets, like a Cuisinart. So, I hand it off to someone who would both appreciate and use it.

The chef (kinda guy who cooks for thousands at once as well as a few hundred, depending on the gig) was blown away... My Cuisinart apparently is old school and much more serious than the newfangled ones they put out nowadays, he was blown away simply by its existence and by being offered such a goody.

My thinking is, right now, it's gathering dust and helping nobody. It's not making the world a better place or increasing anyone's happiness.  Or, I can let it gather dust in his cupboard rather than mine, and in the meantime making him happy and making all the people he cooks for happy. Which, by me, is a net gain.

My truck, I sold (months ago), rather than just giving it away. But seeking ways to be both generous and lightening the load of cruft, those stories generally end very well.

The site Tiny Buddha had a similar post, recently. Although posting a "getting rid of stuff" and "a giveaway, which if you win the contest will get you more stuff" seems rather... confused.

But MS or not, is your life being improved by stuff?  And MSers like me have lost so very very much, and yet here I go trying to get rid of more of it.

But again, MS or not, stuff gathering dust does not make the world a better place, generally speaking, so... why not deal with it and deal with letting go of it and make someone happy? Converting "losing" to "sharing" and even "gladdening" the person who needs, needs, it?

As the rector of All Saints church said frequently, it is only in giving that we can truly receive. And that is one thing that MS will never destroy, withering disease that it can definitely be: Generosity. Kindness. And a better life. For both the giver and the recipient.

So that's your prescription for today, whether you're an MSer or not. Why not try...

Generosity?

No side effects.

Go for it!

Today's prescription

I get acupunctured today... In a few days, I may get another "off-campus adventure" hitting up the local Vons, maybe a wild and wooly trip to CVS.

I did do some wild self-indulgence the other day... one of the local-enough-to-deliver pizza places has completely redone its menu to include both vegan pizza and NON-pizza, so I got fish and chips. I may further indulge myself to get some pork ribs.

It's a wild wild life, as the song goes.

But I guess that's the sermon for today. Doesn't matter how much you got... Enjoy it. When it gets warm enough, I enjoy being outside, I enjoy being taken outside. And once my caregiver gets her car, I'll have her take me to somewhere really wild... Like Whole Foods. Or Ten Ren. Both places that I have really, really enjoyed.

So that's also the prescription... Enjoy more. And what that "more" is doesn't matter. It's not about"get more" or "do more," it's "enjoy more."

Even if it's as simple as making a transfer to/from the wheelchair or the bed, or as simple as a really good sandwich for lunch. Just enjoy it more, whatever it is.

You'll be surprised how easy or fun it can be. I (we?) may be totally wracked by The Disease or our once-comfortable/convenient life totally shredded, and yet, we can find things to enjoy.

So... as Garnet the Crystal Gem once said, Go...have... FUN!"

Fine prescription

Adventures abound, here in Southern Cal. Acupuncturist has been encouraging (telling) me to get out of the house, and my caregiver has been pushing me outside and down to the Vons a block away. A much more enjoyable trip when it's not cold and raining.

Simple but good treatment: Get outside and enjoy. I get conflicting orders from different doctors... GP says get more sun, skin doctor says get less sun. Well, that's easy, ain't it?

Matcha, oolong, cannabis, and honesty. A very good way to spend a day. So, find your truth, and follow it.

A fine prescription indeed.

A good idea

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

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

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

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

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

So, what do I need to do, then?

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

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

And that... is definitely a good idea.

Simple works best

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

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

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

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

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

So I recommend the old reliable way.

Simple works best.

Wood

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

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

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

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

But renewal is definitely worth at least trying.

So, happy Spring to all of us!

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

MS Message

A call yesterday from the urologist was quite informative.

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

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

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

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

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

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

An interesting "MS message," eh?

Challenge enough

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

The rabbi asked, "What is your story?"

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

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

But none of those are my story.

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

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

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

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

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

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

Dunno.

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

Challenge enough...

Not bad at all

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

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

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

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

Not bad. Not bad at all.

Choices

Had quite the adventure over the past few days.

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

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

This, by me, is not good.

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

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

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

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

As ever...

We'll see.

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

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

Today's prescription

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

Pay attention.

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

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

Pay attention.

A good start

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

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

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

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

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

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

And why is that so hard?

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

What if I start with being Here, Now?

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

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

A good start, yes?

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

Hm, what's happened?

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

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

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

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

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

Enjoy.

Today's prescription

It has been a while since I shared with you, gentle readers,

A "symptom" thing y'all might need to know, someday, I hope not, but you never know...

I had a pretty low-grade fever, maybe 100 and a small amount, something like that, but that completely whacked the MS stuff. I could barely transfer from bed to wheelchair and back, especially couldn't do things like once I got my butt back onto the bed, to get my feet up onto the bed... had to call for help from my caregivers such as my ever-caregiving wife. It's bad enough that I'm MS-withering as it is, it gets worst with a fever.

Well, that's gone and I'm back to what passes for normal for me, 98.1 and such. But transfer works as it has for a while, well into "good enough."

And here's another not-at-all fun thing... my eyes have gone whack. They point in different directions. Like Simsons eyes.

See how the one on the left doesn't point in the same direction as the one on the right? That's the idea...

I'm going on an adventure to my optometrist next Friday. We'll see what comes of it. Perhaps "find out" rather than "see" is the operant verb, but we'll ... see.

And a prescription from my acupuncturist... keep "finding the funny." I have been having a hard time simply dealing with fingers going bad at gripping things, what little precision is required of typing, a steady diet of "I'll put this here..." and then "Nope."

My vocalizations of well, I guess despair is the best way to encapsulate it, is unfortunately very similar to the ones the "Jerrys" give in the couple's counseling episode of Rick and Morty. And it is definitely not an example of "find the funny."

It's a sound my wife especially dislikes, and it's only fair and reasonable and understandable, so out of compassion for her alone I need to break myself of the habit. So again here I am called to change the thing most in my power to change... attitude, if not consciousness.

So that's today's prescription. Which I can freely pass along to you.

Laugh,

Go for the gold

A delightful little piece on YouTube, about kintsugi, the Japanese art of embracing damage.

Broken pottery is repaired, but with gold.

More of the delight of wabi sabi, the beauty of impermanence.

And this is what the MS experience asks of we who follow--who have been set upon--that path. We are definitely broken, our happy comfortable lives that we were so used to have been completely changed by the MS experience. And yet, we can repair the broken pots of our lives with gold... the same gold that the MS experience itself provides.

My own personal MS experience has brought me new ways to experience the world. Often, to share compassion with those who need it, even when they're not present. To really, really, enjoy the simple beauty of the sweet scent of the air turning ever so slightly springwards, away from winter. Yesterday, I heard house finches, for the first time in months. My wife walks across the house grousing about wearing the wrong whatever or looking down in the dumps, and yet all I see is beauty.

There was a huge energetic cost to journey to the tea shop, and yet every morning that I make the dark oolong tea that I got there, I absolutely love it. Was it worth the two days of not doing even remotely well and barely even having the wherewithal to feed myself -- no energy even to eat well, certainly not to eat and enjoy... But the simple pleasure of truly good tea, truly well made, is indeed a golden experience.

So, my MS-accessorized friends... Time to go for the gold.

Better is...

Ah, attachment. Subtle, amazingly sneaky.

So, I'm again off-loading some things I don't use any more. One was (is) a black cape... not fancy, but nice, and I have always loved capes and always enjoyed wearing them. They don't work so well with a wheelchair, which nowadays has sartorial priority.

But this I couldn't eBay or sell to anyone... this one needed to be given away. To someone who would make it live again, someone who would enjoy it and make the most of it.

That's its upcoming destination... the recipient is coming to pick it up in a few days, as soon as his wife gets over her winter cold/flu/nasty whatever. My own non-flu-accessorized wife is organizing this, and she says he already loves it.

Love makes things easier to give away. I'm not "giving it up," I'm just relocating it. With love.

And that's not "getting rid of" something. It's making someone happy.

Which makes EVERYTHING better.

Better is... better, isn't it?

Sure is!

Some things never change, it seems

The amazing interfacing with companies that have their tendrils wrapped around Medicare (age puts you there, eventually...).

So as someone in the Cath Club, I talk to my providers about the next shipment of catheters, and I ask them to send me more of the goop they provide because their goop is better than the stuff I've been getting from Amazon, and could they send me more? What little they send isn't enough for that full load of catheters, after all...

So this sheaf of paper arrives, asking me to do all this justification, asking for information regarding the stuff the insurer doesn't want to provide and why exactly do I need it?

There is, alas, no "try sticking a hose up your dick without lubricant, and you tell me how well that works out for you" check box.

I had also thought "Just send me a bill and I'll write you a check" would be a good middle ground. Apparently not. It's spend a couple of hours trying to puzzle out this form and also send us a check. instead. And all this for the tremendous figure of $8. Can't just send a check. Gotta have a multi-page form.

Clearly the people in the news who are bloviating over "Obamacare" versus single-payer versus oh, let the insurance companies take care of everything because the Free Market is God... aren't in the cath club, fighting against people who'd rather put profit over comfort. Or safety....  Bad, bad things can happen if you don't cath as much as you actually need to, no matter what the people who have never met you have made decisions about your needs and thus no interest in finding out what your actual needs are.

In other news, I saw an interesting YouTube offering about the difficulties, maybe impossibilities, about curing cancer, specifically that there hasn't been a cure because there isn't just one cause for cancer. Yeah, cancer's uncontrolled cell division and everyone who has it experiences that particular symptom, but there are so many different reasons that cancause this, that there isn't a single way to stop it. Does this sound familiar to us MSers? We have symptoms in common, but the MS expression/presentation is different for everyone who has it, maybe there isn't just one problem that needs solving? So why do people always reach for the same three or four DMDs, all of us MSers come to realize eventually that at best, they maybe work and even better maybe don't screw you up too awful much... maybe.

Well, that's a great way to lift your spirits, ain't it? So, in the face of all that, what do we do?

Enjoy what can be enjoyed. Make tea. Smell the freshness of the winter air, especially on the days like we occasionally get here in southern Cal that warm up enough to be fun to go outside. Talk to a friend and laugh.

No side effects. So, as best you can...

Enjoy simply being alive. It's possible, it's there waiting for you. Just find it.

Art imitates life

A fantastic acupuncture treatment this week, it was indeed. Effective and, as always in the Five Element Classical Acupuncture world, quite poetic.

But my acupuncturist also spoke with me about my relationship to ever-so-many "can'ts," and she suggested that attention and energy should be put into the "cans" There are indeed things that I still can do, even though said things may not be in the list of things I was used to or things that I liked or even the way I was accustomed, even practiced, doing.

For example, the truth is that yes, thing X is a thing I can do. Not in the same way that I used to, perhaps not in a manner that I'm happy with, but that doesn't change the "can-ness" of simply being able to do it. Things may come with it that I don't particularly enjoy, certainly not things that I would choose, but none of those change the essential "can-ness" of simply being able to just plain accomplish it.

She echoed something that I've been pondering for a while... There's a lot about the MS Experience that is at least at the moment unalterable or completely unknown in its alterability, but consciousness-- that, I can change.

First change: Stop fixating on the way I do things, and look to the result, which on the bottom line, may still be quite reachable. Just via a different road. May be bumpy and have lots of gnarly stuff on said road, but the destination may still be very reachable.

So, do something. It'll get me closer to the goal. Don't dwell on the changes that have happened to the manner in which I have always reached the goal.

Or in the words of the beloved civil-rights-era song, "Keep you eyes on the prize... Hold on!"

Life imitates art... sometimes, it needs to.

Oh well

Yesterday was Big. Very Big.

A friend took me off-campus yesterday. I wanted to Get Some Stuff, but I knew I only had so much energy, so we prioritized. We went to the place where I get my best and most favorite oolongs, and I figured I'd take my friend to lunch as well; the tea shop abuts a nice and also favorite restaurant, and I figured my friend would never have gone to somewhere like this. "Chinese restaurants" are different from "Taiwanese restaurants," as a chef I figured he'd spot the difference in flavor quite quickly. I prefer the Taiwanese, even for things like ma po tofu, they're better, by my account.

I had also maybe hoped to get a new iPhone, but neither of us was into an Apple Store excursion. My friend hates the place, he says it's like dealing with the Borg.

As it turns out, there's an AT&T store two doors down from the tea place, so we popped in there and got what I needed. They even did the "stuff transfer" from the old to the new, which my friend told me they wouldn't do at the Apple Store he went to when he was looking for his. 

Well, I had to hang out there to supply passwords and such during the phone-activation process, and that took way longer than I had hoped, but I got the new phone! And then we went to the tea shop and got the tea and fed my friend.

As for me, I was toast. I had maybe a dozen bites of my yummy lunch, and that was all I could take. That was all I could take for dinner, too. Energetically, yesterday was terrifyingly expensive... I'm not driven to say "never again," but it's gonna be a while before I ask to go out again, I don't know if I'll ever want to go out for eating because being that low on energy destroys what little ability I have to eat things. Which is pretty damned low already.

I'm thinking, at least wait until it gets closer to or actually into spring; maybe the warmth of the season will warm me up energetically enough to just go to one place, do one thing. We'll see...

I'm getting acupuncture today... it'll be interesting to see what yesterday cost me from her point of view.

"Normal life" is clearly not the "normal" I'm used to.

Not a surprise, but not even air-quotes "fun."

Oh well.

Consciousness

Well, to follow up on the last post and the hopes for another off-campus adventure...

Didn't happen, alas. I knew by the middle of the morning that it was a "sounds nice, but ain't happening" kind of idea. My wife did make it to the film, and apparently it was really quite wonderful.

I might have asked to be taken home by the time I got there. Leaving the house, the bed even, was not a good idea.

Oh well.

I do still have something to do today at home; a life coach will be making a house call. I look forward to our conversation... She always has great ideas to offer me, even if what I have to offer is in getting-things-accomplished terms a non-starter. In football terms, it's hard to coach a guy to throw a ball if he ain't got the strength to come to the field and just hold the ball.

And staying in that metaphorical world... again, I'm called to a consciousness change. I can condemn my own condition, and not even try to hold the ball, or I can recognize that just wrapping my fingers around the ball is a victory, even a small one. Can that become a throw? Again, gotta change consciousness... To take the victory in the simple "just do what you can" world, because even the best QB in the world can only do what they can.

It's not a deferred "just give up," it's the simple truth of the moment. Doing something is different from doing nothing. What comes of it? Doesn't matter, and doesn't effect the victory-in-itself of the moment.

I spend a lot of time in "don't even try because nothing can come of it" mode, and Lord knows I've brought "denial" to the level of a national pastime.

On the MS Highway, there's not much to be done in the "being afflicted by MS" world, we do what we can but does it do any good? Who knows, but we keep trying anyway.

Physician, heal thyself, as the Good Book says. And the first thing that needs to be changed is the only thing over which I have 100% control.

Consciousness.

It all starts there...

Sounds easy

Yesterday was indeed a Big Day. I went off campus, I left the house to GO SOMEWHERE ELSE. I dunno about "flourished," but I did better than just "survive." It was energetically expensive, but it was worth it.

I went for the first time in, oh my, years, to my clubhouse... Hollywood's Magic Castle.

Friends from the Mystery School were there, in part to celebrate the School's 25th year. And to just celebrate together. A mini-reunion!

I am scheduled to go Off Campus again later today, to see a silent movie accompanied by a live theater organ. I hope I'm up to it, when the time to go comes.

But just going off campus is HUGE for me. I used to do it daily. I haven't done it, quite literally, for months. Do I want to do more? Maybe... Maybe not. I suppose that's the relapse-y remit-y thing, the "Some days good, some days bad," sort of thing, but I think it's deeper than just that. I'm on the bottom line pretty wither-y, doing lots of  lying in bed and drowsing while listening to favorite cartoons. No music writing, nothing even vaguely musical... And the Mystery School faculty, who were very pleased with my in-person presentations, are telling me to video-blog what I have to offer. I suppose I can quite easily still think about such things while lying in bed, but the mechanics of actually doing the video-blog thing are currently not in easy reach. "Things being in easy reach" is indeed a thing us wheelchair folks know a lot about...

So, more as it happens. Or doesn't. Or does, but only sort of. Or surprises me.

Just like, y'know, life.

...Which we are all called upon to engage. To fully commit, simply to being alive, however we can, as often as we can.

Sounds easy, don't it?

Just like...

Did something huge yesterday.

Went to an MD to get This Thing looked at. MD told me that things are doing great, I'm doing things great, maybe this antibiotic will be a good idea (I've taken it many times before, it's tolerated quite well), and he answered some questions.

That wasn't Big. What was Big was leaving campus. Getting into the car and going somewhere. Which I haven't been doing a lot of, over the past few months.

I'm looking at leaving campus again in a couple of days. See some friends, whom I miss and I'm very sure have also missed me. And The Event is only a couple of hours long, so my off-campus commitment, time-wise, is gentle. There'll be plenty of processing to do, of course, but that's actually good. It needs doing.

And with luck, all of this will actually happen. And if all goes well, it'll be fun, even.

We on the MS Highway, we take what we can get. Who knows what it'll bring?

And there we go again. It's just like...

Life.

Perceive and ...

A new yet wonderful discovery, here on the MS Highway.

I'm puddling about in the kitchen this morning, making whipped matcha to get my morning started, and as I pull out the drawer holding teaspoons and such, which I need to stir up my ever-so-yummy medicinal herbs which are also part of the daily ritual (ah, the "tasty" world of Chinese medicine), and as I pull out the drawer, I feel like I'm seeing it for the first time.

I've been opening drawers in this house for at least 20 years. I've opened them several times a day for every day of those 20 years.

And yet today, that experience feels new. And wonderful, in its beautiful simplicity.

A side-effect of spending a lot of time in a wheelchair, practicing noticing things "for the first time." REALLY noticing things. Like sitting n the veranda and smelling the changes in the air. Like seeing how the color of the light the sunlight shining on the trees changes with the time of day. Like watching the birds visiting and kvetching with each other. Different every day, every hour. I get a lot of practice just noticing things. And what I notice is always ... quite amazing. Quite wonderful!

So wheelchair or not, confinement to a whatever-it-might-be or not, this is something I can suggest to each of you--also MS or not.

Just notice. Just pay attention.

You may very well find... something wonderful.

Today is different from any other day. People call it "the same as always," but it's  not. It's different.

So then, find something just to perceive. And perceive it. No matter what it is. REALLY perceive it.

And...

Enjoy.

Who knew?

Nothing tumultuous to report. Only quiet changes of mind. Self-discovery, even. And shared joys.

My wife and ever-generous caregiver had to take herself to our beloved acupuncturist/MD, so another friend sat with me on "Robert watch." He made us both sandwiches, he made himself coffee (I haven't had it for something like 20 years, but I still enjoy the smell of beverage prepared exquisitely, which my friend always does).

Shared with my friend one of the sweetest Steven Universe episodes... one that always makes me cry with happiness. It is heart-warming and in its warming, it becomes heart-rendingly sweet.

YouTube has a bunch of clips, but if you have the right kind of Cartoon Network access, you can see the entire episode, which I strongly recommend.

Had a few moments since my last e-chat with you, dear readers, that fall into the category of what Ram Dass calls "There I go again." The friend who sat with me the other day and I had similar "employment-exit" experiences, and for both of us they were also life-changing in a good way, particularly in the "getting the toxic out of our lives" way. I remember my mother's stay in the hospital a few years ago; she had spent the day on the operating table, she had just been delivered from the recovery room back to her bedroom, and yet after having gone through surgery for hours, she looked better to have the nasty definitely toxic and no longer needed "whatevers" removed. A day of surgery, and she looked better.

The "toxic" in me (that I presume afflicts my friend too, since we sounded very similar when we were talking about this) is that I have not been able to come to peace with "Forgive them for they know not what they do." Staying mad doesn't help me get better, certainly; feeling justified in being angry still leaves me poisoned by anger.

So what does my MS Experience have to say about this, for me? Well, first and foremost, my nervous system has enough trouble doing things like "move that foot four inches to the right," I really don't need to use what little nervous system I have on being pissed off. At something that doesn't exist; the Whatever from which I took pretty severe effect was quite literally years ago; it happened, and then the happening of it went away forever. So, I'm taking effect by holding a grudge against something that doesn't exist.

Yeah, that's a good idea.

A phrase I heard a lot when I was the organist for a Science of Mind church, was "I bless you and release you to your good." But that requires two steps: Bless, and release. Neither of which I'm doing with the Whatevers at which I persist in being angry. Especially also because I don't know the reasons behind the reasons, which are the True As True Gets reasons behind the Whatevers that transpired. None of which I'll ever know... and the knowing of which definitely don't belong in the category of Things to Make Me Feel Better. Even knowing said Truths would still leave me in the position of needing to do some serious forgiveness. Which, for some reason, I still have some problems with. Ah, attachment...

So, apparently, that's my homework.

MS as a gateway to forgiveness.

Who knew?

Today's prescription

A very powerful day, yesterday.

My wife and I had a very loving conversation. Very necessary, but very loving. "Tell the truth with love" really, REALLY, works.

I got acupunctured as well. (After, not during, aforesaid conversation.) Five-Element acupuncture is all about telling the truth with love, and listening very carefully. Profound, gentle, and beautiful. And those of you to whom such things are foreign would be surprised to hear that, except for a point or two, it really doesn't hurt.

Plus, we had a great conversation about cartoons her daughter might like, and I loaned her my box of what they call in the English version Moribito. Great for teenage daughter... the central protagonist, Balsa, is a shapely woman, but it's not about her shape. Balsa can be a real bad-ass. Who changes the world.

So, that's the no-side-effects prescription for today. Tell the truth with love, listen, and in changing yourself, change the world.

Not bad for non-animated folks like us.

Try

The New Year proceeds at its own rate. Astronomical things tend to do that, e.g., rotation of the planet and such. My wife's mother is heading back to Louisiana today, and it has been a fun and miraculous time with her on this glorious visit!

Had a nice coaching session with my life coach. She's not in the Coaching MSoids business, but she's great at "get out of your own way" to see and suggest solutions that are very much worth trying.

It's a good line of thought-changing for all of us MSers, and non-MSers alike. Whatever it is and wherever you hope to go, why not try? Don't limit yourself. And the "try" doesn't have to be HUGE try, it's just... try. And what's to lose? It may be something you already don't have, so there isn't any "losing" even possible.

I've been in an energetic death-spiral for quite a while... I describe myself as not having enough energy to do the things that give me energy... but that's also "old thinking." Coach was very big on "do SOMETHING, doesn't really matter what, and the doing of 'something' is actually BIG doing, not small doing."

What we can't do could fill several football stadiums. Well, I also can't out-think Neil deGrasse Tyson, can't jump to Mars, can't stop the rain. So why put all my attention into the "can'ts?" What I can do, I can do, so why not do it?

Or, at the very least...

Try.

I suppose...

New Year is pretty much the same as the old, so far. Got a couple of interesting e-mails, the B2 flew over our house on its way to the Rose Parade.

And, of course, the usual list of Things I Gotta Ask The Doctor Folks. I'll spare you the details, but there are definitely a few things that would fall into a favorite cartoon character's shout of "What the what?!?"

If something worth sharing comes of said conversations, I will. I expect, though, that it'll come down to "Yeah, that happens sometimes." Give me the actual cause, and it will still boil down to "Yeah, that happens sometimes."

That was pretty much my reaction to receiving The Diagnosis. "You have multiple sclerosis," he said. "Well, it was going to be something, eventually," said I.

I have been working with a life coach... who, I think, may not have as much experience with outliers like myself. One of her worksheets asks what goals you have and, basically, what are you doing to get them. One of the one-word categories was "Health." I haven't quite decided how to answer that... Perhaps "Yep. I'm for it. Don't have it, but I'm for it."

A little web-site poking--now, that's a project that's definitely waiting to be done, a whole web-site re-organize. Well, I'm for it, at least. The first step is thought, and at least I'm still good at doing that.

As for what's really next... Who can say?

I'm for it, I suppose...