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.