Wednesday, July 26, 2017

Until then

A message from a favorite show-creator/writer, from the floor at ComicCon. A good message for those of us on the MS highway. And here it goes:

Don't give up.

A very important message, for someone who has seen a lot of stuff, well, leave...

I could hammer at the litany of symptoms, all of which suck, I could speak about how hard it is to sit here and do this, which sucks, or how I didn't use to be in pain but now it's pretty much constant, which sucks, and well, I could go on white a while but whatever gets said will end in "It sucks."

See a theme?

Where are the promised gifts?

If there's one thing I know, they'll be here as soon as I notice them.

Until then, things well...

Suck.

Friday, July 7, 2017

Shiny moments

Simple joys... Sometimes in the past but no longer present with me here and now.

Simple joy of whisking matcha in the morning, then brewing oolong to enjoy all day. The sweetness of the air in the pre-too-damn-hot summer morning. The purr of our cat.

The simple joy of hearing my wife as one of the voices in Little Witch Academia--on Netflix, even!
She's voicing professors who aren't always the nicest, but she's quite amazing! The academy is kinda like Hogwarts, the teachers Karen voices are sort of Snape without the kindness, but damn, she's awesome!

Enjoy the joys that are presented you. Where they come from doesn't matter.

Many things are fading, is it age or MS? Who can say? But the simplicity of just grabbing and controlling my hand while I try to grab something... And of course, how much life changes when you spend 24/7 in either a wheelchair or a bed, who has time to hear about it? Although the simple joy of getting the wheelchair up the ADA ramp, or through the doors inside the house, is indeed welcome.

Haven't quite come to peace with typing things like I am now, especially with the flurry of mistypes and miscorrections and tries AGAIN to get things hyped correctly... Ain't no fun.

Well, that's what I got the strength for at the moment. Be well, and as the little witch would say, be shiny!

Thursday, June 22, 2017

Meanings of "normal"

And there we go. Page go away now. I have no idea why. let's try again. And so we try again...

And that's MS for you. Stuff you used to do goes away. For no purpose. Why? Who knows? Of as Tolkein often wrote, who can say?

Wish I had more to tell you besides "Life ain't so much fun."

Not today.

Because, today, life ain't so much fun.

It happens pretty much constantly.

Is that my new "normal?"

Who can say?

Which is, in a word, life.

And that's definitely normal. Right?

Sunday, June 18, 2017

The essence of...

Thought it was time to check in.

Hung out with a Yale '82 friend who whisked though my area. We had a delightful time! Challenges followed The Camera as various of us tried for pictures... When the pix find their way to me, I'll send 'em along.

One of two MS Issues... my pal noticed that one eye liked to wander around and point in different directions. Nothing new, alas... and the other one was "don't stay too long in the heat, idiot,' and well, you can guess the rest.

Even unacceorized like me, he agreed that the one thing that could/should be said of Yale was the single word: Stairs.

Sigh...

Well, this AM, I thought of a fun musical thing to do!

The number of times my eyes and fingers have been flailing, and spazzing, the number of times I.ve made and then tried to correct and maybe could but then couldn't (see above, there's a period where a comma should be in the previous sentence), when you're trying to get music right for 100 people playing in how many keys... Little errors are huge.

I'll try to poke at it. One right measure. That's a start!

Well, when you used to type 100 WPM, one measure doesn't seem like much. This is a huge part of the MS Journey, very much like the basic Life Journey. Things change, because I change. My own homework is to get out of my own way.

Thus may it befall to all of us!

Get out of your own way.

Is this not the essence of well... Life?

Friday, June 16, 2017

Strange gifts continue

So, here I am at home, and something keeps coming up...

I still haven't let go of my old high school/employer. I'm still, in a word, pissed.

Casting them free equals casting myself free. Let go and let God, all that. But when things are built as wheelchair-unfriendly, letting God re-architect things doesn't happen fast, if at all.

Wheelchairs are off things, to be stuck in, and pushing yourself up ramps, especially wheelchair ramps that suck as push-up-able, is challenging at best.

So, what do I do now?

Enjoy my own back-of-the-house garden. Enjoy the sky. Pet the cat. Talk to those who wish to talk. Enjoy hearing about my wife's adventures as a voice actor, at which she is supeb.

Lie in bed. Sleep. Enjoy tea. Do the bathroom-transfer.

When life is good, life is good.

Enjoy what you can, yes?

Wednesday, June 14, 2017

Yet...

The gifts seem to be evaporating... I may yet come to "or are they" but I ain't there yet,

I have lost a lot of stuff, all in the "doing" world. I used to be a high-school teacher. Changed lives, at least I like to think. But that was taken, by whom or what does not matter at the moment. State of California decided that I shouldn't have my driver's license renewed, I know not why to this day. Insurance company wouldn't renew me, since I had no D/L. So I can't drive... Truck's gone. I don't leave the house because I can't transfer from chair to car and back. Without almost hitting the ground, which is what happened when I last tried to go to a doctor's office. So I don't leave the house for, well, anything.

I used to be a pretty-much constant composer for all sorts of stuff. Not any more. I can't see, I can't control my hands, I don't like sitting up at the computer like I am at this very moment, for example. I used to compose all sorts of stuff. Such as this. Not any more.

I know there are unexplored gifts. Undiscovered gifts. I know they're there. I'm not sure what they are...

Yet.

Tuesday, May 30, 2017

So, where are these "gifts?"

It has been a long time since I shared with you.

To make the litany of symptoms short, nothing works, nothing helps. I'm either home bound or bed bound. I haven't left the property in months, mainly because the whole transfer between the chair and the car is basically undoable.

Many things might be said, but none of them will rely on the term "bounces," especially when the ground is involved.

Trust me, that's been tried.

Being unable to engage the world has been quite difficult. I've been able to give care to caregivers, primarily by listening.

I may still have things to offer, thought-wise, but simply doing that takes a hell of a lot of work.

I will tell you. though, that hearing "I can't" is one thing, but hearing "we don't need you" is hard. VERY hard. I spent years in anguish, figuring out that what was stuck in my head was a plea to "value me!" Well, if there's one thing I'm definitely not responsible for, it's someone else's enlightenment.

The high school I spent years working at is very bad at saying "thank you" and "goodbye." I never really got the first one, the second at best merits a snort. But it's only my own enlightenment that I'm responsible for, and being chair or bed bound provides an excellent excuse, if not an opportunity, to work on that.

I've hit the wall. Done for now. Peace be  with you!

Thursday, April 13, 2017

So... why not?

Gift time.

So here I am, basically wheelchair-bound, and spending lots of time in bed.

So where are the gifts of MS, which after all were promised?

Being wheelchair bound, a "big thing" for me to do is to just go outside. It there, I see flowers I've never seem before. I see plants like thyme, artichoke, dandelion, lettuce, all sort of amazing things that just pop up.

A friend of mine visits to be the day's "caregiver" who meanwhile seems in distress and he, needs first, simply to be heard. That is easy to do, bed-ridden even. I listen. I suggest that he "find the funny." We laugh. We talk about rock-and-roll keyboard playing, his knowledge of which is easily PhD level. He finds things to hear on YouTube. I show him Rick and Morty. He tells me that simply knowing that  this show exists blows away his now pretty-grown kids--that he, Dad, knows about the existence of that show? We laugh even more.

Listen and laugh. Good for anyone, MS or not.

I hear about this new amazing MS drug. It is compared by a reputable MS Society against rebif and tysabri, which my at-the-time MD (a very science-y guy, MD or no) ranked in the "you can't be serious" list of things to avoid religiously. Me, I'm sticking to cannabis; a knowledgeable caregiver (doctorate) tells me it's neuror-protective, and as a side effect helps me to enjoy being alive. And calms the spasticity, of which I have plenty. Really plenty, thank you for asking.

My wife constantly makes "kitty mommy" nuzzling of the new cat. Her joy, and this adorable little cat's obvious joy at simply being alive here, is really wonderful. Chair and bed-ridden makes these all even more wonderful.

My world is kinda small, geographically, but living in it is wonderful, and MS has shown me many before-unseen wonders.

Life is good. Thank you, MS?

So, why not. Gratitude and joy are definitely worth living...

MS or not.

Sunday, April 9, 2017

As the saying goes...

Things stay the same, things keep changing.

Someone sent me something about the Absolute Latest Wonderful MS treatment. Works, does it? Well, depends on who you ask. And what you ask them.

Makes one long for the simplicity of the plumbus,

I'n pretty much running on empty, energetically. In the last week or so, I have sent my wife off to a local Japanese meditation garden, here in Pasadena even! Last night, she was off to see Stupid Fucking Bird... quite the show, I hear. Sending her off to have this kinda fun is one of my greatest joys! No, send OFF isn't the fun part... it's the joy she feels and absolutely radiates that is my source of joy. Which, by the way, I can feel her radiating from across town.

There's not a lot of fun here on the MS Highway, but radiant joy is good for everyone. Everyone.

So, there's your prescription for today. Find joy, share joy. Doesn't matter how or why.

As the saying goes...

Just do it!

Wednesday, March 29, 2017

Listen simply, simply listen

Definitely time to check in.

Not much news... I spend the day in bed and/or in a wheelchair. My urologist said it best, the other day... He knew I used to be quite the organist, but speaking of how things have changed, he said simply, "Those days are gone."

I have an idea for music! But no, I'm having Issues and stay in bed... Can't deal with getting up. Definitely can't deal with adding "To-Do" stuff to the list. And I can't even count the number of times in entering this I've wacky-mistyped something.

I do enjoy spending time outside, but my bactrim, an antibiotic that I tolerate well, says to stay out of the sun. How to match "definitely go outside" with "definitely stay way clear of sunlight," I don't know.

Fighting with Cath Club issues... Perhaps more tea? We'll see...

Some of the greatest  MS gifts have been in simply listening, listening simply. A friend speaks of various things just makes no sense, to which I say, "You're right." Well, he is. But it means a lot to hear "You're right," especially when someone else says it to you.

Said person is having Issues with Various People, said issues always go south in the same way. It is a hard place to live, the "there is NO way to win" never goes well, but just a quiet calm moment changes everything. Yeah, it does indeed suck (Wheelchair Guy can tell you all about that) but that simple, calm moment helps everything calm down.

That  is the gift that MS wants us to give. Make the world a better place. Specifics and methods aren't important.

Listen simply, simply listen.

Friday, February 17, 2017

Midnight musings

So I'm awake at like 3:00ZM, puffing away at my favorite vape to get spasticity and pain under better control, and I start thinking, I think I may see a way to explain this whole MS thing without going down the scary statistical road.

So here I am in my "charming mid-century home," as the realtors would say. But so much of this place sees to itself. Heater turns itself on and off, water heater turns itself on and off, garden gets watered automatically. This is the way your body works. Big directions get sent by the brain, but a lot of the connections are seen to by themselves.

And here we are on the MS Highway. The basic challenge with MS is bad wiring--systems that used to see to themselves don't, any more. The connections are bad. So sex stuff, elimination stuff, walking (or not), all sorts of things that used to be "normal" have now become the new normal of "things don't work any more."

The "can't" expresses itself in many ways... for me, it's hard too just sit up to type things like this.

What gifts then has MS given me?

Simply observing how amazing the world is. The rain falls or doesn't, the air changes significantly. Being outside in the cold is no good, but warm is wonderful. Simply sitting outside in the sun when it's comfy and warm is amazing! Which I never experienced until so much "normal" was closed off to me.

So, as they said on Rick and Morty, "No wrong answers!" Just live, and see how amazing simply being alive  can be.

So... just live. And that's hard enough... but fuN!

Friday, February 10, 2017

Get the fun you can...

Quite an adventure today... This Amazing Computer Guy is gonna come over and see if things can get seen to. I got printer issues, all sorts of "Now how the hell did I plug THIS in?" issues aplenty, plus some machines that have samples that are completely irreplaceable which are  running XP an nobody, NOBODY, is gonna muck with them.

A "move the computer" idea that is perfect except the "now how the hell can I turn this on NOW" issues. Sigh...

And an AirPort utility that keeps popping up and getting in my way. High on the list of "make this quit bothering me" fixes TBD.

I'll have Guy plus a caregiver/helper who may assist moving things around... we'll see. And maybe hot dogs for lunch!

Get the fun that you can...

Pasadena had a warm day yesterday. I actually sat in the sun! Of course, I was out of energy the rest of the day, but those sunny moments, those glorious sunny moments...

Get the fun that you can, when you can.

Sunday, February 5, 2017

Do what you can with what you got....

Have a happy day indeed, MS or none! This will be the last of my "sitting up at the computer" things today... Paid some bills, did this and that, will make tea, visit the restroom, go to bed.

And... that's about it.

Many in the non-Western medical world call MS a "withering disease." Boy, am I ever withering. No music writing, no... pretty much anything. A couple of friends visited yesterday, I had enough strength to clean up the studio and play a few tunes.

Do what you can with what you got.

And that's  what I got this AM. Be well, stay dry!

Tuesday, January 31, 2017

Time to share again

Probably time to check and update my music web site, but this first, this first...

Not much to report, but for those of you on the MS Road, this may sound familiar. It's a sunny and sorta warm day here in Pasadena, but I may not make it past the veranda to the patio. Cats enjoy themselves, but they come in nicely when it's Feeding Time. For those of us in the Cath Club, I found some goop that's absolutely perfect for catheterizing! Which, of course, they cath people don't send me enough of and I cannot for the life of me figure out where to order it; the address on the tube is happy to take me to many pages praising the product but no info anywhere about where/how to order it.

My fabulous wife took off to the Magic Castle last night; some friends were performing; she tells me it was fantastic! The Castle is closed to me; as a 100-year-old house, it isn't even close to ADA, and "butlers" will push me around, but what with Cath Club and fatigue, going there isn't gonna happen today.

A reminder from a friend... Things change. Life is change. Deal with it...or don't, but life is change.

And oh boy, how to deal with changes... Something I'm constantly being called upon to deal with.

Tuesday, January 17, 2017

Time to give back

It has been quite a while since we've e-chatted.

I have been catching services simulcast from All Saints Church here in Pasadena, and that community is very much about sharing and support.



So here's what I have to share...

I spend most of the day in bed, snoozing and listening to cartoons, like Steven Universe, which are very much about sweetness and love.

Which works out I guess, since I wake un in the middle of the night and put more Hearts of Space on.

When it's warm enough, which it ain't often, I wheel myself into the sun and catch a few rays.

Things don't change much.

But that's MS for you. Some days good, some days bad. Just like life.

...

Oh well.

So... that's about it. When something worth sharing pops up, I'll definitely share it. Until then...

I'm going to bed.