New challenges

Well, things are ... different, nowadays.

I won't say "changing" because that implies they (whatever "they" are, the aforementioned "things," I guess) have some sort of direction, that they're ceasing to be exX and becoming Y. Well, I have no idea what the target of "becoming" might be and given the "differences," I have no flipping idea what may be "changing." But things are definitely ... different.

I am definitely experiencing physiological differences... whether they've been there for a while and I'm just now noticing them, or I'm noticing the differences are they're happening for the first time... well, I don't know.

But it is definitely an experience. WOW, is it an experience.

I'm really trying to do at least a little music writing. I may be found something (as it were) that'll take me onto the next step, in the writing process, and that was good. It's gonna take a lot of work 'cause it's gonna take a lot of notes. But after working a while, I had to stop, for a bunch of reasons. When will I be able to resume this? Tomorrow, definitely... at least, that's my imagination. Dream. Hope.

I'm increasingly worried about simply "going somewhere," about leaving the house. I have an imagination/intention/dream/hope to leave the house, get into my truck, and drive "all the way" to a store which, fortunately, is enormously wheelchair-friendly. But my legs are so shaky/weird/different—oh heck, let's just call it different—that I am fearful about using them outside of the house for any reason.

Hell, I'm on the edge of afraid to use them inside the house, for that matter. I made a point earlier today, filed under "dammit, I am doing this," of going to the backyard vegetable pots. They look great. I think they'd like a little water... I also think they'd like a little mulch, but that's gonna involve one hell of an adventure (get a friend, go to the outdoor-stuff store, pick up the mulch, take it home, had aforementioned friend load the mulch into the backyard and if possible, into the veggie pots). Doesn't sound like much in the Old Days, but given how little control I have over my legs, and how worried I am becoming about going into the world... it's big.

Before I can conquer the "going into the world" thing, I need at least to clarify my state, my capabilities... to see exactly what things are a fear-filled response, and which are prudent. But the first thing that is necessary is observation, followed by honesty, and (a word I've spoken of before) copping to the truth of my current capabilities.

None of us "know" what's going to happen. Most of us can be more-than-reasonably certain that when they stand up, they'll keep standing. And that when they stand at something, they can keep standing at something, as long (within reason and practice) as they want to.

I don't fall down often. But I have. And I would have fallen down more if I wasn't as good as I am at availing myself of nearby support. Which I have inside my house, in most places that I reach for it.

Which I don't have outside the house.

You see how the fear builds so very easily.

Now, if I do things (whatever those "things" are) correctly, even in my current state the fall-probability is significantly reduced. .Much of the work at physical therapy has been in things like simply standing up, or transferring from the wheelchair to another seat (on various kinds of seat), and back. In the controlled environment of the physical-therapy sessions, the probability of falling and injuring one's self is significantly reduced. Therapists are very careful to simplify the environment/situation so that the only thing you have to worry about is completing the assigned task. It's a wonderful place to learn, to practice.

Outside that environment, I cannot control the "variables" like I can within the environment. Often it's very easy for me to get into the "do it right and that eliminates possibility of disaster" headspace (which is a nice thing about "do it right"), sometimes I get into the head of "Oh well—guess we can't deal with that." And sometimes I get into the "moan with frustration and/or despair" headspace, and I'm also too often knocking on the door of "let's just give up to start with" space.

Sometimes the best I can do is just live fully in whatever space I'm in. To be truthful about what's happening and what I feel.

New challenges every day. On so many different levels.

Homework

Learned a bunch of stuff about The Disease (and my expression of it) yesterday and my MD/neurologist/acupuncturist's.

He says that The Disease seems to have changed radically in the years of his practice. When he first started training in such things, he said that all this "bladder stuff" simply didn't exist. Some patients may have had them, but common? Rampant? Nope. Not on the radar, as a "happens to lots of people" problem.

Likewise "cognitive issues." Not a problem. Again, someone may have had them, but as a "general" or common symptom, nope.

He's amazed to find how many MSers have bladder issues. Lots of them, apparently... and "cognitive issues?" Yup, they're all over the place, it would seem. Although for many of his patients, there's stuff they forget but the "clear" thinking is very, very clear. Dangerously clear. As though it might have even been amplified by The Disease. A gift of M.S., as it were...

Now, the "having problems with names," he at least knows where that comes from. If you have lesions in a certain part of the brain's corpus collosum, you have name-remembering issues. At least that's clear. But why so many people have bladder issues nowadays, but "many people" didn't used to... that, he doesn't know. And, probably, neither does anyone else. Given the ads for bladder "control" drugs and appliances, which are also rampant nowadays, bladder issues may not be the exclusive fault of The Disease... but that's another question.

We talked about some of the issues I'm dealing with, nowadays; "sensory ataxia" is one of the fun Greek medical words he tossed off. What's there to be done about that? Well... nobody knows.

But one thing though, is clear, and actionable, and will improve one's life experience, the "experience of being alive."

Healing the spirit.

Classical five-element acupuncture is very big on this, there are many points that are very much intended for just that purpose. (And many of which I got yesterday.)

So, friends who tread the Neurological Highway, this is another treatment with no negative side effects, of which we can all freely, and copiously, partake. Yeah, getting needled by the right person in places like the Kidney meridian point "Spirit Storehouse" do have their advantages, but we all know what makes our spirit vibrate in its own special happy place. at its own special "happy frequency."

So there's my homework for today. Going to lie down for a while (yup, "that" is back again) and then I'm going to try to be happy, why not?

Labels; winning moves

On Slate.com today, Temple Grandin had some very interesting things to say about psychiatric diagnoses.

Now, she's living in a world of dealing with psychological disorders, many of whom may very well have neurological roots, and much of that does not have anything to do with the Neurological Highway that we MSers travel.

However, one word rises to the fore, and I think speaks very clearly to the MSer's challenges:

Label-lock.

I'll let you draw your own parallels between Grandin's and your own experience in interacting with the medical profession, or the Medical-Industrialist Complex, depending again on your own experience.

But another thing Grandin speaks of is a patient's condition being "on a continuum." The patient's state is not a click-you're-one-disease-label, click-you're-a-different-disease-label, it's a continuum.

I saw this very thing (not label-lock, but "perception of continuum") at my last physical-therapy session. My therapist said that in many ways, I'm a spinal-damage patient, classic symptoms of someone who has had very traumatic spinal injury... except for the things that I can do. I've got next-to-no proprioception below the waist, I've got very poor control of my legs, especially my left leg--except, I can "temple" my feet around something the same way Montgomery Burns "temples" his fingers before he says "Excellent." Which a nastily-damaged-spine patient would probably be completely unable to do.

This perplexed my therapist. There are so many things that I can do, which given the number of things that I can't do, don't seem to make any sense. Both the "cans" and "can'ts" taken together do not create a nice, easy-to-deal-with, label-lockable situation. Oh yeah, certainly I can be rubber-stamped as "having M.S.", but what does that mean, in terms of what should we do about it?

Well, it's auto-immune-something. Or so they say... Misguided/misbehaving  immune system. OK, fine. So now what to do we do? Trash the entire immune system? I don't think so. As Finn the Human (of Adventure Time fame) said to some creature who was threatening to drain his life energy, "My life energy? I need that!"

So, let's unlock the labels. There is no "I'm an MS sufferer and therefore I ..." lockdown that we need to impose upon ourselves. The label has its uses, but it's just a label, it's just a tool. And as anyone who actually, consciously, uses tools will tell you: The right tool for the right job. It doesn't matter how nice that hammer is if you actually need a caliper.  And as Grandin said in his Slate article, "Label-locked thinkers want answers. This kind of thinking can do a lot of damage." And c'mon, we're damaged enough as it is, already... who isn't? Grandin's arguments against labeling are specific to specific situations, and his arguments may not align with our situations.

Then again, they may. Because in Grandin's own words, "This kind of thinking can do a lot of damage."

Well, we can't fix the medical profession or the Medical/Industrialist Complex. But we can fix ourselves. As the computer in War Games said...