Vacation

Two things that do not work with MS.

1. Heat.

2. Activity.

Heat and activity combined could probably put me in the hospital 9 times out of 10.

Activity is more or less avoidable. Heat is not.

Two weeks of vacation at my disposal, and all I can do is lie on the bed and sweat.

I had certain vague plans--a trip to the mountains, swimming in the river, maybe a day trip to the beach. As it happens, however, my legs are not working, and every time I stand up I feel like vomiting.

Distance + energy required = a two week vacation in Portland.

I become, therefore, my wife's sopir, which translated from the Indonesian means driver. All day long we traveled about Portland and the surrounding area in her air conditioned car as she attended to business appointments and client meetings. As can be imagined, it was a heck of a lot of fun.

My wife and I are very unalike. Have I mentioned that before? Of course I have. In her mind a vacation is a period of time during which one can get even more work done than usual.

I myself had always pictured lying on the beach under the shade of an umbrella, reading a book.

Well, each to his own.

In any case, for the time being, like it or not, it's all about nausea, sweat, and profound fatigue.

A Scorcher

Hooooooey! Somewhere around 107 degrees now, and I've been driven from my house, in search of air conditioning. Old fantasies of moving to Arizona one day have now wholly evaporated. No Frickin Way!

Heat like this is also another first in my relationship with MS. I had thought in the past that heat really did not affect me very much--or as much, anyway, as I had heard other people describe. Now I know better--for this sort of heat pushes MS and the overtaxed nervous system way over the hill of no return. It's like a certain point comes where there is no way to cool the overheated wires, and little fires begin to break out all over. Sensation in the toes, never veyr good in the first place, gets shut off altogether--what toes? The brain begins to drip like hot wax, calf muscles simulate silly putty.

But Oh this Starbucks feels so fresh and cool. I fully intend to hide behind the counter later and sleep here overnight.

Earlier on I felt like I was going to be sick. Felt nauseated, dizzy, off balance, developed a splitting, throbbing headache, and felt as if I might at any moment vomit. But see, I had always loved the heat the past--the pre-MS past. It had never bothered me--no, not even heat such as this. So obviously something has changed, right? Well, of course it has.

If there is one feeling in all the world that I really, really hate, it is nausea. I have always felt sorry for those with MS who have ended up with the vertigo/dizziness/nausea symptoms. Yikes.

Well, sorry if this sounds like a weather report. I'm just finding any reason I can to stay in this cool air for as long as I can.

The Dance

He flails the limb

He cranes the head

And people look away

She talks and smiles

And acts a role

But knows not what to say

He totters, weaves,

Bumps off walls

The sober drunk with his useless cane

This is the dance

The unwilling do

The dance of nerve disease

Rise up and walk

And take your mat

Go and sin no more

Maybe the year is ‘44

Maybe the President

Is FDR

He did not mean to die

You see

But only to shower that day

I am the statue

Head of gold, breast of bronze

Feet of clay

I know what I was thinking

I know

What I meant to say

This is the woman

Who in the part cannot feel

and so on the whole will never conceive

It must be karma

She did something wrong

Now she has to pay

And the beast was torn

From the innocent child

And cast to the herd of pigs

Rise and go

And tell no one

Your faith has made you whole

Oh that is what I meant to say

This is the dance

The spastic jig

The waltz of nerve disease

Fishing

For now we see through a glass, darkly; but then face to face: now I know in part; but then shall I know even as also I am known. --1 Cor 13:12

I suppose that blogging is at least on some level a cry for attention. It is a will to dialogue, a will to share and to receive. It may even sometimes be a cry for help. It is certainly an avenue forged for the sake of connection--first of all with oneself, and then with others.

We go through life hardly knowing what to think of ourselves--how do I really feel, what do I really believe? Sometimes what we do becomes sufficient in itself to define. I am a computer programmer and I like bicycle racing. I am banker and I am active in various social causes. I am a husband and a father.

What about the rest? What about this scary mess of conflicting inclinations, multiple choice meanings; this struggle of opposites, this constant continental shift of who we are and who we want to be, what we think and what we know, how we feel and how we are caused to feel. Any man but touched by the feather of the unknown must fall, and begin again.

One's viewpoint, one's character, one's faith is very often no more than a passing product of the moment. The passion of thought causes us to speak of the part and not the whole. We end therefore in communicating prejudice rather than compassion, and we live and are perceived according to the incompleteness not only of what we have been able to express, but what we have failed to express, not to mention what we ourselves do not yet know.

A thousand words are expended toward describing what is otherwise clear in one beat of the heart. Language finds itself fishing for meaning and completeness like a child with a stick and a string--who moreover did not care to touch the worm.

My Miraculous Autoimmune System

It is a fact, said a preacher I was listening to on the radio this morning, that if a person maintains a positive viewpoint, smiles a lot, laughs often, and is friendly, that persons immune system will run at the top of its form, 100 percent. It's a fact, no less--and we all like facts.

Well, I can go one better than that (and honestly, I haven't even smiled that much); for, you see, my immune system runs even better than the norm, so very actively in fact that it hardly knows what to do with itself. Thus the onset of multiple sclerosis.

The Lord works in strange ways indeed!

Somebody shout amen!

Ghostwriter

I have a ghostwriter on Facebook. Things just appear--my status, comments to other entries, even pictures. I personally don't write there anymore so much as read what has been written. So far I have not said anything of a particularly disagreeable nature, thankfully; although I have removed one friend, which is not something I personally would have done (kind-hearted fellow that I am).

All in all, I guess it cuts down on time devoted to frivolous pursuits (hey, good name for a game--Frivolous Pursuit!), and though it is a bit disconcerting to find myself wondering what I might say on my page, it is at the same time a fairly safe bet that I am less likely under this present arrangement to say something I shouldn't have said.

Moreover, I suppose this lends an element of mild suspense to the progress of the otherwise predictable hours. I may even say something funny, or profound, in due time. I may even say it in grammatically proper English!

Delegate, delegate, delegate. Simplification is delegation.

Unhappily, my ghostwriter, my shadowy amanuensis, does not appear nearly so eager when it comes to the accomplishment of chores such as bookkeeping, check writing, dish washing and the like, even though these are matters which would seem more pressing, in my mind, than Facebooking. Or rather, let us say that tasks such as those just mentioned are more and more nudged toward my corner of active stewardship.

Oh well, we all must do our parts.

Between a Rock and a Hard Place

I wonder if any of you can imagine not having money enough even for a pack of cigarettes. My guess is that most of you can. Maybe we have all been there at one time or another. I guess the longer you live, the more often you'll find yourself broke.

This morning I had to make a decision. It was a weighty decision, one that I struggled over. Shall I lack this, or shall I lack that? The tug of war was between a pack of cigarettes and my customary Starbuck's cappuccino.

In the end the coffee won out. It is a bitter victory. What is a cup of coffee without a cigarette, right?

And so I'm sitting here, sipping at my unsatisfactory cappuccino, and raking my mind for some way of getting those cigarettes after all. (Is this sad or what?). Hmmmmmm.

There just seems to be no loophole here, no give in the situation. Maybe I should pray. Seriously. I knew a woman who prayed for a dishwasher and got it. Of course she was left to deal with the gaping hole in the roof through which the appliance had fallen, but still . . .

Maybe I'm just not using my noodle. I need to try to think in a more nonlinear manner.

Hmmmmm . . . .