Maybe...

Some things about the MS Lifestyle are easy. To work or even live with, that is. Some things just keep getting harder.

Hunger, for example. I don't feel it. Haven't for years.

When presented with "maybe I should eat something," I generally don't want to. Even thinking about food, sometimes, is all it takes to get me off it. Sometimes, with medicinal-herbal assistance, I can quit forswearing eating, on rare occasions even looking forward to it. But those are daily rarer occasions.

This has got to stick in a caregiver's craw, as it were...interesting choice of terminology. Anyway, when asking the Sick One, the Caregiver asks, "What do you want for dinner?"

"Nothing" is usually the simplest answer. Well, that road feeds incipient starvation, so that's a poor choice. What else can be done?

"Nothing," comes the answer. This doesn't turn out well for anyone.

Is there a solution? Something we haven't tried yet?

God only knows, and perhaps, but that's about as far as I can go right now.

Well, that's a start.

Maybe...

Howl

I'm seeing my reactions to disability differing from moment to moment; sometimes hugely.

It has been at least a decade since playing the organ ... departed, shall we say. That was too huge and I couldn't process it, but I think I have finally just let it go. Every once and a while, I come against "Opportunity to play unbelievable instrument! Can't play it! Oh well." No cries, no struggles.

Some things, though, still make me gasp, even to cry out. If my legs get knotted up as I'm trying to do something which always used to be simple and trivial, I wig out. Like trying to put my feet under the bedclothes.

It's interesting that the organ, which was near and dear to my heart since I was aware of its existence, being a "can't" doesn't make me howl, but moving my legs, which I've been doing for only a couple more years, makes me howl when it drops into the "can't" zone.

An interesting gift, this MS experience shares... the consciousness of what is really, really, precious... because you don't howl over the loss of something that isn't precious. You may weep, but you may not howl.

A most interesting gift, it is...

To howl.

Where it all begins

Today's weather is taking me back to my years in Connecticut, in New Haven and Yale University.

One of the only times I took a sojourn for the holidays back here in Los Angeles, I remember taking a flight back... when we left LA, the temperature was 80, and when we landed, it was 8.

I also remember the amazing temperature truths about snow...

Snow can only fall as snow between 28 and 32F. Warmer, and it's slush or rain, and colder, it's ice.

Which means that we used to live for the days it warmed up enough to snow.

Another gift of MS, and one of the oddest... my progressive went wicked progressive here in Pasadena, in southern California. I'm pretty cold sensitive nowadays, but dealing with "it's down to 50 something" is a hell of a lot easier to deal with then "it's down to minus something." Which it too often was, back in the day back there.

And that being wheelchair-bound happened here, not there; a lot of the new construction has been to make things actually ADA compliant, but given the madness of stairs there... By some counts, that library you see in photo above, in the background on the right, has something like sixteen floors.

I have personally walked up ten of them, back in the 70's.

Yale is much like Hogwart's... The stairways do move, but over the course of years, not hours.

But it's an interesting life to live, nowadays... Some days, even here in Pasadena, the cold is bitter, or it's profound, or it's invigorating, or maybe even just cold. Ranges between crippling and "well, it is cold, isn't it?"

Certainly brings one back to what a friend of mine said he learned at the Zen center...

Pay attention.

What else is there to do? This is where everything else begins...