Saturday, March 22, 2014

REALLY facing loss

This is a hard one, to write about.

All of us MSers pretty much get a face-plant into "this body eventually stops working the way we had becomes accustomed to."

So now I'm in a wheelchair. So now I'm in the Cath Club. So now I can't raise my wheelchair into the back of my truck so I can't drive places without help at the end of the journey. So now I can't deal with eating anything unless I have the right medicinal herbs to help my appetite.

We can all go on for hours. And not just MSers, all of us who have come to this incarnation eventually "get" to deal with such things. For too many of us, to "deal" with such things.

But something really slapped me hard... fine control over my hands, today it's especially my right hand which has always been my first choice for "fine control."

Try to use chopsticks to pick up something. I used to be really, really good at chopsticks. Apparently, not so much today.

Try to use a spoon to feed yourself. It feels like I'm going to lose all control over the spoon the second I pick it up and try to use it.

The mouse and the piano-style keyboard, for writing music on the computer. I can almost not use either. Lord, I tried to show somebody how the finale to Widor organ-symphony 5 worked, and could barely operate the keys even badly.

I drop things all the time. "Oh, why don't I just throw all this stuff on the floor," I find myself saying. All the time.

I tried to fold a shirt that I had just somehow put through the laundry, yesterday. Didn't work.

Tried to pick up a piece of cloth to wipe my glasses. Almost couldn't.

OK, I can just hear the trying-to-be-wellwishers saying things like "But no, you DID very nearly fold it! See, that's a triumph!" Yeah, well, I don't feel that way.

My legs took quite a while to "give out." I'm hoping that I can get them back a little closer to functional, for things like "stand up and take that off the shelf without dropping it," but things like playing the organ? I think that's ... over. Which, unless something radical changes, it is. And although that was painful, losing playing the organ, it took a while to get to the "can't get there from here" point, and the line in the sand between "you can" and "you can't" took a while to draw. Which maybe, maybe, made things a little easier. A little easier... maybe.

But this "hand failure" is coming at me so fast that I'm just watching independence and accomplishment vanish... even for small things like "mash up the avocados to make guacamole," which my hand was nearly unable to do. Nearly unable to even stir the avocados.

And let's not go into "what do I think," the better question is "what do I feel?" I feel... and this is the hard part... well, I scream when my hand fails, I think I feel fear. Terror. About what, doesn't matter; what I feel, does. I feel...

Terror. And loss.

Now, long ago when I started this blog, it was about gifts. About learning things. About finding the new, even the funny.

I haven't found any of those things. Yet, at least. Is there a gift there, waiting for me to discover it? I say "yes" very quickly, but truth be told, I ain't there yet. I feel terror, and loss.

Which maybe is the gift. Telling the truth. Witnessing the truth, no matter what it is, no matter how terrifying it may be or how much grief it brings me. Because facing those things may be the gift it has for me.

Just because people like Ram Dass speak very soothingly on loss, or that "everybody has to deal with it," doesn't make things easier. (That one, I've always been infuriated by. Yeah, everyone has to deal with it, and that lessens MY pain... how? They're suffering TOO. And that's supposed to make me feel better... why? Everyone in the room has a grand piano sitting on their face. That makes the piano sitting on my face weigh less... how? That makes my face feel better... how? Other people's suffering does not lessen mine. If it lessens YOURS... good for you.)

But this loss... I can't get through by "living in my head." This, I've actually got to face, and deal with.

Is that the gift?

... mmmaaaayyyybe...... ....  ............


Judy at Peace Be With You said...

MS sucks. Sorry things are taking this turn for you.

Judy at Peace Be With You said...

Robert, you have inspired me to add a feature to my current poem, in which I will provide links to posts which are also honest in facing the reality of MS.

Robert Parker said...

And Judy: Thank you so much for the link!

Your poetry is honest, and true, and beautiful.

As always!