speech and thought

After having some difficulty annunciating the ‘set’ in poinsettia, having it get trapped somewhere on the tip of the tongue, repetition of this world will only cause more of a blockage. So i walked around and looked at the items in my house. I always liked doing such a thing, appraising objects by the value of memories behind them. I looked at the little polar bear blanketed with coarse, worn fur, and remarked to my mother on the very new-to-me discovery, the head moved. you could rotate the polar bear head 360 degrees. After a lifetime of what i thought was familiarity with this object, the back left paw that was chewed by my brother, the prickly white fur, the glassy black eyes i learned something new, or perhaps just had forgotten that i had known it.

Back to poinsettia. Standing, the word came out this time. it was easier without frustrated unrealized effort looming over the tongue. Repeating the word a few times as i walked downstairs seemed to help place me, then i repeated it in my mind and could hear the hiss of ‘set’ and almost feel the relaxed mechanisms in my mouth and throat. And i thought how curious it is that my thoughts are all limited to a physiologically, well coordinated set of movements. I wondered at my thoughts when i was a baby, before the utterances had been pronounced by my own tongue. What was thought then? Was it something similar to what thought is now, when it seems to pause in the middle of things, dropping into a black hole, being sucked inward and becoming totally void. But not void, it is there in the form of half conceived notions and words, all bubbling up but bursting before formation. yes, the metaphor of the bubbles sums it up best. and my mind grasps at them just like tiny hands reaching, eyes lighting up with fascination, fingers stretched, but it burst on its own before i have the chance to tangibly touch it and transform it into soapy wet foam on my fingers.

“Poinseee”- pop!

CCSVI

The body is a finely tuned instrument, and when one cord gets out of tune a symphony just doesn’t sound the same. Whether CCSVI is the foundational problem leading to MS or not; it is most certainly foundational to the symptoms many people with MS struggle with. I read people’s blogs about having their veins liberated and the brain fog dissipates. I try to imagine what that would be like. I see myself on a sterile medical table- complete with white sheets, masked faces, and trained eyes.  I think of the many things I desire that would be so much easier to accomplish without the fatigue; without the millions of little pricks and twists and tugs and general falling apart of the system. To feel that weightlessness.

I’m not so bad off. I can walk- really walk- without assentive devices, for short to moderate amounts of time during the day. For the rest I use a cane. Oh, and clog shoes. Sometimes it is easier wearing the clogs and walking, sometimes without. For a while during each day I can feel myself suspended from the ceiling or sky from a string. My spine supports my whole body. But eventually there is the snap or the gradual bending. Try to right it and I gradually feel myself falling to the front, the back, left and right, like fragile beach grass bending to winds I can’t see or comprehend. What would it be like to have that lessened at least to some extent? What would it be like to type for hours and not slow down like a train going up a steep hill, eyes unfocusing, brain loosing its place? Then what would it be like for those people who have no momentary relenting of symptoms? For those that can’t walk normally all the time? For those that constantly have spasticity with no relenting? Who deal with constant pain? Even the lifting of one problem would make such a difference.

Oh and what would it be like to go to a museum and be able to look at the paintings higher up on the wall, or to turn my head up while standing and look at stars?

With MS, at least in my case, I feel at times like I am being pulled back into a tunnel, unable to concentrate on what people are saying to me. I feel like I am not even there? What would it be like to be fully engaged in a conversation, and not loose concentration after 10 or 20 minutes?

So, I know this desire I have is shared by thousands of people who deal with the same issues, or worse issues. We all are wondering what it would be like? Should we really have to wait till it may be too late? Shouldn’t some of the research dollars be going toward designing a new type of stent that would withstand the turns and twists of the neck? If we can’t find it from Big Pharma, we’ll have to find it somewhere else.

The flood gates have opened, and we will gush forward; blood flows to the heart.