Friday, January 27, 2017

Crying...over you.

Do you remember the first time you cried? Not the I'm-hungry-there's- a-smelly-stuff-thing-near-what-I-think-are-called-legs. Hey! I-need-a-little-help-here kind.

When was the first time you cried because something so terrible had happened that you could not process it in anyway? When your parental figure just had to hold you and let you get it all out?

I'm sure there were times before but the first time I can remember crying, really weeping until my eyes hurt.

50 years ago tonight.  January 27 1967.

When I was a kid I loved the space program and, of course, dinosaurs.  Thereforet, this show made me happy...

But there was no Doctor to console me when I was 10 years old.  I knew the names of every astronaut on every flight.  I followed every launch and listened intently to Walter Cronkite and Jules Bergman talking Project Mercury capsules, Gus Grissom's capsule sinking after he splashed down in the Pacific and the Navy having to scramble to pluck him out of the sea before he went down with the ship.  John Glenn's words "Zero G and I feel fine, capsule is turning around.  Oh! that view is tremendous!" I have a Mercury capsule with GI Joe in it.  Right on my book shelf.  GI Joe and his capsule also came with a yellow 78 rpm that had the launch and a narrated version of Glenn's journey around the Earth.  That record is long gone, but I'm fine with it because my brain has been kind enough to allow me access to parts of the recording.  I have to take the small wins where I can get them.

Gemini flights with the Mercury Astronauts and other guys with the right stuff.  Ed White's walk in space.  Two ships docking practice. I have a plastic model of the two man Gemini capsule, all parts painted as they actually were - I had the books!  We were going to the moon.

In my ten year old memory, I had no concept of people "dying".  Everyone I knew was still there, and always would be.  My mother's mom had died when I was four, and I had no idea what was going on, and it appears my parents wanted it that way, as even today I have no idea of the woman or that time.  And now no one left to tell me.  So I just went on until January 27, 1967.

"People die," my mother said. "They're still your heroes, right."

"But they hurt...", I said.

"And you do too," she said.  "But there will be more."

More.  The world goes on, as I and most humans on the planet realize at some point.  The question is how fast and how far, and is it worth it to you?  You may need to cry again.

I'm not sure how folks will answer that.  But lemme tell you, ever since I had a wallet, in that wallet was a picture of Ed White during his space walk "floating on his tin can".  Two and half years later Americans were on the moon (really, they were).  And that day was one of the best days of my still young life.

Ed White  Roger Chaffee Gus Grissom

I still mourn these men, and am still puzzled why NASA used straight oxygen for the guys to breathe in the TINY Apollo capsule? Scientists might have remembered that oxygen feeds fire, and pure oxygen would do what, brainiacs? But....never mind.

While I may have shed tears in later times (that would be all of 3) nothing was like this day for me. People die. People burn up and die. Be glad you had the chance to know them. In any time.

"Challenger, go with throttle up."

"Crying over you,
Crying over you,
Yes, now you're gone,
and from this moment on,
I'll be crying, crying, crying, crying
Yes, crying, crying,
Over you." 

Roy Orbison

Man, I miss them still.

Friday, January 20, 2017

Spazzing is a MS thing or how to be a hypnagogic jerk

And now...spazzing.

I’d like to start off with my best spazz (uh..muscle spasms, a very annoying symptom).  Many of us have muscle twitchings as part of our own MS world (your symptoms may vary) but on for me, when I lay down my weary bald head, the twitching begins. Upper back, left arm, the upper left thigh, dash over to my lips, and a stop in the back before it repeats.

And then comes the best part, but allow the pictures and words below tell the story.

I was in a doctor’s office awaiting my wife Jackie’s return from her appointment with her physician.

A waiting room like this one, only there were actual humans in some of the chairs.  I’d put me in the far row, the second chair just below the right hand framed picture. And as I’m usually prepared for these waits (30 years and you should have picked up the pattern, or you won’t still be there in 30 years).  I had my book and my Starbuck’s latte.

And the waiting began.  The book was a thick one on the Civil War and, after 20 minutes, the small details of the Battle of Cedar Creek and the small print were starting to get to me (remember I’m drugged up as well), and my eyes began to close, but I bucked up, downed more of my latte, and charged back into the Confederate strategy of that mid-October battle.  And then....

This lucky guy here at least had his left arm to support his tired little head.  Me? When the brain had decided to go to neutral, it forgot (it does that a lot now) to pay attention to the update from the Hands department, that they had an opened hook in the right hand, and the left held the coffee cup.

So my body started to fall into a peaceful nap, but full hands and an empty lap, and MS, as many of you can attest, loves moments like this….

The dreaded full body spasm!  My muscles went all which way.

And, a second or two later the result…..

Dropped book and… (sigh)

and all eyes


were on me. I quietly picked up my book, cleaned the coffee up as well as I could (what’s another stain on that rug?) and retreated to my chair.  The eyes returned to what ever they were doing before I spazzed, but not without occasional glances my way.

See, this is where being sick has even more challenges because you wonder if you should try to explain why all your muscles all began going in opposite directions.  But unless you’ve got a plague like MS or  one of the other nuero ailments, folks will just say “That’s a weird thing ya just done, splattering your coffee and your reading material there. Arms and legs flinging all over. Funny. Still, you’re looking great!” and move on.

These muscle spasms are also night visitors.  Their favorite time is after you’ve snuggled into your bed and are starting that lull into a relaxed thought, the last time for me as I was thinking about crossing a street.  My right shoe stepped down from a cement sidewalk to a cobblestone street.  The “thought me” said “I better move my left foot over or I might tumble over -

Under the sheets my arms and legs splayed out, my eyes bulged open, and I breathed quick. I knew the score. MS 1, Tom 0.  I was now wide awake, and shuffled down to the den and read for about two hours.  Maybe I should have read that Civil War book again.

At, there is a good definition for this uh, thing:

A hypnagogic jerk is an involuntary muscle spasm that occurs as a person is drifting off to sleep. The phenomenon is so named in reference to the hypnogogic state — the transitional period between wakefulness and sleep. Hypnagogic jerks are also commonly known as hypnic jerks or sleep starts.

Is it really just an MS thing? No. But we, or I do, also have my legs numbing up so I’ve got a real careful moment when I get up sa-low-lee.  The bedroom is dark (though, having other brain problems, I see flowers and lace and swirling leaves, all white, but that’s another blog) and Jackie has not woken or even moved in our bed.  Anyway, start with and Google around.

One memory still clear in me is seeing my father sitting in our kitchen watching the small TV we had there in the late seventies.  He would watch for hours, breaking only to doze off, have his head start to sag to his chest, eye lids closing and then his body would spazz.  He’d look around and then turn his watery blue eyes back to the TV.  I was concerned, and slightly scared then, because, well, that it could happen to me, and as I researched MS I saw spazzing would be part of what this is drudgery.  And it is.  He had no idea what this thing was.  I know what this thing is and what it is doing and will continue to do to me. Which is better?