I was diagnosed with Primary Progressive MS in 2010. As an extra treat, in 2005, I was diagnosed as bipolar. As you may see my brain is not working as well as it should. My father suffered the same disease and he was the same age as I (54) when MS really kicked in. The stories here can tell you more. Welcome.
On Monday of this week Jackie and I were leaving our local library when I could hear the light clack clack of those plastic tips on my shoe laces (aglets - yes, I looked it up) dancing around the brick sidewalk.
"Oh, my, I must tie my shoe." I said. We stopped and got out of people traffic stream.
I looked down at the shoe:
I had absolutely no idea how to it. Nothing came into my head.
It was like I was 8 years old again. I came to shoe tie time a few years after most of my schoolmates. I still cringe when I remember a gym class where we had to toss shoes around so they (the shoes) were scattered around the gym floor and we (students) had to find our pair, put said pair of shoes on, tie them, and reach a finish ASAP. I could handle the take off and throw, knowing what what was to come. "Go!"said the gym coach. Off. Toss. Find. Put on, and shuffle to the finish line. I don't remember who it was walking next to me, but he said, "Your shoes." I asked him to do it, begged him to tie them for me. Our class was a good size and the few seconds of not being with any part of the group would not be missed. He kindly did it, but that scene of dread has stayed in my mind since. Another thing I could not do right. I told my parents upon my arrival home that afternoon, tried to negotiate a switch to Hush Puppies, my preference, but was given one of my father's work shoes to figure it out. I could not go to bed until I did. So I sat at the kitchen and did what I could do. Of course, I was shown the general hints:
Bunny runs in the tree hole. And up and.. lost the bunny. Try again
Eventually, I got the idea, and completed the task, though I still like Hush Puppies.
So here I was with my wife tying my shoes while grade school kids ran by. Full circle.
That night though, I did not go to bed until I could move my fingers in their now limited ability until I had those aglets clicking in the right place. I could tie my shoes again.
Still I am at the age where a loud shirt, barely not waist busting shorts, long black socks, and a pair of these:
There's not a gym coach anywhere who would challenge me. I got my Puppies on, bud, and no matter how many other abilities come and go, I still got them Puppies.
Biblically referred to in Revelations, at the end of John's prophecy (John of Patmos, at 6:1-8. ) These hell horses bring famine, war, pestilence and death, to earth and yes, that same zany gang that started WW2 has zip to do with it. The Deity has washed his/her's/their's possible hands of the planet and gone off to this part of galaxy
No it was not these four horses... and I can still feel the clip clop in my head, but maybe's that's another thing.
No for a 60 year old such as your host, all that I needed was:
Meet Chuck the horse. Now if you've been here before, you know that a series of maladies has slowed my retirement enjoyment over the past eight years, and how I've been slowed in my working/writing (with some good help). The thing is, its like another spoonful of green lima means, has been tossed on top of your favorite food and just when you barely swallow that set, more lima means are dumped. And you know that, that wonderful feeling of nearing he dessert has been crushed. Lima beans are in my pudding.
See when you've got MS, you're always sleepy through the morning, drowsy in the PM, and stumbling back into bed, unsure at what points of the day you missed because you slept through them and then can't fall asleep. And you forgot to eat again.
So take that and add pneumonia (the second time in my life [ I'm better] and suddenly emergency rooms and after a lot questions, EKGs, blood samples. I was hooked up to an I-V for hours as the truly nice staff did all they could, though I wished the TV would have worked. Home at 4:30 AM. Collapse in our brand new super duper bed. And blessed accomplishment I actually fell asleep for nearly a hour before falling out of our new bed. You need to have mountain shoes to climb in and a prepared parachute to get down safe. The bed is one of those raise head/lift feet things, old couple bed. It took me a few nights of stubbed toes past the newly metal end piece. In all our years, Jackie and have had the same mattress, nor headboard, nor footboard. We were always going to do that, that is, but cash and stuff (lots of stuff) got in our way. To relieve the sound of snoring that disturbs my bride's dreams of shopping at Kohl's, I used a number of pillows to prop my head and get into the oddest position necessary to relax and hope that Jackie moved closer me, Mr. Warmth (now that Rickles' is gone, the title is up for grabs) and I find I'm driven to the very edge of the bed, below me a block of deep black nothingness disguised as a rug. But my terror at being so far not shoved me screaming to the floor. So I sit here, coughing and droopy - the latter being the norm. One of the horses went home, though did take his sashaying horse. "See you on the deathbed, pal!" he said chortling as he turned to fire and disappeared. "Don't worry," PTSD horse said. "We're still here. Blow your nose, but don't put the tissue on the bed cover! Think of your house! What, are you, someone who can........" "He's asleep, PT." said the MS horse. "Enough for tonight. See, Pneumonia, oh....He's gone. More cholera, I guess, someplace else. Call it a night, or by the way there's a veterans hospital just down the road." PT bowed his head. "In all fairness, sir, a lot of my brother's ponies have been there, terrifying the families by making TV soldiers even worse than he ever had it. Good riders, sir." And with that the MS horse in its ghostly form relaxed, and began to fade. "and another day ends," he whispered. He went to his favorite dream, the one driving a Cadillac, top off in the farm grass, his hair flying behind. This is living, he knew and he hoped he'd get to do the part where the world is but hay, water (for all needs), apples, and that nice palomino named....Zika. Wait, Chuck's on duty tomorrow. Great. Can't wait for those stories. Good ole Chuck. U.P. Chuck.
I always believe what's on Google. Stay with me here. I had an appointment with a cardiologist today, tests required. We arrived before the office actually opened and found that even the elevator wasn't even awake, so we climbed up three flights of stairs (Energy level 60%). After some pounding upon the office door, the one living person in the building responded to our fists and cracked the door open slightly and said "You're early!" and I was waiting for her to put up a sign on the door and say "Go Away and Come Back Tomorrow!" (Oz reference). But we were allowed in eventually and I was summoned. Lay down. Sticky stuff placed on my hairy chest, wires to a machine.
And, yes, I was wearing my toupee, OK? The technician gave a me a pity shave. Actually he did the shave and arranged it on my head Measured shot of goo into my arm, go sit down in reception. I could not eat or drink anything (except water - Perrier is my choice) so I sat and read. Jackie drove us to the office so the moment I had gone into the tombs, off she went to Starbucks, and so I sat and then was summoned back to the room, and there talked to the cardiologist. The average resting heart rate (HRrest) for a 60 year old is 72 beats per minute. 60 year old males average heart rates of 70 bpm while females average slightly higher at 73 bpm2. The normal resting heart rate range for all adults and children 10 and over is between 60 and 100 beats per minute. 90% of 60 year olds resting pulses fall within the range of 54 to 91 bpm. In general, an adult's resting heart rate will be lower for those in better athletic condition. This information kindly grabbed from Healthly.io. My heart beat per minute is 49. With some body movement I can get the beat to 55/56. This also means that I should be running for marathons for Nigeria, as that' s more in their territory. Only 5% of the men on the planet have such a heart beat rate and I am not sure if all of them are runners for or from Nigeria. Me? Run? And heres a cool note. University studies (on the web) show that only horses, elephants, and large whales have a slower heart rate than me. Hamsters run close, though, at 55. So we made a slight change in my prescription. Change one pill to 1/2 a day so it becomes
to bread crumbs
From a pill that was 6/16 of an inch
I am in the market for any ginsu knives. You see how tiny those pills are? Jackie wants the knives so she can (ever so slightly) touch the point of a knife to my forehead to see if I'm asleep or dead. Just a loving tap, I hope. The title of this piece comes from the electrocardiograph sound of the heart beating. If you ever take one or even listen to a baby in the womb, that's the sound I hear. Google told me about the ability to see what the heart beat means. I'm waiting to hear that We-yrr, We-yrr, We-yrr..Dogs' heart beats are three times faster than mine. Maybe I should lay down in the yard and pant.
Energy --maybe 1%. I'm going to bed. Curl up on the couch, or maybe under the desk. More updates from the floor of my den soon!
For the last few weeks, I've been laying low getting used to the warmer weather, and the continuous adjustments of my scripts to find some fit, and yes including the little Gang Green pictured here. After the three pot pills in one day fiasco, I used them on an as needed basis. So far, it's been fairly no need as other medications are working fairly well, the only problem is getting the medications approved and to me and for me to remember to take them.
I am also now required by MS to take a nap daily whether I am prepared for it or not. I'll be reading and then my wife calls me or I drop the book in my hand(s) and open my eyes in surprise that 45 minutes has been sucked away. I'm okay most of the day, morning after breakfast, Deathwish coffee, and review of the news. After the 6:00 PM news, I'm good for the night. But on days where I don't have water therapy (like now) the mid afternoon plays a sleepy enticement. However if I'm involved, like today doing some writing away from the house, I'm fine. When I was working at my last job, I'd just get up from my desk, where droopy Tom would be sitting looking at data sheets, and I would go get an espresso or latte. I got fatter but I stayed awake.
A lot of this was brought back last week when I opened the newspaper and did my usual read the comics first and then through rest of the paper, always checking in the obituaries (this is an obligation for AARP members) to see if people you knew long ago like high school and stuff. That Wednesday I saw a picture, of a gentleman I had known as well as anyone can with walls we put around ourselves at our jobs or life.
My boss had died, and here was his obituary. His name was/is Ed. His picture had him smiling with a Boston Red Sox cap upon his brow. I read it through a few times to re-acquiant myself with him, and I could see him semi-running to meetings upon meetings, myself and few other of the minions keeping with him as best we could.
Keeping up with him was twice as tough because I also had worked for his wife who ran another division in the same department. I began at the county department of social services in 1986 and in 1994 I was told by Ed that I had been "traded" to his wife's division and then in 2001 was sent back to Ed's part. What has amazed me even more was I running through civil service titles so that from 1986 to 1994 I went from a team supervisor to the assistant director of Medicaid. I hope I did OK.
Energy level 20%
Funeral time. There wasn't any big fuss, but it was wonderful and sad. I could remember most of their names I'd worked with and hunted down the dear ones that I really wanted/needed to see again. Some looked exactly the same, others it took a while to remove ten years from others and see the nice guy or gal who worked over there with What's His Name. My MS was mentioned by many and with kindness. Energy level up 10%
So we got through the evening. A number of people noticed my tie which was covered with the Red Sox logos, and Ed's wife was very grateful I did and we walked her out at the end of the service, and I headed to my writing class. Certain workers told me that the tie was a suckup to Ed. Then why did I keep it long after Ed retired? I dunno, but just in case (like a 2013 World Series win)But I will never wear it again. Energy level down 40% with a plus 30% for seeing old friends.
The next day was my wife's birthday. We got off on an unusual start (that will happen more) as Jackie wanted to leave ASAP, and I try but finding dawdling and getting all I need to take a little trip. Jackie was a little annoyed (OK, OK, a lot) when I finally arrived. She was in such a tirade that she pulled out on our main street and never saw the massive SUV heading right for us. I yelled at Jackie. She cleared the car, and we went on. And then just missed being hit by a second large SUV around two minutes. I yelled again. Jackie quickly adjusted She was flustered plus infinity, even asking her MS husband if he (me) wanted to drive instead. I declined. Otherwise, we moved off into our activities for the day. Energy level down 20 % as we reanalyzed the situation again and again, but a nice dinner.
Saturday was an open day so we did different things. I will give it a zero change.
However while reading I dozed off twice sitting on our way too comfy couch.
Sunday was a 5:30 AM wake up call for a trip to Citifield to see the Mets play (b. Fell asleep on the way there and the way back. I think the 5:30 AM wake up did that one. The Mets won the game, not that the victory made me or the Mets any better, but I did have my first mint julep. Gee, potpies and mint juleps, bourbon and vodka. I always wonder how I could be the grumpy private eye novelist
guzzling cheap beer and hitting the keys, like Mickey Spillane..
Energy level 20% down.
Yesterday I was watching a ball game and was suddenly pinched by Jackie and given my dinner. I had fallen asleep unbeknownst to me while staring at the tube (because I would have known if I was awake, ya see). No offense, TV shows.
So today, at 5:50 EDT Wednesday June 28 I am still awake. No naps. Just busy and trying to stay that way.
One thing I've found, though, if you ever take a relaxing sit and are thinking away, carful, because MS will grab it and off you go, into sleep time, until SPASM! You wake up suddenly, and if you're lucky no one's around to blink wondering eyes at you. If there are folks, a quick coughing fit might fill the bill.
"Sorry, just a small vile attack of this disease that has not treatment or cure. Would there be any bourbon around.
And I swear I will never take another three shot of the new pot pills I'm on now.
The pills (take one when you feel necessary) were just sitting there and I shall state that the dispenser guy did say up to a maximum of three. One of the neat parts about being bipolar/MS is that you forget things. Did I already take this pill? Is this my shirt, or yours or just a shirt on the new floor. You're the blonde I'm married to, right? (She continues to claim to be that individual, OK so with me! So far!)
Anyhow, it was Sunday and we were home and I'd taken two of the 9.7 THC pills and felt alright, like on a Wednesday afternoon when I was still working but stopping now and then to look a the tree outside my office. Sturdy and weak with giant wooden arms supporting small buds on just slightly larger sticks that pull away from the mother trunk ...
Yeah, it kind of started like, but ended up with this....
(OK, quick history lesson. I love baseball and that has been such a part of my life, that I mourn each days from November 1 - Feb 15 as wasted days of life. To celebrate this enthusiasm, my parents bought me a "Sports Illustrated dice baseball game." You rolled some dice and looked at a chart to see what the batter did. I only played a few games with it and next year it was replaced by a game called APBA baseball. No, I don't know what the initials mean, but I think it was what the founder of the game's own baseball card league. American Professional Baseball Association
So anyway you pick two teams, get your lineups ready, scoresheets, and beverage and then roll the two dice and see what happened to that leadoff batter. End of lesson).
Oh, this is an APBA card:
For me that night, I was playing a game between Boston and St. Louis. Boston completed a series with the Cincinnati Reds just earlier that afternoon, (Another quick lesson. The player cards come in manilla envelope that identify the team and league like this:
I hope you see the cover in upper right. The team is the Dodgers, but APBA figured if you'll fork over 40 bucks for the game and cards, why should they slow the cash flow by re-signing up with Major League Baseball to put authentic names to leagues, teams and in a few cases the players. OK, 'nuff said.)
As I sat there at the kitchen table around six PM Sunday, prepping for the Boston/cardinals when the table seem to bubble and the player cards of the Reds/Cardinals/Braves seemed to slip into the wrong envelope, moving away from my hand as if my selection of him for shortstop for the Cardinals was the wrong one (it was. That guy's a catcher). But the cards were still moving from hand to cover to lineups, and then the little brown things came around to help move the cards faster.
Decision time for moi. Am I actually asleep here? And this quick move to dream session normal? I had no sense of moving my body but my wife only sitting about 10 feet away just saw me looking at the cards, and not seeing the war raging between the Reds and Cardinals across our kitchen table. Baseball blood!
So that was my "high". The part of me that still thinks I am fine told me just to breathe and relax. And, much to my amazement, the pot images went away. I just sat there. Breathed. The third pill was fading out. The cards arrived at their appropriate sleeve and all was right.
And that was probably the first/ last time with Three-fer-me. The pills (THC) do help in the middle of the day when I am starting to take a nap, spazz out, and see if anyone noticed. Since it is only Jackie here it would be thumbs up or down by the Empress and a very concerned look at her husband. Nah, keep this one close. Just one every 8 -12 hrs.
I was too boring as a kid to know much about drugs, except Excedrine, Kaopectate, Pepto Bismol, pimple purging pills and the clear Avon products my mother bought me. I did see more of marijuana in college, and stayed away from it. Why? because I am letting someone/thing take over. And that is not allowed. By the way, all the pot brain girls needed a ride home...And I just happen to be sober and have the Mystery Matador:
I did OK. And with the help from the support crew, I will not prevail, but I'll make it as nasty as I can for MS, like put it into the back of that Matador and drive cross country with my family. Car parts will render themselves useless, unless you need air for a flat. That's why they made Stewart's shops for. And ice cream. Hey how bout this - Ice Cream Brain Freeze and the three pills? Then look at the baseball cards.
Monday I had settled in on the living room couch, TV remote in one hand, warm coffee cup in the other. Before me lay on the coffee table (a relic over 50 years) a small pile of books I can peruse while Masterpiece Theater goes through its beginning of thanking rich people for giving them money and encouraging them to take boat rides around Europe. I more wait for "the not rich" people "Thank you" because I actually write checks so I feel I can pay for a hair cut on, or half a one, for Daniel Day Lewis.
Time for "Wolf Hall" author Hilary Mantle's book on King Henry VIII, and his six (VI) wives, as seen through the eyes of Henry's friend and advisor Thomas Cromwell. The characters just seem to stand around and shiver, or die because they can no longer stand shivering. Cromwell just walks into rooms and looks at everyone there, and then goes another room and looks around and then he'll be mumbling "Save this queen at least!" A British documentary had the author become a small bit player but enough to see. Three nights, six wives, Boom! over, instead of six episodes, and two queens. It's a thought. I have them. Thoughts.
I have been approved for medical marijuana by the State and a doctor in Angola, NY. I was never sure if Angola was a small southern African Nation with a penchant for civil wars or a small, dying population also in need of food or the Rust Bucket remainder stretch of broken dreams near Buffalo. This led to the usual paper chase for a 60 year old trying to do paperwork and follow up, take a short turn down a street and just a million screams of the Hellroad will the be subject to your object! Finally, an answer arrived and it was, through the magical of the inter web, an ID Card, and knowledge that I now have to learn - what my assigned case number is with the FDA (FS3473838)
Here's a picture of one the cannabis pills, just mere seconds before being consumed by me.
I took the first one around 10:00 this morning, and like I said, at 6:25 pm 5/12/12. Still staying smooth, with minor bump or two, dizzy spells, and just keeping a watch over moods. All part of the standard MS world. The shoppe for Pot is located on a back street in Albany, not in what you'd call a nice great area, or maybe it was when Roosevelt was in the governor's chair (Frank or Ted).
The pills may help, they may not. But I have nothing sure but a certain stretch of moments that will go from now as you read this to when the moments permanently st-. So it allows me to toe test the 1960 or '70s other tradition while I more grooved (oh, please) with the music. But back then I could only smell what came from a dried dusty weak, dare I say weed? stick could produce maybe. Never tried it in any form to see if it worked, or if you had any reason you really needed thought you needed it. But I was never in the cool students groups and agreed to be a tripping victim on Thursday morning in front of science class so I could maybe not be harassed that or any day?
The info on Cervical Cancer is about (for me)t an old friend, but old is the wrong word, she was/ is one part of my life that had college, first job, and the fun times in between tragedies. We parted nearly 35 years ago, but I could keep an electronic eye on her through my job, though more from a database, nothing personal but that just to see if she was still around. This friend, who with me tagging along, went to concerts of rock stars across New England, Jersey and into Pennsylvania, is now stuck in a wheelchair as she fights a bizarre version of, oddly, (or maybe not) MS. Now, neither of us move well, or are not that good thinking. She was always right, and I agreed. And I helped her laugh, she said. Yeah, I could make her laugh. Wish I could now.
I'm just that guy from that PBS series Wolf Hall, Thomas (Martin) Cromwell. I just go to rooms and listen, maybe say something to someone, but mostly just be in rooms, listening, and waiting for something. I'll think of what that was at some point. Probably. Well, maybe.
"Free Marijuana for sick people. Can I help you get sump'n?"
Uh, yeah um I'm Tom Martin and I was told that I need to speak with you folks to -
"Yeah, yeah, Everybody's needy, my friend. Who set you up?"
That would be my Psychiatrist, Doctor U* and he -
"Wait, wait man. Your psychiatrist wants is Doctor Who?"
No, no. Not The Doctor. MY doctor is U******. He's local.
"He ain't got a Tardis, huh?"
Right. No timelords need apply. But I did hope to find out what I need to do get marijuana.
"Wait, how old are you?"
I'm, uhhhhh, 60 ish."
Still there, sir? I asked.
"Sorry, man. I can't believe a guy that old has now idea how to find weed, at some point. Now just for me to be sure, if you're 60, you must have gone through the 1970s, right. Plenty around as I recall, or rather I have been informed, if you get my meaning. You must have been in high school or college. There must have a buddy who could have set you up."
There was. I just never went to his setup. Look, I'm supposed to be interviewed for the program, so maybe we could...
"Guess what? This is the interview. So far you're old and confused and have been since Nixon was in town. No wonder Doctor Who wanted you prepped. Now next do you need instruction in assembling a doobie?
Look, I've got MS and whatever goes in the paper will fall right back in to the can. I'm using pills for it.
"Well, that ain't much fun. You see, you shoulda started years back, I'm telling you. You would had have an occupation or a hobby in the nursing home -
I live in a age 55 plus condo, please.
"Yeah? tell me how many pills they got you on? All your doctors."
I think its about 15 or so.
"Fifteen? Dude, I want some of that. I'm a missing a moment here."
"No, man you got a nice apartment that's 55 year old, and you've got yourself 15 scrips? Food? Cable? Heat? You're fine, fella. I want the names of your doctors."
So you can get some of what I'm on? Nope. You don't want it. But really you should have all the paperwork, anyway. I had it faxed over.
"Wait a minute. Lemme see Lemme see. Nope. Your name was what? Oh, yeah. Nope sorry. The doctors who gave you so many pills were too busy giving out even more happy pills to other sad songs like you."
Some people need them, sir.
"Sorry, man. Look you're gonna have to do this yourself, at least, to start. We are only as good as the information we have, and we got none on you except your name, you live in an old folks home and you're drugged up your whazoo. You gotta hit the streets, my man, and don't let the streets hit cha back. Little joke there. Get me stuff and then I can set you up with stuff."
OK, I'm 60 years old and now(!) I get to experience medical marijuana. I have a sudden weird need to wear bell bottom jeans, put on a pastel shirt, let my hair grow, and groove out to the Saturday Night Fever soundtrack. I wish I had hair to grow....
Sorry, Little Buddy. Should've tried that pot the Professor snuck on the S.S. Minnow to try on Ginger and Mary Ann.
I don't have to roll my own. I would not know how to roll anything except maybe dough, and that poorly. Try and keep teeny weeny seeds on a small cut of paper when your hand shakes just a little
And while I'm at it, why are pills round? What's wrong with ovals? My oval pill does not try to flee. Gel caps try incessantly to get away and some times can for a while, hiding under the couch. What's wrong with a trapezoid? See that triangle pill? No problems. But even as they are placed onto my tongue, they never stop trying to flip[ out, leaving their nasty taste so I have to use two full glasses of water to get them down, which goes into my kidneys and that's a whole other column.
I mean take a look at the picture. The pills are grouped by time I take them. The pills on the white square are breakfast pills. The ones on the left are lunch pills, the four below nighttime. There's also Clonzepam in its nice sealed square packet, which merely temps you into thinking "well, I can get this ready to pop into my mouth ". The pill emerges as you tear open the packet and immediately seeks freedom away from where it is supposed to be - my mouth. And the search is on - where on the beige shag carpet could it be hiding?
For the last ten days or so, I've been without a number of these pills due to a payment screw up between Medicare and Blue Cross insurance. I may be the culprit as I still try to master computers as if I still know what I'm doing. OK, I can luck out and do Class AAA job, but I've sort of become a B minus guy. I get the basics, and maybe that's all now.
The loss of the pills made my body twitch more and more, instead of the minor blips of even a week before. That and my temper was resurrected from its grave. Sleep was just nightmares, and only quietly screaming about not going to bed, but the body and mind tired of whatever I did thought and in I'd go and my personal Twilight Zone would begin.
So medical marijuana joins the group. I shall keep you up do date.
And oddly enough, the first song that came on my iPod when I was taking my shower was "Got to get you into My Life", Sir Paul McCartney's song about pot.
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.
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.
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 livescience.com 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?