Captain Fatigue vs. Me Episode VII - MS Awakens

I'm sitting on my couch watching a baseball game - Red Sox at Toronto.  The Red Sox are winning, which is nice even though the Sox are sitting in the basement of the American League Eastern Division and won't make the playoffs again.

Oh,well.  Red Sox, lately, it's https://youtu.be/D7nb1bgicME

No. Wait.  They just rallied.  Now they're winning. Whoa, they're giving the lead back. Not again!  Oh, never mind.  They held on in the bottom of the ninth.  Whoa.

The above was not what this post, which I am sorely lacking in keeping, was about how you try and have a regular life, but Captain Fatigue always gets his bloviating way in his never ending attempt for bodily domination.

Like having a party.  This year my wife and I celebrated our 30th wedding anniversary and her 60th birthday, plus a noting that 5 years after the diagnosis of PPMS, I'm still here, still standing (though if no one is using that chair, could I borrow it? Thanks) still doing yard work (for maybe 20-25 minutes an hour then one rest and then.... Hey, there's a Star Trek rerun...I'll just watch a few----------------)  and writing ( though I must admit that what your eyes are moving along with here recognizing symbols for sounds which is transformed by your brain as words is all I've done this week).

We've never thrown a party and invited friends and family.  Aside from our wedding, and a small graduation party for my Master's Degree, rarely does everyone appear in the same city, not even mentioning the same room.

And it was a lovely room at a local winery.  This one:

So we provided the funds, they provided the wine and the space, and after going through three possible caterers in one afternoon, we had the place lined up, and guests invited.  The attendees included family, friends and (former) coworkers.  There begins the first line of trepidation of how the mix will go, who will talk to whom, if anyone would or will it be four groups in each corner, eating pizza on paper plates, and waiting for the polite time to leave.  My wife and I did our best to have the place decorated with balloons, Official Jackie and Tom Memorabilia, and small gifts, plus our scintillating personalities.

It would work out fine, I thought.  Or I thought I thought.  But Captain Fatigue had started his whispering crusade.  And he at the best weapon any MSer has - My Twelve Spoons.  If you're unfamiliar with it check here: http://www.butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory/

Captain: Did you take your afternoon pills?

Me: Um, yes.

Captain: I heard an "Um" in there.  You're not sure. How about the red one, the long red one?"

Me: Yep, got the Amantadine. (I hope).

Captain:  Look, kid, I've only been living in your brain for five or six years now.  You know the ropes almost as well as me, but you'll never know it all.  So for this special occasion, on account of how much dough you blew on this and the stress of putting on yourself this shindig  (Glad I could be of help, hee, hee)I'm gonna, let's see, three hour party, spoons here, there, oh yeah, crisis there, that's a bit more.  OK, this show and dance is gonna cost you around 13 spoons. And the Amantadine will kick out around 7:30 PM.

Me: 13 spoons? I only get 12 a day. Where's the other one come from?

The Captain in his spiffy naval commander uniform guffawed quietly.

Captain:  Look kid, you belong to that Disney condo thing, right? I haven't had time to check where in the brain you're hiding that info now.  Darn Re-myelination. Anyway, you know if you want to do anything special at DisneyWorld, like the fancy schmancy Grand Floridian Hotel, you gotta use your points for the year, and then borrow points from next year.  Same with Spoons.  You want to do something special? You gotta use the spoons. Your cherce, kid. Or stay home and watch the ballgame.  You can make that early morning meeting you've got.  Me, I gotta get down to your digestive tract and pull some levers. I love lever pulling.  Enjoy, kid.  Oh by the way, you will be so exhausted you won't be able to sleep.  Ain't that weird? Nah, that's MS.

Captain Fatigue was right.  The party was great but I could feel the draining begin around 7:30 PM, and for the last hour just plopped in a chair and visited with folks even my own family and we got through the night with no casualties, and everyone went home happy and with a candle.  We packed up and headed home.

I have never been so tired in my life, so drained, but of course not sleepy at all (like tonight as I'm writing this on Sunday morning at 2:30 AM) and so I remained miserable until felt a Spoon or two click into place.  Low grade moving around Saturday.  Jackie was affected by our collective sigh and availed herself of some naps.  I was looking at a crossword puzzle that Jackie had half finished and I could barely read the clues. The puzzle is still on our coffee table.  I swear Captain Fatigue was jiggling every lever he could find - mass itching, toes won't work, and there seemed to be invisible bricks attached to my legs.  I have never in my life had a hangover. Even in my deepest depression, nothing like this.

But tomorrow, technically Monday September 21, is our actual 30th wedding anniversary. And what a long strange trip it has been. But I have my wondrous partner with me still and much to do, whether Captain Fatigue cares or not.

13,000 views? Wow, thanks for sharing the ride.  Coming Next - how to fall down the steps of the New York Public Library!

Tom Seaver, The Christmas Season, Elmo and Buzz Lightyear, and NYC.

Actually, this is more of a love note.

Jackie and I were in New York City a few days ago to take in the feel of the city at Christmas.  We did all the usual things - Rockefeller Center, saw the Tree with required picture, Saks' windows, St. Patrick's church (where God has a small apartment, but He's on Mercury now getting some sun while the church is renovated), great meal, and then I could not take it anymore - Stop Badgering Me.  OK, maybe it was my own fault. I wore my Mets heavy jacket and cap.  It's warm with tons of pockets, and the cap fits on my head.  Normally I just wear a baseball cap, and generic but matching coat. But this time I got it full blast.

If you haven't been to Manhattan recently, you'll notice that its slightly more aggressive in its marketing. Nearly every street has some huckster(s) trying to get the gullible couple(s) into a bar, bus, and if you are wearing something slightly noticeable like I had, you would be asked to stop and talk about the Mets (Hey, you, from Queens! Come on in! Mets got Grandy! Ask you a question [this type of marketing is in every mall - its the courtesy in us to that makes us stop, with the obligation to buy], and hey, man get your picture with Mickey Mouse (for tips - stick them in Mickey's pouch), even if it's the slightly psychotic Mickey coming down from a heroin fix.  And these two:

who should be even more terrified of the UPS truck heading for them.  What can Brown do for you?

Then there are the beggars asking you for money, and the Salvation Army group has found the funk:

And when you are not being asked for money, you must take flyers to a going out of business sale, spread the teachings of (Someone Here), go to a gentlemen's club, or get on a bus to tour the city when it is 10 degrees out.

After eight hours of this I told Jackie "New York is a great place to visit if there is nobody else here."  I would allow robots to work in stores and prepare excellent food.  NYC Public Library should be open 24 hours a day, and there should be just as many Mets as Yankees stores.  In fact, more Mets stores as we need the publicity.

Which brings me to Tom Seaver.  Tom Terrific was and remains one of my heroes, though he stopped playing baseball a quarter century ago.  He was the face of the Mets, and is still The Franchise.  He and his compatriots took a lousy team and finally got it serious, and the Amazing Mets of 1969 shocked the baseball world, and I had found my team.  Tom won Cy Young awards and pitched in two World Series.  While the sixty-nine team still gets the headlines, my love of baseball stems from the 1973 team that roared from last place in the summer to first in October. What a ride.  They are My Boys, more than the '69 and '86, and about tied with the 2000 team - What are we doing here playing October baseball?

Stupidity and greed sent Tom and other useful elements of the Mets off to other places, and we suffered through more mediocrity led by Hall of Famer Joe Torre.  Tom came back in 1983 to put some fannies in the seats of Shea and Jackie and I saw him pitch on Father's Day 1983.  I got to see him, and later he autographed a ball for me.  More dumb moves sent Tom to Chicago and he stayed there long enough to get his 300 wins before retiring after 1986 (oddly as a member of the Boston Red Sox).

Tom makes appearances now at the Hall of Fame in Cooperstown and other places, but he is mostly occupied by his winery.

And Lyme Disease. Third stage Lyme disease.

"A few months ago, I thought my mind was going. I couldn't remember things." He thought he was suffering from the onset of dementia. He became fearful, withdrawn, for the first time in his life. He was afraid he'd get lost in the New York City streets he used to own. After some tests, it was almost a relief to find out that he had Lyme disease, which could be controlled by vitamins, medicine, diet -- no wine, a cruel irony. And mental stimulation."

                                                                       Pat Jordan, The Constant Gardener, SportsOn Earth.com

Third stage Lyme disease is like this:

Lyme disease can become chronic especially in the elderly or have poor health. This later stage in Lyme disease could also be caused by very late diagnosis and treatment of the infection or persistent infection despite medication. At this stage, the symptoms can be beyond your wildest imaginations and may include:

* Arthritis–In the later stage of Lyme disease, you may develop arthritis. You’ll have redness, swelling, pain in your joints and stiffness in your shoulders, elbows, hips, knees, and smaller joints.

* Neurological problems: Neurological problems will arise during the second stage, and they will increase in intensity. You could experience more severe numbness in your arms, legs and other parts of your body, along with an itch or burn. More headaches may be felt, as well as problems with speaking, memory loss, depression, anxiety, and panic. Additional neurological indications could be Bell’s Palsy, or facial nerve paralysis, and aseptic meningitis.

* Conditions which are serious symptoms and are a part of chronic Lyme disease include heart inflammation, visual dysfunction causing blurred vision, chronic fatigue, ringing in the ears (tinnitus), abdominal pain, pelvic pain, irregular heartbeat rate, hearing loss,urinary frequency,shortness of breath, fever, sweats, Diarrhea and irritable bowel.

                                                                                              www.zimbio. com

I had read the article (written by former pitcher Pat Jordan, a long time Seaver friend and author of A False Spring) the night before we went to New York. And I thought if Seaver, age 69, could get lost in this city, what luck do I have? There's a lot of MS in Lyme diease.

Seaver has his "cloudy days" and his wife of so many years Nancy helps him with notes, and he reminds himself with notes. And he does have some short term memory loss. I do, too.  Mr. Seaver has his family close, and while Jackie and I are (or have to be) more self sufficient,  we have angels in place as the other Tom does.  And he does okay.  We do okay.

We both have wonderful supporting wives. Seaver makes wine on a mountain. I write stories in a forest.  Neither disease will kill us, they just make each day a little harder to get through. Seaver, in the story, was really proud that he put in a 12 hour day of grunt work that week.  Grapes is hard.  But you gotta do it if you want the wine.  Writing is hard, but you've got to keep at it if you want other people to read your stories.

So we both struggle out to the mound, warm up, and then see what the first batter brings, get your sign and here you go, big boy. Try this....98 mile an hour fastball.

I would challenge any of the folks dressed up as faux celebrities of TV and movies around Times Square to try and hit Seaver's fastball, hell, even now. I would gladly pay the $20 tip. Cookie Monster can catch and Elmo can stand there terrified. I'd like to see that.

I can still walk around New York, slower, but that allows me to look into faces, hard faces on a winter night, trying to get home.  And the little Buddha inside of me, reminded me that if I was stressing about wanting to take Buzz Lightyear and throw him at My Little Pony (for tips), perhaps I should just say "May you be happy."  Easiest prayer ever. And it still works.

"Hey, Mets' fan. Over here!" May you be happy.

"Get out of my way." May you be happy.

"I got this cab first." May you be happy.

May Tom Seaver be happy. May Nancy Seaver be happy. And Pat Jordan. And Elmo and everyone wearing skimpy customs in Time Square. I myself am doing my darndest to be.  But Mr. 41 and me  will do just fine.  He is still The Franchise. And my all time favorite.  And if he makes more wine, I will drink it.  Let's go Mets.

Thanks for reading this far.  Next will be the Desktop Holiday Party!