Friday, March 28, 2014

And now... the new new normal

5:45 AM Monday.  Where's the alarm? Why didn't the alarm go off? I had woken up a few minutes before the alarm (years of training) and was waiting for the bright tones of WROW - 590 on your radio dial.  Where are the DJ's?

My wife is still asleep. What, is it Sunday again?

No, my MS'd and BP'd brain could finally deduce.  This is Monday March 24 2014. And your wife is no longer employed.  That alarm won't be going off no more.  Let her sleep. In fact-

I opened my eyes an hour later to my wife's pushing of the blankets off and rising from the bed.

Right. My brain reminded me. Today, your wife Jackie no longer has a job.  Today, unlike every other Monday for the past three plus years, she will be home. Permanently.

There goes the old routine. Meet the new routine.

And welcome to the New New normal.

I am glad she is here.  Her job over the last few months has gotten worse and worse, with a new boss who did not have, shall we say, the managerial flair.  It was just a timing thing.  The nice people were leaving, and those left had to deal with a change in ownership that may not be successful.

It had become a sucky work place.  And with me at home dealing with my fun, we thought it best (along with a gaggle of friends and former co-workers) that Jackie split the scene a little earlier then we had planned ( end of the year).  Jackie would have left at the end of the year, anyway, as she would be eligible for her IRA.

Fortunately, with my pension and with Social Security starting in August, we can make it through the next three to four months on monies we've put aside.  We'll be fine (all is proceeding according to my plan).

So now we begin the negotiations - who goes where, when do you want lunch, what to DVR, all the important things.  We've got a bucket list to do. 1. Wake Up 2. Do you remember who you and that other person are? 3. Pittsburgh 4. Mall of America-Twins game 5. Napa Valley 6. Mount Vernon/Monticello etc.  As we still have Nos. 1& 2 aced, we can actually start thinking about the rest. We'll do a trip or concert each month, depending on how much "oomph" I have that day.

Tuesday I'll be picking up a script for the next MRI. And that will let me see where the lesions are now.

Stay tuned. Thanks for reading.

Isn't it great that the Sith were into hoodies before they were cool?

Sunday, March 16, 2014

Space Ghost

When I was six years old, I fell in love with a man.  Whenever I was curious about about anything, concerned about some new thing, he was there with calm insurance and soothing tones.  And he had his own toys and he used all of them to explain the world to me. And what was even better, was I had toys, too.

He was probably the smartest man I ever knew. And every few months he'd show up to explain yet again to Frank Reynolds why we can't take an elevator to the moon.  They will never understand you like I do, the way your hair blew in the Florida wind, how you grabbed at your ear piece to hear something new, that smirk that told me you knew something nobody else did. 

Because I love you, Jules Bergman of ABC News.  

From the time that I was young boy, Jules Bergman was the American Space Program.  Jules came to ABC News in 1953.  He reported not only on the space race, but also aviation, defense, and energy issues. He was smart.  I wanted to be smart.

But all that really mattered was launch day.  My mother would be sure that her youngest would have a sore throat when something was being  blasted off from Cape Canaveral.  In my high school years, the sore throat ruse stopped working.   But be it a Mercury solo shot, or a Gemini two man shot on the mighty Titan II, or the Biggest Thing Ever, the Saturn V there on the launch pad, steaming liquid nitrogen into the Florida sky, daring them Russians to try and do it better. 

T-minus 10

For Christmas 1966 my parents gave me a G.I. Joe Space Capsule and Space Suit. My first G.I. Joe was the Original Fighting Man who had suffered a career ending injury when he was discovered under the Christmas tree by my dog who was under the misapprehension that she had a new chew toy.  But he fit fine into the space capsule, rehab completed.  I played the .45 record that had a man talking me through the launch, not Jules but anyway...and on the B side John Glenn's spaceflight! Awesome.

T-minus 9

Ed White was the first American to walk in space on Gemini IV.  I cut out a picture of Ed from a book and I've had in my wallet for over 40 years. You could do amazing stuff. You can.

T-minus 8

I told my parents that I wanted to be an astronaut. I wrote to NASA asking what to do, just like many other kids did.  The folks in Houston sent back a nice letter that I treasured.  At least until my father, in the throes of a household crisis, grabbed the only paper he could find (my NASA letter) to send me a last message in pen.  “Tom - change the goldfish water – Dad.”

T-minus seven

I don't recall crying much as a kid, but then... January 27 1967. The Apollo One Fire.  Gus Grissom (the second American in space), Roger Chaffee, and Ed (My Ed) White were gone. ABC just put a white card on the screen and Jules read the words.  Later, he tried to explain to me why those brave men had "died".  It did not help.  What is dying? Why are my heroes gone? What did I do? My mother held me a long time that night.  But Ed's picture is still in my wallet.

T-minus six
One Friday night my Mother walked into the our living room.  “Why aren't you watching Star Trek?” she asked.  What was Star Trek? I thought TV “space” was Lost in Space or Land of the Giants and I shrugged, went back to reading my book.  Mom turned on the TV and there was the episode “For the world is hollow, and I have touched the Sky”.  Wow. I was a confirmed nerd. I look up at the stars, and wanted to visit them all with those people.  One to beam up, Mr. Scott.

T-minus five
Christmas with Apollo 8The astronauts read from Genesis: “In the beginning God created the Heaven and the Earth...”  It was going to happen. Look, we’re just a blue marble in a sea of black.  It’s all we have1 And why didn't everybody get it? It's on a stamp!

T-minus four
The Day. July 20 1969.  I was psyched by hours of news coverage from Jules, and now and then Walter  Cronkite before heading back to Jules with his Saturn V booster, command module, and lunar module, or LEM as those of who in the know called it.  Jules was explaining the descent of the LEM from it-

“Tom, look who's here,” my mother said.  This requires me to turn away from the screen and look behind me.  The groan from the whiny “what?” never got past the “wha-”

She was just about my mother's height, about 5'2". The hair, as dark as the space between the stars, hung down long past her shoulder,  Her eyes as blue as Neil Armstrong's. Her smile the white of a Saturn V booster before ignition.  Light colored blouse with hippie vest, dark pants and sandals. She was Karen, the little girl who had grown up next door to us but who had moved away with her family to Binghamton some years back.  I was crushed when she left.  But now, her family had stopped by on their way to New England and here she was. And here I was in t-shirt, jean shorts and no-sock-sneakers. 

What was Walter Cronkite talking about?

“Houston, Tranquility Base here. The Eagle has landed” July 20 1969 4:17 PM EDT

Walter rubs his hands in glee.

Should I tell Karen she's the most beautiful girl ever on Earth, and now on the moon? Why was I thinking about this?

Moon June Spoon Soon

“Karen -” I started. “I think you're -"

Three. Ignition sequence start.

“Well we gotta go,” said her Dad, as he rose. His wife and daughters followed.  Quick goodbyes. Karen just waved. It was so unfair now.  I had a few more hours while the astronauts rest.  We can get married while they're sleeping, and be back for the EVA.  I've got soda and Pop-tarts. 

But gone. I looked at the closed door for a while, or what I thought was a while but maybe it  wasn't because I heard that voice.


“I'm stepping off the LEM now.” July 21 1969 10:56 PM

President Nixon talked to the guys, and then my father came in from working the second shift at General Electric, grabbed a beer and I told him about the moon landing (with proper models, not toys).  My mother told him about the Lewis' visit.

We watched the TV. Just the three of us.  I can maybe count on one hand the times we did that, the three of us.  That was the 1960s.  The Apollo missions stopped because it had become like summer reruns, except for Apollo 13, which was like the first reality TV for nerds that people could understand or make a movie about.  We left the moon, and just went around and around our own planet.  We tried Skylab...but most people cared about it when it came crashing down out of space. I stood in the playground at 4th Avenue and 121st Street with my binoculars lifted to the stars, hoping to see Skylab burn on its re-entry. It went by in a streak.  My father, barely functional from his illnesses' attack modes, waved at me from the front porch.  I pointed to the sky, but he didn't get it.

The first shuttle, the pretend one, was named Enterprise to mollycoddle the Trekkies, we Trekkies. 

It was nice, but the shuttles just went up and down fine.  Jules faded from the scene.  The excitement had turned to humdrum.  As if putting people on a giant bomb and hoping it will take them to an airless place with no gravity is a walk in the park.  Well, it worked. Until Challenger. January 28 1986. Jules died later that year, heartbroken.


My wife and I sat holding hands on the couch in our apartment.  We'd seen President Reagan's speech, and were listening to the stories of the astronauts, especially Crista McAulliffe.  My wife touched my shoulder.

“Even with this, you'd still go, wouldn't you?”

“To slip the surly bonds of earth, and touch the face of God?”. Hell, yes, my love, in a New York minute. Come with me. We can still boldly go.”
Zero. All engines running.  The tower is cleared……. And Liftoff……We have liftoff!

Tuesday, March 11, 2014

Social Security Disability Part IV - A New Hope. And then, Surprise!

Not that long after I saved last week's post I was doing a nightly trip around the web and happen to wander by the Social Security site, just to look at the acceptance part.  And there it was in all its glory:

"We have found that you meet the medical requirements for disability payments."

I saw I had a home page, and that one of the tabs said "Benefit and Payment Details".  So I clicked on it, as the curious fella I am would do, and wonder of wonders, there was my benefit amount, a four figure monthly amount starting in August.   I was surprised, and  actually a little verkempt, that when you added the SSD amount to my pension, it was more than my wife and I have lived on for the past four years.  We'd be all right.

So my wife quit her job!  This is 4 months before the first SSD check will come in (barring the eternally promised cure for MS arriving), but she did anyway, having had enough after four years of relatively nice office time to one not so nice. Office politics.  Glad she's out of there.  We will be all right. And I do not need the stress of her coming home frustrated and angry.  She is a caring, kind person, and she is finding support with former co-workers and friends. And me!  

I'll be talking to the doctors that did not assist my application for SSD.  I'm not sure what it may have changed, as Social Security said it did not have enough information to go back to my claimed disability from January 2010. Maybe I can appeal, maybe not.  I've certainly read enough stories on MS Boards of both success and failure in the process.  I suppose we need to look to a future of some freedom.

Odd.  My father retired early on pension and SSD.  Jackie's father retired early on pension and SSD.  And now I am on early retirement and will be receiving SSD.  I am hoping that Jackie's and yours truly's lives extends as far as possible or as long as my health allows.  There's a bucket list of things we want to do together.  And we don't have to answer to anyone.

So, until some health thing comes along, the man said it best:

Tuesday, March 4, 2014

Social Security Disability, Part III

The first clue was when I logged into the Social Security Disability site: and I was told:

A decision has been made on your claim. You will receive the official notice of any decision made on your claim by U.S. mail.

Cue the McConaughey. "Allright, all right, all right."

Stare out the window and wait for the mail truck.  Will it come today? What will I do if denied? First,  of course, a good hissy fit, then lash out at totally innocent people ( I mean, if they're not gonna pay me, I'm gonna be as bipolar and MS'ed as possible).

"We have found that you meet the medical requirements for disability payments."

Cue the marching band. Okay, that's enough.

"We have not yet made decision about whether you meet the non-medical requirements, but we will make that distinction soon."

Be still, my heart.  OK, Band, take a break.

I learned from the sheets sent that they had received statements from my general practitioner, neurologist, psychologist, and cardiologist.  What's missing from the collection is my psychiatrist submitting anything, plus the neurologist sent a letter, that's it.  I've got the freakin' MRIs as well as he does.  I think I told you this last column, that it didn't appear the doctor had any idea about lesions or where they were.

How many things could go wrong yet?

Still to come...