Alison Music: Oh, I’d better learn how to face it

The light has gone out

Friend: Sorry to call. We’re all just worried about you. (pause) Ridiculous question but: How are you?
Me: Drunk and heartbroken. You?
Him: It’s 10AM.
Me: I like to get an early start on things.

Teddy Roosevelt made a few appearances in this blog in the past. The entry I wrote about Xenophen wanting to die with his feet facing home, is one of my favourites and that picture is a statue of Roosevelt.

And I wrote another entry with a quote from him about daring greatly.

Always had an affinity for Teddy, but I’m hoping that it’s not because we will share similar fates.

See, Roosevelt was a New Yorker, like me. He lived walking distance to my pad, not too far from where I went to law school.

He was 25 and in Albany when he heard that his wife Alice gave birth to his daughter. So he rushed home – partly to see his daughter, and partly because his mom was sick.

By the time he got home to 6 West 57th Street, it was too late. His mom had died.

But the sick twist is that his wife died just 11 hours later from a completely unforeseen kidney issue. She was only 22.

Teddy kept a diary where he simply wrote a large black X and a single sentence: The light has gone out of my life.

I remember hearing that story as a kid and it affected me enough that I remembered it. But not so much that I truly appreciated what it must have meant to Teddy.

He couldn’t handle it. He gave his daughter to his sister to raise, put away everything that reminded him of Alice, and moved to North Dakota.

And he never spoke of Alice again and wouldn’t allow those around him to mention her name again. She didn’t even appear in his autobiography.

While that’s a bit much, I understand it.

After seeing my dad, spent the last week putting away as much of her things as possible; donating and tossing what I can. There are pictures and reminders of her everywhere.

They’re like constant papercuts over my shattered self.

Soon, everything will have been put away. And at some point, I’ll have to put Alison away.

Partly because, in the back of my mind, I worry that my other atomic bomb will go off. Mainly because my kid and my dad need me. Won’t be able to function if I don’t and they need me to function.

But, unlike Teddy, I’d never put Alison away completely.

Because, she was the best part of me and I need to give Nate the best of me. So that means keeping her here for him.

I just need a little time.

\’ FOR NATE

Location: in front of some rum
Mood: the same
Music: Now I can see love’s taken her toll on me
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Dead reckoning

Fools and fanatics


Going back to my maritime analogy, when the nights were cloudy and sailors didn’t have stars to figure out where they were going, they used deductive reasoning to essentially say:

If I know I was there on Tuesday traveling X knots per hour, and today is Wednesday, then I must be here.

They didn’t call this deductive reasoning, though, they called it deductive reckoning, which was shortened to ded reckoning, which morphed into dead reckoning.

And it’s apt cause the problem with dead reckoning is accumulating error: If I’m wrong about any assumption, that error is magnified the further you travel in time and space. You think you’re heading to safe shores and instead you’re adrift, thousands of miles off course.

We got good news last Monday that was taken away from us on Friday – the doc missed something. Our good news never ends up being good for very long.

So we’re back to trying to figure out what to do next.

Which means that I stay up at night, thinking of all our possible pasts, trying to determine the cascading consequences of my actions. Or inaction.

This fella named Bertrand Russell said that, “The whole problem with the world is that fools and fanatics are always so certain of themselves, and wiser people so full of doubts.”

Not that I’m so wise, but it’s come to this, where I’m envious of fools and their ability to sleep. But that’s for me to deal with.

Her: Are you ok?
Me: Of course. You’re home. The kid is walking. And I had a gyro for lunch. What else could a fella want?
Her: (teasing) Me to be cancer free?
Me: Well, there is that.

 


 

Many thanks again to my friends Ricky and Kathy, who – with their friends and mine – managed to raise $12,000 for Alison with their dinner fundraiser.

Thank goodness for the good souls.

\’

Location: off to the gym to try and forget for a bit
Mood: tired
Music: Thank goodness for the good souls that make life better
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Lovely, dark and deep, but we have promises to keep

There’s no way out but through


We ended up getting our second treatment this last Monday. Took three times longer than we had expected but I was thrilled to be there.

Looks like we’re back on track. For now, at least.

I spoke to a cancer researcher last week too. He said that Alison was the longest lived butterfly glioma patient he’s ever heard of. It’s a dubious distinction, and still not enough for us.

On that note, had numerous friends and relatives ask if she can get a break: Can’t she just have a few months without swallowing 30 pills a day, without having needles stuck in her every week, without wearing a helmet of magnets 24/7, without inhaling an astringent four times a day?

The short answer is no.

Because they don’t become friends with other glioblastoma patients and caregivers. They don’t have to hear: We put David in hospice this week. Jessica had three new tumors on her last scan. Maddie passed away today.

It’s tough to hear because you hope everyone else can pull through. You hope your loved one can pull through.

But the truth is a powerful thing. The truth is, most people are dead from this damn thing within 18 months. And most of those people are people that can walk and use their arms. People that had 100% of their cancer removed. People that went to the best cancer centers in the world.

Most people start off far better than Alison and still died.

If there’s any way at all for her to survive this, it’s because she doesn’t stop until the job is done.

It’s like that old Robert Frost poem:

The woods are lovely, dark and deep,
But I have promises to keep,
And miles to go before I sleep,
And miles to go before I sleep.

No one goes 12,000 miles if they can go 30 unless they feel they have no other choice.

We don’t have a choice. No one with a glioblastoma really does. There’s no way out but through.


Some college friends of mine are throwing Alison a fundraiser dinner at Nickle & Dinner on March 2nd, 2017.

So if you’re hungry and in the NYC area looking for a bite a eat, hopefully you can stop by. Ask for Kathy or Ricky, two dear friends of mine.

As for us, we’d love to go. But we can’t, cause we have monsters to fight.

 

\’

Location: Home again
Mood: cautiously hopeful
Music: say honestly you won’t give up on me, and I shall believe
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Daring Greatly

Looking for a way out

Columbus Circle Subway Station NYC

Her: Should we do it?
Me: We might not get it. It might not work. It also might hurt you and set us back. But if it does work, it’ll give you the best shot at a normal life. 
Her: And if it doesn’t?

We had a quiet Thanksgiving. Her mom and sister were here.

Didn’t really enjoy it as much as I could have because a month earlier, got a bill for $802.12 from a hospital. Was fighting it when the hospital turned around and submitted a bill for $96,662.80 to us just before the holidays. Something else to battle.

Then again, if I had known they’d change it from $802.12 to $96,662.80, maybe I’d have just paid it.

On somewhat related note, we had another MRI this past week. Her scans are stable again; unchanged from September.

While this is good news, just like the last time, was hoping for shrinkage.

If you’ve never seen an MRI, cancer shines like a white neon light, against a background of grey. It’s unmistakable.

As always, those two bits of cancer lit up. Also as always, felt that gnawing fear in my belly.

Here’s the thing, the alternative of stability could have easily been growth. And these are much smaller bits versus the grapefruit-sized tumor in her head initially.

We’ve been doing some pretty highly experimental stuff for the past year, which might explain why the scans are stable. Now I’m pushing for her to try some even more potent stuff.

Every decision, wonder if it’s the right one and I wonder if I’ll regret not being content with what we have. The $802.12 versus the $96,662.80. Tofua versus London.

But only for a moment. We have to push against this damn thing because it’s always pushing against us.

Years ago, wrote about Teddy Roosevelt who said to always try because the person that tries:

at the worst, if he fails, at least he fails while daring, at the best knows in the end the triumph of high achievement, and who at the worst, if he fails, at least fails while daring greatly,

If there’s anything she does, she tries. She dares, greatly. F__k this thing.

Me: Then we’ll find another way.
Her: (thinking) I want to try.
Me: (nodding) I knew you would. Thank you.

———-

One of my other atomic bombs went off.

I’d really like 2016 to be over already.

\’

Location: waiting for the dentist
Mood: struggling
Music: It kissed your scalp and caressed your brain
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Dear Nate… 001

Beautiful and terrible things

Me and the kid

Dear Nate;

As I write this, you are almost seven months old. I feel guilty that your Grandma McCarthy has been taking the most care of you because I need to focus on your mama.

But you’re always laughing, so I assume that you’re generally happy and oblivious to the terrible things around us. That’s actually why I’m writing you.

A fellow New Yorker – of which you are a proud member – named Frederick Buechner once said, “Here is the world. Beautiful and terrible things will happen. Don’t be afraid.”

(I will quote things to you a lot because I think other people say things far more eloquently than your pop can; you’ll have to learn to deal).

What Buechner said is true, with this caveat: The terrible and beautiful are often intertwined.

By all metrics, your mother should have died on December 10th, when you were just a month old. I say this terrible thing as plainly as I can.

But equally plainly, I tell you: Your mother came back an hour from death – crippled and half-blind – because she couldn’t bear being away from us. From you.

She came back with a titanium mesh where her skull once was. So when I tell you that she is made of titanium, I mean that both figuratively and literally.

She fights every day to see you and hopes to hold you again, like she did when you were born. She wants to see you sit, stand, walk, and run.

She wants to see you become you.

You know, on December 10th, you hadn’t yet learned how to laugh or smile? I think she came back to experience that.

Kid, that is love like I’ve never seen before. If that’s not beautiful, I dunno what is.

This letter is late, sorry. I’d meant to write it months ago but life got in the way. You’ll find that the life’s terrible things get in the way of your plans and dreams.

It’s the nature of the world to whittle you down to nothingness. One day it will win. We accept that in our family. But we fight the world every step of the way because we will not go quietly.

We struggle and scuffle until we’re breathless and weak. Life demands struggle.

Our family motto is a pictograph of a blade in a heart – we survive things that would kill other people. We survive.15207350313_c43e87a6b6_c

Know that the terrible things will come. But so will the beautiful things. They go hand-in-hand.

Your mother is the most beautiful thing that has come into my life and she came with this terrible thing. Neither of us knew. I would not change a thing, except maybe bring her to the hospital the day we met to get rid of this damn cancer. And buy more shares of Facebook. (Always invest your money – that’s another letter for another time).

I will love your mother until the day I die. You as well.

In any case, son: Here is the world. The price you pay to be here is to endure the terrible. So we pay our fare and we take our seat, come what may.

Don’t be afraid, Nate. Because you are our son and there is titanium in your blood.

Love,

Pop

\’

Location: home, after almost a month in the hospital again
Mood: tired
Music: it was then that I knew only a full house gonna make it through
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Gone Fishing

Thanks

Me in DC

I started this blog all those years ago to just have an outlet for writing and as a place to put all these thoughts I have rattling around my head.

Turning 42 last week means that I have about 12,410 days left here and there are things I want to do and write about before those days run out. Which means less time for this here blog.

There’s just not enough time.

So this is my last regular entry here. There might be others, I’m not sure, right now, though, this is my last one.

But I want to leave you with something silly that you probably never thought about:

You can see you nose, you just choose not to see it.

You see it now, don’t you? And you will for several minutes before it disappears again. And throughout this day, you’ll notice it, forget it once again, notice it, forget it, until you forget it completely.

That is how most things are in our lives.

Things that are so a part of our lives that we don’t see them any more. The people, the experiences. We make them disappear. I walked by a beautiful waterfall every single day for years in college and never noticed it.

I live in the heart of Manhattan but rarely notice it.

Sometimes it’s a good thing. The major impetus for this blog was a bad breakup that has completely disappeared from my mind until I wrote this.

So I leave you with this thought: You see a million things every single day – literally, not figuratively – but you only notice one or two. This is by design.

I realized writing this blog, that it helped me separate signal from noise; to choose what I deemed noteworthy and what was not. Syd helped.

We all get to choose what matters to us, what we allow to affect us.

This blog was about all the things I’ve noticed about my little slice of the world and I wanted you to see them too. Because I thought they were worthy of note. Even thought it was mostly about nuthin.

Anywho, I wanted to say, Thanks for reading – for listening – to alla this nuthin.

There’s a line from You’ve Got Mail that goes, all this nothing has meant more to me than so many somethings.

Likewise.

I’ll still be around on Facebook, Twitter from time-to-time, and Instagram regularly if I can swing it.

Harold’s not with me anymore so it’s just the wife and me.

And we’ve gone fish’n…

 

Location: away, but still here
Mood: nostalgic
Music: heartbroken cause I can’t see further than my own nose at this moment
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Black suit and a white shirt

It’s the right tone for a wrong day

Black suit and watch
I bought another suit a while ago. My tailor isn’t in the US so it takes a few months to reach me.

Got it because my old black suit was looking worn. And the reason I need another solid jet black suit is because I seem to at an age where I’m going to funerals and memorials a lot more than anyone might want.

Not that anyone ever wants to go to them.

Have a memorial coming up next week for my buddy Bobbie and the suit arrived in time for that. Unfortunately, sad events don’t follow anyone’s timeline.

About two years ago, went to a funeral for my buddy’s mom.

Then, unexpectedly, had to go to one for his brother just last week. It seems terribly cruel for such misery to visited upon anyone, let alone someone so young.

In any case, my suit arrived the very next day. I found that odd.

Writer Neil Gaiman said in one of his books:

I wore a black suit and a white shirt, a black tie and black shoes, all polished and shiny: clothes that normally would make me feel uncomfortable, as if I were in a stolen uniform, or pretending to be an adult. Today they gave me comfort of a kind. I was wearing the right clothes for a hard day.

I agree with that.

For me, a black suit is comforting in it’s own way. It strikes the right, somber tone for a very wrong day.

Me: I’m so sorry, man.

Location: last week, upstate
Mood: hopeful
Music: Sometimes it seems like lately I just don’t know
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Bad luck is better than worse luck

You never know what worse luck your bad luck has saved you from

Fire in the UWS
A few days ago, rented a car to go that birthday party and also pick up a buddy from the airport.

Unfortunately, the tiny compact car I’d reserved had a dead battery.

So I called up the car rental company and told them that they needed to get me a replacement.

Customer Care: I’m so sorry about that! The only thing we have is an SUV. Do you want that? No additional charge.
Me: Sure, I’ll take anything. I just gotta go.

After losing about twenty minutes, the wife and I were on our way.

But during this time, the snow began to fall. It was only supposed to be an inch or so but it was clear that it’d be more.

A lot more.

Me: We gotta go.
Her: OK, let’s start saying our goodbyes.

Not long after arriving, we were back on the road. Had to call up my buddy and say we weren’t coming to get him.

Thankfully, we had that larger car so getting back home wasn’t all that bad.

This writer named Cormac McCarthy once said that, You never know what worse luck your bad luck has saved you from.

The thing is, it’s rare to actually realize that this is the case. This was one of those rare times.

But really, you could go through your whole life thinking you had terrible luck while, in reality, you’re far better off than if you had gotten what you wanted in the first place.

Moon in the daytime

Alternatively, you could always try and see the positive, however, small, of everything that’s ever happened to you.

This poet warrior – and I think that it’s telling he was a poet and warrior – named Mizuta Masahide once had a poem that went:

Since my house burned down
I now own a better view
of the rising moon

But there’s an even shorter translation I prefer. I told you about it once. It goes:

Barn’s burnt down —
now
I can see the moon.

Location: last night, shoveling all that damn snow
Mood: thoughtful
Music: She is running to stand still
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Goodbye, Bobby

A man’s dying is more the survivors’ affair than his own.

Clock in Upper West Side, NYC
An old friend of mine passed last week.

He was the first person I ever met in college. Met him outside of the dorms queuing for one thing or another. He was from Virginia.

Never met an Asian kid from Virginia before. At that point, I’d never really been out of the City. Don’t think I’d even been to the Bronx or Staten Island yet.

We became pretty good friends through the years. Bombed my econ class because a group of us were playing cards late into the night.

Ended up going to the same law school, just at different times. We also ended up living in the same neighborhood so we constantly either met up or ran into each other.

But in 2001 we had an argument and stopped talking. It wasn’t a terrible argument, per se. Just the kind where both people’re irritated enough to stop talking for a while.

Your typical super-important argument about nuthin.

We met up a few years later at a wedding where I was a groomsman and he was the best men.

Me: Hey, your tie’s crooked. (fixing it)
Him: Ah, thanks. I was worried it’d be weird between us.

We sat at the same table, and were pleasant. We said we’d reconnect again but never got around to it.

That’s the thing with old ghosts; you always run into them in the big City. Figured I’d just run into him again one day, like I do the rest of the world. And we’d be cool again.

But I never did. Now, I never will.

Every time someone dies, I think of that Thomas Mann quote, A man’s dying is more the survivors’ affair than his own.

Right now, I’m on an email list filled with names I’ve not seen in years.

Some people are heading down to the funeral, some are sending flowers. My friends and I are sending an arrangement.

Can’t really imagine what his parents are going through. Don’t want to. When I heard he died, after the initial shock wore off, I thought of my own parents. I’d never want them to have to go through that.

What a thing to bear.

I wish I did actually give him a call. Or he gave me one. Or we did run into each other like people do here.

Life gets in the way. That is, until it gets out of the way.

I’ll add my not meeting up with him to my list of ten thousand regrets.

Goodbye, man. I’m so sorry to hear that you left us.

Me: Why would it be weird? We had an argument. People have arguments. We should meet up some time.
Him: Sure, that sounds good.

Location: in my head, back in college
Mood: sad
Music: Yesterday I got so old, it made me want to cry
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Survival of the strongest

Most people misunderstand the phrase, Survival of the fittest

Fishes off Bermuda Docks

Been meaning to post this for a while.

My coach just forwarded an article by a Ph.D named Dr. Rhadi Ferguson about who would win in a fight between Superman and Batman. You can hear the author read it in his own words here.

Now I agree with almost everything the doctor says with one major exception. He says:

In battles the strongest guy does not [always] (sic) win, nor (does) the fittest, but the one that has those qualities and is the smartest.

With all due respect to Dr. Ferguson, he gets what everyone gets wrong about the term “Survival of the fittest.”

If I say to you the words, “Survival of the fittest,” what do you hear?

Dr. Ferguson – and most people – invariably people hear, “Survival of the strongest.” They define fittest as being physically fit.

But this is an issue of logical equivocation: The meaning of “fit” in this phrase doesn’t mean physically fit, but appropriate to the situation.

In that sense, then, the actual meaning is the opposite of what most people think.

The phrase: Survival of the fittest, means: Survival of the most appropriate.

If you were locked in a smoke-filled room having a 3-foot window with a small girl, a strongman, and a billionaire, while the girl is the weakest, the poorest, and the most inexperienced, she will most likely survive because she is the most fit – the most appropriate – for survival in that situation.

I think that’s why I have so many interests; I wanna have the broadest skill set possible for any situation that arises. One of my goals for 2015 is to dust off some skills I had that were once pretty good and sharpen then up.

Tank in Staten Island

Speaking of 2015 and having skills, I started the year, as usual, by making a huge pot of chili and by fixing some technology around the house.

We were originally planning on heading out for dinner but the weekend was rainy and my shoulder was killing me.

Her: (canceling a dinner reservation) Open Table will be so mad at me for canceling that reservation.
Me: You know that OpenTable isn’t sentient, right?

 

2015. Maybe this will be our year.

Homemade Chili

One more nerdy pet peeve of mine; people seem to think that Darwin coined the phrase, but he didn’t.

A fella named Herb Spencer, who read Darwin’s work, came up with the term. Darwin used the term himself five years after On Species came out.

OK, now I’m done.

Location: at my desk again
Mood: hopeful
Music: You can get along if you try to be strong
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