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Alison Music: Everyday is a Holiday with Alison

The crescendo to that melody I love


Broke my own heart yesterday. I’ll tell you more about it when I patch it up some. Gimme a bit, cause it’s a mess.

It’s all such a mess.

———-

Esthero’s Everyday Is a Holiday starts with the lines:

Met him on Sunday, loved him by Tuesday afternoon.
Woke up on Friday, changed my whole life to make some room

Which is much like how my relationship with Alison started off – at least the second time when we had more than a few words with each other.

I told every single woman I met during my dating years that, “I’m looking for my person. I suppose you are too. Let’s figure out if I’m yours and your mine.”

With Alison, though, I figured out that she was my person almost immediately – in fact, I broke things off with a few people because just meeting her made things a bit clearer for me.

I’ll say “When I think of you, you’re like my favorite song
Or that melody, that melody I love”
And it goes, La da da da da da da da

If every thing I love in my life is a series of songs – moments, family, friends – then my time with her is my favorite melody.

And if the rumors are true, I can look forward to
Some better days and getaways, so nice
‘Cause when I am with you, you’re the crescendo to that melody
That melody I love, yeah, da da da da

For us, the rumors weren’t true. We only had a few better days and getaways, but at least we had them with each other. I am forever grateful that I met her in this world.

And she and the kid have been the crescendo to that melody, that melody I love.

Years ago…

Me: It’s like that song from Esthero: I met you on Sunday, loved you by Tuesday afternoon, and changed my life on Friday to make some room.
Her: (amused) How many times have you used that line?
Me: Just this once. It’s a one-shot line – and if it works, we’ll get married and have our better days and getaways.
Her: (laughing) OK.
Me: So, you love me too?
Her: (nodding) Like a fat kid loves cake, Logan.

\’

Location: at the foot of her bed
Mood: Take your saddest moment. Multiply it by 10,000. Then double that, because I have two people I love dying. And all I can do is f______g watch.
Music: Around a quarter to two, I have remembered all my lines

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Selene, Alison, and me

Am I being selfish?

I’ve talked about Selene a lot in the past. She was the Greek goddess of the moon. When I was single, in my late night insomnia, she was my constant companion.

Used to look up and ask: “OK, who’s our lucky contestant tonight?”

Story goes that Selene loved a mortal and begged Zeus to give him everlasting life. He did, but there was a catch – there’s always a catch – the man would live forever, but only if he slept.

A report came out a week ago that said lots of thinking – essentially being awake – could lead to a spike in brain cancer for those that had it.

Anecdotally, we think that part of the reason Alison survived so long is because she slept for months after the surgery.

Always felt it was selfish of Selene to keep her love asleep to simply keep him with her.

How is that love?

Wonder if I’m being selfish now. It’s easy for me to say to Alison that she has to fight. She’s the one fighting.

And she’s been fighting for 18 months straight. That’s actually not true – she’s been fighting things for five years straight.

However brave and strong you think my wife is, you only know half the story. She is stronger – and the story, more tragic – than you know. I’ll tell you about it soon.

Because you should know how very special she is.

Back to Selene: To what kind of life did she condemn the one she loved most?

And what of me to Alison?

Her: Can I go to sleep?
Me: Yes. I’m right here.

\’

Location: at the foot of her bed
Mood: indescribable
Music: Everyone knows I’m in over my head

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I already promised her

She is my person

Alison McCarthy on the Brooklyn Bridge

My birthdays have sucked lately.

We went in for an emergency MRI on Friday, despite all our plans.

The cancer is growing stronger and bigger while she’s growing weaker and sicker.

And I die a little every minute.

That picture above was taken after my buddy’s wedding years ago. Knew at that moment, she was my person.

That she loves me as deeply as she does is worth more than anything you might imagine. And I love her so. I would do anything to take this from her.

I would do anything.

For those of you that have read me for years, you know I struggle with depression and dark thoughts. I struggle now.

The people in my life know that too. So I called my mom last night.

Her: …and you? Will you be ok?
Me: No. But I’m not going to hurt myself if that’s what you’re asking.
Her: I am.
Me: I have to raise our son. I won’t let him grow up alone.
Her: Promise me.
Me: Mom, I already promised her. 

\’

Location: the saddest place you know
Mood: absolutely f_____g crushed
Music: And oh my love remind me, what was it that I said?

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My most prideful thing

Thank you

This has been possibly the worst week we’ve had in a while. Which says a lot.

A routine visit to the doctor indicated new growth. So what was supposed to be a quick 30-minute checkup, turned into a five-hour ordeal of needles – it’s always a f___ing boatload of needles – fluids, and drugs.

What’s even crazier is that Alison kept apologizing to me.

She’s so sorry that we had to go through this. So sorry that everything was taking so much time. So sorry that there was so much fear and uncertainty in our lives.

Wanted to give her a hug but couldn’t because there were too many damn wires and tubes everywhere.

I’ve always said that the truth is a powerful thing. It’s comforting to get some truth in a world of lies and half-truths, particularly now.

So, to comfort her, I waited until we were alone to give her a hug and then tell her the purest true thing I could.

Me: Please stop apologizing.
Her: I just feel so bad.
Me: Don’t. Everyone wants their life to mean something. To have some greater purpose. I want you to know that helping you in whatever way I can is the most noble and good thing I’ve ever done in my otherwise meaningless life. I’ve never done anything remotely as important and meaningful as this. It is my most prideful thing. If the high point of my life is that I’ve taken good care of you and the kid, I’d consider my life a complete success. For that, I am deeply, deeply grateful. I love you and the boy more than a fat kid loves cake. Stop apologizing. Thank you for giving me my most prideful thing.
Her: (nodding) Thank you too.

\’

Location: around the corner from west hell
Mood: heartbroken, again
Music: Oh, just to be with you is having the best day of my life

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No one ever said it would be this hard

Thank you for setting her apart

Two empty chairs outside NYC restaurant

Alison’s been pretty stoic about everything that’s happened. Every once in a while, though, the gravity of the situation hits her – and us.

After dinner the other day, The Scientist came on and when they got to the part that went:

Tell me you love me
Come back and haunt me

she started to cry.

Her: It’s so sad.
Me: “Come back and haunt me?”
Her: (thinking) Yes, that is sad. I try not to think about things like that. But that’s not the line that makes me so sad. It’s the one that goes, “Nobody said it was easy. No one ever said it would be this hard.” (pause) I can’t believe it’s been so hard.
Me: As long as we have 1% of 1%, we’ll keep trying.
Her: I will. I’ll always fight this.

Years ago, told you that I met a girl and set her apart from everyone else in the world. That’s what happens when you come across something or someone special.

That girl Annabel from my last entry wrote me to tell me that she hosted a fundraiser at her home to help Alison and sent us a – wholly unexpected – check. Below is a picture from the fundraiser. I only personally know one person, Annabel. And Alison knows no one.

But each of these strangers, like so many others, have gone far outta their way to help us.

There are 880,000 words in the English language. And yet there are no words to adequately express my gratitude that, in this past horrifying year, so many people have set Alison apart as well.

Suppose I’ll just have to settle for thank you, as always, however inadequate it feels to me.

Fundraiser for Alison

\’

Location: home, making food
Mood: sick
Music: You don’t know how lovely you are

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Awesome

My wife inspires me

Alison and the kid

Me: How are you feeling?
Her: Tired. But a little better.

The traditional definition of “awesome” is “inspiring great admiration and awe.” It’s something that fills you with awe and humbles you.

John Glenn – the first American to orbit the Earth and the fifth person in the history of the world to go to space – would probably say that his wife is awesome.

They’d known each other since they were children and during that time, she had an 85% stuttering disability – meaning that 85% of the times that she tried to speak, she couldn’t.

The person Glenn knew wasn’t the person the world knew and vice versa.

It wasn’t until she was 53 that she could speak normally. Which means that for 53 years, she struggled to do things that we take for granted. I can see why Glenn would consider his companion his hero; that she would keep trying when all seemed hopeless.

53 years is a long time.

So it is with me and Alison. I don’t think I will ever do anything that compares to what she’s been doing to beat this thing. Frankly, I don’t want to.

She’s stronger now than she’s been in seven months. She’s doing things that are awesome in the truest sense of the word: What she does fills me with awe.

Her: I want to stand again.
Me: I think you will. If you keep working as hard as you’ve been, you will.

\’

Location: not in the hospital, thankfully
Mood: hopeful
Music: could sit for hours finding new ways to be awed each minute

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Dear Son… 001

Beautiful and terrible things

Me and the kid

Dear Son;

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. Because you are our son and there is titanium in your blood.

Love,

Pop

Dear Son… 001
Dear Son… 002: Wait and wish
Dear Son… 003: Rain happens
Dear Son… 004: Understanding is gold
Dear Son… 005: Language is telepathy

 

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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I’m all by myself

Four words and 50 stories

Weill Cornell Christmas Lobby 2015

There’s little sadder than being the only person in a hospital on Christmas.

———-

Me: (picking up phone, anxious) Alison?
Her: (panicked) Where are you!? Where am I!?

Of all the Adam Sandler/Drew Barrymore films, the one I’ve enjoyed most is 50 First Dates.

In it, Barrymore’s character can’t retain recent memories and only remembers things in her distant past, and Sandler’s character has to repeatedly “meet” her again and again. In the end, he records a video – on VHS cassette no less – to remind her of everything the two of them had gone through together.

So let me tell you about our first Christmas as a family…

I woke up and made a cuppa joe before I was going to make my way to the hospital. But then my phone rings and I look down to see it’s Alison. It’s the first time she’s called me in months since this happened so I anxiously answered.

She didn’t remember anything happened and was terrified. Minutes later, I’m in a taxi, rushing across town. She calls again.

Her: (scared) Where are you?
Me: I’m in a car, I’ll be there in 10 minutes.
Her: Hurry. Please. (pause, quieter) I’m all by myself.

In life, there are words that chill you to your core. “Your wife has cancer” were four such words. “I’m all by myself” were four others.

So I said to her what I’ve always thought are the four sweetest words in the English language: I’m on my way.

The cab stopped at a red before the hospital, so I flew out the door and ran up the stairs to her room, still on the phone.

Me: (panting) I’m on the second floor, I’ll be right there…

When I arrived, she turned to me with the same panicked look in her eyes that she had a month ago, when I told her the four words the doctor said to me. Telling her then was one of the hardest things I’ve ever had to do.

Then I realized I had to do it all over again.

So I steadied myself, gulped down some air, and sat down next to her bed.

Me: Honey…

And I saw the look again. Could go a lifetime, never see that look again, and it’d still be too soon.

Dunno how doctors regularly give bad news. Where do they find the strength to tell someone that that their lives are in grave jeopardy on the regular? Do they drink every night at their desk?

Me: …he said you might not wake up. But you did. Then he said you might be permanently damaged…
Her: (horrified)
Me: …but you’re not. And then another doctor said he had to open you again and said you might not come back, but you did. This cancer has been wanting to kill you but you just won’t let it.

Somewhere along the line, the alarms that were going off because of her rapid heartbeat, stopped ringing. And she started breathing normally again. Her voice became stronger.

Her: I can’t believe this is my life.
Me: (sighing) This woman once said, You don’t have a right to the cards you believe you should have been dealt. You have an obligation to play the hell out of the ones you’re holding. It’s a ___ hand, but you’ve been playing the hell out of them. We’re all so proud of you.

Then I took her phone and explained everything a third time – this time via a recording on her phone. And I titled it: WATCH ME!

Told her that if she woke up again and didn’t know where she was, she could watch that and wait for me. Because I would always be on my way.

Her: (quietly) I want to get going and beat this.
Me: That’s my girl. (nodding) That’s my tough girl…

Screen Shot 2015-12-25

\’

Location: A different room in the same hospital, looking at the same river
Mood: humbled
Music: Don’t stop, no, I’ll never give up

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Companionship

Someone to sit and eat with

The word companion comes from late Latin, with com meaning with and panis meaning bread.

Essentially, a companion is someone with whom you do these daily mundane things, like sitting down and eating.

When my wife first got sick, I slept on the floor next to her hospital bed for a week. Said I did it because I didn’t want her to be alone, which was true. But equally true was that I didn’t want to be alone either.

Nurse: You can’t sleep here.
Me: (lying down) Let’s find out.

I’m sorry for the lack of updates – especially to those that have so generously donated.

On December 10th, Alison was unresponsive so we rushed her to the hospital. There, the doctors had to remove part of her skull to save her life. They said she might not survive the night. I fell to my knees.

But she survived. Then she had another surgery just a week later. That’s three brain surgeries in a month, just days after giving birth.

To say that my wife is crazy tough is like saying that New York City is a small town. She’s made of steel.

Unfortunately, she’s been in the hospital since the 10th and will be for quite a while. I’m there most days; other days, other relatives are with her.

This is not how we imagined our first Christmas and New Year’s as a family.

Still, I go to the hospital and have bread with her when she’s able. When she’s not, I just sit there. And we dream of home.

She would do the same for me, because she’s my companion and I’m her’s.

Me: (arriving, breathless) Hey, beautiful.
Her: Hey.

Location: The same hospital room, still looking at the same river
Mood: still heartbroken
Music: Somedays I’m built of metal, I can’t be broken. But not when I’m with you

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The sun always shines on TV

The love of my life is sick

Screen Shot 2015-12-16 at 2.41.04 PM
When I was a kid, the hottest music video was a song called Take On Me. In it, a comic book character comes to life to be with a woman he loves. It ends with them happily together.

Unfortunately, there’s a follow-up video that few people heard of called The Sun Always Shines on TV, where you learn the rest of the story – he cannot stay and they don’t end up happily ever after.

I once said that all stories end sad; every relationship that matters will always end in tears. That’s the nature of the world. But I think the unexpected tragedies are the hardest. That’s when life knocks you to your knees and you can’t stand up again.

My wife is sick. And on top of the sickness, we have all the bonuses that come with the sickness – the fear, the uncertainty, the loss of control, etc.

Yet I hold out hope that somehow, this isn’t all of our story. That we can find a happy sequel to this news. And in the end, I want what everyone wants when they love someone – for them to stay.

Please stay with us. Please stay with me.

Location: A hospital room, looking at the river
Mood: heartbroken
Music: there’s got to be some way to keep my troubles distant

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