Month: December 2015

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personal

It’s difficult to live in a grey world

…so here’s some color

Art from Indian Landing elementary school

Everything in my life is grey – the weather, the food, the smells, everything.

But, from time-to-time, there are spots of color and I didn’t want to end my year, or yours, in the grey. So here’s a list of them:

  • Alison’s completely conscious and remembering more now. She still forgets a lot, but I remind her.
  • She just started intensive PT/OT and she’s moved her left hand and leg again. It’s not much, but it’s something.
  • I’m sleeping on a cot now, instead of the floor, so that’s a plus.
  • Friends and strangers keep asking how they can help and offering us food, places to stay in the UES, and babysitting. And they mean it.
  • Some children from Indian Landing elementary school sent us some drawings to cheer us up.
  • One of her cousins as well as several of her friends have sent us a ton of food. Including chili. Chili makes everything better.
  • Neighbors have constantly been checking in on us, including in our building and even next door.

And finally, the donations. Feel a bit like George Bailey at the end of It’s a Wonderful Life.

  • Both Alison and I have had relatives, friends, complete strangers, exes, and neighbors – both long-lost and current – donate.
  • The number of LJ and blog readers that have donated is also pretty jaw-dropping. I’ve always felt these relationships mattered and this really bore it out. My friend Joceyln just wrote about us in her blog, from the other side of the world.
  • My fencing instructor – and HIS instructor, as well – and our students past and present, and those of related schools, have donated.
  • My gym – Radical MMA – has had no less than three fundraisers, and too many individual members of my gym have donated, including the owner and his wife.

There are just too many people to thank but we will try, as the days and weeks get better, we will try. I promise.

My long-time readers know that I’ve always had a dim view of humanity.

I stand corrected. The fact that all of you set my wife apart means that I’m wrong.

That means more to me than you could possibly imagine.

And your kindness may legitimately help us save her because a recent study said that those that live a life of gratitude make better decisions.

I believe it because the fact of the matter is that I’ve been crippled by grief, unable to do much beyond function.

But I am so humbly grateful that so many people care about my person that we’re seeing color again. Not a lot, but enough. Enough to keep trying. Enough for a bit of hope.

Thank you, everyone.

Her: I had a good day today, I think.
Me: If you had a good day, then I had a good day.

 

Location: At the end of 2015, the best and worst year of our lives
Mood: grateful
Music: I set you apart. Tell me your secrets

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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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