And up until five months ago, my favorite time of day was 10PM, when I went to bed and chatted with my favorite girl about our respective days.
But for the past five months, my favorite time of day has been 7:30 at night.
Because that’s when I would take a shower in my blue bathroom. And with the running water coming out of the best shower head and an exhaust fan that sounds like a wind turbine, I could lean against the shower wall and weep without my wife or little boy knowing.
For the first two months, it was every night I wasn’t in the hospital. Every goddamn night.
As the weeks wore on, it wasn’t every night, but it was still probably most nights.
But as of last week, my favorite time of day is the morning, when I take Alison out to the living room and she sees the baby wearing her pregnancy necklace and smiles.
And he smiles back at her and laughs. My two favorite people in the world.
For just a moment, I think that everything may be ok.
Whenever I’m gone from this blog for a while these days, you can assume it’s because something crazy is happening and I’m too busy to update. This past week was no exception.
We had to go to the hospital on Sunday – which happened to be my birthday – yet again, for both an MRI as well as a new issue that cropped up. After a good deal of negotiations back-and-forth, I managed to avoid our being admitted to the ER for a sixth time. We ended up making it home at 8PM that night.
But then we had some good(ish) news. Her MRI reading came back late – really late – the following day. No new growth. So, while that’s not the outstanding news of shrinkage, it’s far, far better than growth. And what’s more, this is no growth while she’s essentially not had any treatment since January 25th.
Perhaps the best thing is that the old Alison has been making more and more appearances at home. She smiles at the baby and at us, watches TV from time-to-time, and engages us in normal conversation.
Her: (looking at baby) There’s my sweet boy. Me: He’s getting big – he wears 6-9 month old outfits at 5 months. All he wants to do is eat. Her: (laughing) Well, he is your son.
It’s the most hopeful we’ve been in a while.
Because of all the turmoil, I’ve not been to the gym but I still regularly speak to my coach there. He was one of the first people I mentioned this to because of all the fundraising he and the gym has done. And because he’s a source of great comfort for me.
Me: Finally, some good news. It’s not great news but it’s definitely not bad/horrific news. We were certain that, after three months of her being in and out of the hospital, it would be bad. Even her doc prepped us for that. Him: I’m so happy for you. Still in the game with a fighting chance. That’s all you need.
She’s still in the game. We’re still in the fight.
Me: Can you do one more set of exercises? Her: I’m so tired.
Cooper Union is a private science and art focused college here in the City that’s miraculously granted each admitted student a full-tuition scholarship since it was founded in 1859. That’s changed slightly in the past few years but it’s still impressive.
The fact is that donations have kept the school afloat for all this time and enabled it to not just provide amazing things to its students, but the world as well – they have Nobel Prize winners, Fulbright Scholars, and countless other notable alumni who benefited from this generosity.
And generosity seems to be everywhere around us, particularly this past weekend, when Alison’s relatives got together along with her high school friends and had a fundraiser for Alison, which raised far more money than we imagined.
Because of Alison’s trip to the emergency room last week, we weren’t able to go but watching it unfold on Facebook was another humbling and moving thing for us.
The fact is that people donate to places and things like Cooper Union because they think that their money will help, not just the place being donated to, but others as well.
Alison spent almost her entire career working to help others in the world of non-profit. I feel that part of the reason we’ve had good luck with fund-raising is because she’s positively touched so many people. It’s part of why I love her so. I want her back in the world, helping it along.
As for me, I don’t know if I contribute much beyond random musings and trivia. For example, the thing that I always found most interesting about Cooper Union is that the building was built 1853 and it was built with elevator shafts.
But safety elevators weren’t invented until 1857. The reason that Cooper Union built elevator shafts four years before they were invented was because the builders were confident that someone would eventually figure out how to build a safety elevator. They planned today for their tomorrow.
Every day, I push Alison to try to get stronger. She’s weak from the pregnancy, three brain surgeries, three emergency room visits, infections, radiation, and chemo. I should really leave her alone.
But I can’t. I won’t.
Because, like those elevator shafts, I feel that we’ll figure this out eventually and she’ll need to be strong for the struggle ahead. We need to prepare for tomorrow because I hope that tomorrow comes.
With so many people helping us, I think we can get to eventually, eventually. We owe it to everyone to keep struggling.
Me: Just one more set? Her: OK.
Pampered Chef helps make stress-free meals; they’re donating 20% of sales to Alison via this link.
I wanted to take a moment to thank Marybeth W. Madlinger, Meghan McCarthy, and Heather Nerwinski for all their help with the fundraiser this past weekend.
Below are local vendors that donated time, goods, and services to the event so if you’re at all interested in any of them, please click below for more information.
Younique cosmetics and skincare is donating 15% of all sales to Alison via this link until 2016.03.04.
Jamberry nail wraps is donating 15% of all sales to Alison via this link if you mention Alison.
Em’s Pens is donating a portion of sales if you mention Alison when you order here.
Thanks again to everyone to went and have continued to support us since this whole hell started.
For everyone that shared my letter to Vice President Joe Biden, thank you. I’m hoping that it will find its way to him somehow. And if you’ve not shared it, please consider doing so?
Alison finished her radiation and chemotherapy this week. The standard route is six weeks but ours was only three because the surgeon took out so much of the tumor.
Doctor: In some ways, her collapsing was felicitous. Because the surgeon did a beautiful job cleaning up the tumor. And we can also reduce the number of treatments.
I agree. If nothing else, not sure Alison would have been able to finish a full six weeks of chemo and radiation. The toll of just three weeks – both mentally and physically – is shocking. The last day of radiation and chemo was…difficult. And now, we wait.
Waiting is always its own special hell. Because we form expectations of what might happen: too high an expectation and you’re dashed when reality falls short; too low, and you spend more time in anxiety and distress than necessary.
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.
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.
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.
Me? I look at the ability to walk down the street and not be concerned about getting shanked a gift.
Speaking of gifts, after 9/11, people around the world sent their condolences and … stuff. Nations flew their flags at half-mast, dignitaries cried. What one might expect.
But a small tribe of Masai warriors in remote Kenya also heard about 9/11. Most had not even seen a plane before and couldn’t fathom buildings that tall. But they understood the magnitude of what had happened.
And so these incredibly poor people – “poor” in our economic understanding of the word – sent the United States 14 cows.
In any case, these 14 cows were accepted by the US but cared for in Africa – along with a reverse donation from the US of scholarships for the children there.
They’re still there, now numbering 35 or so.
I can only assume that the American ambassador that was given these animals realized that he was given treasure. Things that these people had worked for their whole lives.
Wonder what would’ve happened if the Ambassador didn’t realize what he’d been given and instead thought he was just being given a random buncha dirty animals.
It bothers me when people are given treasure and do nothing but complain about how it’s not good enough.
A 30 year-old man here in NYC just allegedly killed his father because he wanted more allowance.
People don’t see what they have – often through sheer dumb luck – they only see what they think the don’t have.
They possess treasure but no understanding that they do.
Google will replace a cracked Nexus 5 screen for free
Was out in Brooklyn meeting a client in the summer heat two days ago. Got mixed up and ended up being 20 minutes late – and I’m rarely late. Not a good start to a rough meeting.
Grabbed a bus to avoid walking in the heat and, when it lurched, heard a crack in my back pocket. My less-than-six-months-old Google Nexus 5 just bit the dust.
Then I got home and got confirmation that I lost my biggest and oldest client; they hired an in-house counsel. All-in-all, a rough day.
But then I saw more headlines for ISIS and the poor fella that they killed.
And my friend – who works for a non-profit – told me that he just received an email.
It seems that, because of the ebola epidemic, prices for food and other staple items are skyrocketing. The people he works with in Sierra Leone – who are a very, very proud people – were asking for a slight and temporary stipend to be able to afford food to feed their family.
How much were they asking for?
$20 extra. For the month.
Suddenly, I felt really ridiculous about my worst day.
While writing this, UPS came by with my replacement phone. In less than 24 hours. Amazing.
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The following are charities that work in Ebola-afflicted countries and all have three or four stars from Charity Navigator. Skip your morning coffee, send them a fivver, and feel good about the rest of your day.
Lately, the press is all about Robin Williams’ suicide. There’s a number of a things going around that somehow glamorizes the whole notion of suicide in general, which bothers me no end.
Years ago, I wrote about a much less well-known comedian named Richard Jeni doing the same thing.
Felt then, as I feel now, what a colossal waste.
And the other time I wrote about suicide was with another comedian named Richard Gethard, who’s thankfully still alive.
I like Richard Gethard. I liked Richard Jeni. And I grew up watching Robin Williams – remember seeing him first appear as Mork on Happy Days back when it first came out. They made me laugh.
Stephen Colbert once said that, “If you are laughing, you can’t be afraid.” That’s one of the truest statements there are. I suppose that it’s why the people that have some of the saddest experiences laugh the hardest. It’s the only way they survive.
Sometimes, though, I think people just get tired of being afraid. And sometimes it’s not enough.
If I could have wished them something, woulda wished them something that was enough.
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Here’s a really good page on suicide, including the main question, “Are you thinking of committing suicide?”
Have you ever heard the saying, When you gaze long into an abyss, the abyss also gazes into you?
It’s from Friedrich Nietzsche’s “Beyond Good and Evil,” and the full quote goes:
Whoever fights monsters should see to it that in the process he does not become a monster. And when you look into the abyss, the abyss also looks into you.
In a nutshell, the idea is that, as you fight demons, you have to be careful not to let the demons affect you so much that you’re consumed by them. And potentially even become one of them.
We see it all the time in literature and movies: Oedipus, Macbeth, Darth Vader, etc.
It’s an explanation as to why narcotics cops can become dealers and defense lawyers become criminals themselves. It’s why we have to always be on our guard.
But lately, at night when I’m awake, the demons come and sit beside me and tell me that it won’t be ok.
And there’s always a possibility they’re right. So I listen to them.
For now, at least, they seem to be wrong and I hold out hope.
Him: I’ve got some good news! Me: Man, I could use some. What is it?
A lot of people don’t realize that there is a grotesque of Darth Vader carved into the Washington National Cathedral in Washington DC.
It makes sense, doesn’t it? To have our modern devils beside our historic ones?
Location: an hour ago, still in bed sick
Mood: still sick, but less anxious
Music: I can’t wait, I can’t wait, I can’t wait Subscribe!
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