Jonathan Light

Writer. Director. Producer.

Category: Uncategorized

I Was Told There’d Be Joy

The children were quiet. Too quiet…

I walked out of our bedroom to peek into Nathan’s room, expecting to see them both dead on the floor from some sort of karate move gone wrong, but – instead – I see this picture:

Isaac, 6 years old and learning to read, sitting on the floor with Nathan, 20 months, on his lap. Isaac holds Goodnight Moon – aka “Moo Book” – and is intensely trying to sound out the words to Nathan, who stares at the page, enamored and riveted. He points to the bunnies and the different things in the room and looks back at Isaac with his trademarked, “hennghh??” And Isaac says, “yes, Natey that’s right!” because that’s exactly what Rachel and I say whenever Nathan says “henggnh,” as if “henggnh” is the most profound observation of the universe a human has ever expressed. Which, of course, it is.

I took a moment to endure the cuteness-overload that flooded my brain, and then went to Rachel and made her look at what was going on.

She looked in and tears welled – joyful tears, tears that come out only when you see these moments that seem to make everything worth all the screaming and crying and mess and sleepless nights. Then she grabbed her belly: “Oh my god, my ovaries.” She wants another kid, and somehow – in those moments – I do too.

HERE is the the joy I was promised, I thought. Such delight. Such love between the two humans we created, the two babies for whom we have sacrificed and slaved for all these years, and for whom we will continue to do so until we die, even if it is this very sacrifice that will be cause of our deaths. Here is the wonder and happiness and pure, unencumbered joy that comes with being a parent.

But then Isaac saw us watching, and he got up and wouldn’t put his socks on. Nathan – livid that his 352nd journey through the Great Green Room had been left unfinished – started screaming something a lot less cute than “henggnh” at his older brother, who was now ignoring him.

We had to leave, so I asked Isaac once again to put on his socks, although the actual reaction was probably more along the lines of: “PUT YOUR SOCKS ON NOW OR I’M TAKING AWAY YOUR POKEMON CARDS!” to which he responded by bursting into tears and running into his room, which led to another Rachel EyeRollÔ and a very concerned look from Nathan, who suddenly smelled very bad.

As all parents know, these moments of pure happiness followed too quickly by abject rage are pretty much a daily occurrence. It’s stressful, and the extent to which you are able to cope with that stress is the number one indicator of your happiness as a parent.

Several times a day, I ask my older son what he wants to eat. Without fail, he replies that he doesn’t know, so I list some options, ranging from scrapple to duck l’orange, each of which is met by an emphatic “No.” I then give up and insist he decides, and the reply comes: “I just want something that I want that’s good.”

What the hell does that even mean, you incoherent spawn??

At this point, I have three options:

  • Decide for him, then when he starts screaming that this isn’t what he wants, calmly explain that he wasn’t being clear so I was forced to make the decision, and offer to have a fruitful discussion about communication.
  • Tell him I will be ignoring him until he decides, then refuse to engage even when he start shattering glass with his screams and end up an hour later with a still-screaming child who’s even hungrier and no closer to deciding what he wants.
  • Scream at him to just tell me what the fuck he wants, for the love of motherfucking GOD, then run upstairs and angry-cry into my pillow.

Though my responses have always shifted between A and B (yes, this conversation happens several times a week), I admit that there are more and more days lately in which C is my choice, albeit without actual F-bombs.

Clearly my children are the reason I had cancer and heart disease.

I’m kidding, of course, but when you find the baby drawing on the furniture even though you were sure you put the markers out of reach, this is an easy trap in which to fall: It’s all their fault. If only I had chosen to not have children. If only I had chosen to stay single and un-tethered to anyone or anything other than my own happiness and ambitions. There’s no way I would have gotten cancer and heart disease had I chosen another path, one paved with fewer diapers and less stress.


I’ve been lax

Sorry for the lack of updates…all I have to report is that this sucks and I’ve only got three treatments left, after which my doc thinks I’ll be done and Hodgkins will be a thing of the past.

So until then, I’ll just keep pushing through. This is what that looks like:


Rough couple weeks

I had a not-so-great time after the last two treatments (hence the lack of updates..) BUT I’m out of the hole, until next Thursday at least. Although chemo brain is definitely a thing…I just typed “whole” and almost didn’t notice. Proofread, people.

So for both of you refreshing this page for an update, one of you being my sister who I talk to every day anyway, I’m doing fine enough…only four more to go. Hopefully.

And not that you were wondering, but yes, the election definitely made it worse. Stress level is high, which just seems to enhance all the shit.

If you don’t feel like reading my take on it, then stop now…

I’m having trouble hearing everyone say “it will be OK, let’s just wait and see.” I’m trying my best to intellectually polish this turd, but the bottom line is this: Either he will do exactly what he’s been saying he will do, and hundreds-of-thousands-perhaps-millions of people will be “adversely affected” [translation: lives destroyed] by those policies, or he WON’T do what he says, and will instead follow along with the goals of the current Republican Congress, and perhaps slightly fewer people will be “adversely affected” [translation: lives destroyed] by those policies. 

We are way past this idea that politics is messy and this is just a normal rightward curve in a direction that will balance out to the mean. That was where we were with George W. Bush, who at least understood how a bill becomes a law, and wasn’t empowering truly evil people like Steve Bannon and Jeff Sessions. I never doubted that the country could survive Bush as President.
This is different. There are no more checks, especially if he can pack the courts. Laws are only effective if people believe in them, and if there is enough of a balance of power to allow for bad laws to be challenged. I fear that he has enough support to make things that have been illegal until now, not – and vice versa.

Everything I believe in – clean air and drinking water, voting rights, protection of speech, justice for innocent people, a healthy and robust Fourth Estate, the idea that words matter… EVERYTHING is in peril with this guy. If those aren’t priorities for you, fine. That’s sad, but fine. But if you say they are, and you think that Trump will be OK, then I urge you to be concerned and vigilant. He has launched a soft coup without firing one shot, and has infused our system with the idea that profit and power matter above everything else. 

That is the real sadness here – instead of a government whose goal is to serve its people, to create a setting in which individuals can thrive and speak out and worship and feel free from want or fear, we will soon have a government whose goal is to enhance profit and protect the wealthy from losing anything, using tactics that delegitimize dissent and stifle empathic, altruistic thinking.  And due to a combination of cynicism, mistrust of “the media” and the lack of any kind of civics education in this country – supported by a healthy percentage of racism and bigotry – he’s rode in on a wave of support from people who think he’ll upend the system, turning everything back to being “great” – whatever that fuck that ever meant.
I just don’t think whatever semblance of a democracy we have left is equipped to handle such a soft, insidious threat – a threat that uses not a shred of nuanced thinking or rational analysis, but will require both to combat. The different realities that exist in this country are too bifurcated to actually do what needs to be done and rework our Constitution to reflect the modern era. This document was, after all, created by men for whom the Internet would seem like Darke Magic and  to whom “the Negro” only counted for three-fifths of themselves. Yes, that second one changed, technically…but has it really?

Sorry, that’s a whole other essay, I guess.

To conclude: No, I don’t know how to fight it, other than trying to pressure my representatives to do so on my behalf.  I don’t have the money or connections to run for office myself, and I’m skeptical that anything other than vicious legislative fights will do any good in the current atmosphere of misinformation and mistrust of real journalists. (Cynical, I know. Sorry.) The system is what the system is, and we can only hope that we’re able to stop them (not just him) from creating a situation in which we’re unable to vote them out of power.

But hopefully that will happen, and hopefully I’ll be cancer-free when it does.

I’ve been doing this for two months?

So I wrote an update a week ago, and my chemo brain prevented me from actually posting it, and I only just found out it was missing when I went to write something new today…so forgive the delay..

The last cycle was actually fine. The best post-chemo week I’ve had in a whole two months.  Not even a joke – I felt pretty good for almost the full two weeks. Still fatigued (of course) – but I walked 20 blocks last week and didn’t collapse, I had a huge Rosh Hashanah meal and didn’t feel like I had to s’lichot it back up, and I haven’t really lost any more hair (although I did give myself quite a bit of a mow just to avoid shedding everywhere…)

Which brings me to this past week, and more good news: I had the traditional Yom Kippur PET scan on Wednesday, and – in a nutshell – this s**t is working. The doc said the results were better than he expected, and the lymph nodes have really shrunk. Of course I asked if that meant I could stop the treatment early. He just laughed and laughed.

Then I had chemo Number 5 yesterday, and today I’m feeling spent, but not terrible. So all in all, I have been so terribly lucky with all this. I see other patients here who are enduring so much, and I almost feel guilty that I can’t share their pain.

The chemo has just become a part of my life that I have to endure – like a really annoying bi-weekly gig for terrible clients who fill my arteries with poison and make me sick. It feels like I’ve been doing this since I was 10, but at the same time just started it last week – it’s surreal how it just becomes part of your schedule and routine, even if you don’t really ever get used to it.

Let me wrap this up by imploring anyone who might even be considering it: please don’t vote for Trump. He is just horrible. It’s a shame that this isn’t just self-evident to everyone, but it’s really  scary that it’s even close. I made a dumb joke during the debates about him causing me cancer all over again, but then I realized that this might actually be true – my symptoms started around the time he sealed up the nomination, and that just can’t be a coincidence. A lot of people are saying it, believe me.

All my love to everybody – please keep in touch.

Nausea sucks

And not even just the thing – even the word sucks. Who came up with that word? I feel slightly nauseous and then just saying the word out loud makes me feel even more nauseous. It’s one of those words that looks and sounds EXACTLY like what it is, isn’t it?

Fun grammatical fact: the correct word to convey the state-of-being of nausea is actually “nauseated” – so I should have written “I feel nauseated.” But now I’m even more nauseated, because I just realized I’m being THAT guy. Sometimes you just gotta let these things slide.

Other than that, I’m doing well enough after my third treatment on Thursday. The last two days have been not the best – I’m fatigued and feeling really “off” – but I’m functional enough. There’s some soreness from the magical white-blood cell shot Neulasta [see our ad on the Sunday morning shows!] but that should pass soon as well. Hopefully the next 13 days will be uneventful – each day farther away from the chemo day is better, so I just have to hang on until the next one.

The nurses were very happy to see me with all my hair, but they were skeptical that it would last much longer. I explained to them that very few things on this planet can conquer my Jew-Fro, so we’ll see who wins this battle.

And, as always, if for some reason this isn’t a detailed enough update for you, please call/write/whatever. It’s been wonderful to hear from everybody, and the support and outreach has been just epic. I’m very, very grateful.






“A Dream Fulfilled” Announced

I’m officially starting production on a documentary about my father’s life in the Philadelphia Orchestra – “A Dream Fulfilled.” At 55 years and counting, he’s the longest tenured member of the Orchestra. See a description and trailer for the film here

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