Friday, May 20, 2016

On the Way


Girl - Morris Day and the Time


Max and Julie


Max

I was scrolling down my Facebook newsfeed a little while ago and ran across a story originally posted at the “Humans of New York” Facebook page. The page is associated with the "Humans of New York" website, which features interviews with thousands of people on the streets of the Big Apple. HONY’s tagline is “New York City, one story at a time.”

I really like these posts. They’re always interesting and even touching and are accompanied by compelling photographs. But I can’t remember being as moved by other stories as I was by this one about Max narrated by his mother, Julie. You must read this.

The disease at the center of this story is Diffuse Intrinsic Pontine Glioma (DIPG), which are highly aggressive and difficult-to-treat brain tumors found at the base of the brain. They’re glial tumors, meaning they arise from the brain's glial tissue — tissue made up of cells that help support and protect the brain's neurons.



Julie
"Max had two mothers. We found a sperm donor and I gave birth to him through IVF. He was actually a twin. I decided to reduce the pregnancy because I was scared at the time. I didn't think I could handle twins. And that decision will haunt me for the rest of my life. Max was such a sweet child. I was a bit of a hardass on him. I wanted to be sure that I gave him boundaries because I never had them growing up. But I think it brought us closer together. Because he knew I’d always protect him. And he was so protective of me too. But in such a sweet way. He’d hold my face in his hands. God, he was so sweet. Just such a nice guy. So funny. He loved to laugh. His bedroom was close to ours and we used to hear him in there late at night, laughing by himself."


“One of Max’s eyes started crossing over when he turned six years old. But I wasn’t too worried. He’d been such a healthy kid. I thought maybe he was developing a bit of a lazy eye. But the doctor started getting really uncomfortable during our appointment. He scheduled an MRI for the next day, and he told me: ‘Let’s not be too worried. I’m going to sleep well tonight.’ It was such a weird thing to say. Right? I had been completely relaxed until he said that. We got the MRI early the next morning, and I went to work. The results came in a few hours later. They called me while I was walking down the street. I just collapsed on the sidewalk.”


"There was a tumor in his brain. The doctor told us that he knew what it was. He said it was called DIPG and that he hadn’t found anything that worked. He said it would eventually kill him. And I started screaming. And I asked how long. And he told us a year. He told us that ‘doing nothing’ was an acceptable choice. And he said, ‘This will be harder on you than it is on Max.’ And I remember looking at Max. And he was so beautiful. All he had was that crossed eye. Our life had been beautiful and now everything sucked. I didn’t know what to do. So we went to the Lego store. He was obsessed with Legos. That night he got so many Legos.”


“I think I have post traumatic stress. I have so many horrible flashbacks. Two weeks after Max was diagnosed, he asked me if I’d be his Mommy forever. I said, ‘Of course I will.’ And he asked: ‘Even when I’m ninety?’ And I told him ‘yes.’ What was I supposed to say? And there were all the times he talked to me about the future. We’d talk about college. I just couldn’t tell him. God, I was such a coward. I should have told him. I just couldn’t do it. Even toward the end. The day before he lost consciousness, I read his favorite book to him. It’s called Runaway Bunny. And the little bunny keeps threatening to run away. And the Mama bunny keeps saying: ‘Wherever you go, I will find you.’ Oh God, it was such a horrible way to die. He couldn’t speak or move or swallow or see. He basically starved to death. And the whole last week I’m whispering in his ear: ‘Let go, let go. Please Max, let go.’ My seven-year-old son. I’m telling him to let go. I mean, fuck. That’s not supposed to happen! And the whole time I never told him he was dying. I was such a coward. But he knew. He knew without me telling him. Because a couple weeks before he lost his speech, he asked me: ‘Mommy, do they speak English where I’m going?’”


“I used to be a really happy person. I really was. I was the person who would walk outside and say: ‘Isn’t everything beautiful? Isn’t life wonderful? Aren’t we so lucky?’ I don’t have that sense of joy anymore. I remember the Mother’s Day before Max was diagnosed. It was four years ago. We were in this same park. On the lawn over there. It was beautiful. All three of us were there. Irene and I were in love. And Max was lying on my feet and pretending to fly in the air. And he was laughing so hard and I remember feeling so happy and full of life. It was the last moment that I truly felt joy.”


Today is the last day of a fundraiser to aid Memorial Sloan Kettering Cancer Center in its fight against pediatric cancer. Max’s tumor is the same tumor that Dr. Souweidane is working on curing. All money raised during the telling of Max's and Julie’s story will be given to Dr. Souweidane and his colleagues to aid in the fight against DIPG. The gift will be given in Max’s honor. Even if it’s a small amount, please consider donating.

As of May 19, over $1 million has been raised in honor of Max to research and cure DIPG. This money represents the “single greatest leap forward” in Dr. Souweidane's personal crusade against DIPG. When Julie was interviewed a few days ago, she and the interviewer were sitting on a bench in Madison Square Park that had been dedicated to Max. The plaque listed all the things that Max loved, and one of those things was ‘millions.’ The interviewer asked Julie what that meant. ‘Max’s Uncle Charley gave him one hundred dollars,’ she replied. ‘And Max kept saying that one day he’d have a million.’ Thanks to each donor for helping to give Max his million.







Tuesday, May 10, 2016

Pretty Little Red-Haired Girl


Courtesy Kent Boltz

Motherless Child - Prince (live)


Politics: Uglier than a Dung Beetle's Behind

Courtesy Illma Gore


I’m sick of the ugliness and sorry that I contributed to it.

I’m talking about politics. I’m sick of how ugly, personal, combative, low, obnoxious, aggressive, racist and sardonic it's become. The chasms – between left and right, Bernie and Hillary, Trump and sanity – are wider than the gaps between my pre-orthodontic teeth. I’d blame Mark Zuckerberg and Rupert Murdoch except they could have me killed so never mind.

Oh, sure, politics has always been ugly: Tammany Hall and Lee Atwater and Barry Goldwater and Father Charles Coughlin and Joe McCarthy and Morton Downey Jr. and Karl Rove and George Wallace blah blah blah. But today’s multi-network television landscape and the instantaneousness and reach of the internet must certainly exacerbate things. I can create an acerbic political meme in the morning here in Michigan and post it to my Facebook wall; by early afternoon, online friends in Stuttgart, Salvador, Seattle and Singapore can know what I think about Clinton’s latest flip-flop or Trump’s latest slur.

I remember hearing stories about the old days when Democrats and Republicans fought obstreperously during the day and then dined and drank together at night. Politicians used to compromise for the good of the proposal and the country. They would leave their work at their offices and appear together socially or professionally when called for. I can’t imagine seeing Democratic and Republican lawmakers at the same event or broadcast these days. If it weren’t for those yearly State of the Union speeches, I wouldn’t believe the two factions could breathe the same air at the same time.

I understand how one’s passion can cause one to forget how to behave civilly. I believe pretty strongly in what I believe and I’m not great at finding common ground with “the other side” these days. But if I – a middle-aged guy who used to work in politics and should therefore know how the game is played – can’t communicate with “opponents,” how are my children supposed to know how best to engage when they grow up? If every political post or meme in Facebook is derogatory or skewed, how can users know how to approach those on the other side of an issue or aisle? And if the media insist on depicting disagreements as dogfights, emphasizing silliness over substance and focusing not on policies but on personalities, how will we know what we ought to know? How will the laws and rules of the future serve the many and not the few?

I discovered that I’m less than six degrees away from a rabid Trumper in Facebook today. She’s the friend of a friend of a friend who I don’t know all that well. I’m not sure why I felt compelled to tiptoe through this particular tulip garden but this is what I found on my journey:







Nice, huh?

To be honest, I hadn’t come this close to a true Trumper before. I’d seen them on television and I’d heard about them beating people up at rallies but I hadn’t scrolled down one of their Facebook walls until today. Wow. I’m clearly not the only person who needs to apologize for spreading the vitriol around in politics.

The small-handed pinhead who should apologize the most and the loudest, of course, is the Trumpster himself. Yes, he’s a coarse, crass, ignorant, egotistical, sexist, racist, woman-hating barbarian who’s less qualified to become President of the United States than either of my two Maltese pups. Yes, his comments about women, Muslims, veterans, people of color, immigrants and almost every other segment of the world population have been remarkably obtuse and offensive. But it wasn’t until he publicly, jarringly ridiculed New York Times reporter Serge Kovaleski, who suffers from arthrogryposis – a congenital joint condition that affects the movement of joints and is noticeable in Mr. Kovaleski’s right arm and hand – in front of thousands at a rally in South Carolina last November that I realized one of this country’s major political parties just might make the biggest mistake since the American electorate re-elected Dubya the Dense back in 2004.


My visit to Trumper World got me wondering: if I’m only Facebook friends with people like me and only belong to groups that cater to people like me and only communicate with people like me, how can I pride myself on being well-rounded and tolerant?

Maybe I can’t.

Surely there’s got to be a way to connect with “them” on some level?

Maybe there isn’t.

The problem isn’t isolated. I’ve run across the following in the past few months:













The ugly sure is pervasive, isn’t it?

Incidentally, this campaign season has been an eye-opener for me in terms of how quickly friends can become ex-friends. See, I’ve long respected but disliked Hillary Clinton. I wrote a blog post entitled, “Why I’m Not Voting for Hillary Clinton” back in April of last year, just after she threw her hat in the ring. From the moment I first shared this less-than-fawning post about Madame Secretary, I’ve been attacked, threatened, blocked, unfriended, insulted and accused of being a Republican, a troll, both or worse. (I’m not sure there’s anything worse than a Republican troll but whatever.) I’ve dusted off my Democratic "cred." I’ve denied being a misogynist. I’ve patiently and repeatedly explained that the time to express one’s preference is before the nominees are chosen (although a case can be made that this occurred long before the Iowa primary for the Democrats). I’ve stated over and over why I’m supporting Bernie Sanders. Every explanation and protestation has been met with “Vote blue no matter who!” and “You must really want President Trump” and “Supreme Court, dude, Supreme Court” and “Either of ‘em would be better than a Republican.” (My rebuttal that Hillary is a Republican has not yet been well-received.) I suspected that the other side mandated unquestioning allegiance but I didn’t expect it from my fellow lefties.

This particular consternation has not dissuaded me from viewing politics as more repulsive than ever.

So what now, you ask?

There are some beliefs that I can’t or won’t change. I know, for example, that Barack Obama is not the secret love child of Beelzebub and Susan Sarandon. I know Sarah Palin is as dumb as a rock and only slightly more attractive. I know Mitt Romney and the Koch brothers eat babies at midnight and Bill O’Reilly paints Rush Limbaugh’s toenails every Sunday afternoon. But I can try not to get worked up over actual political falsehoods. I can count to ten or 11 before responding to a political assertion that I find abominable.

I know it’s not likely that issues like abortion and gun control will be resolved in my lifetime so it's silly of me to raise my voice and blood pressure every time they're brought up. I know it’s not my job to try to educate every misguided fool who crosses my path. And I don’t have to be right correct all the time.

I can probably even stop creating memes.



Sources: New York Times, BBC.com.