5,000 Likes < 2 Loves

two_boys_and_girl_by_alzbettta-d38998a

After the last time he got sick, and then the surgery, Ben told me he wasn’t sure if he had a near-death experience or actually died.

“I’m still not sure,” he said.

When we were nine, Ben and I met at my friend Chrissy’s house. His mom had just moved them here from Syracuse, where his dad stayed because he was a professor at the university there and had begun some new graduate research. The graduate was named Lisa Bianchini. But she’s not that much a part of Ben’s story, other than she was the reason I met Ben.

Right off the bat, I could tell Ben was different from most of the kids I knew. He was super skinny. I mean he had to run around under the shower just to get wet, my dad said. Dad wasn’t being mean, just stating a fact the way my dad does.

They thought Ben had cystic fibrosis, which I had no idea what that meant. All I knew is that Ben ate like a horse and still looked like a little stick figure. My grandma would lovingly near-force feed him spaghetti and meatballs, big slabs of Italian bread with butter, not olive oil, which must have killed her, and a lot of cheese.

“Mangia, Benito,” she’d say. “You too tin. Gotta eat more, little bird.”

We learned pretty quickly cheese was a no-no for Ben, though. He’d get all yucky in his throat and start coughing and gagging and cough up wads of sticky phlegm you could use to plaster a wall.

After that, Nonna Marie still pushed the pasta, but the formaggio was out.

And Ben was out, too. He had lots of colds and infections and such, which keeps him out of school. That was rough because Ben was a really good kid. He didn’t deserve any of this. No one did.

And while this upset me a lot, no one got more upset than Chrissy whenever Ben got sick again. Their moms were girlfriends in high school and college and Chrissy’s mom convinced Ben’s to leave the professor and move back to Albany. But the relationship between Ben and Chrissy was more than just school chums or even that kind of thing where the guy would pick on the girl because he liked her or she would call his house and hang up.

When we were thirteen, Ben was feeling pretty good for a while and he and Chrissy started getting really close.

“Un colpo di fulme,” Nonna said to my mom, who giggled at the idea that these two little kids she’d known since they were in third grade.

“The lightning bolt, Mama? Really” she said.

“What were your mom and grandma laughing about?” Ben asked me later. After we walked Chrissy home, during which I felt uncomfortable as a guy could be with his two best friends.

“Um, I think she said something about the weather, a storm coming or something,” I said.

“Then why were they looking at Chrissy and me when they said it?” Ben was nothing if not perceptive of the observations of others. Maybe even paranoid. You get that way when everybody stares at you like a lab specimen when you’re a tiny little kid or when a teenager coughing up a lung at the mall.

“I don’t know. You want me to ask ‘em, or something?” I said, none too happy about him acting all accusatory about the women in my life. My lack of understanding of Italian idiom and the female need for the expression and reception of feelings did not serve me well at that and some later points in my life.

Like when Ben’s mom met Bob Marino at one of my folks’ barbecue and beers parties. By that time I HAD asked Mom about that lightning bolt thing and I could see Ben’s mom and Mr. Marino sparked one off as soon as Dad introduced them to one another.

By this time Ben and Chrissy were pretty serious, even though Ben would still miss a lot of school with his infections and big breathing issues. He showed me this vest he had to wear for treatment every night. It had all these hoses attached to it that hooked to this compressor apparatus. When he put it on and fired it up, it would compress and loosen up around his chest in really fast pulses. I tried it on, at his smiling request, and it felt like eight guys punching me in the ribs.

That was the thing about Ben, he had this perpetual smile, across a spectrum, but still a smile. I don’t know how he did it. If I smiled that much everyone would think I was crazy or up to something.

When we were seniors in high school, Ben started putting up these posts on a website he built for himself to let kids know what it was like to live with CF. It was a big success. Web hits up the ass. He took this information to Twitter and, of course, Facebook. People from around the world would read and comment, friend and subscribe.

He would always be pulling out his phone and checking his notifications and dropping new or answering old tweets and posts. It almost was nonstop. But Ben said he knew he was doing God’s work in informing as many people as he could about, and putting a face to, CF.

A lot of them were girls who were smitten by Ben’s looks (the boy was still skinny, but had the face of an angel), his generally upbeat attitude (even when he was hospitalized for treatments of infections and his other maladies) and his sense of humor (graveyard mixed with superhero).

At first, Chrissy thought this was pretty cool, how her boyfriend had gone viral——in a good way——bringing hope to other kids with CF and information to whoever else climbed aboard the digital B-Train. She even styled him for when he began doing You Tube videos and posted vids on his blog. But that only made more girls glom onto Ben, which got to Chrissy.

“So what do you think I should wear for my next video, Chris?” he asked her one night.

“Oh, I don’t know. Why don’t you ask one of your couple thousand panting hoochies what they’d like to see you take off?” Chrissy said. Cold, like liquid nitrogen cold.

“Hey, what’s the matter? Are you jealous of a bunch of female avatars and nom de Web anonymous chicks? Don’t be ridiculous. You’re my girl. Always have been. Nothing’s changed there.”

I think he lost her at “ridiculous.”

“No, Ben, something has changed. I’m not sure if it’s you or me, but something has definitely changed,” Chrissy said, and stormed out of Ben’s upstairs office/studio/flop.

“Chris, come back. We gotta talk about this,” he said. But she was already our the door and he started wheezing, gagging and coughing, so he wasn’t in any shape to chase her. Not that he could chase anything anymore.

Ben quickly gave himself a nebulizer treatment and put on his sparring vest, but relief was not coming to quickly.

I yelled downstairs for Mrs. Marino, she’d married Bob by then, and told her to hurry upstairs. Ben was drowning in mucous, I could tell, and I didn’t know what to do and didn’t want to see my friend die in front of me.

Mrs. Marino, confronted by a lot of these episodes over Ben’s lifetime, began a different kind of treatment and had me call 911. The ambulance got there within five or ten minutes, but Ben was looking really bad when they shoved him aboard and raced for Albany Med.

That was the last I saw of Ben for a while.

He was one sick dude. He was so sick and so weak, that he couldn’t see anyone but his mom, stepdad, father. Not his father’s new girl, though. The old man had game and balls big as church bells, but no juice with the docs at Albany Med.

Obviously I couldn’t see him. And Chrissy didn’t want to see him, which I think was more a guilt thing in her mind than any jealousy issue she had stoked to a blast that afternoon.

Essentially, Ben as a human being disappeared from everyone’s lives except his parents’.
And, over the moths he was hospitalized, he disappeared from his online life, as well. I did a few posts updating his blog and other feeds, but most of the people who came to him like coughing Jesus had already skipped to a new social media Messiah. His hits went down like a rock.

And then he got worse.

The doctors in Albany conferred with docs from Cleveland Clinic and New York-Presbyterian, Mrs. Marino told my mom and dad, and came up with the plan that the only way to keep Ben alive was to do a lung transplant and try some new genetic treatments. But, as they say in soccer, Ben’s clock was on the field. He was running out of time.

I let Chrissy know and she just lost it. She was an emotional bomb set to go off and I detonated her.

“This is my fault. I’ve killed him. How am I supposed to live with this. My Ben, my poor Ben…” she went on like this for like thirty minutes and left a huge wet spot on my shirt from her crying, dripping and drooling. For a second, I thought of taking advantage of my position as consoler-in-chief and shoulder to the boyfriend-bereft, but the picture of Ben lying on his potential death bed and mine framed in the shaving mirror each day cured me of that.

“Chrissy, you want to talk to Mrs. Marino?” I asked. “I think that might be a good thing for both of you. She loves you like a daughter and wonders where the heck you’ve been.”

“No, no. I—-I just can’t. Not now, not yet. Just tell her how sorry I am and I’m praying for Ben more than anything in my life.”

Then Chrissy went off on another neck-clutching crying jag and when I left her house to give Mrs. Marino her message, I stopped off at mine for a new shirt.

They told me Ben was in days of dying when some suitable donor lungs popped up on the transplant Bat-phone. They Life-Flighted Ben to New York-Presbyterian and he had a new set of bellows within the next day. But he was a long way from being well. Six more months he spent in New York and rehab back in Albany.

Let me tell you, if Chrissy thought something in Ben had changed before he got really sick, it was nothing compared to when he got his new lungs. He lost interest in so many things that used to make him Ben. Didn’t want to play Madden with me, didn’t want to go online for the longest time and when he did, he quickly logged off and went into a funk. A couple of times, they thought he was rejecting the new lungs after he hit CLOSE.

“C’mon, man, what’s going on?” I finally said.

“Where’s Chrissy?” he said.

“Uh, well she doesn’t think she oughta come see you. Thinks she’s the reason you nearly died. I tried to tell her different, tell her your mom said this was inevitable, but,” I shrugged, “she’s a chick. They feed on emotion and drama and for some in her present state, that’s all they feed on.”
“Hmmmph,” was all he said, and then told me he needed to rest. Different.

I decided to settle this one way or another. I told Chrissy Ben was asking for her every day and she should at least let him know she was still alive. Even if he seemed more alive than she did. I said to drop him an email, a card, a text, anything. Throw the guy a bone of any kind.

“You don’t have to pledge your troth, Chrissy,” I said.

“Shut up and good night,” she said with a profound click.

The next day Ben was looking a little rosier, which wasn’t hard to do, considering.

“Mom got an email from Chrissy,” he said.

“What she say?”

“Asked how I was. Hoped I’m feeling better and will be back to school soon.”

“That’s it?”

“Yeah. Isn’t that great?”

“That she emailed your mom and not you?”

“It’s a start, bud. It’s a start. Now help me up, it’s time for my lap of the ward.”
And that’s all it took for Ben to get back to being Ben. Except for his going back to being a social media star.

“I’m not exactly Mr. Cystic Fibrosis anymore, so…”

“Man, you’re still the best communicator for CF kids ever.No one knows more about it. No one has gone through just about every stage, except the last one. You’ve still got a lot to today and there are still a lot of people who need to hear it,” I said.

It’s a funny thing about how fickle the world, especially the digital part of it, can be. When Ben decided to dip his toe back into his old online identity, no one was there waiting for him. It wasn’t that he wasn’t Mr. Cystic Fibrosis. There still were people who wanted to know about all that. But all those people, those ‘civilians,” heck, I’ll say it, all those girls, found their new cute, funny and vulnerable Jesus.

This bit of reality in a phony world hit Ben hard, harder than I would have thought of of him. He lost interest in a lot again. He even went back into the hospital when his body began rejecting the new lungs. Until they got his anti-rejection drugs squared away with all his other treatments, I thought I might lose him again.

That was until Chrissy showed up one day.

“It was only for fifteen minutes, but it was nice,” Ben said. He still was pretty weak, but he got better each day Chrissy came by.

When he finally was released and after some more rehab, he was almost all Ben, except he didn’t check his notifications or his email anymore. There wasn’t any. There were, however, texts.

And that’s what brought us to this afternoon, when I met Ben outside his doc’s.

He pulled out his phone and just looked at its glass front, like he was checking to see his reflection. Or maybe it was to see if he even had a reflection.

“Everyone thinks I’m dead,” he said.

“Knock it off,” I said and punched him in the arm. “If you were dead would you feel that?”

“No. And ouch. I’m just kidding you. I know I’m still here,” he said with a little laugh. His phone gave a little chime and he looked at that same glass and found what he was looking for this time.

“Let’s go down to O’Heaney’s. I’m thirsty for a cold beer and a warm girl.”

On this 12th day of my September Story a Day challenge, I was supposed to write a protagonist who had many fine traits but one flaw. I was supposed to write this character where they get to show off their good talents but where their flaw caused them problems. Then, write my way out of it. I started writing it and then I thought I wasn’t only searching for a flaw, but also my protagonist. But I wrote my way in and dug my way out. This first draft is still a work in progress. But I’m willing to work on its progress.

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3 thoughts on “5,000 Likes < 2 Loves

  1. Wow.

    Just wow.

    This one got me in places I don’t spend much time in these days. I’ve been mostly happily married for 19 years and a bit, and my children are laughing in the other room, and my husband sleeping beside me, as I type this.

    But, for most of 1994, and the fist few months of 1995, I lived a different life in a top floor duplex in Glens Falls – a life bounded on all sides by cystic fibrosis. My boyfriend wasn’t diagnosed until he was 27 (a few years before I met him because my friend was living with his friend, and thought we’d be a good match, and turned out to be right).

    We’d been together maybe 5 months the first time he went to Albany Med. I did have juice with the docs, because he was healthier when I was there. I often slept in his bed. Once, a substitute nurse who didn’t knock found out that CF doesn’t necessarily rob a man of his libido. I was mortified, but she wouldn’t even look at me.

    We were engaged in a hospital bed at Albany Med – and that same bed is where he died, the week before we were scheduled to go to Brigham and Women’s in Boston for a transplant consult.

    There was no Twitter, no Facebook, no cell phones. But Tim had the smile and the same sense of humor – in that way, you could have been talking about him.

    A part of me will be forever his, forever the 25 year old who was still more girl than woman when he died.

    Because of him, the 47 year old version of me is a much better wife and mother than I might have been.

    There were tears from the doctors and nurses on his floor the stormy April morning when he died.

    Thank you for getting so very much right with this one. I had been diagnosed before the second paragraph was over.

    • Thank you, Shân. Your comment means an awful lot to me. I strive to be as accurate as I can be in my historical stories, and no less in all my other stories. That it struck an emotional connection with even one reader means even more. Thanks, again. ~ jh

      • It did indeed. I’m trying to remember if the floor the adult patients were on in 1985 was E-5 or E-7. I know it was an E, but the number fails me. It probably changed at some point anyway – there were a lot fewer adults living with CF then than there are now, in part due to much better therapies, some genetically based. Tim was part of a trail for one of those.

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