"The World of Tomorrow"

by Marley23

They broke my mother’s spirit on March 3. You remember dates of things like that even if you’re bad with dates. It started with a little maintenance procedure: they wheeled Tommy’s bed downstairs and made their third attempt to take the packing out of his nose.

The doctors tried to put a breathing tube down his throat and they failed. As they worked to get the tube in, they discovered a large blood clot moving toward his lung. Tommy couldn’t breathe and his blood pressure shot up. So they had to perform the tracheostomy. (Did you remember that I wrote, long ago, that it might happen? None of us remembered.) They cut open his soft throat and implanted a fat plastic tube that burst out through the skin. Now he couldn’t speak at all.

My mother called me on the phone to tell me what happened, and for the first time in three months, she started to cry. I couldn’t digest the idea of a trach until I saw it: it was a gross plastic eruption from under his skin that left dried blood under the bandage, as if it had generated spontaneously from inside his airway. They hadn’t taken the care to get all the blood, and some of it was still drying on his throat as if a violent murder had taken place in a motel with a lazy cleaning crew. Tommy was mutely furious and we felt his frustration at not being able to scream.

The tracheostomy was something new: its sole purpose was making us miserable. It didn’t threaten Tommy’s life. For Mom, it just took its place as another entry on the list of shit that had gone wrong for her 14-year-old son. It was cruel, and finally it was too much for her. She was never the same after that.

Mom did not mind that life could be hard. She could fight its obstacles. But when life was simply being mean-spirited, and wanted to prove it held every single one of the cards, there was nothing to fight. I don’t know if my mother had ever felt powerless before. She’d been forced to look into that abyss and see how small her struggles were. Had anything in her adult life ever made her feel like an ant?

You can’t go back once you get that kind of perspective, and so she cried in front of me for the third time in my entire life.

When the operations went wrong — I hope that’s not the title of a TV special — it was like lead flowing into your blood. It hurt and you understood it would continue to hurt until who knows when. Hospital time worked its curse again, not in how the seasons changed, but in the way the moments just didn’t move, and your emotions couldn’t move. They sagged around you like a tent instead of passing.

We tried to watch an old horror movie that night. It was called Satan’s School for Girls, and although a mere description feels inadequate, the story went like this: there’s a bunch of mysterious suicides at this New England prep school, so a heroine with a pixie cut goes undercover to find out what happened. Weird crap keeps happening, there are bizarre paintings and the girls, some of them cute, are losing their minds. Satan turns out to be a dreamy hunk of a teacher with feathered ’70s hair. Even worse, the hellbeast professor’s name is Dr. Clampett. The moral of the story is that two Charlie’s Angels beat one demonic Beverly Hillbilly.

I’m willing to put aside a lot of skepticism for a movie, but I couldn’t get past the name Clampett. Were we to believe that Satan was unaware of The Beverly Hillbillies when he was probably a key component in its success? The character wore a haircut that was appropriate for the time, so the Devil obviously had some knowledge of popular American culture. In fact, he’d been at the corrupted academy for many years, and the movie came out in 1973, which was only two years after The Beverly Hillbillies ended. So he was probably there while the show was on TV and the odds are the girls were laughing at Satan because he’d chosen the name of a TV redneck. His ill-considered human name was probably costing him converts for his dark army. If Beelzebub had thought about it some more instead of going with whatever name popped into his head, perhaps he would have taken over the world — or at least a few other posh boarding schools.

The movie wasn’t that terrible, but Tommy couldn’t force himself to stay awake. As Clampett-Satan gave up and the evil girls’ school burned to the ground and the credits rolled, my mother turned and asked me a question.

“How could this happen?”

She didn’t mean the movie. For the first time, she wondered about how his tumor formed. I told her some background about notochords without bringing up that web page that told me the chances of Tommy living another five years were 51 percent, or 35 percent over ten years.

But she didn’t really care about the medical details. She wanted Big Answers that I didn’t believe in, that I’d officially stopped believing in when I became an atheist at 13 and really let go of forever when Marie died the previous summer. My mom needed them, and I stood there under the fluorescent lights with nothing to offer.

“I know he wasn’t that good,” she said, entering into a list some of Tommy’s faults.

I was horrified. She sounded like she was practicing letting go of him in case things got worse. It was funny — at the time he needed us the most, we were trying to push him away so we could let go if the situation forced us to. At least, we tried to try to get ready. But the preparation never would have worked, of course. There was no way to lose him without years of suffering.

The situation demanded a joke. She couldn’t keep thinking like this, and I couldn’t listen to it.

“I always said he and that dog were a matched pair with the same personality,” I said. I actually did believe that. Tommy and Maggie were equally temperamental and unpredictable.

By this time, three or four large pictures of Maggie were posted around the room, and Tommy had three stuffed dogs — one brown English Springer, one black, and one floppy red bloodhound — watching over him. We talked a little more. Mom cried again as we talked, and I left that night wondering if she would be okay. Whatever “okay” meant in this corner of the world.

And almost immediately after that night, those hours of ultimate darkness and doubt in Mom’s soul, like grass returning to life after an overwhelming rain, Tommy recovered rapidly. Within a few days, he had an operation that put a different tube in his throat. If he put a plastic cap on the tube, he was able to speak a little bit.

The grafts took, finally, and the spinal fluid leaks stopped. Tommy did much better in physical therapy, and soon — when the nurses and my mom badgered him severely — he would walk around the tiled PICU floor on the river path. He did that a couple of times a day, surveying his charges like an aging drill instructor.

Within about a week, my parents were visiting physical therapy centers to choose Tommy’s next home. They only had a few options, four or five in New York and northern Jersey. If my grandparents had needed rehab, they could have looked at dozens of places.

After a couple of unsatisfying trips, they settled on the Burke Center in Westchester. There, my dad broke down and cried after hearing about the course of rehab they had in mind. He’d convinced himself that Tommy would be bedridden for the rest of his life, with only that gray shadow of a personality. Now he realized he might recover.

Mom called me one Sunday in mid-March. I missed the call, but heard her message: Tommy was finally leaving in a few days. There would be no more heartbreaking changes in his schedule. And I was instantly and totally seized by a religious purpose and drove the rest of the way home as fast as I could, with the stereo playing loud and Thom Yorke ooohing through the stereo like a lone monk in a haunted monastery.

I looked outside at the snow and wanted to wrap myself in the cold air. Then I knew what I needed to do, and felt a purpose you’re only supposed to feel during a religious experience. I ran inside, pulled the gray wool coat from the hook and picked up the shovel, and plunged down the stairs and buried the curved metal in the snow. The ground and bits of grass and dirt emerged slowly, one puzzle piece shaped shovelful at a time.

The pebbled concrete was brown and wet in front of the house. My arms hurt, and even though it was freezing cold, sweat ran down my face. It was too funny. My back bent like twisted iron. The dry air cracked my skin and my left hand started to bleed. The winter mixed with my blood, and then there was no pain. I didn’t think. There was nothing to do but clear the path, make things ready for Tommy.

There was work to do, preparations had to be made. Life was coming back to the house. There was still so much to do. From the front steps, the path I’d shoveled was shaped like the letter T.

I felt nothing, and Winter sang in me. Everything was love.

He left the hospital on March 20 while I was at work. I wish I’d been there to see his exit. If Tommy went in like a hero, he left like a goddamn champion. It must have been a sight. A bloodied champion, yes, who endured 14 or 15 operations in 56 days. But all the great champions shed blood along the way. That’s when they become great.

I imagined Tommy wheeling his way out of the hospital and going into the ambulance with a huge grin on his face and nurses waving handkerchiefs from the doorway. There would have to be a small swing brass band playing something snappy, like “When the Saints Go Marching In,” as he got into the ambulance. He needed a sendoff with bravado and good fortune. A black anonymous car would follow them up to Burke, like a Secret Service escort, just to make sure the dignitaries got there in good shape.

But for all that, my mother’s attitude about Tommy’s treatment didn’t rebound. Tommy was different, too, but he was just being himself. My mother knew what was on the line now.

She lived her whole life with very little regard for what people said she couldn’t do. For example, “Mom, you can’t call the school and ask if I can have a different teacher.” “Mom, I have a week to write this — why do I have to do it all tonight?” “Mom, you don’t know calculus.” She was a force of nature, and after I moved back to New York I started to respect that, and how much she could do with that attitude. I grew into the idea of running my own life by observing how she would handle these situations.

Jobs never contained my Mom’s energy. She worked in real estate when we were young, but putting in a full day of work never tired her out back then. All of a sudden, she was very aware there were some things she just couldn’t do. It would have made my and Jonah’s teenage years a lot easier if she’d figured that out sooner, and maybe my dad wouldn’t have been undermined by her always-stronger opinions. But the change was sad and diminishing.

For the first time I could see my mother as a woman her middle 50s. It wasn’t just me who had gotten older in the last five years, the last ten, the last twenty. The wrinkles that time wore into her face like rivers into tan stone, the hair dye they poured on her every few months — the signs were all there. I didn’t ignore them, but for a long time I didn’t understand them either. After that night in the hospital, I understood.

Maybe the evidence was always there: even if she worried that Tommy would get into drinking and drugs one day, she went easier on Tommy than she did on me and Jonah. We would have been executed for doing those things. She found time to micromanage our lives while working and, when I was in high school, holding a position on the Merrick school board.

My friends always used to call her crazy. Not to her face, of course — and not always with my approval. Did I really grow old and stupid enough to miss being called a “social butterfly” for trying to spend a day with my friends over a holiday break? No. But doing things like that, and many other methods that were less demanding and insane, were the ways she tried to help. Could she not do those things anymore? Or was she realizing that she could have done things differently?

It turned out she could still do those things. She and Tommy would have plenty of time to drive each other crazy over the next few months.