I've told you that I am writing a book, but I wish I could tell you that the parts of the book I have written are chapters. What I have is more like what happens after you take a hammer to a pan full of peppermint bark: some big chunks, some little shards, and a dramatic inequity of serving sizes. Also, some pieces have no peppermint and some have too much.
These servings are mostly -- but not completely -- autobiographical. If I stuck with the truth and only the truth, there'd be such a preponderance of peppermint that it would feel more like I'd handed you an insultingly large box of Altoids instead of peppermint bark.
So here's a large sample of the candy I've been working on. I leave it to you to tell me whether you feel like you've been given a treat or a dose.
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TILT
About three weeks before my college graduation, my best friend on campus, Rich, attempted suicide in a manner more gruesome than anything I could have previously imagined.
He did not succeed in dying: instead, he had a stroke which rendered his left arm useless and his left leg semi-functional. For two months he was in a coma, breathing through a tracheotomy and with a lack of facial affect that made him almost unrecognizable. I visited him twice in the hospital, accompanied by his girlfriend -- and his ex-girlfriend who was the only one of the three of us with a car.
His girlfriend was allowed to see him for twenty minutes of every hour. Every other hour, she would give me ten of her minutes. His ex-girlfriend, though friendly with him, relinquished her right to minutes so that his current girlfriend and I could see more of him. That is the sort of person she was: willing to drive from Ithaca to Syracuse repeatedly so that someone she once loved could see the person he currently loved.
Visiting someone in a coma is like auditioning for a play in which you‘ve been handed a script completely devoid of punctuation. You find yourself speaking too loudly, too brightly. My instructions from the nurse had sounded easy: do not mention mescaline, hallucinogenic drugs, marijuana, or Bad Trips in general. No hospitals or strokes. Do not mention his honors thesis, because even though you printed it out and handed it in for him, the mere mention of academics sends his heart rate soaring. Do not discuss his parents or his brother: too much potential to induce guilt. Do not talk about writing. Do not talk about writing.
Within the first thirty seconds I managed to tell him I’d just had a Bad Trip to Milwaukee visiting my mother in the hospital, and hadn’t gotten any writing done since I handed in my thesis.
Sometimes Rich appeared to be awake. His eyes would meet mine in a way that looked deliberate, or at least, I hoped was deliberate. His right hand was tethered to the bed rail (since he was a suicide risk) while his left hand, paralyzed, had a tendency to spasm and curl and was thus bound tightly in a slightly bent position.
At one point I was in the room with both him and his girlfriend, and he reached out his right hand as far as it would go within the bounds of its restraints and grazed my breast with his knuckles.
I assumed it was purely a reflex, but his girlfriend scolded him as if he were able-bodied and fully conscious. Later, much later, he told me that although he’d been hallucinating that the three of us were eating in an on-campus cafeteria, he knew very well that it was me. And he knew exactly what he was doing.
He’d thought to himself, “Given the circumstances I might be ale to get away with this. And I’d hate myself if I didn’t at least try.”
After a dismal graduation in which I sat between my father and Rich’s girlfriend, I went home to Milwaukee for what was supposed to be a month before joining my boyfriend, who had been graduated the year before us, in California. Rich stayed in the Syracuse hospital for about six more months.
Right about the time he was alert enough to begin making phone calls with his new, permanently altered voice -- he sounded like a cross between Maurice Chevalier and Bob Dylan -- I was diagnosed with inflammatory bowel disease. California was now out of the question. Our friends were in grad schools, doing internships in publishing houses, and getting investment banking jobs they would shortly lose in the Market crash of 1987. Rich and I were fifteen hundred miles apart, both of us living with our parents.
More importantly, we were both not writing fiction.
Fiction is how we met, how we became friends, and fiction writers was how we defined ourselves. As we told each other every time a manuscript came back from a literary journal with a form letter or perhaps a hand-written, No thanks, a writer is someone who writes. It was the only thing either of us wanted to be, and the fact that we were not writing made us both nobodies in our own minds. When you feel like Nobody, you have no wish to speak to Somebody.
We were never closer friends.
We spoke on the phone all the time, more than I spoke to my boyfriend by far, but we did not speak of suicide or debilitating stomach pain or Bad Trips or creative theses or even our old classmates. We talked about safe things: our favorite lines from Jane Austen’s Emma. His new hobby of cooking, and the unusual cooking tools he’d procured, designed for the one-handed.
In college we’d been competitive -- about as competitive as we could be while still being friends -- for the subjective and infrequent accolades to be found in fiction writing workshops. We did not admit to being competitive with each other, and if asked, we’d say we had “different styles.“ Truly, our writing was more alike than it wasn’t. We were both technically proficient writers, at times way too pleased with our own wit, but we had very little to say. Now everything had changed for both of us. We had things to say, but it hurt too much to say them.
During this time when we were both trying hard not to watch other people’s lives march forward, I felt as if Rich and I had signed a sacred cease-fire. I would never ask him, Why did you do that to yourself? And he would never ask me, So after your surgery -- you know it’s going to come to surgery -- then what? Occasionally we’d lament when other people asked us what we called “the weenie questions: Are you still writing? When will you write again? It went without saying we would never, never ask this of each other.
When I received a short story from him in the mail, it felt as unfair and ill-timed as the Tet Offensive. Rich was writing! He was writing and he had not told me. It was a children’s story -- unlike anything of his I’d ever seen -- and it was charming without being mawkish. It was clever and circular. It was good.
How dare he.
It was a story that demanded comment, but I could not bring myself to call him after I’d read it. For three days I did not call him, and I hated myself for my own pettiness. And then I realized: for three days he had not called me, either.
On the fourth day he called. “I’m back in the hospital,” he said.
This wasn’t surprising. He’d had many hospitalizations over those months since his initial release: once to remove a bladder stone “the size of a Backgammon chip,” and once to have surgery on his Achilles tendons, which had cramped and shortened from lack of use. There was even one brief stay to have a Foley catheter put back in, which he said “feels like someone’s sticking a trident right in your dingus.” We often joked that for him, doctor’s appointments were like taking your car in for repairs: they always seemed to find found fifteen other things wrong with him.
Apparently, driving a ballpoint pen through the socket of his right eye was not an event without repercussions. It led to a series of strokes, which led to the long-term tracheotomy, which led to the long hospitalization, and it all culminated in hemispheric paralysis. Nearly every system of his body was affected.
“What was it this time?” I asked, and he said, “I… you know… tried it again.”
I was so naïve that I was about to ask what it was when he said, “My wrists this time.”
When I think of what it felt like to be young, this is what I miss the most: not the physical stamina, not the ability to read a menu without holding it at arm’s length, and not being able to eat whatever I wanted without a thought to whether it would land me in the emergency room on a morphine drip and IV Fenergan.
I miss the innocent, flawed logic that allowed me to be surprised that my friend, who had already attempted suicide once and had succeeded in impairing himself for life, would try to kill himself again. I believed that if someone did something that caused a disastrous result then, surely, he would never do such a thing again. It seemed impossible to me that a person could wake in a hospital bed after two months and feel anything other than glad to be alive.
I never imagined him looking at his useless left arm and left leg and thinking, “I did this. I did this and nothing will ever be the same again. And the agony that made me do this is still there.”
I saw for the first time that whatever had made him want to die wasn’t the bad mescaline trip compounded with attempted “antidotes” of cocaine, LSD, and marijuana. It was a forever thing. It was the thing that made him able to type one hundred and ten words a minute, write a five-to-seven page paper on Pamela in just under two hours and correctly guess what his grade would be (“I‘ll get an A-, but then the A- will be crossed out and replaced with a B+”), and think of the very best private and insulting nicknames for us to ascribe to our classmates. It was also the thing that made him take mescaline in the first place when the one time I’d been in the presence of mere cocaine, the surprisingly strong medicinal smell made me reject it as a bridge too far.
“A bridge too far for Jen,” he had mocked, fluttering his hand to his throat in the way we always did when we were about to quote Richardson’s Pamela to each other. Knock me over with a feather.
We talked on the phone a long time that afternoon. I wanted to ask, “Did you go as far as to put your hands in warm water first? Did you cut lengthwise or across? Who found you? Had you secretly wanted to be found and thus did it when your parents were home, or had you planned this for months and they just happened to double-back when you hadn’t been expecting them to return for hours? In other words, did you really intend to die?Finally I broke our unwritten rule and asked, “Why did you do it?”
He said, too quickly, “You mean, why did I mail you that story?”
“Um, yeah.” Not the question I was asking, but apparently it was the only one he was going to answer. “It’s a good story,” I conceded.
“I wrote it over a year ago. It was last fall, for my girlfriend’s children’s writing class.” He paused for a moment. “I wanted you to think I was still writing.”
Then I didn’t care how he’d cut his wrists or how long he’d planned it. I just wanted to tell him that he had not needed to send me that story. I knew the fear of never being able to write well again, or worse yet, the fear of never wanting to write again. I wanted to tell him that of all the people he should worry about impressing, I should not be one of them.
He did not need to impress me because I understood what it felt like to be no one
I did not say any of these things because I understood that in what had become his very small world, mine was the only opinion that mattered. He did not care what his parents thought. And he certainly did not care what his girlfriend thought: she who had been unable to write her own short story in the first place.
I thought about how he might have felt over a year ago when he wrote that story, knowing it was good and that he wasn’t going to be able to take credit for it, not caring because he trusted that in him there were a million stories: stories he could hammer out at a hundred and ten words a minute. Had there been a moment of hesitation, a feeling that maybe he should hang onto that story as his own as an insurance policy for his post-graduate future?
“Do me a favor,” he said finally.
“Anything.”
“Take a boneless chicken breast -- no skin -- and put it in a microwave-safe dish. In a separate bowl, mix together a half cup thousand island dressing, a half cup apricot jam, and an envelope of onion soup mix. Pour it over the chicken, and nuke it for about two minutes. Maybe longer, depending on the size of the chicken breast.”
“That sounds… far from delish.”
“No, it works,” he said. “Trust me: it’s yummy. And don‘t say delish. Only weenies say delish.”
We were where we’d been before, but it did not feel the same to me. Our conversations went back to being light and frequent. We stuck to our narrow topics, but every time he called I had to stop myself from asking where he was calling from.
In other words, I made Microwave Chicken Picante (“In this instance,” he’d said, “Picante means: prepared in the following manner“), but my heart wasn’t in it.
It was after his second suicide attempt that I began to see life as a pinball game, where every connection you made between flipper and ball affected how that ball came back down the slope the next time. If, after a few hits, the ball came barreling down the dead center and out of the reach of both flippers, it must have been because of a weak hit you’d made earlier on. Perhaps you’d made a beginner’s mistake and had hit both flippers when you really only need to hit one, thereby using more force with the flipper that didn’t matter and not enough with the flipper that made contact.
I could see that with one thrust of the pen, Rich had changed the spin on that ball and how it would land on the flipper every time in his future. He’d impaired the entire flipper mechanism. Eventually that ball would come down the slope and neither of his flippers would work, but I didn’t know that at the time. And I didn’t know that whatever it was that would make his pinball game such a short one had been set in motion long before he’d ever picked up that ballpoint pen.
What I didn’t realize was that my pinball game had changed, too. Now there were small things, like a surgical scar, and an inability to ever have a minor stomach flu or ache without waves of panic. I didn’t realize that while my brain would keep its same frenetic pace, my body would never be able to match it again, even when my disease was in remission. I didn’t know nine months of high-dose prednisone would mean that by age forty-five, I’d have more root canals and crowns than I’d have virgin teeth.
Repeatedly, my doctor had assured me there was no reason I couldn’t have children. But he did not tell me I would never have a low risk pregnancy. And I would never, ever take comfort in the thought that whatever it was that frightened me at any given moment was “rare” or unlikely to happen.
The last time I had seen Rich on campus before he tried to kill himself, I had been overwhelmed by my thesis deadline and how much I had left to do. He had told me, “I’m almost done -- it’s just minor edits at this point. Besides, I’m not as insecure about this stuff as you are.”
I’d walked away, both annoyed and surprised. Usually he didn’t feel the need to jab like that if his girlfriend wasn’t there to require the reassurance that I was “just a friend.” It did not occur to me that he’d been trying to reassure himself.
At the time I was too consumed by my own pain to realize that my friend’s pinball game would also affect the workings of my own. I no longer took anyone at face value. Apparently, it’s not just your relatives who might try to hand you their baggage. Anyone could do it, if you let them. And if, like me, you were already carrying someone else’s valise, other people would be able to see this in your demeanor. If it hadn’t occurred to me waiting for hours in the Syracuse Intensive Care waiting room, I saw it now: I had the stance of a baggage handler.
I didn’t think about the pinball analogy again for many years, when I had children of my own. I mused about how you get to pull the initial plunger for your child, but then that’s it. You don’t get to use the flippers. You have to stand idly by and watch, resisting the urge to advise them on how and when to flip. You can take some quiet pride as their ball bounces off the bumpers and racks up 1,000 or 10,000 or even 100,000 points, but it was their accomplishment: not yours.
When Olive was born LB and I pulled that plunger and her ball rolled to the top of the machine. Then it stopped, resting against a bumper without bouncing.
Now what?
The temptation to lift the front of the machine just that tiny bit off the ground was enormous, but ultimately, not worth the risk of causing the end of the game entirely. We waited, priding ourselves that many, many years of watching children find and learn how to use their flippers had taught us the importance of waiting. We waited until she was three and a half, that magic age where people stop telling you stories about all the brilliant late-talkers they know and start whispering about you instead, wondering why you aren’t doing something.
Gingerly, we hit the flippers once, then twice, thinking that maybe that small amount of motion will nudge the ball back into play. And it did! It even hit the 10,000 points button a couple of times. We looked at the scoreboard and yes, there were the points. And then, just as quickly, the points disappeared from the board and the ball was once again, stuck against a bumper.
It was not supposed to work that way. It would take a long time for us to accept that Olive’s machine was different from that of our other children. And even was we reconciled to her unusual machine, we will probably never get over the fact her bumpers do not play fair. The points would come, we‘d get excited, and then they were gone.
Olive would learn a new skill, our hearts would soar, and then the skill would disappear as mysteriously as it had appeared.
We realized that our main power in helping her play was to feed more quarters into the machine. She needed extra balls in play: a fresh silver ball could help her somewhat wonky, irregularly shaped one with its tendency to rest against bumpers, get caught behind flippers, and lose points as quickly as it gains them.
The point-losing bumpers could not be changed. They had been installed when the machine was built -- perhaps even before the machine was built -- and we had to accept them as a given. We could blame the bumpers, blame each other, or blame the manufacturer. Or we could go another route and glorify the manufacturer for choosing us as worthy beneficiaries of this most unusual pinball game. It didn’t matter, and speculation -- though tempting -- was not going to help Olive navigate her machine.
Parents of children with autism have radically varied experiences, depending on not only where their child lands on the spectrum but their own comfort level with unpredictable machinery. Their own machines are necessarily changed by the working of the machine of their child, and there‘s always the risk that their own silver ball could get stuck, temporarily or permanently, behind a flipper. Parents of children with autism run the gamut in what they believe to be the causes of autism, the best way to treat it, if it can be cured and if so, how? They even disagree about whether it matters if you say “autistic child” or “child with autism.”
There is one area where I am willing to put myself out there and say I speak for the majority of parents of autistic children: we all agree that you need to put in lot of quarters.
