Jason lifted Felix up to the smudged glass shield that protected a selection of gelati and sorbetto from the greedy fingers of the line. Felix was two and a half at the time, strawberry blond with bright, very interested eyes, and an abundance of pink cheek. He was also brain damaged. He had lost a significant amount of white matter in utero, probably the result of a major bout with the chicken pox I had while carrying him. "Nocciola, albicocca, fragola, stracciatella," I whispered in his ear, not quite certain of the pronunciation, not to mention meaning, of what I was reading, but enjoying the melody of the syllables. Was this what language was like for my son, pure rhythm and intonation? He could hear and make noise, but he did not seem to attach meaning to words. Words only affected him when they took on the lilt of nursery rhymes or songs. Add melody, and he was all attention.
Felix gazed covetously at the ice cream, different even visually from the American version, something about the hue, the texture, the promising way that each flavor overflowed from its silver bin. My eyes probably gleamed in the same way as Felix's. I hadn't had real gelato since Jason and my last trip to Italy, our honeymoon, years before. We scrutinized Felix's face, trying to discern which flavor most appealed to him. His eyes roamed the rows, apparently desirous of everything. The girl behind the counter looked at us expectantly. "Stracciatella," I said. It looked like chocolate chip, a particular favorite of Felix's. For myself I pointed at some chocolate hazelnut concoction. We settled down at a little marble table and I gave Felix his first taste. A gigantic smile spread over his face. Pure delight. A delight so powerful and radiant that it emanated throughout the gelateria, causing young families and old couples to swivel in their seats, laughing at the extent of Felix's happiness. He opened his mouth for more.
We did not know then that Felix was autistic, a diagnosis that would come in the following year. I mention this now because it helps to illustrate the intensity of Felix's delight. While autism affects individuals in different ways, it is fair to say that autistic people process emotions in a highly irregular fashion. Temple Grandin, a wonderfully articulate and intelligent autistic woman, writes that in her lifetime, she has experienced only four emotions: hate, fear, anger and joy. Further, these feelings come at her in their purest form, undiluted by any secondary emotions. She can understand the concept of mixed feelings, but she has never experienced the sensation herself. Thus she cannot appreciate novels, as novels so often deal with characters navigating through a slurry pit of emotion: love mixed with resentment, longing mixed with fear, and so on.
Judging from the array of expressions that lighten and darken Felix's face, not to mention his coos, shouts and giggles, I am convinced that Felix experiences a much fuller palette of emotions than Temple Grandin, but I suspect that he may share her propensity for a single emotion coming at him full throttle. Imagine, then, that you are he, a two and a half year old with a sweet tooth, experiencing your first taste of the best ice cream in the world, for certainly no people make ice cream better than the Italians. Every particle of your being is focused on your mouth: your brain does not bother you with second thoughts about another flavor being better, or annoyance at the sticky goo running down your chin, or idle puzzling about what happens next. Everything in your world is happening now, and now is fabulously sweet, cool, chocolaty, creamy and good.
And then the goodness ends.
At the end of Felix's stracciatella, he opened his mouth and grunted, indicating that he wanted more. "Oh sweetie, we'll get more ice cream tomorrow," I said, hoping that my voice would convey some sort of comfort, for Felix was a master of intonation. An angry glint appeared in his eyes. "Felix," I said, more firmly, "It's OK." But it wasn't OK. It wasn't OK at all. He yelled with such force that a hush fell over the gelateria. Jason and I bent over his stroller. Pleading. Cajoling. Hissing. His color deepened into an enraged purple. We rushed him outside, dimly aware of people scraping tables and chairs out of our way.
We had been hoping that the outdoor scene would distract him. But there we were, in the main square in Todi, a gorgeous old hill town a couple hours north of Rome, flapping our arms as Felix's rage grew to apoplectic heights. His yells echoed off the medieval stone walls, getting louder and louder. The whole square resounded. We were perplexed. We gave him ice cream all the time in Brooklyn. Never was the end protested with anything, anything like this. Was it simply because this ice cream was so much better? The end therefore that much more terrible? People rushed towards us, Italian women in house dresses, tourists with cameras, a policeman, a bookish gentleman in a dapper corduroy suit. They gathered in a concerned crowd, clucking and wringing their hands. A medley of languages streamed from my mouth. Perdon! No problemo! It's OK! No es grave, es simplemente que il n'y a pas plus de gelato. The man in the dapper suit somehow understood what I was trying to say, ran into the gelateria that got us into this mess, and reappeared with a fresh cup of vaniglia. But it was no use. Felix was too furious to see, to eat, to do anything except howl. Jason and I bobbed our heads up and down, smiling inanely at the people surrounding us, as if somehow our smiles could mitigate the fury of our son. Hesitantly, apologetically, we backed the stroller away from them. Having reached what seemed an appropriate distance, we swiveled around and hightailed it out of there, racing through a maze of alleys, hoisting the stroller with its screaming cargo up and down narrow staircases until at last we reached the great arched door out of the city. Still Felix roared.
Felix's brain damage had also affected his muscle tone, rendering him hypotonic, or, to use the term favored by earlier, more descriptive generations, "floppy." His muscle tone was so low that it had taken him over a year to learn how to sit. He could not stand independently or walk without a walker. When you have a child with multiple disabilities, after the initial agonizing getting-used-to-it period, which I suppose never quite ends, but becomes less present over time, you become grateful for the various systems in your child's body that do work. As is clear by now, Felix's digestive tract worked. This was not something that we took for granted. The muscular coordination involved in chewing, swallowing and directing the food to the gut instead of the lung is intricate and complex, and many of Felix's peers could not and cannot manage it. For them, eating is dangerous. To cut down on the chances of choking, they are fed through what is called a g-tube. The "g" paradoxically stands for gastronomy, a practice from which they are excluded. Their food is pumped into them through the nose or straight into the stomach, rendering it tasteless, pure nutrition. Even with the g-tube, they sometimes choke to death. Thus feeding becomes a fraught medical procedure, instead of, as it was for us, a time of mirth, messiness, communion, and taste.
We loved eating with Felix not only because he enjoyed it so, but also because food gave us a window into his mind. One of the things about having a nonverbal child is that you spend an enormous proportion of your time speculating about what he is thinking. We had a pretty good idea of what Felix was feeling, for he had a mobile and expressive face. But it is one thing to note that he was happy, sad, amused, bored, interested, sulky, furious or anguished, and quite another to know why. When he was eating something that interested him, however, things became direct and clear. Consider the lime. He would grab a wedge from somebody's drink and chomp down on the pulp. His whole face would contract, as if the lime was sucking the juice out of him. Then he would laugh and do it again. For once we knew why he was laughing. He was enjoying the strange puckering sensation of lime taking over.
But as much as we loved feeding Felix, we were wary of giving him another gelato.
* * *
The next day in Italy we drove to the lovely little town of Montefalco, a jumble of ancient stone buildings and cobblestone squares perched atop a steep, windblown hill. We had a long, lazy lunch at an enoteca on the main square involving local salumi and formaggio, warm rich noodles with truffles shaved on, risotti, grilled radiccio, fresh tomatoes, saltless bread, and a bottle of the local, tremendously good red wine. We were grateful to Felix for letting us do this. The two-year-old set is notoriously squirmy and impatient and a quick study when it comes to jimmying the safety belts on high chairs. Most of our friends with kids Felix's age could at best pop a sandwich into their mouths while squatting under the table to stop their kids from overturning it. Felix, however, loved restaurants and routinely allowed us to camp out at them for two or three hours. He loved sitting in his high chair, perhaps because sitting was still a relatively fresh accomplishment for him. He loved sampling and strewing the food about. He loved flirting with the waitresses. He would grab their hands and pull them towards him, a pretty crude technique, but I cannot recall anyone ever getting annoyed, only a succession of pretty girls laughing and leaning down to kiss him, occasionally brushing his head with their breasts.
After lunch, we wandered the streets, poking about in chapels and galleries as Felix snoozed in his stroller. He woke up in the late afternoon. The wind had abated. The sun had burned away every bit of cloud in the sky. We clung to the shadowy sides of streets, hurrying across scorching swathes of pavement to the next patch of shade. It was five or six o'clock, the traditional time to cool off with a gelato, and true to form every Italian in the street seemed to be doing exactly that. We figured we would give it another try.
We did not bring Felix into the gelateria this time, lest the festive sight of all those bins of ice cream trigger the memory of what happened the day before. Instead I settled on a bench and played with Felix while Jason disappeared for a moment, then reappeared with a cup of raspberry sorbetto for himself, a nocciola for me, and for Felix, a limone. Perhaps something less creamy, something less sweet would delight Felix without, well, delighting him too much, rendering life without it unbearable. Jason fed him his first spoonful. Felix beamed. This was no ordinary lemon ice. This was something magical. How is it that the Italians can take water, lemon and sugar and make it so unbelievably good? Is it their water? Is it that the Mediterranean soil gives a particular tang to those lemons? Is it simply the freshness? We beamed back at Felix. Our ice creams were delicious, too. We ate them as slowly as we could, savoring the taste, as Jason did some hand-over-hand feeding with Felix. We hoped that letting Felix wield the spoon would prepare him for and let him understand the inevitability of what was to come. His sorbetto was not arbitrarily disappearing. He, Felix Factor, was taking it out of the cup and putting it into his mouth. He still had it. It was just inside him, not outside him. When there was only one bite left, Jason scooped it up and held it in front of Felix. "One last bite, Felix." Felix's forehead darkened. Jason tried to feed him the last bite, but Felix swatted the spoon away. And then it came, the full throttle
A spiral of rage that ricocheted off the buildings and expanded into the sky. Once again, we speed-walked out of town, the stroller jolting over the cobblestones, Felix gesticulating wildly, his face purple. We avoided the looks of the villagers, in the process almost running over an old, thick-calved lady who stepped towards us, wanting to help. We lacked the language to say, "You can't help. There's nothing that you can do. Nothing! Nothing!" We just raced on, pretending somehow we hadn't seen her, on to the shelter of our car, where Felix would continue to scream, but at least not so publicly.
My goodness. The endurance. How could his lungs cope? Weren't vocal chords supposed to snap? One thing was certain: No more gelato. No more sorbetto. As sad as we were about having to cut out this particular delight, we were proud of Felix. Felix had not become angry at the end of his limone, he became angry when Jason said, "one last bite." He had understood Jason's words. How? How had this kid—who to this day, now seven years old, still scores as a nine-month-old in intellectual development, who according to the tests cannot understand language, who cannot understand causality—how had he understood? Was it through intonation, observation, a momentary parting of the clouds that obscured the language processing parts of his brain? We did not know, but clearly he understood, if not the individual words, then the concept of "one last bite." Moreover his understanding was sophisticated: Not simply was there only one bite left, but after that bite, there would be no more. All his pleasure would end. The knowledge of this ending was so brutal that he hadn't even wanted that last bite. That last bite was a sop. He had swatted it away. Jason called it an intimation of mortality.
Proud, but firm: we were not going to put up with anguish about mortality, as understandable as it was, every afternoon of our vacation. No more gelato. The next day, we drove to the Commune of Orvieto, an aerie of a town, high atop a volcanic bluff with a steep little road that switch backs up to the city gate. We headed for the Cathedral, having read a wonderful account of its construction, and spent much of the afternoon wandering about the enormous interior. It was an amazing place, cool and hushed, with light filtering through alabaster windows and beautiful stone and artwork everywhere. Someone played the organ, enchanting Felix, who also seemed pleased by the way his walker glided on the smooth marble floors. At one point in our stay, the enormous front doors opened and a funeral procession entered. We slipped into a chapel so as not to be in the way and were met by Signorelli's painting of the Last Judgment. Jason put Felix on his shoulders and we gaped. Implacable blond angels in full armor watched over a writhing mass of demons and sinners, their naked flesh greenish but supple, their muscles honed and splendid, a heap of bodies that in our day might feature in ads for a Chelsea gym. As alluring as those bodies were, what was most memorable about the painting was the spirit that enlivened it, a weird mix of agony and humor. The sinners suffered brutally. Their eyes bulged and their sinews snapped as the demons jabbed them with swords and twisted them into highly uncomfortable positions. Yet it was clear that they still had not learned their lesson. In the midst of being consigned to hell, they reached out to one another, desiring each other still.
When we finally stepped outside we were stunned by the brightness of the afternoon. We stumbled into the plaza blinking. The heat beat down on us and rose in shimmering waves from the paving stones. After my eyes adjusted, I scanned the square to get our bearings. There, off to the right was the blue and white awning of a gelateria that a friend had told me about. It supposedly made the best gelato in all of Umbria. Jason followed the direction of my gaze. We both shook our heads at the same time. No. Absolutely not.
We turned the stroller in the opposite direction and strode away. The heat was crushing after the coolness of the Cathedral. I couldn't understand how anyone survived in Orvieto during the summer. Maybe the demons and lust were incidental and Signorelli's sufferers were really writhing from heat stroke. Maybe I could slip behind and get myself a gelato? Felix would never know. I'd eat it in secret. I wanted to see if that gelateria could possibly make better stuff than what I had already tasted. I doubted it, but how would I know if I didn't try? We might never be in Orvieto again. I patted Felix's head, preemptively guilty. Sweat curled his hair, making cherubic little ringlets. His cheeks were flushed with pink. Jason looked at me. We were both thinking the same thing. Felix had been so good in the Cathedral, letting us wander around for hours. Now he sagged in his stroller, his eyes dulled by exhaustion. We swayed in the heat. It was too hot to talk. Besides, there was nothing to say. We both knew the likely outcome of giving in to this urge. And yet. And yet. Jason turned the stroller and we walked, as if compelled, towards the gelateria.
* * *
Eliza Factor is the author of The Mercury Fountain and the founder of Extreme Kids & Crew, an arts based community center for families raising children with disabilities. She is working on a memoir about life with her son.
Gabrielle Gamboa is a cartoonist, illustrator and arts educator who lives in the San Francisco Bay Area. She is currently working on a graphic novel set in post-war Los Angeles.