Taste: My Life through Food(62)
Week after week, month after month, as Matteo’s height and vocabulary grew, Emilia began to sleep through the night and learned to crawl, Nico and Isabel applied to universities and graduated high school, Camilla approached her junior year, we somehow moved into our new home, Felicity healed from her surgery, I slowly started to get better.
However I will admit that it was a much longer and more difficult recovery than I’d anticipated. I had suffered from depression during treatment, and even after treatment my depression continued for months. There were so many days when being confined to my bed, listening to my family go about their lives downstairs while I was unable to participate in any way, made me feel like a ghost in my own home. There were times when I believed I would never ever be able to cook or enjoy a meal again with the people I love.
Six months after my last treatment, I flew to New York City for a scan and stayed with our friends Ryan Reynolds and Blake Lively. (If you thought the name-dropping was over, I am sorry to break your rice bowl.) I wanted to go to the scan alone but Ryan insisted on coming with me. (He’s the only pushy Canadian I know.) The team of doctors gathered around with the results of that morning’s scan, which showed “no evidence of disease” (now my favorite four words in any language). Needless to say I was greatly relieved. Ryan had tears in his eyes, as did the female doctors, but I know it was only because they were in such close proximity to him.
The doctors all agreed that I could finally remove the feeding tube from my torso, and I was thrilled. A balloon filled with water keeps the tube from slipping out of you and onto the floor, and to remove it one simply drains the balloon, grabs on to the tube, and gives a good yank, which I was told would feel like a punch in the gut, and that’s that. I asked if we could do it then and there instead of waiting for the doctor who had inserted it. The mood was buoyant because of the good news and the presence of Mr. Reynolds in the room, so Dr. Bakst gave the go-ahead for the indecorous appendage to be removed. One of the female doctors, who, like the rest of the staff, including the men, had been in a constant blush since Deadpool himself had entered, said she would do the honors. Still in the amorous delirium of the starstruck, she grabbed the tube and was about to yank it from my wizened torso when I cried, “Wait!”
“What?!” she asked, looking at me slightly annoyed because I had spoiled her big moment in front of you-know-who.
“Don’t you want to deflate the balloon first?”
“The…?”
“The balloon. Inside me. You have to… otherwise it won’t fit through the—”
“Ohhhh, right, right. Yes. Of course. Sorry. I just… It’s been a while since I’ve done it.”
Amid much laughter, she carried out the procedure properly and I was finally free of what had been my second mouth for too long.
Once that tube was removed I felt a profound sense of freedom. Now I had no other way of eating except through the orifice specifically designed for that purpose. Although I had already begun to eat by mouth, my diet was limited to only soft, mild foods. This was frustrating, but I knew I had been incredibly lucky not to have lost the ability to swallow properly and move my tongue in a normal fashion, two side effects that are very common even without surgery because the radiation can cause significant damage to the muscles necessary for both actions. Speech therapists are part of post-treatment programs to teach recovering patients specific exercises to help them regain mobility in their tongue and jaw. Luckily four years of speech and vocal training made me hyperaware of what was happening and I was therefore able to do what was necessary to maintain normal movement along the way.
* * *
For over two years my mouth was incredibly sensitive. I couldn’t drink anything carbonated and certainly could not eat anything spicy. I was able to drink and taste alcohol but mostly stuck to white wine with copious amounts of ice. Red wine also had to be iced, as the tannins made it feel like someone had taken a cloth sprinkled with dust and pepper and dragged it across my tongue. My beloved Martinis were a sad struggle. Steak was impossible because the lack of saliva makes one unable to break down meat enough to swallow it and thereby the whole bite turns into a bolus that is very easily choked on. (I had a few close calls attempting to eat something as benign as a chicken breast.) The same was true for most flesh and thick pieces of bread. Whatever I ate had to contain a certain amount of moisture in or around it, otherwise it took quite a while to get it down my throat or I just couldn’t eat it at all.
It is fascinating how perfectly balanced the human body is. A little less saliva and the number of foods one can swallow drops precipitously. When I’d see my family members casually grab a piece of bread or a cracker, a piece of smoked salmon, or a few pieces of salami to slap into a baguette and wolf it down without a thought, I was so envious. For everything that entered my mouth, I’d have to calculate what I’d need to augment it with in order to swallow it without choking. Not unlike my father, I used to eat far too quickly. As a kid I would have finished my second dish of pasta when my sisters had barely finished their first. This bad habit disappeared out of necessity. I also could not casually chat to someone across the table while eating. For the most part, I had to finish the task at hand and then have a conversation.
Even when I was able to once again go to restaurants, have people over for a meal, or go to someone else’s home for dinner, I was filled with anxiety because I didn’t know what I’d be able to eat. I was afraid I would choke on something or eat something spicy by mistake and then not be able to eat for the rest of the night because my mouth would be in so much pain. If someone would ask me to taste something, whether it was a friend, a restaurant owner, or a chef, I would try a bite just out of politeness and fake that I could either taste it or swallow it, or that I wasn’t in agony. They could not understand or conceive of the fact that something so delicious might taste like shit to me or that even gentle spices might damage my mouth for the next twenty-four hours, or, for that matter, comprehend what it’s like to eat anything having basically no saliva. Even at home I often found myself eating separately from my family because I was embarrassed about how hard it was for me to get through a simple bowl of pasta. All of this was frustrating and anathema to the way I had lived my life ever since childhood. How I socialized was primarily through eating and drinking. Although each week there was some progress, I could not help but feel that things would never return to the way they were, when life was edible.