In online forums, I have seen many comments and questions about ALS and eating issues, ranging from chewing, swallowing and calories to getting and navigating feeding tubes. Eating is an experience that we take for granted until ALS happens. More than taste, food conjures memories and draws all kinds of connections for us. Ben and I used to enjoy a Saturday night when I would choose a recipe, then we shopped together, and I cooked with a little help and a lot of enthusiasm from Ben. On special holidays, like New Year’s Eve, we did not like to party, and for us it was fun to choose a new and fancy recipe and just have a cozy evening. With ALS, Ben could no longer eat his favorite foods. Even treats like jellybeans were no longer an option. While that may not seem like a big deal, our love of jellybeans went back to the very beginning of our romance. I don’t think I realized the significance of food for us until we were not able to enjoy that romantic and fun aspect of our relationship.
In the Disney film Ratatouille, Remy says, “If you are what you eat, then I only want to eat the good stuff.” Unfortunately, as chewing and swallowing became more difficult and daunting, Ben did not want to eat and he was losing a lot of weight. Like many people with ALS, Ben’s life started to include a lot of Ensure Plus because he needed extra calories. Like Remy, I began to improvise and combine different foods to make as much “good stuff” as possible. Ben got a daily milkshake with calorie dense ice cream, peanut butter, and assorted other fruit and treats. Much as I love sweets, I never had one of those milkshakes, have never had a milkshake since and probably never will.
The ghost of famed chef Gusteau advises that “cooking is not for the faint of heart. You must be imaginative, strong-hearted, you must be willing to try things that may not work.” Indeed, I did use my creativity, and, in retrospect, it was a way to be craftsy, which I missed in my life. Also, it was a way to bring something vaguely resembling the fun evenings we had when I cooked. I replaced our regular blender with an impressive Vitamix. Ben loved chicken, gravy and mashed potatoes all mixed into a bisque-like consistency. He enjoyed chicken with teriyaki sauce and mashed potatoes. I even perfected a carbonara-like sauce for him. I experimented with different broths to help with textures and flavors. Ben had a great sense of humor about it laughed at my eccentric presentations, but he did miss chewing, and the reality was that eating did become a scary. There was always the fear of choking. Additionally, when he could no longer hold utensils or a cup, he had to be fed his meals. This was yet another constant reminder of his lack of independence and ability.
Even when he had a home health aide who loved to cook, Ben preferred that I did his cooking. When I left food for her to just heat and grind in the Vitamix, Ben was always upset that she didn’t grind it enough. He said she insisted it was chopped as much as possible. Of course, that wasn’t true, since I was easily able to achieve more of a puree. I have seen caregivers who do not take seriously the requests from their carees. In many cases, as with Ben, those requests are legitimate. Frankly, as I saw it, even if a request was simply a desire by Ben to exercise some control, it is understandable in the context of the little control he had over his life.
When unknowingly critiquing the rat Remy’s meal, Anton Ego, the food critic, reflected, “In the grand scheme of things, the average piece of junk is probably more meaningful than our criticism designating it so.” Eating that meal transported Anton Ego to his childhood memories. Many people do associate foods with their families, their cultures, their travels and life experiences. McDonald’s might not have qualified as “good stuff”, but for me, it was the fun of going there after a day at the beach with my family and my dad singing and making us laugh in the car. My favorite restaurant in New York City, Joe Allen, is beloved because I often went there with my mom, aunt Ellie and grandma before the theater. Baking is a way that I feel very connected to my grandma, since she taught me the recipes that were originally her mother’s. I might not be a fabulous cook, but Ben appreciated how much I loved cooking for him, and it was a joyful and loving part of our relationship to shop and spend the evenings together. I never really cooked until I met Ben, so he rightfully claimed credit for my acquired skills. With ALS, food took on a different meaning. It was about Ben’s nutrition, maintaining weight and staying safe. Even at our happy place, Walt Disney World, Ben was always terribly self-conscious and nervous that he would have a choking incident. Fortunately, we only had one small incident and it was brief and unnoticed by others. Ultimately, food represented more loss.
I think that Remy’s most profound statement is, “the only thing predictable about life is its unpredictability.” No one could have predicted that Ben would have to battle ALS. We could never predict the many ways that our lives would have to change and their emotional toll. After Ben got his feeding tube and tracheostomy, one of the things Ben said he truly missed was food. In fact, one of the very kind nurses put a little bit of soda on a mouth swab so he could at least savor the flavor. After I lost Ben, I did not expect that a mundane chore like grocery shopping alone would be a painful experience. It was stressful to walk through Trader Joe’s and see the ice cream I bought for Ben’s milkshakes, and the gravy that I bought in huge quantities so that I always had it on hand for purees. I did not cook for at least a year, until a friend of mine had surgery and expressed a desire for a home-cooked meal. As I prepared what was one of Ben’s favorite meals, I was overwhelmed by the fragrances that Ben always loved. It has become easier as I am more able to focus on the good memories and I am more accustomed to doing things alone.
Now, when I enjoy a meal, I find myself hoping Ben is somewhere savoring all his favorite foods!