Michael and I decided to share something that has been on our minds and going on in our lives.
Earlier this week, I begged Michael to embrace a soft food diet. We’ve been building to this decision for a long time, really, and I think we both feel that it was more or less long over due.
Michael has dysphagia, and has since long before I met him, if not his whole life. This means that he has difficulty swallowing. In Michael’s case, it is common for his esophagus to spasm around a piece of food, such that it stays lodged in his throat, causing his face and sometimes his entire body to intermittently spasm with the increasing tension. These episodes sometimes last a few minutes, other times for a few hours.
For most of his life, Michael’s philosophy has been to not let CP limit his activities. This approach has served him well, helping him relish his time as a karate white-through-black belt student in his childhood, as a math and economics major, as a law student, as an attorney, as a racquetball player, as a biker, and in so many other ways.
It has also been Michael’s approach to food. Instead of telling himself to make his food softer, he tells himself that he should chew more carefully. That he should take smaller bites. That if only he could discipline his mind, his dysphagia wouldn’t be an issue. Sometimes, I’ve had that mindset too. I can’t say how many times I have prompted Michael to chew more slowly, or reacted less than sympathetically when he got food stuck because he was distracted by facebook or something.
We’ve been married for over six years now, and parents for almost five. A while back, I started asking Michael to avoid especially tough foods while eating in front of the kids. I didn’t want Jeffrey and Sam to bear the recurrent stress that Michael might get food stuck. I didn’t want them to see him coughing up and throwing up, which can often happen, or to see the spasms in his body and face that happens when food gets stuck.
Watching Michael have food stuck in his esophagus feels like watching a seizure. It feels very real and alarming. It is a crisis every time.
I’ve asked Michael to go on soft food diets before, when he gets stuck over and over again, multiple times a day for days in a row. We went on a liquid diet when he was taking the bar exam and the stress was making it almost impossible for him to eat any meal without getting stuck. We’ve done similar, though usually less strict diets every once in a while since becoming parents.
But no matter how non-stressed Michael is, food still gets stuck. He still spends his meals coughing up and gagging even when it doesn’t get stuck. I think it’s been happening more often lately, but it’s also possible that it just affects me more deeply. It does affect me more. I feel more stressed about it than I used to. I feel inadequate. I feel like my efforts to make little adjustments to our meals and to encourage Michael to chew in the six years we’ve been married haven’t made any purchase. I don’t want my kids to see Michael get stuck regularly, even mildly, and I don’t want to feel a recurring sense of jeopardy for the father of my children.
On Monday, when I brought this up with Michael, what I really said was “Michael, love. I’m done getting food stuck. I want to make a dysphagia diet part of our life. Permanently.” I was not conveying any sort of ultimatum, and I’m confident he knew that. Rather, I was conveying a sense of desperation, and a statement of critical need.
He said, “Okay. We’re done getting food stuck.”
I said, “I know it’s your experience. I know it’s your body. But it’s my experience too. Every time you get food stuck, I have an experience too, and so does anyone else around, especially the kids.”
He said, “I agree.”
I kept sharing how I felt, and Michael listened.
This week, I’ve made omelets for dinner and soft taco filling in pita bread (by far the toughest food on our new list). I’ve tried blitzing vegetables and rice into a soft, fine pilaf texture in the blender (with little success), and tried steaming-then-frying okra (with better success). In preparation for a day when we might go out more, I have looked into restaurants serving soft meals, including looking through menus of restaurants at the Salt Lake City airport.
But the other night, as I was getting a grocery order ready for pick up today, I felt an overwhelming sense of loss and grief on Michael’s behalf.
Michael is a foodie. He loves to eat good food. We’ve already discussed having occasional compromises in safe spaces, like getting poa de queijo to eat at home, slowly, with soft food on hand as a back-up. But it still hurt, to take Michael’s favorite pre-made sandwiches off the order, to imagine asking Michael to eat his pizza cut up in fine strips with a fork instead of eat it whole from the slice.
When it comes to food, no change is an easy change. Even if it makes life better. Even if it makes someone more healthy, or more safe.
Honestly, I don’t have a good point about all this. Except that something as little as food is actually huge, and that life is complicated, and that, even though Michael has asked me not to call this a sacrifice on his part, I feel that it is a sacrifice, and I feel grateful to Michael for accepting my plea.
I want to make this the best transition it can be, and hopefully make it an upgrade. I want to make a mean mac n cheese and incredible smoothies (and, if you know of any great soft-food recipes, please send them my way!). But the loss is still there. No matter how good this upgrade is, it’ll still be a hard one.
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Alizabeth Worley 