Please, Don’t Watch Me Eat
Growing up, I was honestly never really insecure about anything. I was very confident, and for most of my adult life, even when I had developed a few insecurities, I was always very sure of myself. My body image, how I got along with others, how good I was at the things I did, and how I imagined people thought of me – I felt good about myself. Years later, I can say that has changed. I mean, for the most part, I am still pretty secure in many of those things, but I have definitely developed a few insecurities since Multiple Sclerosis (MS) crash landed into my life that I would have otherwise never even thought to be possibilities. Today, I want to talk about one of them. This may sound really dumb if you have never experienced this yourself, but I have become pretty insecure about how I eat. I don’t mean what I eat, how much or how little I eat, or even what kinds of food I eat. No, I mean how I physically eat. How I physically get food from my plate to my mouth.
First major relapse
In 2012, I experienced my first major relapse. It put me in the ER in excruciating pain, and after they shot me up with some IV Dilaudid, I was transferred to an inpatient physical rehabilitation center that was part of the hospital I had arrived at. Very quickly my body fell apart, but over the course of about 6 weeks of daily therapy from physical therapists, occupational therapists, a hand specialist, and a speech therapist (who I was seeing for swallowing issues) I slowly began to recover.
First time I had difficulty eating
I bring this up because it was the first instance of, among many other things, me having difficulty eating. I could barely make a fist, so for a while, I could not feed myself because I couldn't hold my eating utensils. I also was having a hard time swallowing without choking, so I was temporarily put on a “no thins” diet which meant everything, even water, had to be mixed with this powder stuff that made everything really thick. This, however, is not when I started experiencing feelings of insecurity; there was far too much going on for me to be concerned with anything like that, but looking back, I would say that this is when the seed of my current insecurity regarding eating was planted because while my hands are immensely better than they were in 2012, they are definitely not the same.
Not what they once were
For one, my fine motor skills and dexterity are not as great as they once were. Granted, I am well aware that there are many people with MS who have it 100 times worse than I do, but things that used to be really easy for me are now very difficult (obviously), and so I am just trying to express some of my frustration. Anyway, I also have a lot of coordination issues that mostly occur when I am not totally focused on what I am doing. Ask me to touch the tip of my nose with my finger while my eyes are closed and I can do it no problem. But I can’t tell you how many times I have reached for something that was right in front of me but completely missed it and instead grabbed a fist full of air despite the fact that I was looking directly at whatever it was that I had intended to grab. In addition to all of this, I sometimes get pretty bad intention tremors, so when I try to keep my hand steady while using a spoon to scoop up soup (for example), my hand will start shaking. All of this makes the act of using a utensil to eat food a bit of a challenge…
It’s embarrassing to be eating somewhere nice with friends or family, or even just eating at a friend’s house, because first of all, getting food like rice onto my fork in the first place is challenging enough. I often feel like I am hopelessly struggling to scoop up food when instead I am just pushing it around and off my plate, making a mess. Once it is actually on my fork, the next challenge is raising it from my plate to my mouth without my hand shaking the food everywhere. Even when it doesn’t look like my hand is shaking, there is always a subtle tremble that makes it hard to keep anything not speared by my fork from rolling off and back onto my plate.
Forget about wearing white
Which reminds me, anyone who knows me might have noticed that I never wear white shirts… well, this is why. A lot of my food rolls off my fork and onto my shirt, and if I am wearing white? Forget about trying to get that stain removed! This is where I start getting really frustrated. I’m sitting here making a mess because just before I am about to shovel my food into my mouth, it rolls off my fork and onto the table or my clothes. I can be eating square cuts of chicken but it still feels like I am trying to scoop up a perfectly round grape with my fork and balance it while raising it up from my plate.
Growing up, I remember eating really fast and making a mess because I knew my Nintendo 64 was waiting for me, and my Dad would jokingly say, “Careful, you might get some food in your mouth.” As I write this, I’m 28 years old, and now when I am struggling to eat but instead just making a mess, that is all I can hear myself saying. "Careful Matt, you might get some food in your mouth." I don’t know how to express how frustrating this is. There have been nights where I struggled with my dinner so much and ended up so stressed out over simply trying to get food into my mouth, that I ended up just not eating and instead just going to bed because in my head all I wanted to do was grab my plate and toss it across the room. So, depending on what’s being served tonight, please, don’t watch me eat.
Does your employer provide workplace accommodations due to your MS?