Life, for better or for worse, is about food.
We have to feed our bodies for them to keep going. We have to eat every day, usually multiple times a day. Food plays an integral part in religions and cultures, and that’s what I want to discuss in this post.
One of my recently-found Gastroparesis friends, Crystal, did a video blog post on Friday about accepting Gastroparesis. She addressed one of the harder aspects of any illness, and that is psychologically/mentally accepting that this is, in fact, (my) life. (It’s really good. You should go watch it. Seriously.)
On her Facebook post, I mentioned that even though I’ve had some practice with acceptance since being diagnosed with Celiac over two years ago, Gastroparesis has been the hardest of my three (including food allergies) to accept, and that I’m not sure why.
To divert from the Gastroparesis path for a moment, I realized on Sunday that I have not accepted all aspects of having Celiac Disease! You see, I’m a member of The Church of Jesus Christ of Latter-day Saints. As such, I take the Sacrament. The first (and most relevant to this post) part of the Sacrament is that pieces of bread, after being blessed, are passed through the Congregation. (This is similar to the Communion rite in Catholicism.) Bread + Celiac Disease = big problem. The short(er) version of the story is that I bring my own piece of bread or cracker in a sandwich bag, let the priests know where I’ll be sitting, and let them figure out which tray it should go on so that it can be passed to me. (This picture will give you a more visual idea of what I’m talking about. There are enough of these trays to have close to the right amount for the congregation. The deacons then pass them throughout the congregation.) I put it in the plastic bag to avoid cross-contamination from the trays.
This is incredibly awkward for me. Imagine this nice little tray with a big ol’ sandwich baggie with a piece of bread that looks completely different and is probably a lot bigger than the rest of the pieces. (This last Sunday, I took some biscuit coffeecake I made. Yes, it was awesome.) It stands out. Then you have moms and dads trying to keep their little kids from taking the ‘cookie’ or ‘cracker’ because it looks tastier than just the bread. If I don’t get there in time to give the priests the bread, or if someone does take my bread, or if the poor deacons get confused, then I just skip the bread and take the water. Would I rather just pretend that I don’t have Celiac? Yes. Even though what I bring is tastier, would I rather just eat the bread everyone else does? Yes. Will I still get sick if I eat just that one piece of bread? Yes. I realized that I need to accept that I will have Celiac Disease the rest of my life, and this is how it’s going to be.
Now, back to Gastroparesis. Part of the reason it’s a bigger deal than the other two is that it’s harder to manage. Cut out gluten and food allergies, and voila! I’m supposed to feel better. Gastroparesis is an every day, every meal, always-trying-to-be-aware-of-how-I-feel kind of thing. One day I can eat something, and the next day I can’t. If I eat one type of thing too often, my stomach is unhappy, and my nutrients suffer. It’s really easy to eat too much fiber, too much fat, too much food at a time, or just eat too late.
The other part is that it’s what people, generally, are the least familiar with. Food allergies have been around and pretty well-known for quite some time. Celiac, just in the couple of years since my diagnosis, has had an information explosion. LOTS of people have heard about Celiac that hadn’t before, and I run into more and more people who don’t need me to explain it to them. If people haven’t heard of Celiac, they almost certainly have seen gluten-free items at their grocery store and recognize that phrase.
This is where social situations really get sticky. It’s relatively easy now to list off the foods I can’t eat without harming myself. Well-meaning people who care about me will go to great lengths to try to eat something that “I can have.” What I often don’t feel like explaining is how I may still not be able to eat it even if it’s gluten & allergy free. If I do have a few bites to be polite and/or taste it, some people get offended that I took such a small amount, since so much of our collective American self-esteem seems to be tied up in food. A lot of people are far too polite to actually bring it up and ask, so it just ends up being awkward all around.
I’ve felt bad about this and wished and wished that I could just “go back to normal,” but life moves in one direction: forward. I’ve felt embarrassed about going to restaurants and ordering a bowl of soup while everyone else eats like the normal people they are. I’ve gotten defensive when people think that I’m just eating this way to “lose weight.”
Then recently, something clicked in my brain — that generally, I feel pretty good. My energy is nowhere near what it used to be, but it’s a whole lot better than it was on May 12, 2009 when I was diagnosed with Celiac Disease. My energy’s better now than it’s been probably in the entire last two years. I still don’t get much better than an 8 on a good day, but hey — that’s pretty good. Along with feeling good is that I’ve lost quite a bit of weight. I’m about where I was before my health tanked. In the last 10 months or so, I’ve lost about 20 pounds. Not because I was trying to, but because I’ve finally figured out (to some degree) what my body needs to be able function the most effectively. When people want to know “my secret,” I smile and tell them that hey — big surprise — when I don’t eat the stuff my body deems harmful, and when I’m taking care of my Gastroparesis (also known as not eating that much), my body remembers how to work!
I’ll end with a few things that I wish everyone knew:
* These are my personal food issues, and I cook and eat this way to take care of my body. This is not the “next great diet.” It kinds of hurts when people think it is, despite how great they think I look (which is flattering).
* If I’m at an event someone’s hosting or attending, chances are good that I just wanted to be there. That, in and of itself, is a compliment. Please don’t base how I feel about anyone in the room on what and/or how much of the food I eat. Not related. At all.
* I do not delight in being “that person” at restaurants. (Think Meg Ryan’s character in When Harry Met Sally.) It’s not because I have control issues (even though I do). These are medically diagnosed issues, not me wanting to just be high-maintenance. In fact, I hate being “that person.”
* Gastroparesis does affect my energy a great deal. I wish I could be all things to all people and attend every event, but I just can’t. (As I type, my husband is driving home from a Dominion event, and I would have liked to join him.) It doesn’t mean I don’t like whoever it is; I can only do what I can do. (Does this make me feel really old? You bet it does.)
I went on a walk tonight and realized that my life is pretty darn great in spite of all this. Realize that yours is, too, and look for the stuff that makes you happy. Life is short, ya know?