I’ve been reading what is still attributed to be your letter(s), since seeing a blip of one of them appear in my feed a few days ago. What a masterpiece it truly is, the book of Hebrews. It’s wonderful, mostly. But I’m torn, Paul. I’m just torn. First of all, after refreshing myself on the history of your “book,” Hebrews, I am just not convinced that you are actually the author. Nonetheless, henceforth another author has never been named so it is to you that I write. Mostly, though, I’m torn by the implications of this one verse. I’m torn because it’s relative…
At some level, it’s almost ridiculous for me to have issue with being satisfied with what I have. This is true because I have an abundance at my fingertips. But here I sit, unsatisfied with what I have because I simply CAN’T have the abundance. I live in a world where, specifically, food is not out of immediate reach. I also live in a world in which that food a) is so expensive that many who share this world with me are still hungry because they can’t afford it, and b) is so unhealthy they really needn’t eat most of it to begin with. Personally, I find myself in a place where I can neither afford the food nor can I eat the food. It’s a conundrum, isn’t it.
Let me start at what is generally the best place to start, Paul. The beginning. I was recently diagnosed with a disease that prevents me from eating about 80% of the food that I have eaten all my life. Breads, most starches, dairy, and ANY processed food that isn’t specially prepared and extremely overpriced. For the time being, I also can’t eat red meat. That might end up being a long term thing, depending on what my heart decides to do. As it turns out, the whole thing has made me believe there was a much deeper reason that I have always hated food. My body simply doesn’t deal well with food. Alas, as I was saying, I have been diagnosed with a disease that has basically ended my life as I have always known it and started me on a new journey to, at the most basic level, stay alive. It’s called Celiac disease, and IT SUCKS.
You see, Paul, Celiac disease is much more than just an allergy to gluten. In our world now we have this ridiculous fad happening that revolves around a gluten free lifestyle. What happened was that research began to show that gluten was really bad for many of us, at a basic level. Many of us had developed (or always had, as the case may be – gluten stuffed foods haven’t been that big a deal for that long, only since the mid-20th century when processed food became a booming business) an allergy to it. As the research and the noise grew, so did the greed of many companies and individuals who saw an obvious chance to turn “gluten free” into the next fad diet and slap the label on their products and sell it for a ridiculous amount of money. People bought into it, not even fully understanding what the big deal was to begin with.
So, now, here I find myself. Two or so weeks into the initial diagnosis and while I have to admit that I am better for it all the journey has not been an easy one (and will not be, ever). I am not inclined to simply be grateful for what I have, Paul. Why? Well, it’s funny you should ask! Because, as it turns out, I am MORE than prepared to explain that: It’s because of the money, Paul.
Why TF does it need to cost five times as much to eat healthily, and to have a disease? (Here I am tempted to ask you where your Savior is to magically heal me, but never mind that for now.) I’m infuriated. I went onto the internet to search for gluten free foods that I needed in order to help myself create a more balanced Celiac diet (and fulfilling, if I’m being honest), and found that it’s nearly impossible for me to be able to do that. I am not satisfied with that. I am NOT SATISFIED with just raw vegetables and fruits and juices. NO! No I am not. I am not a vegan, Paul. I am not a even a vegeatrian. And, the truth is, I don’t want to be. Perhaps someday I will find myself in a different frame of mind about the whole thing but for now? I am not satisfied with this necessity, because it shouldn’t BE a necessity in the world I live in. I shouldn’t have to settle, and neither should anyone else, because of a disease. Not in this country. Not in this world that we live in.
Turns out that I am required to spend upward of $20 for four pounds of flour, Paul. WTF is that? It’s rice. It’s not like you can’t buy rice by the truckload full for $20, yet RICE FLOUR is made of gold? It’s because of the process of turning the rice into flour, you might ask? Well, I don’t buy that. Not in this already mostly over processed world where you can buy the equivalent of eight million calories in junk food for $20. No.
I have to pay $20 for four pounds of flour, $17.95 for 6 ounces of crackers, $15 for a pound of pasta, why? I’m being punished for my body rejecting the absolute SHIT that society has come to know and love as “food?” That’s what it feels like. It feels like I’m (we’re) being punished for having a body that rejects non-food, and to be perfectly honest, Paul, I think that’s BS. It literally makes me feel like crying. People’s health shouldn’t be a monopoly, ever, but especially not in a place in the world where healthy foods are very easy to come by. I feel for people who live in countries where there isn’t much food, not to mention those with no food at all… But, at the same time? I don’t live there.
No, I don’t live there, Paul. I LIVE HERE. I live in the land of plenty. Of milk and honey, if you will. And YES I am grateful for that and in so many ways it IS enough. It IS a blessing. But in this situation? Not so much. I don’t live in those places in the world where food is limited if not absent. I don’t live there. I’m blessed to live HERE. Most of us on the Internet are blessed to live “here,” wherever that “here” is, and I don’t think that we should have to choose between being able to pay our bills and being able to eat food that doesn’t make us sick. Especially considering the state of healtchare in my country at the moment. That’s a whole other issue, I won’t digress.
The point is that from that aspect, we are no better than the people who are lacking nutrition in third world countries. That’s what Celiac is: the body’s inability to absorb nutrition, in a nutshell. In that way, even if we are eating foods in this world, our bodies are reacting to the food in much the same way that starving people from another world would have their bodies react to NOT having food, because basically? Our bodies are still starving, no matter what we eat. Celiac disease means that not only is there an allergy to gluten taking place, but the body’s response to that allergy is so severe that the organs become damaged, and then they are not able to properly digest food or absorb vitamins, minerals and other nutrients from that food. Therefore? Starving…
It might sound a bit like an exaggeration but it’s not. Not in my experience, anyway. All I can do this morning is sit here near tears and assess my food choices and my bank account versus my bills. I am not embarking on the gluten free diet because of the fad or because it’s what the cool kids or the health nuts are doing. I am doing this because I have to. I’m doing this because if I want to stay alive for any length of time without further, more serious health issues (and possible death – look up the six ways Celiac can kill you, I’m already on my way with an enlarged heart and an under-functioning liver) I have to eat this food.
I DO expect to pay a little more for gluten free foods because I know that the demand is not high compared to the demand for McDonald’s, Oreos, and our favorite pizza and beer. I expect to pay a LITTLE more – not double, or triple, or even quadruple the cost of “regular food.” It’s actually terrifying to me, because I can’t afford to eat the Gucci of food, and I don’t want my son to have to eat crap just because that’s what we can afford.
A conversation was started when I initially posted these thoughts on Instagram, and this is what other people had to say:
“It sucks! I looked into it to see if it would help my stomach issues but there’s no way I could afford it. It’s hard to afford healthy as it is, and then throw some other issues on top of it…damn near impossible.” @curlyredhairednewfie
“Try the low carb grocery. Still expensive, but maybe not that bad?” @trashpandachic
“It is disgusting how the food system has been manipulated. We gotta get back to real food or it will end us.” @relentlesspeace
“You make a good point. If you like to cook there are interesting cookbooks like The Wheatbelly Cookbook which uses alternative flours like almond and coconut. Absolutely much more expensive, no doubt. I try to eat gluten free not because I’m celiac or it’s a fad. I am 100% better physically (no digestive issues as opposed to tons eating wheat), emotionally (it leaves me angry and lacking energy), and it acts like an appetite stimulant…one bite and I just want to eat everything in sight!!! It’s a tough road but what a difference it may make. Good luck my friend.” @captain_jack_official
“You’re right about costs. It’s crazy. Poison over processed food costs much less than healthy food. Weirdness.” @jrcline
Now that I’ve sampled some comments, let me sample for you some of my responses:
It’s not overdramatic and psychosomatic of me (as some have accused me since I started on this journey, thanks fam!) to admit right here and now that I don’t expect to live beyond 50-ish, if that, if I don’t make this change. So, I don’t know what to do. Celiac is linked to gall bladder and liver problems, which I already have (my liver is currently at 70-something percent, also due to previous lifestyle with medications and alcohol and poor diet, no doubt). Add to that my enlarged heart and arrhythmia and even with no smoking or alcohol I’m a walking time bomb for falling over dead if I don’t make this change. The mental health stuff that is caused by the disease is just icing on the cake.
I’ve been living on fruit/veg/juicing for days and I can’t do that forever. I had to, for the initial cleanse, but now it’s time to eat and I can’t live on fruit/veg/dried beans/etc. alone forever (not to mention how expensive fresh produce is compared to it’s junk food or frozen, preserved counterparts). I am not supposed to have any dairy either. It’s a cross reaction thing…plus I’m allergic to milk to begin with (and NOW we know why!). Soy and nut milk/products are as outrageous cost-wise as other gluten free products. It’s ridiculous. I’m ranting, I know. But you know what? I’m terrified of dropping dead and breaking my son’s heart. That’s where my mind is this morning.
The low-carb thing is a great idea, but the problem with that is that there can be NO cross contamination with gluten products. Low carb doesn’t always mean gluten free. It’s about flavorings, fillers, and other ingredients (namely wheat flours but there are so many others). A product can claim to be gluten free because it doesn’t use wheat flour, for instance, but still contain gluten in the flavorings, fillers, and other additives. It’s very hard to trust even general gluten free labels because of cross contamination and the use of the labels to further the fad and to make money. It should be a crime.
Even a single loaf of low carb, gluten free bread rings in at nearly $6, and that’s for a loaf about HALF the size of a full, normal loaf of everyday, $2-a-loaf bread. I would happily pay the $6, without complaint, if the loaf was the same size and amount as the death loaf. Do you see what I am saying, Paul? I will NOT just be content with what I have. Why? Because I can’t freaking afford to be!
The thing that gets me the most since being diagnosed with Celiac is that there are SO many people who actually believe, regardless of the lack of research they’ve done or knowledge they have, that even gluten sensitivity is a crock and nothing more than the equivalent of heartburn when you’re “sensitive” to spicy foods (which is ALSO far more detrimental to the body and health than people seem to realize). If your body is trying to tell you that you shouldn’t eat certain foods by reacting negatively when you do eat them, maybe it’s time to LISTEN TO IT. It’s a real thing. There are people out there who are truly, miserably, and dangerously sick because of these “foods.” Health should not be a fad, and it shouldn’t cost the way it does.
Why does ANY healthy lifestyle have to be considered a fad, or be demeaned, or made fun of? Regardless of whether a person MUST eat/live that way because of an illness, or because they simply choose to because they feel better and thus live a happier life than they would if they were eating a “worse” diet, it shouldn’t be a thing that is so blatantly criticized or demeaned. I know it’s because a not-as-healthy diet is the norm in our world, I totally get that. I don’t think ANYONE should be demeaned , but the ones who should be criticized are the ones who have eaten so much processed, ridiculous non-food labeled as food that they are now chronically ill, and yet CONTINUE to eat that food, and drive up healthcare costs and do little if anything to educate anyone else about healthier alternatives. But why do so many people choose to do that? Because financially, they don’t really have a choice. So maybe they shouldn’t be criticized at all! No! They shouldn’t.
The problem is that medicine has become the lifestyle that enables food rather than food being the lifestyle that prevents medicine. Our society is so warped on that, and all so some moguls can put money in their pockets. Does that make sense? No, no it doesn’t, Paul. But that’s the world we live in. It disgusts me, especially finding myself with a chronic illness that HAS NO TREATMENT except diet. It’s funny how the medical system doesn’t really care or acknowledge it at all, really, in my experience with doctors regarding my diagnosis (except my GP, who is AMAZING). In general, they don’t care because my illness doesn’t make them any money. They can’t shove pills at me, or treatments, or anything that benefits their wallets, so they don’t have time to discuss it or help me.
That’s fine. That’s just fine. I don’t WANT their help. I’ve spoken to a nutritionist and I’m looking for a GOOD, reliable naturopath in my area (coming up empty, as yet), and even though that’s not something my insurance covers (not that it covers much as far as doctors are concerned, either, at this point) I’d rather see them because THEY CARE and they’re HELPING ME. It’s just figuring out how to pay for it. That’s what got me to this point this morning.
So, you see, Paul, I can’t just be happy with what I have. I can’t just be content. Not only from the aspect of my illness, but in life in general, I tend to live in such a way that I am always striving for more and for better, for myself and for my family and my son and for the world around me in general. I’m not a person who feels very good about just sitting back and being complacent. I just don’t have it in me. That doesn’t mean I don’t see your point – I do. I totes do, as we say these days. We should ALWAYS be grateful for what we have, and in most cases we should be satisfied with what we have and not become greedy or take anything to excess. But that’s not the point I’m focused on here today. I’m focused on staying alive, and I’m finding it really rather difficult to do so these days…
Thanks for listening, Paul, even if you are an imaginary character to whom writing has helped me to better and more comically express my thoughts about my disease and my only option for treatment. I truly do appreciate it. Have a lovely week…