A quick synopsis of the back story: Minnow is intolerant of dairy, soy, and corn, and since I am breast feeding her, I've been on a three month elimination diet. Because of Minnow's intolerances, about 99% of prepared and restaurant foods are out. The full back story is here.
My experiences on an elimination diet have made me much more aware of what life must be like with a disability. This might sound odd at first, but bear with me for a second. I walk into a grocery store or a restaurant, and I can't participate in (i.e., eat) most of the offerings. I have to carefully scan the list of ingredients to see if it's safe. Sometimes despite my best efforts I fail, like the night I ordered a baked potato without cheese, sour cream or butter and sent my salad back because it contained cheese, yet my steak arrived swimming in melted butter. Things that other people take for granted, like being able to buy something to eat in a vending machine or airport, I can't do. I'd imagine that these experiences are distantly akin to the wheel-chair user who discovers that there is no ramp on an old building or the blind person trying to use an elevator without Braille. More probably, my experiences are closer to that of someone with a hidden disability, dyslexia or autism, say, who appears to be "normal," yet on the inside is struggling to keep up with the world around him.
I'm fine at home where we've got a pantry and fridge full of food I can eat. I've learned what snacks to keep on hand (raisins) and which cereals I can eat for breakfast (with rice milk). But I get frustrated at grocery stores, because I see people piling food into their carts without reading labels and I have to walk past whole aisles and counters where I can't eat a single thing. It's a harsh reminder that for 99% of the American populace, large categories of food aren't off-limits. In the same way, I'd imagine that disabled people would be apt to feel somewhat uncomfortable when in situations that remind them of the things they can't do.
But my tribulations are trivial compared to those of people with disabilities. First of all, my limitations are temporary. Minnow will probably grow out of her intolerances, and I won't be breast-feeding forever, anyway. Second, being on a strict diet has in no way impaired my ability to do my job or participate in other aspects of everyday life (except eating, of course). Third, no one is avoiding my gaze or feeling uncomfortable around me because I'm eating a salad with no dressing. I don't have to deal with other people's reactions to my situation, unless I point it out to them. Most of my lunch mates don't even notice my weird meals.
In some ways, I'm glad for this experience, because I think it has made more sensitive to disabled people around me. I think I am already more sympathetic in dealing with students and others with hidden disabilities.
I'd be interested to hear from readers on this one. Is there any validity in comparing my experiences of those of a disabled person? Am I using the wrong language to talk about things? Am I way out of line? (I promise not to be offended.)
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My son was on a gluten-free, casein-free diet for a little over a year. It sure was an interesting time. We went cold-turkey from one day to the next. We even got new cutlery, pots and pans, the works. I stopped breastfeeding him at 15 months (in retrospect, that was a mistake), and I prepared every single meal myself. We eventually gradually started adding dairy and gluten back into his diet, until he now pretty much eats anything. I didn't think it was a big deal, except when we were at a party or a restaurant, a very rare occurrence anyway. And nobody ever commented, and we never felt ill at ease.
Now that he is growing older, and his disabilities make him stand out more from his peers than before, it sometimes is just a little weird. In fact, this is inspiration for a post for me! Don't worry about using the wrong language. Most people with disabilities won't be offended. They are used to "normal" people around doing things they can't do. Part of life.
I'm sorry - I'm still stuck on the fact that your steak came swimming in melted butter. Did the chef feel that there wasn't enough fat in the steak already that he needed to add more? Yuck!
My daughter will break out in huge hives if she is exposed to red dye in either food or hair and skincare products. The incident that clinched the diagnosis was a barbecue at which she drank a nice, tall, cool glass of red koolaid. Mmmm. Emergency room visit and shot of epinephrin followed. Anyway, we have eliminated red dye from our household, and she has never had another attack of hives. But it is amazing how many products contain the stuff! My daughter's diet is nowhere near as restricted as Minnow's, but even so a great deal of vigilance is necessary. Oh, yeah, she's lactose intolerant, too! (This is not uncommon among Amerindians.)
@ Natalie: Butter is an old chefs' trick to make lean (cheaper) meat taste more succulent.
@ScienceWoman - Re: salad dressings. Do you not care for juust oil and vinegar on a salad? Many restaurants today do provide pure olive oil, and a quick check can verify this.
Quick and easy vinaigrette for home use:
1 tbsp vinegar of your choice (or lemon juice)
1 tbsp water
4-5 tbsp good olive oil
1 tsp Dijon mustard
salt and pepper to taste
fresh herbs or garlic may also be added, about 1/2 - 1 tsp chopped
Whisk the vinegar, water, mustard, salt and pepper together briefly, then gradually whisk in the oil (or do the whole thing in a standard 1/2 pint Mason jar, which will fit many blender blade holders). Besides adding flavor, the mustard also acts as an emulsifying agent. Will keep, refrigerated, for up to a week.
I've sat on commenting about this all day, because I really am not sure how to phrase what I felt reading your post. I certainly do NOT mean to come across as belittling anyone, but I was truly shocked to read about a temporary inability to eat common and pre-packaged foods/out at restaurants as a comparison to a disability. Incredibly unfortunate and frustrating, of course, but I have a hard time judging that it is comparable to a disability. With certain medications I am on, I too find myself very limited in what I can eat (I also had been on a no-soy diet for quite a while, and I do not eat meat so 90% of my regular diet was off limits and there was nothing I could use to replace it), but it is not a life-altering disability.
I don't discuss this on my blog because it's very personal to me and not something I like to share with people I don't know, but I've been in and out of remission with cancer 4 times throughout my life, and I'm only 24. Despite all I have been through -- including 5 months inpatient at a hospital due to complications and working towards a Ph.D. and taking comprehensive exams while on heavy doses of chemotherapy -- I've never once considered myself to be disabled, because I know this is "temporary" and I am still capable of walking around on my own two feet and making it to lab and completing my experiments every day.
My best friend, also 24, has lupus, on top of Chrone's Disease. She dedicates her life as a child life specialist, working with children with long-term illnesses at a well-known children's hospital. Every day when she wakes up, she has decisions to make -- she only has a finite amount of energy and mobility for the day, and each action impacts another. If cooks dinner at night, then she may not have the energy to shower. (I suggest reading the Spoon Theory for a description). THAT is a true disability.
Like I said, I by no means intend to play down what you are going through, because I know how difficult it must be and what a toll it must take on your everyday life, but instead of looking at it as a harsh reminder that 99% of Americans can eat whatever they want without reading labels and you are stuck in a bad position, perhaps you should instead be reminded of how incredibly lucky you are that you have accomplished so much with your family and career, and with that in mind, not being able to go out to dinner or eat out of the vending machines is really quite insignificant to the big picture.
Julie - Your comment is exactly the perspective I was looking for when I asked for comments. In re-reading my post, I didn't emphasize enough that I don't think I am disabled because I can't eat anything I want. What I was trying to get across is that for someone like me who is healthy and able-bodied, maybe an experience like this can give a little insight into what it might be like to be less fortunate. I agree that sacrificing ice cream and popcorn are absolutely 100% trivial compared to what some people have to deal with everyday for the rest of their lives. I think that we who are blessed with good health really don't have any idea what we take for granted. This was just my attempt to put things in a broader perspective.
Disgruntled Julie, to put what I'm about to say more succinctly and crassly, STFU.
You wrote:
"I was truly shocked to read about a temporary inability to eat common and pre-packaged foods/out at restaurants as a comparison to a disability."
Let's read the sentence from the original post again:
"My experiences on an elimination diet have made me much more aware of what life must be like with a disability."
Clearly, ScienceWoman is in no way belittling those with disabilities, nor is she asking for a pissing contest: Your post boils down to "You call that disabled? This other disability is so much worse".
As someone with Crohn's disease, I'll happily tell you that dietary limitations are one of the hardest adjustments to life with this chronic and incurable illness. Is it as bad as having your legs amputated or eyeballs ripped out with a rusty spoon? Probably not. That doesn't change the face that it makes life difficult and unpleasant in a variety of ways.
Frankly, I appreciate that someone like ScienceWoman has taken the time to write about her experiences and has given all her readers something to think about. There are so many things that we take for granted until they're gone.
Best of luck to you and Minnow, ScienceWoman.
Chris-
I believe ScienceWoman asked for opinions, and I gave her mine. To "put what I'm about to say more succinctly and crassly", I don't think it's your position to tell me to STFU. Everyone is allowed to disagree, but when I'm responding to someone's request for opinions, it's not your place to swear at me.
My point was basically what I stated at the end -- when live gives us hard times, use them realize what amazing aspects you do have in life and focus on those, rather then dwell on the tough parts. Yes, it sucks. It sucks that you have Crohn's disease and that I've had cancer four times over. It sucks for ScienceWoman that she has all these dietary limitations.. but she also has a wonderful, beautiful daughter, and while frustrating, all those sacrifices are nothing in comparison to the joy she must have from finally having a child, and it is much more important to focus on that rather than the temporary problems she faces in daily eating.
But, you know, thanks for telling me to shut the **** up. I always appreciate individuals who are able to calmly and rationally express their opinions in a mature fashion, rather than resorting to name calling and swearing.
I apologize - I missed the call for comments at the end of Sciencewoman's post. That changes your post from unsolicited to solicited criticism and makes a lot of difference.
I still think that your take is wrong here, though. Disabilities can take a variety of forms. It's admirable that you don't think of your cancer as a disability, but I don't think that's any reason to knock people who do.
I have been on a gluten free diet since April, and a gluten free casein free diet since May -- until the last few days, where I've started eating a little dairy again. I will be gluten intolerant and not eating gluten forever.
Whatever the case and however you frame it, there is something difficult and frustrating and eye-opening about not being able to eat what everyone else eats. I just don't bother walking down the middle aisles any more and I have to march past what used to be my favorite one: the row of dairy along the back of the store. Oh, the yogurt and pudding and milk and smoothies! Le sigh. And going to departmental events, or buying snacks for my students, or going out to dinner... it's impossible. And what is difficult also, is getting a server to understand the importance of the situation. People with gluten intolerance often miscarry if they eat gluten. As a pregnant lady I'm not so keen on seeing whether my immune response to gluten will trigger a miscarriage in me.
Just as a heads up -- casein (the protein from cow and sheep dairy) stays in your system a long time. I've heard people suggest eight to ten months off before trying to reincorporate it. I spent about six months off dairy before I couldn't take it any more, and now I have about one serving every other day. I don't intend to ever work up to more than a serving a day. But the good thing is you can give goat's milk and goat's cheese a try before resuming the rest of dairy, because it has almost undetectable levels of casein. It might be a low enough level that Minnow can handle it.
My girlfriend is Vegan, which is an elective intolerance, one might say. Earlier this year we travelled around North America and were struck by the differences in availability of vegan food. While NYC and LA were havens where we could get any kind of weird stuff with nothing in it whenever we wanted, Memphis was almost impossible and we spent a great deal of our time in a trek from restaurant to restaurant looking for the one thing on the menu without bacon or cheese on it (which turned out on one occasion to be a fried banana and peanut butter sandwich - God Bless Elvis!)
I didn't at the time think about it in terms of disability, but I can see the merit in using that as an example. Of course it's not directly comparable - for a start as I said her diet is by choice not by necessity (although she's sensitive to dairy if it gets snuck into food in excessive quantities). But the basic experience is one of frustration as the vast majority of options are closed to you, which seems to be at least qualitatively similar to, say, not being able to access the myriad options of reading material available to people because of a visual impairment or dyslexia.
I would also say that people with severe intolerances to a range of foods do, actually, have a disability. It was hard enough avoiding meat and dairy in our travels, if we'd had to avoid corn and soy as well I honestly don't know if our trip would have been possible. Boo hoo, so what, you say, but it's these little things that make something a disability - some people have to pick hotels for their vacations with wheelchair ramps, some people can't take vacations at all because it's next to impossible to eat at restaurants without taking a trip to the emergency room. We don't realise how much of a freedom it is to be able to pop into a roadside diner on the way somewhere, or to eat at the airport or at a restaurant in the hotel until all of a sudden we can't do these things. When you think that Americans put corn and soy in everything, suddenly intolerances to these things put significant constraints on where we can eat and thus where we can go. It's not paraplegia, but it's nothing to be glossed over, either.
I could also relate. I was diagnosed celiac (gluten allergy) earlier this year and it's been a rough adjustment. It turns out I'm incredibly sensitive to gluten and have had a couple bouts of severe illness after accidentally ingesting gluten. I definitely consider it a disability of sorts--it certainly limits the kinds of jobs I could look for for logistical reasons (no field work, communal food, or being too far from a bathroom if I get sick) and also general health (I feel far, far better than when I was eating gluten, but if I ingest it accidentally I'm profoundly sick for several weeks and suffer a lot of fatigue). I'm not complaining--most days I'm just *thrilled* to have a diagnosis and be feeling better, but it does limit my options. I have the sense of a process of grief as well--for foods that I won't eat again, and for being able to freely and joyfully take part in meals that others have prepared for me. Again, not insurmountable, but a real adjusment that I need to respect, emotionally, and not pretend it's not happening.
I also had a 'temporary disability' experience after having knee surgery last year and being on crutches for a month. I am an American living in Switzerland and I'm pretty shocked at how un-accessible things are. Multiple doors to get to a toilet (and with incredibly tight springs--the doors are so 'heavy' I can barely open them with two hands--try it with no hands and one leg!), no ramps, and just very little respect for someone with a disability (for example, no one would give me a seat on a tram unless I asked, and I routinely see people, usually elderly, *fall to the ground* on the trams and no one does anything. People also bump into me on the sidewalk or hit my giant healing wound with their sharp shopping bags because they don't pay attention). It's also made me very grateful for how healthy I am for the most part.
I think, as others have said, that its often the little things that add up when a person has a disability that can be so frustrating. It reminds me of the subtle discrimination we face as women in scientists--small, innocuous remarks that on their own don't mean much but add up to a climate that is just less welcoming. The whole is more than the sum of its parts in these cases.
I don't have any insightful comments to add - just a tip. My roomate and I were vegans for a couple of years while livingn in New Orleans (not a vegan friendly environment - we took to telling people we were from Seattle to change their looks of shocked disbelief to condescending nods of understanding!) What we found helpful in a resteraunt was to tell the server up front that we were difficult customers because of our diet restrictions but that we tipped really well because of it. That almost always turned the servers attitude to one of helpfulness and even humor and made ourlives MUCH easier.
As a person with a physical disability, and knowing a couple of people who have severe dietary restrictions (gluten, wheat, milk protein, ginger, salmon, onions are the only ones I am aware of), I agree with you. As a matter of fact, I think that my acquaintances' lives are far more restricted than mine.
I can go to any restaurant in town, and eat anything that looks good. They can't. I can eat anything I see at a party. They need to bring their own food. I don't have to bring a suitcase of food along when I travel - they do.
I can do anything I want to, although I may need a little help. They get sick if they unexpectedly eat something on their no list - which keeps expanding!
I feel I am lucky to have a physical disability instead of food intolerances!
after being on an elimination diet for over 10 months now, there have been many times when I get frustrated with our culture and our food offerings. I don't really think of it as a disability, but I often think of how lucky we (ecobaby and I) are that we are not dealing with life threatening allergies (at least not that I know of yet). If one of us eats something that is contaminated, then poor babe gets really sick and we are all miserable for a few days. But I can't imagine how scary it would be if I knew that ingestion of the wrong food would result in the death of my sweet baby. I have read numerous stories by parents of kids who have been rushed to the hospital after eating contaminated foods. Someone recently lost their son after he had a sports drink that unknowingly contained whey.
It is frustrating and depressing to join my lab group when they go out to eat, or attend a potluck, birthday party, or any other event that involves food. I often eat ahead of time and just tell people I'm not hungry. Sometimes I tell them why I'm not eating, but sometimes I don't feel like dealing with it. when I travel and HAVE to eat out, I tell them that *I* have allergies, and usually the server is pretty responsive to that. I have called places ahead of time to check and see what items I can eat and sometimes I order a burger with no bun, but bring my own "safe" bread. It has really opened up my eyes to a whole new way of eating and living. I don't think I will ever consume the same again.
I think most people don't consider food allergies and intolerances a disability since it doesn't "look like anything is wrong." I can't tell you how many times we get comments on what a happy, healthy and bright child I have. she is quite amazing, but she is a whole different person when she is exposed to the wrong foods. there were days when she just couldn't stop vomiting and we were both crying the entire time. After a bad reaction she can regress developmentally and loose new skills. It is really amazing to see how different she can be. So when people comment on how healthy and happy she is I want to explode and tell them how hard it is and how much work it is to keep her healthy and happy, but I usually just accept the compliment and say nothing more.
after writing all this, I have changed my mind. Food allergies and intolerances are a disability in my mind. we life in fear every day and can not live as easily as we did before. It is a hidden disability though that others can only see after it's too late.
...who the heck puts butter on steak? That's rather strange.
Add me too! My second child has had severe gas and stomach upset from dairy and soy. And as you've said -- when we're home it's fine and no problem, but as much as we hate to admit it, we do a LOT of socializing over food in our lives (both as kids and adults) and it can be hard and you feel left out, somehow.
I ache for #2 when we go to a birthday party (he's 4 now) and he can't have ice cream with his cake like the other kids (his intollerence is now mild so he can have dairy in things, but not 'straight up'). The only thing that helps is that my stomach is the same way, so we're in this together!