Parental Grief

There are so many different ways that chronic illness affects our lives. Once, a long time ago, I lived next to a peat bog. It caught fire one summer. Quickly, the raging flames on the surface sunk down through the layers of peat, burning and smoldering for nearly a year. The area was devastated, the smell was terrible, and the mixture of smoke and fog — eventually dubbed by the locals as “bog smog” — created extraordinarily low visibility conditions. Sometimes the hood of your own car would be barely visible, the one time the exaggeration about the thickness of the local sea fog was the factual truth. Many people died on the roads that year.

Chronic illness is smoldering inside of me. It has been for awhile now. It can flare again, and like the firefighters in that town, all I can really do is contain, and watch, and wait. I’ve had to work hard to accept and adapt to being a peat bog … not that, if you asked anyone who knew how clean I keep my bedroom, it should have been that big of a jump.

Perhaps worse than my new status as peat bog fire, though, has been the impact on my nearest and dearest. Sometimes in the heat of the battle it’s easy to forget about the effects that battle has on others. But at other times — like now, working on planning a family vacation — it is painfully obvious the damage the fire has wrought. Even though I’m a graduate student and have long since left the nest – my old room is now a considerably neater guest bedroom – I still enjoy a close relationship with my family. Watching the devastation caused by the pervasive, smelly smog of my chronic illness has been heartrending and frustrating.

I have to live with my status as a student-with-disabilities every day. But I’m several hundred miles from my nearest family member, a couple thousand plus change from my parents. Their interaction with my conditions is limited by distance, which both shelters and hinders them. Instead of seeing all the good and the bad together, they typically get brief, painful news bites at the end of the day or week … trialing this drug or that, developing a new allergy, sick with another infection. If my parents come out to help me through a surgery (which they’ve done, bless them), then they see me at my worst. When I’m back home on vacation, after carefully trying to make sure I’m at peak functionality, with everything work-related cleaned off my plate and nothing to do except relax, it can sometimes seem like I’m doing quite well. That is until, of course, some plan is proposed that I simply cannot do, and my parents are faced with the reality of my conditions again. Slam, the fog descends, leaving everyone blindly feeling their way through the dankness.

Pervasively, slowly, my conditions began to change our family dynamic. I had to come to terms with my illnesses fairly quickly, as it’s my daily life, although in many ways I’m still learning to cope. Insulated by distance and love, my parents are experiencing this journey to peace more slowly. It resembles nothing more than the grieving process. Even though I am not dead, there has still been a loss: the loss of health for a dear daughter. There are stages to the grieving process, modern psychology tells us: denial, anger, bargaining, depression, and acceptance. It’s less of a smooth train ride with planned stops than a spinning, jouncy carnival ride.

Denial and anger go hand in hand, smoke to fire. Tendrils of disbelief rise smudgily to the sky – “no, this can’t be. You’re just too sensitive, is all. It’s not possible.” But if there is no belief that something has happened, there is no chance for healing. And I am simply sick. Bright anger flames spring up. “That doctor is a @*&%!!!!” “You should never have done that, that was stupid!” “The insurance industry is such a … !” Anger flares fast at anything in its path: at doctors, at a condition, at the treatment path that I chose. Anger is not always a particularly rational force. It redirects pain but doesn’t always process it. From my own battles with accepting my illnesses, battles I still fight, I know that anger is bizarrely comforting in its own way… it devours so fully there isn’t room left for anything else. Perhaps that’s why it flames so readily to life.

Bargaining results in odd little promises, both to themselves and to me. “Oh, you’ll be better by then,” is something that slips out, hopefully, frequently. Far more rarely comes a more brazen “well, maybe this (insert situation or gift) will motivate you to get better!” Less concrete, but no less attempts at bargaining, are phrases that start with “if only,” or “maybe if I/you just” – a bargain with the past or the future. I bargain with myself all the time, as a sometimes outwardly-motivated person: “if I just get through this PT session, I will eat a popsicle as a reward!” At least bargaining shows that there is some acceptance that there is something, or some reason, to bargain.

Depression is bog smog at its thickest. It can be an odd blend of both the practical and the emotional. Physically, isolation is a serious consequence. Staying with me when I’m sick can be an incredibly isolating experience.The bog smog cut off our small town from the outside world, and in a similar fashion depression can isolate one emotionally. However, no less isolating is being “that family with the sick kid,” because it is completely possible to feel separate from the world even in crowded places. The cost of illness in dollars and cents can cause feelings of despondency with terrible regularity, every time the mail is delivered and another bill appears in the stack, the crisp white envelopes always belying the yawning black hole of hopelessness that opens with its flap. Dire situations prompt a lot of wondering if there will ever be anything different, if there is ever going to be a way to get out of this. There is a lot of sadness and regret for not trying different approaches or doing more things when I could, even though they couldn’t have known the future. There is a sense of loss for what might have been: pretty sparkly dreams that they and their daughter held dear, the things that they fought so hard to enable her to do, might now be out of reach.

Acceptance seems to only come in fits and starts. It’s doubly difficult because I continue to get new diagnoses and develop symptoms, only to combat them and rise again. It isn’t a fixed situation, this slow burn of chronic illness. Control and containment are occasionally shown to be nothing more than illusions. It can be dangerous, dynamic, and incredibly unpredictable. I don’t know if I’m going to be able to go with them on a day’s excursion, or if I’m going to simply need to sit and rest. The changes mean that just when they have managed to “accept” that I might walk slower, suddenly there comes a day when I struggle to walk at all. A food I can eat one day suddenly causes an allergic reaction the next. Accepting that your child is ill, and that the “old” child is no longer — illness took something away from you, and never gave it back — has to be one of the hardest things to face. And although I am 30, not 3, I am no less my parents’ child.

It took a long time for the peat bog fire to burn out. Over the next decade, the bog regrew. Sometimes it would look the same for months, waiting for the next season of change. But then overnight, with a decent rain and the right conditions, it would suddenly seem neon with bright new growth, electric life. Now trees grow there, and all the animals, including several threatened and endangered species, are back. It takes time to heal. It takes space. It takes a certain kind of resiliency to weather the fire and then come back, and that my parents try at all is a sign of their fortitude. I am proud of them.

To parents, I want you to know that it is all right to grieve. It isn’t shameful. It isn’t wrong. Don’t be afraid to grieve. For those with sickness watching their parents grieve – hang in there. It might not always seem fair, and it might be painful to experience. But they have to change too, even as you are. Grief is a season, though, and it will pass, like any other season. Eventually the burn scars of the bog are just a testament to the strength of the system, a proof of things endured and conquered. So may it be with grief.

 

Fly high. Stay strong.

Titanium Butterfly

10 Things To Say To Someone Who Is Chronically Ill

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  1. It’s great to see you!
  2. You look happy!
  3. Can I help you with anything now/today/tomorrow/this week?
  4. How is school/work/hobby/anything not specifically health-related going?
  5. Let me bring dinner over this week. What do you like?
  6. I’m going to the __________. Anything you need?
  7. Want to hang out this week? I can just come over and color with you, even. And it’s fine if you need to cancel.
  8. Thank you for coming!
  9. How about this crazy weather?
  10. Do you want to hear a funny story?

When faced with someone who is sick, it’s really fantastically hard to know what to say. If it were easy, there wouldn’t be such a booming business in greeting cards! It’s difficult. We get it. And the sicker I get, the more innocent little phrases become inky-black shards, cutting deep and staining. “It’s wonderful to see you today! makes me wince at all the other todays I should have been there for, even though that wasn’t at all what the speaker intended at all.  “Get better soon!” A command that I couldn’t ever hope to obey, no matter how much I desperately wish. “You look like you’re feeling better!” is a perennial favorite of the chronically ill, because we rarely are much improved. Instead, like Cinderella, we’ve become so transformed by clothes and some fairy-godmother-worthy magic with makeup and hair that we aren’t recognizable as “sick” to friends and colleagues. Presuming, of course, that the illness was even visibly recognizable in the first place. “You’re too young for this,” “you are too fat/skinny,” and “you should just try harder and you’ll be fine,” are all quite horrendous enough that there really shouldn’t be anything acceptable about saying those to anyone, anyway.

Instead of the continuing with the list of “don’ts!”, here is a list of “do’s.” Just saying it’s great to see someone can also be guilt-inducing, but there has to be some adaptations and acceptance on my part. I have to accept that I am sensitive, and to bury my guilt over what I can’t change – my illness – until like most things buried, it transforms into fertile ground for the growth of something greater. Telling someone they look happy is just about as bad as “you look like you’re feeling better,” depending on what war your friend is fighting. Someone in the depths of depression can sometimes manage to look happy, just like I sometimes manage to look like I’m feeling better. But I personally have a horrible poker face, so if I look happy, I probably am… and it’s important to recognize that just because someone’s chronically ill doesn’t mean they’re not also going to be happy sometimes and would like to tell you why. I like to hear funny stories, and sometimes genteel conversation about neutral subjects – pets, weather, gardens – is just what I need. Trust me, I don’t like to always be talking about my health. Thanking someone for coming is just good manners, whether or not a person is ill, but this can also be a sort of acknowledgement of the extra effort it might take me to attend an event and how important that means it is (and by extension, who is hosting is) to me. I’d love it if my friends would come over and just play a few rounds of Uno with me when I’m down. I can’t tell you how many times I’ve been rescued by someone asking if I needed anything from a store. Taking someone meals is harder, to be sure, but once again, having someone take the time to handle that, especially on days when I’m really ill or recovering from a procedure, means the world.

I’d never have learned all these phrases unless someone had tried them out one me. Tentatively at first, then with growing confidence, they persisted, and I learned that not all comments sliced like glass. Thank you to all those who dared to care! May your experiments in kindness never fail.

Elimination Diet Spaghetti

DSC_0042I called it “insta-food” on the shopping list. Those things that could be plunked in a microwave and nuked until they exploded, or boiled in a pot. Junk that could be made and devoured in something less than 20 minutes, to be honest. There are always those days when you just need something fast. One insta-food was spaghetti. Comforting, fragrant, hot, and mostly healthy, I could use canned sauce and noodles to make marinara quickly. If I threw in some veggies, I’d be feeling good about my skills in the kitchen because I had successfully washed and sliced mushrooms. 🙂 Add in some sausage that I’d thawed hurriedly under hot water in the sink, and maybe a package of salad, and I’d have something on the table that actually looked like a real meal. The elimination diet makes such insta-food harder… but not impossible!

First, noodles. This was the easiest problem to solve! I went with brown rice noodles from Meijer for the picture above, but I love spaghetti squash too. Other vegetables, like zucchini, can be spiraled into “noodles” as well. Brown rice noodles have about a 35 second window of tasty to gloop, despite what the packaging may promise. I’d recommend sampling often and pulling them off heat right when they’re almost but not quite to where you want them to be cooked. I covered the noodles in sea salt, garlic, and olive oil to keep them from sticking … and because it was oh-so-good to simply steal a few straight from the colander.

Second, sauce. I wanted the “I-can’t-cook!” type, found in a can. It is very difficult to find a canned sauce that doesn’t have soy, corn, wheat, or sugar added. Meijer came through with Classico Riserva pasta sauce. It’s not the cheapest sauce, but at least for the money the taste is fantastic.

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Third, veggies. I added onions, mushrooms, slivered zucchini, and bell pepper. I’m a veggie fan. It also gave me another chance to dust the white powder and pink crystals of life, good ol’ NaCl, over everything… and here perhaps I should mention that I am on the exact opposite of a low-sodium diet. When I cook at home for my salt-sensitive family, I add a little Italian seasoning to the sauteing veggies and crank salt over my plate separately, and it seems to work for them. 🙂

Last, meat. This is perhaps the hardest. It is nearly impossible to find a chicken sausage without pork casing (why?!!?). Sugar is by far the most persistent additive I’ve found, with even Trader Joe’s Italian chicken sausage wiping out on this last hurdle. I can neither confirm not deny the rumors that Whole Foods has an Elimination Diet-friendly sausage, but online chatter seems to indicate this is a regional phenomena. (The fact that Whole Foods nickname is “Whole Paycheck” also means I tend to steer clear of the local store.)  Fortunately I come from a family that has long believed in the cost-savings and health benefits of a good pound of ground turkey. 🙂 Brown ground turkey in oil (I usually use canola and/or olive), adding in garlic, salt, pepper, and Italian seasoning to make a quick sausage substitute. I like to add extra basil and red pepper flakes for a spicy/sweet kick.

While the meat browns, add in your other veggies, then cover in sauce. Simmer. To me, it tastes like home.

Two important notes:

  • First, this has all sorts of veggies in it that are not low histamine. Right now I’m on a limited-histamine version of the Elimination diet, but I sense that my days of pepper- and tomato-laden kitchen experiments are going to be rather short-lived. While it wouldn’t fulfill my not-so-secret plan to find a quick-fix, bad-cook meal, there are tomato-less spaghetti sauces.I recently found this page, and it looks very promising: http://www.marinyacottagekitchen.com/recipes/archives/06-2013#.WNbDX2e1thE
  • I bought Trader Joe’s Vegan Mozzarella. First, it is NOT Elimination Diet compatible if you’re avoiding corn. Somehow I missed the corn starch in the ingredient list, even though I’ve tried to be diligent about twisting packages sideways and gently pulling aside flaps of plastic to squint at the tiny black ink under the glaring fluorescents in the dark hours of exhausted after-work shopping. I will confess. I tried a little anyway. The final judgement? … well, you can eat it, but it tastes like…melted plastic. It does look like cheese and melt like cheese, and perhaps if one grew up on Cheese Whiz and Kraft Mac and Cheese (and is allowed corn), it would even taste a little like “cheese.” After a tentative bite or two, I did the unthinkable: I scraped that part into the trash.DSC_0057

Confessions of a (chronically ill) graduate student

Today, I nearly cried.

Today someone offered to go grocery shopping for me.

She prodded me to give her a list of what I could and could not eat. She helped figure out what I needed. She didn’t care that in a few days I should be well enough to shop on my own – the important thing was making sure I had food I could eat now.

I am so blessed.

I am so ill, or am recovering from some test or procedure, etc., so much of the time that I would think no one would bother at all. I frequently feel that I’m a burden. Chronically ill = chronically needy. Why should anyone keep caring? But yet they do. And in such a way — the gentle ping of a text, “going to the store, need anything?” – the positive FB message “how about some…?” – the slightly more forceful call of “ok, so how about just what you need now? Have you eaten? What do you have planned for dinner?” —  that it makes me feel like I’m not some burden or good-deed prize for the day. She cares. So do many others in my life.

I am so blessed.

Elimination Diet Pancakes and Sausage

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Every week when I was young, we would travel an hour down the coast to visit my grandparents. We’d burst into their quiet cul-de-sac and race through a front garden fragrant with roses, dahlias, poppies, and dozens of other flowers I couldn’t name. And then after hugs and kisses and the requisite sibling fight over the morning comics, we would demand “Grandma’s breakfast.”

I couldn’t eat all of it now. Looking back, it seems like there must have been enough food piled on that wooden table to feed Paul Bunyan. When she went all out – which was actually fairly often – there was scrambled eggs and pancakes and sausages and hash browns and bowls of fresh fruit and juice. There was every sort of topping you could put on pancakes, to my young imagination – fresh fruit, jam, sugar, “lalaberry” syrup even, from a type of blackberry. Then there was sometimes sauteed vegetables, toast, or bits of cheese, if you were still somehow hungry.

It wasn’t McDonald’s type of hash browns either, frozen into a cake and deep-fat fried. No. Anything that was frozen or canned had usually been painstakingly processed by my grandmother. The vegetables usually came from the garden. The oranges for juice had been picked by my grandfather that morning. Both my mom and my grandmother make their own bread, and slices were lopped off a loaf willy-nilly and smeared with homemade jam. I grew up eating (mostly!) healthy, and I never even knew it. All I knew was that it was delicious.

When I had to start the elimination diet, I realized I’d eaten turkey sausage growing up more often than I had eaten pork. I’d eaten it my grandmother’s kitchen table, cooked in one of those heavy pans that were aged well, fried in some sort of oil that was poured from hand-thrown pottery jars and usually had been redeemed from previous cooking. Ok, so I wouldn’t recreate all of the recipe. I would use canola and a graduate student’s warped Ikea frying pan instead.

Next problem was the pancakes. I’ve tried gluten-free pancakes a few times. The first batch tasted ok, if you like fried hummus with maple syrup for breakfast. I really didn’t, and besides it wasn’t processed-sugar free, so it wouldn’t work for an elimination diet. I wanted something that was fairly fast and easy too, which meant avoiding mixing special flours or waiting for the batter to set. I’ve modified a recipe from one on the Bob’s Red Mill site. It is for fluffy pancakes, but the amounts of baking powder and baking soda seemed a little excessive even for that. Fortunately, I was subbing out the eggs for a 1/2 cup of unsweetened applesauce. I was a little generous with that part. It still isn’t a sweet recipe, and the dough was thick. I added more milk, and I dare say it can stand more. I also added a swirl of honey, which helped mute the sort of aluminum tang I always get from backing soda/powder heavy recipes and improve the sweetness. The batter can be spooned out, and then formed in the pan into the right “pancake” shape. I flattened them a little in the pan too. They were moist, soft, and still rather fluffy – I think you can easily reduce the baking powder and / or add in some more liquid sweetener without harm, although I’m not an experienced enough baker to tell. In the same vein of “I’m awful at this but I would put laundry money on it” I think that this batter will hold up well to adding things like blueberries, lemon zest, spices, vanilla extract, etc.

I ate 4 before realizing that I didn’t need to finish the entire batch by myself in 5 minutes. It only makes about 7 pancakes, although I can personally attest to the fact that they are quite  filling.

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This horrible picture is all I have because I was busy eating them. Yes. They are really that good.

Turkey Sausage

Ingredients:

  • 1/2 pound ground lean turkey
  • 1/2 tsp salt
  • 1/3 tsp ground black pepper
  • 1/2 tsp poultry seasoning
  • about 1/3 tsp garlic powder or to taste (I’m fond of garlic, so beware here).
  • canola or other neutral oil, for frying.

Instructions:

Take thawed (if using frozen) turkey meat and put into bowl. Add all ingredients. Using fork or hands, mix thoroughly. Form into even balls. (1/2 lb makes about 6 small patties.) Heat oil in frying pan. Smush balls with hand or, in a more safety-conscious method, simply flatten a bit with a spatula. Add patties to oil. Cook over medium heat until done.

(Side note: this will be a few minutes at most a side; I always thought that the almost charred exterior was “the good bit” growing up. Perhaps, like eating a lot of things that were good for me that I thought my older relatives loved (and so of course I imitated by loving too), but learned much later they hated, this was just good-natured manipulation by grandparents into eating what was in front of me regardless of whether it was nicely done or burnt to a cinder. It works.)

Pancakes

  • 1 1/3 cups, more or less, King Arthur Measure-for-Measure gluten-free flour
  • 1 tsp baking powder
  • 1/2 tsp baking soda
  • 1/2 tsp normal table salt
  • 1/2 cup unsweetened applesauce
  • about 3/4 cup almond milk (or whatever dairy substitute you’re using)
  • 2 tbsp extra-virgin olive oil
  • swirl (about 1 tbsp or more!) honey or other sweetener
  • EarthBalance for cooking

Instructions:

Combine all dry ingredients (and if adding cinnamon or other dry add-ins, I’d throw these in now as well) in a bowl. Mix well. In separate dish (I used the measuring cup I put the milk in) beat together the applesauce, almond milk, EVOO, and honey or other sweetener. Slowly add the liquid to the dry ingredients, beating well. Dough will be thick.Spoon onto hot skillet and cook at medium or medium low heat. To make a slightly flatter pancake, gently flatten once before flipping (makes it easier to flip too, of course). Otherwise these will be nice tall foundations for mounds of “butter” and floods of syrup. Watch closely. These will be too thick to really “bubble” at the edges the way I think classic pancakes do, so it’s easy to overcook. Makes about 7 pancakes.

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Elimination Diet Blueberry Muffin Boulders

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Recipe:

Ingredients:

  • 3 cups gluten-free flour (I used King Arthur 1-1).
  • about 1/4 cup gluten free rolled oats (optional, and probably best to skip, although I didn’t taste them at all)
  • 12 packets of stevia + 1/4 cup maple syrup
  • 4 tsp baking powder
  • 1/4 tsp salt
  • 1 tbsp cinnamon (or more!)
  • 1/2 cup unsweetened applesauce
  • 1 1/2 cups “milk” (I used unsweetened almond milk)
  • 1 1/2 cups blueberries (I used frozen, and I think fresh might work better, besides probably tasting better)

Instructions:

  • preheat oven to 375 (I’d really do 400 next time, particularly if you trust your oven. Which I do not.)
  • combine dry ingredients and mix well
  • make a well and add in liquid ingredients, stirring until incorporated
  • add blueberries
  • spoon generously into muffin tins well lined with paper (and consider spraying with oil as well, if you want to eat them the second day without paper – these stick more than the norm)
  • bake for 25-30 minutes or until a skewer inserted comes out acceptably clean. 😉

 

Periodically, you just get the overwhelming desire to be… normal. All right, I wrote it. The dreaded N word. The academic in me cheerfully (and unhelpfully) says “unpack that!” The practical and nearly tour-guide side reminds me that whatever normal is, I’m not likely to be it, now or in the future, so move on past this display, please. The financial side of me says “but you can’t afford to be normal!” My mouth, though, simply demands blueberry muffins.

Making blueberry muffins seemed like an easier thing to address than most of the rest of the above, even with IFM diet requirements, so I tackled that one first.

There are plenty of recipes out there for gluten free muffins. There are some for dairy-free. There’s a couple that are sugarless. In the end, the one I decided to try was a variant of a recipe I found here: http://thebigmansworld.com/2017/03/12/fat-free-flourless-blueberry-muffins-sugar-free-vegan-gluten-free/. But instead of using ground oats flour, I’d be using a 1-1 King Arthur flour, which had been great before for breading chicken and thickening sauces. I also had to change out the processed granulated sugar for another sweetener, and decided to use some stevia packets. I checked out conversion tables and tried to calculate and then ended up doing a mix of 12 packets of stevia and a 1/4 cup maple syrup. That last was because, as the stevia drifted up in clouds of fine dust, I discovered I actually don’t like the taste of stevia. Not in my mouth, not in my nose, not in muffins, nor on my clothes! I had a few oats in the bottom of the canister and thought that might be nice in the texture, since these things looked more like cupcakes than muffins to me. Not to mention, it might just get me enough counter space to finish the muffins, so in a handful of rolled gluten-free oats went. Finally, I thought that my oven was perhaps a little variable and I should try cooking at 375 instead of the recommended 400.

Dough prepared, added frozen blueberries, sampled again. Pretty tasty, although the stevia was an oddly bitter/sweet note. Ok. Time to spoon the mix into the muffin tins. I had way more dough than my 12 muffin tins could hold. Probably enough for 18, especially if I hadn’t sampled. I loaded the containers and told myself if my energy allowed, I’d make another batch as soon as these came out! Yes!

I put them in. I cooked for 20 and checked. The dough stuck so firmly to the bamboo skewer that it pulled the muffin, little paper cup and all, half out of the tin. I abandoned before the oven heat overcame me (hot ovens yes, but through those together with a slightly wonky body that can respond awkwardly to heat, plus bending over, and it suddenly became more chancy than I wanted). I tried again at 25… then at 30… then at 35, at which point (I think), I decided that enough was enough and they were done. Fortunately, they really were.

Unfortunately, the longer, slower cook time, different sugar, and oats meant that mine were in no way, under no light, fluffy yellow mounds dotted becomingly with berries. Was it the oats? The lack of sugar? A different flour? The frozen berries? You got me. The outside was fairly… firm. The inside, however, was great, especially slathered with melted “butter” – or  Earth Balance’s buttery-ish vegan spread. It’s not exactly a win. Still, to tell the truth, these things turned out better than the last batch of muffins I attempted. That’s not saying all that much, though, since the apple-pecan muffins with streusel topping had about the density of dwarf stars.

They don’t keep that well, which in my kitchen means that the muffins had, through some sort of instant petrification process scientists can only guess at, turned completely into small boulders by the afternoon of day 2. Or at least that was the fate of those I hadn’t pawned off on friends, in an attempt to get rid of them and gain some sort of insight into why mine weren’t perfectly uniform sunshine with freckles of blueberry. (This beguiling whisper of “try some” is in fact the battle cry of all amateur cooks, I’m now convinced). I didn’t have it in me to make the rest of the dough that night, or even the next morning. In the end I had a few spoonfuls (having helpfully left myself the spoon in the bowl) and ended up tossing the bit that was left over. I’m sorry, but I honestly can’t tell you that if you refrigerate this dough and make it in the morning (when the urge for hot fresh muffins is usually the strongest, seconded only by every other minute of the day), it will work. Or if it does in fact make 18 muffins, which would be my guess, provided you wouldn’t rather have it raw for breakfast.

And they did -temporarily at least! – satisfy my craving for blueberry muffins. 🙂

 

 

“Hello, pleased to meet you. I’m sick.”

It can be hard to meet new people.

To be honest, I often feel awkward meeting new people. Do I shake hands? Bow my head? Do that quick upwards head jerk, the surfer’s “what up?” And that doesn’t even take into consideration the circumstances of our meeting: “Hello officer, yes, we’re aware we set off the alarm…!”

Now meeting someone is at a whole new level of awkwardness. At some point, generally very early on in a young relationship, I’m going to have to confess that I have an invisible illness. It’s a moment that fills me with sadness, because I can’t help but feel that from that second on, this shiny new thing, with less weight than dandelion fluff, is about to be transformed into a lead balloon. I will never be the same in that person’s eyes as I was before I confessed to not being able to do something, eat something, be something.

Every time, I feel blindsided. Words tumble out in a stuttery stream.

  • “Oh, yes, I’d love to go out for coffee with you. Um, just so you know, though, I’m going to actually be getting peppermint tea because, um, I can’t drink coffee. I’m sick. I can’t do caffeine. But don’t worry, you can’t catch it.”
  • “I’m sorry. I’d love to go on a photo hike with you, but I’m not strong enough. I’ve got this illness and I’m just recovering from a bunch of tests and a surgery and if I go you’re probably going to have to carry me back.”
  • “I can’t split the pizza with you guys. I’m sorry, but my body just doesn’t tolerate… well, food, anymore.”

I feel like I should practice in front of a line of stuffed animals. “Hello. My name is Butterfly. I have an invisible illness. You can’t see it, just like no one can see when you have a headache. But just like a headache, it’s very real. And like a headache, you can’t catch it from me. I’m sick, but I will still want to do things with you. We’ll just have to do them differently.”

I try to stay away from specifics, partly because I sometimes feel as if doctors are testing out diseases and syndromes, like a chef throwing spaghetti at a wall to see if it’s done. Partly because, occasionally, the realities seem too frightening even for me to face in that situation, right then, right now.

Still, the person on the other end of this conversation often has questions. Sometimes they’re invasive questions, and then I’m evasive. : ) After all, although I may be sick and passively active for greater disability awareness, I’m not exactly in the satisfy-morbid-curiosity department. But the more that genuinely interested, thoughtful people know about my conditions and the reality of living with invisible illnesses, the fewer battles the next generation will fight. Or my friends. Or my family. The disability minority group is one of the few that you can join at a moment’s notice, after all. So I take deep breaths, picture a peaceful place, and answer the questions that I can. There are four questions in particular I know I’ll have answer – and I know I’ll have to try, even if I don’t have a fancy medical word for the particular demon I’m facing down when the questions smash into me.

    1. Is it contagious?
    2. Is it curable?
    3. Is it treatable?
    4. How long will it last?

Four more phrases to practice in front of my stuffed animals, who despite their rather fixed stares are a very non-judgemental audience. 🙂

But the timing of this conversation isn’t something that I can practice in front of a fluffy yellow duck or blue elephant. It used to be my “invisible illness” was a good deal more invisible. I could control or even altogether avoid the timing of the inevitable confession. Instead, I could first focus on the myriad of other things that make up constellation me, burning bright: Graduate Student. Musician. Photographer. Bad chef. Many times, though, invisible illnesses aren’t as invisible as we might like. I frequently run into people now with gimlet eyes and lightspeed brains. One glance, and they already seem to know all. More unobservant people might not add up ports or frequent trips to mysterious unspecified appointments, but even the most oblivious can’t miss it when my body does a party trick like passing out at someone’s feet. Whether I like it or not, being ill is part of who I am too, right now. I have to accept it.

Which means that I also must accept that these relationships formed After are going to be different. This new relationship will stand or fall not based on its foundation Before, because that doesn’t exist. It will be based on the person on the other side, and me, as I am. It doesn’t matter that much after all when that conversation happens. Yes, I am sick. Yes, that may be the first thing we discuss, Now. But this fact doesn’t mean the rest of me doesn’t exist. So yes.

Hello, pleased to meet you. I’m sick.

Confessions of a (chronically ill) graduate student

A big shout-out to the BBC (not that they need one!) They’re running a series on disability and business. Check out the links below for more information!

http://www.bbc.com/news/business-38962050

http://www.bbc.com/news/business-39040760

(No, I am not affiliated with the BBC in any way. : ) )

Confessions of a (chronically ill) graduate student

Today I almost cried because I got to do a completely normal graduate student thing: I rode in an elevator up to a library and studied at a carrel.

This feat brought to you by countless doctors and nurses, physical therapists, disability services, facilities management, and librarians.

It’s the little things that are, every so often, really the big things.