Gluten, Gluten Everywhere, but Not a Crumb to Eat

GF
ID: A lot of gluten-free products that my wonderful cousin Michele gifted us to help us on our gluten-free journey

Whew. I’ve been writing a book for the last two years now (off and on between everything that has happened to us and the world between August of 2016 and today). A large chunk of the writing is about what it has been like parenting with chronic illnesses. As I looked back on blog posts and diary entries and photo albums I have been reckoning with the idea that my youngest had inherited pretty severe anxiety from me. I wasn’t sure if it was the messaging he got when I was undiagnosed and very sick (that the world can be scary and unpredictable), or a unique set of genes that seem to have skipped my oldest. I blamed myself, often, for passing this on to him. I had stalled out on a chapter called “Inheritance” because I needed to make peace with my internalized ableism, with the idea that having my children become like me might be a curse. I have passed Lyme down to my oldest, but so far his immune system is keeping it in check. Lyme is awful, and I wouldn’t wish it on anyone much less my children who didn’t ask to be born. The harder part, though, is seeing some personality traits that had plagued and tortured me much of my life live on in them.

Especially with my youngest. I recognized the same reactions to failure that I had, the same reluctance to try something new or to try something new publicly. The same pressure to make creative endeavors perfect. I have a lot of blog posts about these moments with him. I have worked with myself so much to make sure I am not passing down an environment soaked in perfectionism. I’ve tried so hard practicing being kind to myself. I’ve tried to model taking chances that just ten years ago would have been completely unthinkable because it would have involved too much risk. But, just as with my illnesses, a purely cognitive, positive-messaging, psychological approach made only a small amount of difference. That difference was important, and necessary, and has made our family life a lot happier, but it didn’t change the underlying anxiety that was humming throughout our days.

Even though I gave up dairy six years ago based on a food diary and accompanying horrible symptoms, I never felt I had a problem with gluten. I swore up and down that the few times I gave up gluten felt worse that ingesting it. Until I got treatment for Lyme. And we tested my oldest for Lyme. And tested out an elimination diet for all of us this summer. Turns out a huge amount of my immovable fatigue was related to eating gluten. And my inability to regulate body temperature. And my neck and shoulder pain. But it was so obscured by all of the other horrible symptoms I was experiencing that I didn’t recognize it.

Turns out that the current of disabling anxiety electrifying my youngest’s brain starts when gluten in his system flips the switch. I don’t want to tell all the details right now, because it is hard to think about how often he must have felt so awful. Suffice it to say, when he eats gluten he becomes inconsolable. All those years of trying to comfort him through his worst times with a hug and the right words and not having them work became clear. There is only so much a hug can help when your brain feels like it is on fire. And until he had days without his brain being on fire he thought this was an inevitable part of who he was. He would tell me he hated himself. He can feel the difference now. He doesn’t hate himself any more. He does still hate how he feels when he is off, but he can separate that feeling from who he intrinsically is.

One morning recently he had cereal that was not officially gluten-free; it was made in a factory that also produces wheat cereals. Within fifteen minutes his eyes became glassy and he started to tell me his joints hurt and he didn’t want to go to school and just hugged me tighter and tighter. I had him take enzymes that can help break down gluten in case of accidental ingestion. Within another ten minutes his emotions righted themselves. It was scary and telling. There is no doubt in my mind that gluten has been hurting him for years.

This may also be inherited. It could be Celiac disease, an autoimmune disorder that can run in families with other autoimmune disorders like Hashimoto’s or Rheumatoid Arthritis. I could take a 23 and Me test to see if I carry genetic mutations for Celiac. As I go gluten-free some of my autoimmune conditions seem to be reversing, so it is possible that it isn’t just a sensitivity but a trigger for my body to keep damaging itself. My youngest has had lots of disparate and seemingly unrelated symptoms that also make sense in the context of Celiac, although he never had classic symptoms. I never had classic symptoms. If it hadn’t been for this experiment I may have never known. And as an Italian-American foodie, I might never have given up my carb-heavy lifestyle without this push. And my youngest inherited those sensibilities from me. He wants to have a cannoli food truck when he grows up. We’ve ordered some gluten-free cannoli shells online.

One article I read said that a child’s system may repair itself 3-6 months after adopting a gluten-free diet. All I know is that after about six weeks of a gluten-free diet my child’s sense of self-esteem and self-worth has improved a ton and a weight that was on my heart has been removed. He talks about his ideas so much more. Homework isn’t the same struggle, neither are chores or new hobbies.

My chapter called “Inheritance” isn’t stalled so much now as it is complicated by every new twist and turn, but somehow I don’t feel the same guilt as I once did. Quite possibly because my youngest isn’t suffering the same way he once was. Quite possibly because I’m not suffering the way I once was. The random nature of how the universe assigns predispositions and chance encounters in diverse environments and how that all comes together to create your life – I cannot take the blame for the whole universe. I can’t take blame for possibly being an asymptomatic Celiac sufferer born to family with a great-lasagna-making Italian grandmother. I can’t take the blame for not knowing I was bitten by a Lyme-carrying tick when I was six.

But I can take credit for every time now I try to make my youngest his favorite foods without gluten, and how I’ll tell him that this isn’t my most polished or logical essay, but I got writing done today and I am proud of myself for that, and all those years of hugs that didn’t solve him feeling horrible but at least let him know that we were there.

Keratin

My nails have been breaking. I don’t know if they got weaker while I was going through the most intense parts of my treatment for Lyme disease. Both index fingernails broke. My thumbnail has started to show signs of distress, jagged lines where it looks like the layers of nail haven’t been able to hold together. My instinct is to try to hide them.

I’ll be hiding my toenails for a while. The right big one pulled the trick where it grows over itself every six months-a little like a paper jam in a printer, I end up with two layers where there should be one. I bruised the left one when curcumin was thinning my blood too much and so will lose that one soon. Another I have left the nail polish on from last November to chart for myself how slowly it is growing compared to the one next to it. Closed toe shoes will be the norm. They are so far gone that a pedicure can’t save them this spring. But for all of their flaws, my nails have always been strong and tough. I have never had to worry about them being brittle.

Until now. I worry about nail polish and its removal causing more issues. I felt a twinge of vanity that usually escapes me (I rarely have any idea the state of my cuticles and my nails are never an even length). I’ve been watching my nails with curiosity. Does their breaking mean I am doing worse even though I feel better? Am I skimping on vitamins or macronutrients I need? Did I do something to them as they grew from my body or did they get damaged by something I did afterwards? Are they something to hide? Are they something I need to protect from my impulse to cover up?

 

nail
Image Description: My thumbnail with jagged lines almost parallel to its curves (which have gotten worse since this picture was taken) resting against a red and yellow piece of fabric

 

On my birthday one of the books I happened to pick up was a National Geographic compilation of some of their best Instagram pictures. I opened to a random page and was immediately struck by a brilliant toucan. The astonishing thing for me that makes photography so spectacular is that there are details that escape our notice when we see stylized versions of the same. A cartoon or painting of a toucan is still gorgeous-but I don’t know that any of them have captured the jagged lines that this toucan’s beak has. I stared and stared because they were the same as my own. I googled what beaks are made of.

 

 

Toucan
Image Description: A large two page spread of a toucan’s beak and head. The red and yellow beak has jagged lines running parallel to its curve.

Keratin.

The same substance our nails are made of.

When I looked at this bird I didn’t see a creature I was worried about, I saw a creature who has lived. And is beautiful. It may be trite, but I am grateful for little synchronicities that remind me that my experiences and imperfections are not unique, and are not embarrassments, and are not alarming problems to always be “fixed”. And that being seen as who I really am connects me to other creatures in ways I had never thought about before.

My Digital Home

Digital House
Image Description: a house with most of it’s siding removed
and some grey siding newly installed on the side

I haven’t blogged in a long time. It isn’t for lack of trying-I tried to post something just a couple of weeks ago and a glitch erased it all, pictures, image descriptions, the whole text. Which is probably a good thing as it was kind of pitiful, as in, I was feeling a lot of self-pity. It felt like the universe correcting me, telling me to try again with a little less blah.

Here I am. I started this blog in 2014 as a creative outlet for myself, a place where I could get short essays down and into the world and feel more connected to it. To have a space that was mine to shape and polish and decorate as I wanted, away from the needs of my two kids and the needs of my errant (and in a nod to Roxane Gay, “unruly”) body. I haven’t been able to use this that way for a bit. Oh, there has been self-promotion here and there, but a little essay every other week? Not so much. And that has started to bum me out.

Sure, there are somewhat good reasons for it.

I got warned by ambitious freelancers to never post a piece to your blog for free until you try to sell it. You know, realizing that writing is work and should be appropriately compensated. A great idea in theory-in practice I am absolutely wretched at pitching, and waiting forever to see if a submission has been accepted or if a pitch has landed is bad for my mental health. It was unsustainable for me. And I have discovered that I am really bad at coming up with timely think-pieces that have enough foothold for a broad audience.

Another factor was that I didn’t want to take what little time I had away from actually completing the book I am working on. It’s a work-in-progress, a collection of essays, a memoir about being chronically ill, that is going incredibly slowly at the moment. Part of the problem is that my illnesses, the subject of the book, keep shifting and changing requiring rewrites and reimagining and review. Time is eaten away quickly.

A third factor has been managing my health. I was diagnosed in January with Lyme disease, and I have most likely had it since I was six. The infection just took over when my immune system was under so much stress from two pregnancies and two C-sections and a recession about eight years ago, and I couldn’t cope anymore. So many mysterious and seemingly unrelated systemic problems came from that. Treatment is hard, many hours of the day it feels as if even my individual cells need deep breathes and stillness. Most of the day is spent letting my body rest. I never let it rest before-because I was diagnosed with fibromyalgia which has no known cause and no known cure I had opted to play through the pain, pushing through because my life was going to stagnate if I didn’t. I had social media schedules where I planned on Sunday night what Facebook posts I was going to post that week. I tweeted. I participated in every group I could get into. I got a blog post done every two weeks. I submitted and submitted and submitted. Then I got tired. And more tired. And more tired. And finally had to stop. Because I just couldn’t go anymore. I submitted, finally, to my body’s needs.

In the midst of this I asked myself what was it I wanted out of writing and getting published. I really thought it through because moving the goalposts was wearing me out. With the election of 2016 I wondered if what I wanted most was to be a voice for change, an activist. I asked myself if what I wanted was to be famous, like David Sedaris, or Jenny Lawson (The Bloggess), having fabulous fun book tours and interviews and the like. Did I want respect, to have the approval of the upper echelon in the literary world? Did I want to have a followers who can’t wait to see what I say next?

Then it hit me. All those things are wonderful. Any of those goals fulfilled would be rewarding. When those goals are achieved by other people I feel envious and there is a tendril in my heart of longing-especially on days when illness and treatment make those goals dance further and further away from my grasp. My real goal? I will do anything in my power to keep being allowed to tell what the world looks like from my point of view.

To achieve this goal, there are barely any gatekeepers. I can do that here, any time I want. I don’t have to wait for editors or agents or the Submittable queue. I don’t need to have an MFA to be allowed to do this. Nor do I need to wait the six months after I enter a contest to find out if the judges enjoyed my work. I don’t have to start my own literary magazine. What I want to be able to do, I already can do. It’s rare that that is true, especially in my body. What I really want to do is what I already am capable of doing.

This is my digital home. If I want to write about what Vanellope Von Schweetz means to me I don’t have to wait until I find just the right quirky paying home for that essay. If I want to talk about my son’s broken ankle and how people think he is perpetually miserable about it when he isn’t, I can do that without fighting for a spot in the Washington Post Talent Network, pitching the idea and hoping it doesn’t end up with a misleading title.

I want a place to show the peonies in my garden, and a little girl refusing to play Duck, Duck, Goose just to give the appearance of friendliness. I have that place. I just forget that I already do.

The other day at Ulta I found myself looking at every shade of lipstick, drawn again and again to the reds, which is unusual for me. I almost shelled out 35 bucks for a lip liner and lipstick. Then I realized that although I hadn’t used it since a gala fundraiser in 2015, I had an almost identical red at home. Here’s to using the clothes and the makeup and the utensils and the tools we already have before going out and buying more. Here’s to remembering that if what I want to do is be allowed to tell my stories, I already have a way to do that.

Here’s to putting up siding, painting the hallways and redecorating my digital home.

Happy New Year 2018

HNY Selfie
Image Description: a selfie of me-a white femme with long brown hair. A half-assed selfie with messy hair and no makeup, but a selfie nonetheless.

 

I have *not* written in a while

Six weeks since I’ve blogged, maybe?

Three of four weeks since I’ve worked on my book?

A couple weeks since I wrote up our Christmas letter, which we still haven’t sent out?

A New Year’s post January 4th?

 

New Year’s Resolutions (at least for me) have generally been equal measures guilt/self-flagellation for not being better AND an expression of a commitment to more things that make me happy. For the first year since I can remember making resolutions I haven’t felt the guilt of not being enough at a deep fundamental level.

 

Normally I would have set up a new strict schedule for myself to maybe blog each week with a fully formed essay, go back to my regimented social media blitzes, finish four essays a month, exercise every day, wash my face and dry my hair, finish my book by March, read all the books I have bought but haven’t finished, suddenly be perfect. I had convinced myself that as long as I had a concrete plan I would finally be able to be “successful”. I am awesome at making plans that will be abandoned almost as soon as they are committed to paper. I also would get down on paper fun things that I had denied myself that I would finally get around to doing. I had a little higher success rate with those goals, though they we still based on me being “bad” at being happy.

 

I didn’t this year, and I didn’t abandon my old models as a conscious decision. I just didn’t. Going back and writing what I might have done other years is making me feel anxious again, like I am late for an appointment-but it’s an appointment where I just yell at myself for all the things I could do better.

 

I have always thought of myself as someone who does things half-assed. Never doing things totally right, never finishing important things, dropping one good habit as soon as I pick up another needed one. But you know what? I have done a lot of amazing things one ass cheek at a time. I read something this year that turned a particular idea on its head. A man was cursed, it would seem, with only being average at everything he tired. Someone else posited that being average at EVERYTHING one tried is still amazing-the average mountain climber on Everest still climbs the mountain, you audition for a Broadway show and you aren’t the brightest star on the stage but the average Broadway performer is amazing, you try your hand at being a teacher and you still help students even if you aren’t a Golden Apple recipient. We disparage accomplishments and good done in the world in the quest to be the best, we feel like we need to go all in for everything or we fail. It isn’t true. Half an ass is still more than no ass. An absolute ton of good is done a cheek at a time because that is what we can do. I was angry at myself for so long not finishing my book “on time”…ignoring the nearly 50,000 words I did write already. That’s a hell of a lot more than zero.

 

I feel generally good about myself-I still have bouts of guilt when I really could have or should have done more and didn’t, but I’m finally recognizing that for most of my life I really have done my best-I have put intense effort in to so many parts of life. I’m finally honoring those efforts instead of disparaging them. We tell kids that we just want their best effort, that if they try we will be pleased. Either I’ve been lying to children or I need to really believe, at my core, that that is true. I think long and hard before lying to children for any reason (mysterious holiday gift-bringers cause me a lot of stress) so I need to reconcile this one way or another.

 

So this is a bit of a half-assed post, but it is still a post. It exists. I took time to articulate something that felt important to record. I am going to recognize that this is the best I can do at this exact moment in time, and I did it, and am happy I did.

 

To you and yours, Happy New Year!

Love,

Kristin

BCP

BCP
Image description: A countertop with a contact case, contact solution, nail scisssors and hormone replacement pills

As a writer who mines her life for stories, it guts me to know that women have to put intensely personal stories of suffering on display every time the government wants to strip away protections we need for our well-being.

It makes me sick that women who may not be ready for anyone to know about the sexual harassment or even assault they endured feel compelled to speak out when Betsy DeVos rolls back protections for rape victims.

That women who have never before publicly shared the pain of losing a much wanted child after twenty weeks gestation have to go into detail about how they and their baby were on the edge of death to explain that banning abortions after twenty weeks is not protecting lives but endangering them.

And now Republicans are stripping away the federal protection that says employers must cover access to birth control pills and women are once again having to share personal stories about what access has meant for them.

I am extremely grateful women have, and I am going to share my story with birth control today to continue that conversation. We are realizing that we have more in common than we knew by breaking open these taboo subjects. We are reaching new understanding and empathy for what women have had to be silent about. But I firmly believe it is a form of violence to create a situation where someone has to bare their souls and all the intimate details of their lives at a time prescribed by someone else. It is a violation to create an atmosphere where people have to beg for their lives publicly, sharing things no one else has really known to get oppressors to see their victims as human. Yet here we are.

I would have told these stories anyways, in my own time, and I feel they may do more good than harm, but I do believe my agency to tell them when I want to has be taken away.

As a teenager I had intensely painful cramps. Every month the first day of my period was wave after wave of rolling pain that left me unable to stand, unable to breathe without pain, unable to live my life. The pain would be so intense that crying was out of the question, as the irregular jarring motion of a sob would tug my body even more painfully. I would eventually vomit from the pain and once I had I would practically pass out and sleep would help erase most of the pain. Ibuprofen and naproxen helped some, but were unable to touch most of the pain. I would miss a day of work or school each time this happened.

One afternoon in high school my period came a day earlier than I had expected. I started to slump over at my desk in pain and asked to go to the bathroom. About twenty minutes later a teacher found me there, lying on the floor, unable to get up the pain was so intense. I was taken out in a wheelchair barely conscious.

Going on birth control pills a few years after that saved me. I still felt tremendous pain each time my period started, but it became bearable, livable. I could go to school, I could go to work. I was finally able to not spend a day each month willing myself to be silent and calm and still when the worst pain of my life washed over me because breathing deeply through it was the only thing that could save me.

I was on a low dose birth control through college and the early years of my marriage when I became pregnant with my first born while still taking them. For a short window of time my body was very fertile, sending out eggs even with the hormones in birth control pills trying to convince my body I was already pregnant and didn’t need any to be sent out. I was surprised, but happily surprised when this happened. I don’t know how I would have felt if, without birth control pills at all, I would most certainly have gotten pregnant in my early rather than late twenties. I would not have been remotely close to ready at a younger age.

After the birth of my first child I went on very strong birth control pills, and was able to prevent pregnancy during a tenuous stretch of time when I was a very new mother with post-partum depression living far away from family. It should be noted that once we decided we were ready to be parents again I got pregnant the very first month I stopped taking birth control pills.

After my second child was born I developed fibromyalgia and for the first few years of his life I was in near constant pain. It would have been a huge burden for all of us to bear if I had gotten pregnant again in the throes of lightening pain that went up and down my arms and legs and back. We would have all suffered tremendously.

I am no longer on birth control pills, but only because I am now going through early perimenopause and take hormone replacement therapy that helps control the pain of fibromyalgia for me.

For nearly twenty years of my life birth control pills were absolutely necessary, both to let me live without the excruciating pain that ran my life like clockwork as a teenager and to allow me to have an intimate relationship with my husband without becoming pregnant with more children than we could plan for.

Birth control pills made my life MINE. It gave me some mastery over my body and my circumstances and was so very, very, important.

And I am beyond angry that they are to become less accessible again, that the agency of women to have control over their own family planning and in some cases the ability TO LIVE LIFE IN LESS PAIN will be put at a price many women can’t afford to pay.

And I am beyond angry that the agency women have to control the narrative of what birth control pills have done for women has now been compromised.

But here is my story anyways.

 

Essay at The Refresh

glacier-tour
Image Description: A family of four, two boys, a mother and father, bundled up in coats in front of a glacier

Hi Everyone!

I have an essay/article up at The Refresh called Traveling While Chronically Ill (clicking on the title will take you there). This is a reworked blog post from last summer about my experiences planning carefully before vacations. This version has some more information/tips that I find helpful.

Hope you’re all doing well!

Love,

Kristin

Happy Irish-Italian-American Day!

irish-Italian
[Picture of red tomatoes and a box of spaghetti above. Picture of shamrock and plaque that read “Home is where your story begins” surrounded by Celtic knots below]

I am half Irish-American and half Italian-American, more or less, give or take. On the Irish side there are a few Scottish and French ancestors, and on the Italian side we are more accurately Sicilian. This is a fairly common background for people who live near Chicago, Boston, or New York, as both of these European immigrant groups settled in these cities in large numbers. I get that it isn’t very common in the rest of the country – when I lived in Tennessee and Texas I was hard-pressed to find anyone who was either Irish-American or Italian-American, much less both.

Chicago, however, is city that dyes its river green every St. Patrick’s Day and has a bag-pipe filled parade. It is also a city that celebrates St. Joseph’s Day on March 19th with groaning tables of Italian food and the color red. Patrick is the patron saint of Ireland, Joseph the patron saint of Italy. It stands to reason, that in the Chicagoland area March 18th should be Irish-Italian-American Day. You know, split the difference and celebrate the best of both cultures.

My brother and I went back and forth on suggestions. Maybe of viewing of Brooklyn or Return to Me (apparently there is an Irish-Italian restaurant). I can’t remember if it is A Bronx Tale or Goodfellas that features characters who cannot be full mafiasos because they are part Irish-but I’m thinking I’m tired of Italian heritage being reduced to the mob. Maybe I’ll watch the beautifully animated Song of the Sea again.

My general feeling is that I would be best served eating Italian (and Italian-American) food while listening to Irish (and Irish-American) music. Gnocchi, lasagna, caprese salad, tiramisu, cannoli, lemon knot cookies, pizzelle, agli olio, espresso, eggplant parmesean, stuffed artichokes, pasta fagioli. Gaelic Storm, the Cheiftains, Van Morrison, Flogging Molly, U2.

The reverse would be all right too, if perhaps a tad less illustrious. I really do love a good stew, potatoes are always a favorite, and my oldest kid even likes cabbage. I can appreciate opera (Nessun Dorma sung by Pavarotti is heaven) and Frank Sinatra will always have my heart.

I could binge read, James Joyce and Dante, William Butler Yeats and Petrarch.

Check out the artwork of the Book of Kells, and the Renaissance.

Drink beer or wine.

And both places are beautiful.

You know, it is almost as if there is no wrong way to celebrate.

So for everyone out there who has both Irish and Italian heritage in America, in between Shamrock Shakes and sweets tables, there is one day that could celebrate both. Let’s do it!

Happy March 18th, everybody!