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.

Summer Is Almost Over ?!?

 

Hostas
Image Description: a large amount of hosta plants with purple flowers on stalks

Holy crow it’s almost over, isn’t it?

What happened???

Every summer I vow that this summer will be more structured and balanced. I won’t forget to exercise. I will take all recommended supplements. We will go to the farmer’s market every Friday (so far we are one for eight on that). New hobbies will become habit. Writing will happen. But life doesn’t like it when I try to wrangle it into an organized march. Every week has been a different rhythm what with camps and vacation and lessons. So it goes with blog posts, too. I did not intend to write one today but noticed it had been a long while so here we are.

Here is some summer stuff that I haven’t gotten to properly process/reminisce about/think through and will run out of summer time before it happens:

  • I have nearly 200 pages of my book written. That is bananas. I still have about 20,000 more words to go. Even more bananas
  • The boys have done a chess camp and a stop-motion animation camp, swim lessons and have an archaeology-ish camp coming up next week.
  • We had my mom’s side of the family reunion in Kentucky and I got to be 100% myself for a full week because I was around A) people who know and love me in all my overly enthusiastic goofiness and B) locals who I may never see again. No masking required.
  • I survived a NASCAR race and a day a Six Flags in a heatwave.
  • I need to up my Lyme treatment again because while my heart rate was great on vacation, the stress of real life means my body isn’t coping as well as I’d like. I don’t really want to up my supplements because it means I lose some of my day.
  • We’ve taken the boys off of dyes and preservatives with good results. We’ve taken me off of gluten with the result that I feel a bunch better, but I complain a lot more about what I can’t have.
  • Our new house has so many flowering plants that I didn’t realize. Every week something new is exploding and while I’ve tried to keep track I am finding it impossible.
  •  The outside of the house renovations are FINALLY DONE!!! Thank goodness.
  • We saw Incredibles 2.
  • We just went to an outdoor concert where the band Classical Blast played The Cranberries’s Zombie as a symphony would, and I just about died from 90’s nostalgia happiness.
  • We have plans to make some pineapple sage lemonade this weekend.
  • I have an adorable Modcloth dress that I need to wear out somewhere, but we haven’t had a chance to go out.
  • We don’t know, still, which school the boys will attend in the fall. We might not know until the week before school. That is not helping my (or the kids’) anxiety levels.
  • I got to hear Len’s Steal My Sunshine.
  • I realized that I have a lot of symptoms of both Autism and ADHD that overlap-and that ADHD strategies are helping me figure out how to make my life work.

 

There is a ton I could unpack about any of these-really! I can think of a mini-essay for all of these, but alas time is fleeting and I need to go make lunch, add 500 words to a chapter about How to Train Your Dragon and disability rep, get some groceries, remember to put our bin of batteries by the door so I remember to take them to recycling, learn how to write a book proposal, submit a story, learn about how people with ADHD have very little concept of how much time tasks take, sew a pillow with Christopher, try not to obsess over how young I looked on the day of the 2016 election and how I’ve aged ten years in the last 18 months…the usual.

Just checking in, hopefully I can get something more coherent to you soon!

Kristin

 

New Essay at Full Grown People- “Spectator”

Rectangle of outside
                                          The Rectangle                                              Image description: A picture window that shows a wintery outside world

 

Hi Everyone!

It’s been a bit since I posted, huh? I am really happy to be able to, to let you know I have a new essay up at Full Grown People today called Spectator. It is about living life watching instead of participating, because often that is what I am able to do. It is also about parent participation night and third grade basketball. It’ll all make sense, I promise!

Love,

Kristin

 

N Basketball
            The Basketballer as a Third Grader                  Image Description: A smiling brown haired boy in an orange Illini jersey sitting at a table

Locked Down/Locked Out

Locked Down
Image Description: A school as seen from a car in the school’s parking lot, children and teachers at the front door by the entrance.

I wrote this several years ago. Every winter day when I drove my children to school after Sandy Hook, I felt my chest tighten wondering if this would be the last time I saw them. I wouldn’t turn and walk away until I saw them safely in the building, knowing I would never live past the regret of not looking after them until the last possible second if they should die that day. I parked on a different street, walked a different route after that Friday in December, anxiety and magical thinking working together to make me believe that I was somehow protecting them by avoiding the things I did that day, the day small children were murdered in their school. A few months later the incident described below happened. 

I think a few differences have happened over the last few years that make this story a time capsule of fear and hope that don’t carry over to today.

When this story took place, though I was scared, I felt that many good people were trying to figure out how to prevent mass shootings from happening again. I felt confident that every other mother and father in the country was feeling the weight on their hearts as I was. I was wrong. There were some very evil people who value money over children’s lives who have been operating covertly assuring that nothing-not even prior domestic abuse charges-got in the way of gun manufacturers selling more guns. Concealed carry became the norm in even blue states like Illinois. Open carry became the norm in red states like Texas. There is little to prevent any American from gathering as much ammunition and as many guns as a terrorist organization might procure. The mass shootings got even worse.

When this story took place I thought that we were starting to dismantle toxic masculinity. I thought we were turning a corner on how we raised our boys into men, that we were starting to assure them both that they were allowed to feel pain and that they were not allowed to use violence on their fellow human beings-that it wasn’t weakness to have feelings and it wasn’t a show of  strength to abuse those within their world. Maybe this is a violent death rattle that will destroy so much more before these toxic ideas finally expire.  I was a teacher. I had a firm belief that we had power to help change the lives of young men who could have turned to violence and enacted interventions to stop them. I still believe we can, but I do not believe there are enough people who want to find out how anymore. The young boys we had a chance of changing are now violent young men with more capacity to kill that we did nothing to dissuade.

When this story took place, I thought my fear could be contained by the idea of a school lockdown, that if I pinned my fears to this one location in space and time it wouldn’t infect the rest of my world. That the healthy white blood cells I had would route my panic and grief if I could stop it from spreading. Shootings have happened everywhere and the infection has spread. My white blood cells have given up; the infection has spread so far that I have forgotten what it was like to be fighting for my health and almost winning.

This story is both tinged with more fear than I now feel, because resignation has subsumed my alarm, and more hope than I now feel, because change I thought was coming was never on its way at all. 

I never thought I would wish to be able to have the feelings in this story again. Once I get something so ugly on paper I hope to have flung the feelings that inspired it far away from my body. I now wish they still felt like they were a part of me.

There are red and white lights flashing as I pull into the parking lot, but no sirens.  I go to stand in the cold with the other parents, waiting for our preschoolers to be released.  They are not.  A police car has come to silently join the fire truck and ambulance that are already here, and we realize that the children are in lockdown. This isn’t a drill.

“I knew they shouldn’t have put the little ones in a junior high.” The first parent among us starts to express our fears. I nod, almost imperceptibly, as I always thought it was strange to put three to five-year-olds in the same building as teenagers. It was a temporary solution to a space shortage, but an odd one. One that had already scared us, but we couldn’t protest as we were lucky to be getting services at all with so many budget cuts.

We sit stand quietly, tensed and staring at the door that won’t open.

“It’s been five minutes.”

I try to steady my breathing and hope against hell that the children don’t suspect that anything unusual is happening. That they are huddled in their coats and mittens and backpacks in a corner, following their teacher’s directions to stay silent and still. I am able to calm myself for a moment knowing that they always listen to her, even though they are squirmy tiny people.

“It’s been ten.”

We shift lightly back and forth on cold feet, trying to warm ourselves. Or maybe we are getting ready to spring. There are about forty of us who are realizing what it means to be the ones locked out: we can’t do anything to protect them. I fantasize about scooping up my thirty-five pound child and running, though I know that isn’t what you are supposed to do. And where could I possibly go to get far enough away? We are all listening, hoping that nothing unusual punctuates the silence inside the school.

The woman who first spoke up has a little boy who, at the end of each school day, runs straight for her laughing, yelling “Mommy!” She catches him up and swings him high into the air and lets him fall into her arms. Every day. She speaks again, “He had a twin sister. She had a hole in her heart and she died, as a baby.” More quietly she adds, “Nothing else can happen to him. To us.”

I finally use my words to dampen the panic in my throat. I say something about how it will be all right. I say something about how I know about these things, because I was a teacher. I was a teacher who handled these hormonal, dangerous teenagers for a long time. I knew they could be good and kind, and lonely and angry and confused. I tell them about how we handled a six-foot tall boy who brought a very large knife to school. Without injury. Without harm. And that the boy eventually came back and was welcomed and never hurt anyone. I say something about protocol, and drills, and empathy, and vigilance, and dedication. And redemption.

“It’s been fifteen minutes.”

I want to shatter the glass of the doors that won’t open and run to the room where I know my youngest is and be there with him. In case anything happens, it won’t happen without me. It can’t.  I want to whisk him away from everyone else in the world forever. I want to put myself between him and everything. Where no one can get to him except through me, and he will not get to anyone else without my intervention.

Doors far from us open, and one slim boy is escorted out by four police officers. Silently, they box him in. He is in handcuffs, but his arms are not held to keep him from running away.  He won’t. His face is the same as my six-foot tall boy’s.

The doors in front of us swing open and my preschooler is at my side. I grab his face in my hands to see that he is smiling, not worried. I hoist his thirty-five pounds against my hip, and realize how hard it would have been to run carrying him. And how impossible it would have been to know that I was locked away from him, and not even given the chance to try.

Essay at The Manifest-Station

Boys room
Image Description: A child’s bedroom with two beds and one wall that is mostly blue with paintings of planets, stars and a close-up of the moon on it.

Hi everyone!

Today I have an essay up at The Manifest-Station called Bedtime (you can click on the title to link to the essay).

This is a story of two bedtimes, one recent and one more than six years ago. Part of the story is about the painful limitations I encountered being a parent with chronic illnesses. Part of the story is about how miraculous getting to be a parent at all feels.

This is a chapter in the book I am working on called Quote/Unquote “Healthy”.  I announced here last summer that I hoped to have it done before the 2017-2018 school year. Well, illness gets in the way sometimes (and adds more chapters I need to write about!) but I hope to have the full manuscript done by November.

The Manifest-Station has given this story a wonderful home, and a gorgeous accompanying picture that is beautiful…and makes me smile as it doesn’t look much like the room this actually took place in. So, for you all I included the real thing, for authenticity’s sake.

I hope you are able to check it out.

Love,

Kristin

When Fiction and Reality Meet

Room

My favorite reading experience, where the book I was reading matched the circumstances around me perfectly, used to be easy to pick out. I often used to take the train from the Chicago suburbs to Champaign-Urbana, when I bounced back and forth between my parents’ house and college. This particular trip I took was in the evening in the middle of a cold, clear winter. While the train was usually full enough that I was obliged to make small talk with a seatmate, this time it was almost completely empty and silent. Every other time I sat under fluorescent lights with dull grey metal all around me. This time I found myself in a refurbished Pullman car. Red velvet lined the seats, with a fringed gold trim edging the armrest. A sumptuous carpet rested under my feet. The lights had a soft glow emanating from ornate sconces. I burrowed myself into my seat, cushioned and alone, and picked up where I had left off reading The Shining for the very first time. The opulence matched The Overlook Hotel, and as I glanced out the window at an endless stretching snowy winter, seeing a single farmhouse light in the distance echoed my own isolation and that of the Torrences. For nearly twenty years that has been my favorite.

I may have a new contender. I have been sick with a really horrible protracted cold, and my boys are now sick with the same excruciatingly slow virus. My husband is traveling for work, and the boys have now missed three days of school. Last night my oldest wanted to sleep on the couch, so when he went to bed I tiptoed to my room and grabbed a book since I was not going to be able to fall asleep at 8:30. I had bought Room by Emma Donoghue more than a year ago and hadn’t touched it since. I’m not sure if I was worried that my heart wouldn’t be able to take it, but for some reason it nearly jumped off the shelf at me this time.

We are told the story through the perspective of a five-year-old boy named Jack. He and his mother are held captive in a small room by the man who kidnapped his mother years ago. The book opens on his fifth birthday and describes how they manage to make a life for themselves in “Room”, a place Jack has never left. It opens on the day of the spring equinox. I began to feel eerie, as yesterday was the spring equinox as well. Jack describes what TV shows he likes to watch, and because this is set in contemporary times, they are all shows my children watched too. Backyardigans, Wonder Pets, Dora the Explorer. The way his mother helps structure their days reminded me so much of what it was like when the boys were small, when one day can bleed into the next if it is just you together in the house, seeing no one else, going nowhere else. A state I am in right now. It is just us, quarantined away from the world, only using the resources we have on hand, and with each other as our sole company. It is both intimate and confining all at once.

Jack counts his teeth with his tongue when he is trying to distract himself. Each time he does I do the same and am reminded that a crown popped off one of my teeth earlier in the day. As I think about when I’ll be able to get that fixed Ma takes a ‘killer’ (painkiller) because her bad tooth is aching very badly. She is also waiting to get her tooth fixed, though for her it may never happen.

I read more than half the book in that one sitting, entranced, both seeing myself and the day I just had and the day I was about to have stretched before me, and seeing how much more I had that they didn’t. A window. A telephone. Food in the cupboards. The ability to open the door and feel fresh air on my face. Things I would never have stopped to appreciate that I still have even if I don’t have the Outside right now.

I’m not capturing how odd it felt, how odd it feels when your reality and fiction blends so perfectly together that you cannot extract one from the other. It isn’t something you can plan, though luckily sometimes it comes together. I read a scene from The Signature of All Things where the protagonist laments how useless paper is on a tropical island exactly one day before discovering all our paper was a humid mess in Puerto Rico. We read Harry Potter for the first time through the 2016 election and the coincidences were spooky (though that is an essay for another time). I guess I’ll tell this story better after twenty years than I do now, but I wanted to say…

Books are magic in a totally unpredictable and unusual way. And in the middle of a boring household cold, I got to experience that again.

 

International Women’s Day and Day Without a Woman

devalue

Today is International Women’s Day. This particular March 8th is also, in the United States, Day Without a Woman – a general strike to highlight the importance of women and how their contributions of both paid and unpaid labor are grossly underappreciated. I have been spending all of this week leading up to today trying to figure out how best to honor both.

The easiest way to support the day and the strike is to wear red, a show of solidarity with women fighting for equal rights, opportunities and recognition. Done. I’m wearing red, my two kids are wearing red. Easy.

red shirt

The next is slightly harder. As women purchase 70-80 percent of items and services for sale, women are asked to refrain from purchasing anything today, to demonstrate how much our purchasing power is worth. Another way to do that is to purchase exclusively from women-owned companies. I will be purchasing an item to support the wonderful online site The Establishment, a bastion of intersectional feminism and support for writers (they pay every writer for every story they publish-which is unusual and welcome in the world of online publishing). I won’t be buying lunch, or dinner, or groceries, or clothes, or books, or my kids’ haircuts or an oil change for the car today.

The last is the most difficult. Women are called upon to strike from all paid and unpaid labor today. Except for the once-a-month tutoring gig I do get paid for, all my labor is unpaid right now. I am a published writer who last got paid for an essay in 2007, and a stay-at-home mom. When my husband is not traveling for work, we already share household chores and child-raising tasks equitably. He doesn’t need a reminder of what I do, and I feel appreciated. And if I refrain from writing, I lose the opportunity to advocate for recognition of the work that women do. So I won’t be taking time away from unpaid labor.

I also never thought of it this way before, but I have women in my employ. I am a chronically ill person who functions most weeks as a single mother would, taking care of everything while my husband travels for work. We have a service come and clean our house every two weeks to help. Vacuuming, washing floors, dusting high shelves, scrubbing toilets: I can technically still do all these things. However, the pain and energy cost of doing these chores (my fibromyalgia tends to flare) leaves me bankrupt for days sometimes, unable to do other things that need doing. I am so grateful to have the three women who do this work for me. Wednesdays happen to be the days they come. I appreciate what they provide for me so much, and know I am a more productive person if I let this work still happen. If they do strike today, I am completely supportive and understanding. If they do not, I will try to make sure to tell them how much I appreciate the work they do.

But, most of all, what I want to do today is explain just how many women make my world possible. I have lived in the world of women for a decade, a world of stay-at-home moms, retail workers, grade school teachers, pediatricians, nurses and volunteers.

I will start with school. From the early intervention services that my youngest had at age two, to the fourth-grade teacher my oldest has now, almost every single educator my kids have had have been women. Since preschool my oldest has been taught by at least thirty teachers and four teacher’s aides, and only three of them have been men. Since early intervention my youngest has had four speech therapists, and at least twenty-four teachers and teacher’s aides, I think one of whom has been a man. We have a male principal, but the vast majority of workers at the school, from the school secretaries to the lunch moms to the volunteers who organize fundraisers and room parties, are women.  Grade school workers are notoriously underpaid and in a capitalist society being underpaid means being underappreciated. I love our school.

I went to work out today. Seven out of the nine receptionists I see regularly are women. When I peek in on classes, I have yet to see a male instructor. Most of the trainers are women. All of the instructors for early childhood classes at my park district are women.

I thought about spending time at our library. I have seen two male librarians over the course of nine years.

Where we get our boys hair cut, eight out of the nine hairdressers I see regularly are women.

Grocery stores, at least half the employees are women. Fast food and slower paced restaurants seem to be the same, at about 50%. So is our local post office.

Clothing and shoe stores? Almost 100% women.

Our local food pantry and community services administrators? 80% women.

Emergency room at our local hospital? The boys and I have only ever seen two male nurse versus about twenty female nurses. We’ve seen two male doctors versus at least ten female doctors.

The pediatrician’s office? All the nurses are women. Half the doctors are as well.

We would visit my mother when she worked at the offices for our local church. A full half of the support staff the offices, and roughly 90 percent of the teachers for both year-round parochial school and CCD were women. And these are just the paid positions. Mothers often volunteer to help even more. In fact that’s how my mother got her foot in the door for this job in the first place.

Most of the women I know, whether they work outside the home or not, do vast amounts of unpaid and unappreciated labor. I once had a conversation with other moms who were completely shocked that my husband did the grocery shopping for our household. I was told that to expect their husbands to do this task was completely unthinkable. Working women still do more household and child-rearing chores then working men. Stay-at-home mothers are still looked down on as if they aren’t contributing.

Most caregivers for disabled people and the elderly are women, both paid professionals and unpaid family members.

On top of all this, is the emotional labor that I have seen women do for free. The labor of keeping relationships healthy, families emotionally whole, communities functioning and working together.

The contributions women make to this country, to the world, are staggering.

The last other thing I am going to try to do today is to spend time not only thinking about how much would be lost without women doing the too-often invisible work of the world, but how much would be lost without their voices too. I have set my playlist to all the music I own either written or sung by women. I am reading I Am Malala for the first time.

women's voices

 

This is how I will spend today.