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

 

Red Hen

 

shallow focus photography of white hen
Photo by imagesthai.com on Pexels.com

A friend of a friend (I found out this last week) is the co-owner of the Red Hen in Lexington, Virginia. I am incredibly proud of what she did, how she interrupted the narrative that says we have to be docile in the face of those who want us to die by neglect or malice, who want our voices to be silenced by stripping our names from voter registers and keeping us quiet and “civil”-all while lying to our faces about what is happening.

The owner who asked Sarah Huckabee Sanders to leave did so respectfully, privately, and with as much care to all parties as one can when confronting the lying mouthpiece of a horrific administration without losing site that she is also human.

Sanders could have let the incident go, but instead decided to make an example of the Red Hen, that how dare anyone, no matter how thoughtfully and carefully, interrupt the the comfort and entitlement of the people in power. She, by announcing what happened, sicced her followers on the Red Hen, sicced the President on the Red Hen. They have had death threats and chicken manure dumped on their doorstep. Anti LBGTQ bigots camped out in front of the place.

My question is, if this administration really had all the power why would one person refusing one member of the administration a meal (in a way that let her maintain dignity as she left) require the full force of the President’s platform? They were trying to make an example of the Red Hen, to show the rest of us that we better not speak up. Instead the Red Hen is an example to us-that disrupting them works. Disrupt, irritate, slow down what they are doing, be a thorn in their side, a rash that makes it uncomfortable to sit wherever they please.

The stakes are very high right now, I am I so dismayed by rank and file Democratic senators who are chastising the Red Hen (and Representative Maxine Waters) for disrupting the system. There is a quote by Zora Neale Hurston I am reminded of, “If you are silent about your pain, they’ll kill you and say you enjoyed it.”

We are at that stage. 5000 people died preventable deaths in Puerto Rico. We have children in internment camps.They have tried to gut healthcare and providing food to poor children while starting trade wars and stripping environmental protections. We left the UN’s Human Rights Council for God’s Sake.

I have included a link to the Red Hen. (Click on the name) If you are so inclined, you can buy gift certificates and ask that they not be sent, that the money just be put back into the business to help them get back on their feet and to show support for how they stood up for what was right.

Thank you.

 

 

Essay at Rooted in Rights

 

Garden Lites
Image Description: A box of Garden Lites Chocolate Muffins that are dairy-free and gluten-free

 

Hi Everyone!

I have a sort of unusual essay/article out today at Rooted in Rights, a disability advocacy group. It is called As a Chronically Ill Mom, Even Tater Tots Are a Way to Show My Kids Love . It’s about being a mom, food being love, preservatives, the Standard American Diet and convenience foods, and it’s part of the conversation around Mother’s Day about what it means to be a disabled mama. I hit a lot of topics in 1000 words!

Hope you are all having a great Mother’s Day weekend!

Love,

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.

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.