Climbing

 

Charlotte Doyle
The title page for the book The True Confessions of Charlotte Doyle by Avi with a black and white illustration of the bow of a sailing ship

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There is a passage in the children’s book The True Confessions of Charlotte Doyle by Avi that I’ve been thinking about a lot throughout the pandemic and shutdown. The premise of the book is that our protagonist, Charlotte Doyle, was put on a ship from England by herself in 1832 to join her family in the United States. She wasn’t supposed to be the only passenger, but she ends up being the only passenger, the only child, the only girl or woman on the voyage. The captain promises to look out for her-they are from the same class after all and he can’t have her falling in with the uncouth sailors-until it becomes clear that the men are going to stage a mutiny and she eventually realizes that they had just cause because the captain is cruel. She decides to join the crew, who have justified suspicions about her initial closeness to the captain, and so is presented with an initiation rite to solidify her place and her protection with them. She has to climb the tallest mast up to the crow’s nest and back down again.

It’s a terrifying task. The heights alone are bad enough to frighten anyone her age, much less the rough and unstable rigging. The swaying of the ship becomes more and more pronounced the higher she climbs. At some point she realizes that her reward for braving this seemingly insurmountable obstacle is that she will have to do this same impossible thing multiple times a day as part of her work for the crew for the rest of the voyage. It truly seems unthinkable until it is done. Then it becomes just part of her life.

We keep being presented with terrifying or incredibly difficult tasks where the reward for facing them is that we get to keep facing them over and over, but with now some new measure of familiarity and experience.

About a month ago I took my first COVID test because I was symptomatic. With all my chronic illnesses, with all my pain and fatigue and prickly skin and fog throughout the years-even when I went to the ER with chest pains and had to rule out a heart attack and even when I’ve had walking pneumonia- I have never had shortness of breath. I have never felt like I was gulping for air, that every few breaths I had to concentrate to consciously expand and fill my lungs against the constriction of my ribcage. I asked my doctor if taking a COVID test was appropriate and she sent me to their respiratory clinic-a converted immediate care center where I was to wait in the car when I arrived so that the whole staff could get into multiple layers of PPE. When I was allowed in, I was the only patient, and was given a second mask to go over my cloth one. Plastic sheeting narrowed the lobby into a ribbon of a hallway so that all the soft surfaces of the waiting room had a barrier between me and them. I told the doctor all of my symptoms, as much of my backstory with chronic illness as I could. We did a chest x-ray in another thoroughly sterilized room. It was explained to me that this particular COVID test doesn’t have false positives but there is a ten percent incidence of a false negative, so even with a negative I would need to quarantine for ten days after being symptomatic. At the end of the appointment I would take the test by driving to the back of the building and sitting in my parked car, head leaning against the headrest as the nasal swab went further up than I expected. I went home, had my husband get my brand-new prescription inhaler from the pharmacy. I limited my movement inside my own house so that I had less contact with my kids, wiped down everything I touched and waited two tense days for the negative result.

I was terrified. From years of doctors not taking me seriously I was terrified to speak to a new one. From years of chronic illness I knew that if I had contracted COVID that it might be horribly difficult to fight off. I might not be able to. From years of my children covertly worrying about my health I knew that this could wreck any emotional well-being we had carved out of isolation and disruption. The building I went into for care looked like the set of a horror movie where I was not meant to make it past the first act. The idea that I might have been around other people who didn’t have fifteen layers of protection between us felt like the worst mortal sin I could have carried. Not knowing what was causing my shortness of breath sent me into a purgatory not knowing how long I might have to live in not knowing-it might have been forever.

Now? The memory of feeling so terrified that day that I couldn’t silence alarm bells pounding through my brain has faded just a few weeks past my quarantine ending. I don’t know and can’t say whether it becoming a normal “something-I-did” is psychologically healthy in the long run, but it is protective now. I have data in my mind of what would need to happen if I was sick again, or if one of the kids was, or if someone else in my family was. I would not need to contemplate every foothold and rough rope as I climbed a second time, experience would have given me ease with something I would rather have absolutely no familiarity with at all. But that choice wasn’t up to me. My reward for doing something terrifying is that I would know how to deal with it myself again, or be able to carefully shepherd someone else I love through the process.

So quickly, so rapidly, the circumstances of our lives have changed. Our understanding of the world has changed. In some ways, irrevocably. Some things that have needed to change have finally broken open. Just like the mutiny on Charlotte’s ship, building wealth on the broken backs of people you couldn’t care less about has inevitable consequences. Some things that should never have come to pass are terrifyingly present and a clean cold light is shining on them. For example, a country’s leader who barely looked up from a Tweet or a golf club as 160,000 of his people died. I marvel pretty much every day at some new understanding or revolution or horror that in ordinary times would have been years in the making (or undoing) but now happen and become a new reality in the blink of an eye. Because it’s all so fast it’s exhausting and hard and it’s difficult to give each moment the depth and detail of exploration it deserves. But it all changing so rapidly gives room for new ways of thinking about ourselves, our world, how we have always operated within it and whether that is at all acceptable to our souls.

We keep climbing to the top of the main mast, gritting our teeth against fear, keeping as intense a focus as we can on splintering wood or fraying knots or the wide gap between footholds big enough to swallow us up if we slip. And when we get to the top and realize we are proved capable of doing what seemed impossible just a little while before, there is some exhilaration and freedom to look out from those dizzying heights to see ourselves and the world differently. When we come back down to the deck there are crew members who have become friends waiting to do this hard work every day. We now belong to each other in ways we hadn’t before. Our reward for facing down the impossible fear is to keep showing up, to keep facing it for as long as it takes with other people who are showing up with us to do the same.

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.