By the side of the pool while the kids had swim lessons. If we got there ten minutes early and it took five minutes to slather on the sunscreen and five to stake out a spot in the shade and fire up the lap top I could usually get 40 minutes of writing in a go. 40 minutes a day, for two weeks straight, Monday through Friday.
In the lobby of the rec center, both before it was refurnished and it had a sickly green glow and after when it had attractive splashes of green on the walls. The boys are learning how to play chess once a week in the deepest darkest parts of winter.
At a local Buona Beef where I holed up in the covered patio section that is too cold in winter and not as well-ventilated in summer and so fewer people mind if I take up a table for an hour. I try not to drip ketchup on my notes or phone or laptop but keep eating fries as I type, licking salt off my fingers as I pause to think.
At soccer practice where I can only take my laptop out on days that are so overcast there isn’t a glare on the screen but it also isn’t so cold that I need gloves. There are no trees for shade, just an open windswept field.
In the school parking lot. I would on the coldest days or the rainiest get to the lot before it was closed to busses, a half-hour to forty-five minutes early. I would push the front seat all the way back, put a sweatshirt on my lap to raise the computer up and type until the last bell was three minutes away, hit save quickly and rest it on the passenger side seat.
At the pond, while the boys fished with Greg and I found a shady spot. The grass tickled my bare legs and I would stop only when an ant traipsed across my thigh, or a neighbor passed by or a bluegill was caught.
In the hallway at basketball practice where my youngest and I would escape the squeak and frenetic pace of the team doing passes and jump shots and layups. We would make a nest of coats to support our backs.
In the backyard when I needed to keep an eye on water fights.
On the couch with one eye on the TV as the boys shared their favorite Wild Kratts episodes with me.
In bed, a feverish kid napping next to me, reaching out a hand every so often in his sleep to reassure himself that I hadn’t gone anywhere.
At the doctor’s waiting room, a fifteen minute stretch ahead of an appointment.
In the notes app of my phone in the sauna at the gym.
At a baker’s rack converted into a desk set in the corner of our living room.
At a card table next to our Christmas tree.
On the other side of the tempered glass between the gymnastics equipment and the rows of chairs where the parents could watch. One class, instead of writing I had a conversation about writing. A ninety-year-old great grandmother who was visiting with family for a day asked if I was a writer, because she was too. Her attention fell away from her preschool-aged great granddaughter and to me as she glowingly told me about her career as a journalist and later a producer. And how she had never received a single rejection, not once, not ever, until this very year.
At a library table on the quiet floor, situated between architecture books and books written in Japanese.
At my own desk, in my own home office, during school hours.
In a notebook, sitting on the curb in a park, a stroller with a napping newborn to my left and a preschooler playing hide and seek with his uncle in the playground to my right.
At my own desk, in my own home office, during summer vacation. The boys are old enough to occupy themselves happily for at least an hour, probably more. But the youngest does come up to announce that he can’t find the remote control truck’s remote control, but not to worry myself because it isn’t that important he just wanted to let me know.
I took a little writing break for about a month to take care of…lots of things. I know I haven’t written here for a bit. It’s taken me until today to change the header for this website from winter to spring! Which, to be fair, keeps bouncing back and forth. The week before Easter we had six inches of snow. On Easter it was 70 degrees out. My birthday this last Thursday was gorgeous and sunny, and then five inches of snow on Saturday collapsed our outdoor canopy. Bolts sheared off, metal twisted. It is a pile a scrap metal now. The weather is erratic and doesn’t help anyone feel more stable, that’s for sure.
Anyhow…Since I wrote here last I have been writing a bunch. It’s just in forms I can’t share yet. I 100% finished the manuscript for my essay collection in January/February. Then I completely restructured its order and added in a few essays that I had planned to include in the book from the very beginning, but somehow had forgotten to write. At the same time I was polishing pitches for #PitMad and #DVpit on Twitter, drafting query letters, finishing a full book proposal, and researching agents. By mid-March I paused on writing to catch up on every other non-writing thing that needed to happen.
In that month my dad had an unexpected hospital stay and surgery, my youngest turned ten, my oldest won a basketball tournament, I turned forty, my husband got to be home for a full week without traveling for the first time this calendar year. We started soccer and finished band and had a spring break and hosted a birthday party and went downtown in a snowstorm and caught my husband up on Avengers so that we can see Endgame next week. There was a science fair and field trip in there, too. There was Babesia treatment that I postponed too long and I started to feel bad again.
A lot can happen in a month. A random goofy tweet went mildly viral, and a more serious thread about disbelieving pain patients got noticed. I printed up pictures for our family albums, but didn’t get them into albums. Downloaded pictures off my phone, but didn’t get the phone replaced yet. Cleaned my office, but didn’t donate the box of donations that sits behind my desk chair. Meant to exercise more, but couldn’t. Watched Beyonce’s Homecoming. Read the Amulet graphic novel series with my kids. Cooked more than I had been, but only 1/10th of what I wanted to.
Life is busy and full and chaotic and I thought, somehow, that by doing a bit less in one area, that would be enough to patch up all the holes in all the other areas of life.
It is not.
A month of doing a little less in one area didn’t leave me refreshed, and it didn’t magically give me time and energy to figure out how to manage everything better. It just made me realize that I have been running at full speed for so long that I accepted it as normal and what should be happening. It also made me realize that writing was one of the few things that gave me an emotional and creative outlet and a place to process my thoughts-it isn’t enough, but without it living my life is harder. So, kind of like exercise, it takes times and energy that seems to be in short supply but I have to factor it back into a regular routine.
So back to it. Back to writing (some here, some elsewhere) and back to exercise.
I’m gonna post this, eat, exercise, stare into space trying to remember the to-do list I keep forgetting and try to keep moving.
2018 began with an e-mail letting me know that the results of my Lyme test were in my patient portal.
I wouldn’t have my follow-up appointment with my doctor for another few weeks to let me know what to do about it, but there the results were. Positive. I hadn’t been mentally prepared for it, not really, even though my personal medical intuition-informed by literal years of reading about anything and everything related to my symptoms-had been honed to a sharp blade and I was rarely wrong anymore. I sought out a Lyme Literate doctor because by September of 2017 I was pretty damn sure. I wanted very much to be wrong. No one really believes in Lyme as a chronic illness. Tests are not the most accurate. The treatment is often not covered by insurance and treatment is physically hard on your body. The science is not 100% there…yet. And if I gave myself over to a treatment that amounted to nothing more than potentially hazardous snake oil? My credibility as the expert on my own body and competent caretaker of it would be shot through with doubt. I was not sure I would trust myself again if this went wrong, nor was I sure that other people would or could or should trust me on matters of my own illness. That was excruciating.
My husband and I talked about it a great deal. We talked with other people who had personally gone through diagnosis and treatment and had good results. I had a doctor who was insistent from the start that we would never overwhelm my body with more medication or supplements than I could take, that this was never going to be a miracle cure-I would always still have Lyme, it would just be an infection that was appropriately kept in check, that I had final say over what course of treatment I consented to-and that she would never pressure me into consenting to something I was wary of, that the goal was to get the infection (actually infections, as I have Babesia as well) in check and get me off of antibiotics and supplements sooner rather than later.
Do you know what it means for you to have faith in a doctor when so many failed to help you? There was only one doctor who was outrightly belligerent to me when I desperately needed help. Most of my overwhelming disappointment with doctors was that I would have a life-altering symptom, we would run the standard tests to see what the matter was, and when I walked away I would have a few negative tests results and a shrug. No information about how to control my symptoms. No clues as to what went wrong in the first place. Just shrugs. Doctors only spend every waking second trying to solve a mysterious diagnosis on TV shows. Most of my doctors were well-meaning but overworked, experts in difficult and widely known diseases I didn’t have that occupied most of their research time, and specialists who are dealing with different body symptoms who rarely consider that pelvic pain and hypoglycemia and hives and plantar fasciitis could possibly belong to the same systemic problem. I never gave myself over to unquestioning faith in my doctor, but I began to let myself have some faith in her.
I started treatment in late January 2018. I want to say I tapered off of the majority of my supplements and medicines by mid-March. The whole of February I spent the first half of every day in a haze, a fog so thick I mostly ate and sat and slept. I would take the kids to school, then take my medicine, then deal with the fog. By early afternoon it would lift. I would get the kids, complete the few tasks we needed completed to keep our world running and rest again. I recently looked back at pictures where I didn’t hide behind make-up. I looked grey. My face and lips and eyes looked like the color was drained away. I wore my softest clothes and binge-watched a lot of TV, something I’ve never really done being normally just a bit too restless for that. When I stopped the bulk of the serious medication, I kept on with maintenance supplements for a while. Many of my most problematic symptoms had faded away. Slowly I began working back up to my normal life (and my oldest broke an ankle just a few weeks after I stopped the bigger part of my treatment, so normal life wasn’t normal until about June). I still looked grey in early May. By one each afternoon I would fall into a dead sleep.
By July I realized that I passed out nearly in a dead faint after eating gluten at lunch, shaking with sudden chills, unable to stand upright. There is more to the story than that, but I’ve mostly told that story in an earlier blog post. Since August my youngest and I have been gluten-free. And my immune system seemed to come back on line. It sent my body for a loop. Suddenly immune-regulating medication I was on was dosed too high, and hormone replacement therapy I was on was dosed too high and I had skull-crushing headache verging on migraines for weeks at a time until I finally got the appropriate doses figured out just these last couple of weeks.
And I feel…good.
More often than not, I feel good.
I had given up on that ever being possible.
One thing that most helped me realize that I could trust that going into treatment was going to be the right thing to do? It’s that I had done a lot of work over the last several years to work through the grief of being sick and I had come to accept that my life-my smaller, less capable life-was absolutely still a valuable one. I really had accepted that feeling good might never be a possibility again, and I had made some amount of peace with that. But my heart-my heart was struggling to beat as quickly as it should have been. My heart was slowing down to dangerous levels. I had decided both that my disabled ill life was worth living and that it was in danger that needed to be addressed.
Lyme can infect your heart.
I wasn’t looking for a miracle cure, one that would let me climb Everest once treatment was done. I wasn’t in a desperate place grasping at straws, clinging to gold-plated hollow promises that I could be “fixed”.
I was looking to stay alive, because I loved the life I had in the middle of illness.
It was in that place where a leap of faith was possible and as measured as a leap can be. I knew what cardiologist I was going to approach if my heart rate didn’t recover or got even a little bit worse. I had an EKG through the local hospital that told me that my heart was strong but slow for some (to them) unknown reason. Now, about a year later, my heart rate stays within normal ranges for a person of my activity level. My heart is now beating in a way that makes it more likely that I’ll survive the next year, and the next.
This has been my 2018. I’ve done a million other things in the meantime, but from beginning to end it has been a year where I listened, figuratively and literally, to my heart. There were risks where I gained rewards I literally didn’t think were possible a year ago. There were risks that could have made this coming year a one of recovery from very bad failure. This isn’t prescriptive. If you don’t need to jump, maybe don’t? That leap can be very dangerous. Whatever your leap of faith is about, if you’re thinking about that leap, don’t go about it willy-nilly. Don’t jump with your eyes closed. Weigh everything. Research, examine your mental state, your motives, don’t jump out of a plane without checking your equipment five hundred times. Have contingency plans, and be cautious. But, if you’ve done all those things and you still find that the risk-whatever that may be- is worth it, I certainly can’t tell you to always play it perfectly safe. I didn’t. For once that worked out better than I dared hope.
I want to start with a brief apology. I haven’t been here on my website blogging in a real way for a while. It’s become a place where I shoot off a brief update every one or two months, and maybe you’re curious about what’s going on with me, but this isn’t maybe what you signed up for. I honestly am hoping that with the new year I’ll have a bit more time for the sorts of posts I want to do: mini-essays. I’m not there quite yet. Let me quickly explain why.
My essay collection/memoir about living with chronic illnesses is nearly complete! I have a few more chapters that need to be begun from scratch, and about ten that need minor revisions, and one that needs a complete overhaul. But, I will most likely be 100% complete (just a touch over 80,000 words) before Christmas. The next step in the new year will be sending it to beta readers (people who aren’t close to the manuscript who give you notes), querying agents (an agent is really important for traditional publishing) and completing a book proposal (some agents request book proposals-something you usually write before you write a non-fiction book outlining what it will be about). My daily writing time will be mostly spreadsheets and paperwork at that point, as you set your hook and see if you get a bite. Writing is a long process, and from what I understand of it, publishing is a long process.
This weekend I used some of Greg’s hotel points to stay in a room in town for 24 hours, writing as much as I could in that time-frame. In all I wrote 3,112 new words (over four new essays), revised seven essay/chapters successfully and revised one unsuccessfully. Not bad. I did have to take quite a few breaks before I felt sick. Luckily the lobby was nice and had excellent people watching.
There were two galas happening at the hotel (which was fancier than I expected). One was a black tie/sequined evening gown/fur coat affair. The other was for Gigi’s Playhouse, a support organization for children and adults with Down’s Syndrome. I met teachers who work for the org in jeans and t-shirts in the elevator, wine glasses in hand, heading up to their rooms to change into the dresses they bought for the night. The teachers were my people-a lot less pretentious than the tuxedos and a lot more fun. There was also some sort of pyramid scheme sounding seminar happening that weekend-and I steered clear of that altogether.
And with all the normal bric-a-brac of life-like colds and lessons and clubs and groceries-it is of course the holidays again. Otherwise known as the time of year I fall in love with food writing again. I devoured the latest Bon Appetit and want so much to spend all day tracking down recipes and watching Food Network and writing about food traditions and finding a fun new recipe to try out. Last year it was the NY Times cranberry curd tart (which a good friend of mine had made, unbeknownst to me, as well) which was lovely, but time-consuming, and the hazelnut crust made my allergies flare. We host Thanksgiving (I think I mention that every year-I swear one day when I can’t host I won’t know what to do with myself late November) and this year we’re hosting Greg’s family for Christmas day. There is shopping and cooking and concerts and a whole bunch of other stuff to accomplish.
Then there is my health. So much steadier than other years, however I still am having to tweak medications every week. The ENTIRE time I was writing last weekend, I had a skull-crushing headache. My med dosages were off. Anxiety about not being “productive enough” seemed to have knotted my back, and kept me awake too late and then the next morning too early. It was lovely to have the means to do this (the first overnight trip away from the kids in five years) and to have uninterrupted time-but I was still sick the entire time I was trying to yank a ton of emotional work out of my body. I am sick less often and in more manageable ways than I have been in eight years, but I am still not “healthy”. I have to remind myself of that when I beat myself up over, say, not getting good blog posts out in a while.
But here is an update. I haven’t fallen off the edge of the world, I still exist (though the social media algorithms have abandoned me for not posting as regularly as I used to) and I am keeping busy with things that I hopefully will get to share with you. And I hope to get back to my mini-essays that don’t fit neatly into a book about illness, on whatever I feel like writing about!
Today is Election Day in the United States. Voter participation is up in record-breaking ways already. The lines may be long today, so I thank everyone who sticks it out to participate in our representative democracy. It has it’s flaws as a system, but it is our system and right now it is a way we can peacefully neutralize some of the worst that has happened in the last two years.
If you care that we allowed 3000 preventable deaths in Puerto Rico, please vote.
If you care that the word “transgender” was stripped from official documents, please vote.
If you care that every time a mass shooting happens the government pretends that there is nothing they can do to help, please vote.
If you care that disabled and chronically ill people would die without health care, please vote.
If you care that black people are being executed extrajudicially by police officers, even in their own back yards holding a cell phone, please vote.
If you care that asylum seekers are being separated from their children and that they are being imprisoned indefinitely, and that TWO YEAR OLDS HAVE HAD TO REPRESENT THEMSELVES IN COURT, please vote.
If you care that our government has targeted Muslim people from coming to our country, even needing asylum, please vote.
If you care that we are doing nothing to prevent climate change and are selling our national parks to the highest bidder for profit, please vote.
If you care that our education system is being run by someone who doesn’t believe in public schools, please vote.
If you care that white supremacists have been emboldened once again, please vote.
If you care that a credibly accused, emotionally volatile man is now sitting on the Supreme Court, please vote.
If you care that the president has played nuclear chicken with North Korea, please vote.
If you care that we left the human rights committee of the UN, please vote.
If you care that our executive branch has lied thousands upon thousands of times in the last two years, please vote.
If you care that the executive branch has been nothing but a money-making scheme for the richest one percent, please vote.
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.
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!