Scream

Some days, I just want to scream.

Most days, I want to scream. But some days, that want becomes a need.

Today was one of those days: the “want” was born out of last weekend, when I spent far more time driving around, chasing down various food or recipe ingredients for my daughter’s wacky diet and expensive palate than I would have liked. I have a paper due in my Globalization in Education class, and I had imagined completing it over the weekend and being done with it.

Even after four or five years of getting my plans squashed into the dust without a moment’s notice, my imagination continues to be a healthy optimist.

After driving around most of the South Bay on Friday for one thing or another, I could have told my daughter I was done on Saturday. She is rarely selfish, even though she has every justification to be so, and even more rarely unappreciative of what it takes to care for her. But…cooking, the ideas for recipes, the planning, the research, the entire process of it–that’s what makes her happy. It’s what has always made her happy: she was in the kitchen inventing recipes by the time she was three. She couldn’t read yet, but wouldn’t be able to, not really, for several years, but it didn’t matter, and I never made it matter. I opened the cupboards and we talked about ingredients: flour and sugar, spices, sauces, acids, oils, She asked questions I usually didn’t even know the answers to, because I had honestly never thought about why chocolate chip cookies flattened if you left them in the oven too long or made them too large. I had never considered why shortening was better then butter in pie crusts. If there is one place I follow the rules, it is in the kitchen.

I love food, but I’m not exactly picky. I don’t eat bugs, things with heads, or live things. Otherwise, if I’m hungry, I will at least try it. In fact, I don’t even have to be hungry. It just has to include chocolate of some sort, frosting of any kind, or salt.

But she was. And so I let her figure things out. Yes, her process made a mess of the kitchen frequently, and her recipes were often inedible for one reason or another. But she delighted in everything she made, and she learned from everything she made. I was still making things the way I had always made them, and along came this five year old who started to tell me how to make them better….I was thrilled. I had fallen in love with her father in part because he made me cookies when we were just flirting and bought me Rice Krispie treats from the food trucks on College Avenue and made me stew for one of our early dates. The way to my heart has always been through my stomach, and here was my daughter, wanting to take over in the kitchen.

If I had never loved her before then–which was certainly not the case, but if I hadn’t–I would have fallen in love with her then. I’d happily clean up after her for the rest of my life if I never had to set foot in the kitchen again.

Of course, she was five, her interest waxed and waned, so I did, in fact, step foot into the kitchen repeatedly for many years.

And then she started to get sick.

The inner chef in her went to work: she broke down everything we ate and replaced ingredients. I may not have been the greatest chef, but I’d always ensured we ate fairly healthy–little to no junk food, or junk food made out of kale, juice without added sugar, dessert was not a staple, little to no fast food. We ate homemade dinners most nights during the week. We’d also been gluten and dairy free by that point, due to intolerances for all of us. But Autumn was determined to figure out the cause of her stomach pains, bloating and severe constipation and diarrhea.

When nothing worked, and she only continued to be in more pain and her health declined, she turned away from food. She felt it had betrayed her. She also felt like a failure.

That feeling didn’t get any better when I took her to Seattle Children’s Hospital and they diagnosed her with an eating disorder without so much as listening to our story.

She did have an eating disorder. She and I were happy to admit that. But it wasn’t because she thought she was fat or ugly. She was, in fact, 85 pounds and hated her body for betraying her. She wanted to eat, and she did eat, as much as she could, but it hurt, and some days she would lie on the floor and scream after eating.

She and I did the best we could with little information and absolutely no medical assistance.

She put on weight in SCH, because they wouldn’t let her move, and they shoved food down her stomach 3 times a day. She cried after every meal, sometimes screamed. They didn’t care. She wanted to scream after every meal; some days, she told me, the want became a need, and I would hold her in my arms while she would scream into my shirt or a pillow. They had told her if she kept screaming, they would move her to a ward where I wasn’t allowed to go. So she screamed in silence.

After Seattle Children’s, Autumn went back to the kitchen. She was determined she would beat whatever was going on, and the hospital had convinced her it was all in her head. That conviction would lurk beneath everything she did and said and thought and felt until the day she was diagnosed with Lyme. But she never left the kitchen. Cooking became all she had. When she couldn’t eat, she cooked for me. She would often cook for her brother, but he wasn’t fond of her attempts to get him to eat more vegetables and less meat.

Her delight is plain on her face when she is talking about food or a recipe or modifications to something that didn’t work. She talks food, dreams food, breathes food. She has had to drag in chairs to sit on while she cooks, or more recently, laid on the floor with her feet up to try and reduce the inflammation while waiting for something to boil. But while she cannot control what her body is doing from one day to the next, she can control her recipes: in the kitchen, she forgets, for a little while, about the truth of her life.

So, when she is having a good day, and she wants to find rare gluten free ingredients to create something she has a taste for, I will drive her to the ends of the earth.

I forget, for a little while, about the truth of her life.

And mine.

I do not deny I was meant to be a mother. Motherhood was another piece to the puzzle of me. But being a caretaker? A nurse? That’s a whole different level of maternal skill. Not all mothers can be nurses, and not all nurses can be mothers. I fully planned on being emotionally available to my children for the rest of my life. I just thought that, at some point, I wouldn’t have to be so very physically, mentally and emotionally available to them.

Some weeks are harder then others. The problem with being a mom, and a caretaker, is that much of the time, even if we have a partner, we have to scream in silence. Not out of fear that we will be taken from our children. But out of fear that if we start, we will not stop.

Today, I woke up wanting to scream. By tonight, after a clinic appointment went from twenty minutes to two hours because the home health nurse kinked the picc line yesterday, after my daughter’s babesia-induced migraine caused her to be both whiny, dramatic and demanding, after the dog got it up in his butt that running around the apartment barking like a lunatic was a great idea, after I went into my daughter’s bathroom–which I usually try not to do but it was unavoidable tonight–after I thought we were “done” for the night so I settled down to watch an online concert…..only to have the picc line jam again during an infusion and the dog being an ass and there being no chocolate in the apartment…..

The want to scream became a need.

I fixed my daughter’s picc line and restarted the infusion. I did 85 situps and 110 crunches and 48 pushups. I took the dog outside to run off his looniness. And I tilted my head back towards the stars and breathed.

It wasn’t screaming. But I was tired from the pushups, which was exactly the point, and the air was cool against my cheeks. My dog looked like an idiot horse amusing himself with his own tail, and the night was calm.

The need to scream settled back into a low humming want in the back of my mind.

Tomorrow I will be able to sleep in a little later, and I have no classes. I can finish my paper and take care of my daughter and even clean her bathroom without puking. Probably.

Maybe tomorrow will be a day I won’t need to scream.

Logical Nonsense

Lyme disease doesn’t make sense. That’s the long and short of it: it doesn’t make sense.

For the last fifty years or so, most physicians are trained in the Western, or traditional, medicine. Western medicine professionals believe in using conventional therapies to cure or prevent sicknesses: lifestyle changes, counseling, physical therapy, surgery, and what has become the most important with the creation of Big Pharma, medication. Physicians trained in Western medicine–which is almost every doctor your insurance company will want you to seek out, if you want to reap insurance benefits–aren’t trained to be scientists. They are trained to be fixers.

It sounds great: when our bodies are broken, we want them to be fixed. And quickly. None of us have time in this world to sit around and let doctors run tests on us, try out medications and therapies and lifestyle changes to see which works best. We want to be FIXED. We want a label for what is wrong with us and a plan for how it will be remedied. We, and our high expectations of our healers, are as much to blame for doctors who hand out pills like candy as are the insurance companies for insisting we go to an MD first before anything else, as are the pharmacy companies for wining and dining physicians into believing their pills are the next big thing. We are responsible for this endlessly churning industry which we have created–we and our demands that our bodies should be perfect and, if they aren’t, there is a fix for that.

Lyme disease, and the multiple co-infections that go along with it, cannot be “fixed.” At least not for everyone. And unlike cancer, which gets a lot of press and publicity because it is defineable and logical and in many cases predictable, victims of Lyme Disease die quietly, often without Lyme even going on their death certificates because, technically, it is not Lyme that killed them but liver failure or acute respiratory failure or suicide. According to a 2017 paper published in peer-reviewed Neuropsychiatric Disease and Treatment, “suicidal thoughts in patients with Lyme and other associated diseases may provide context for the thousands of unexplained suicides in the United States each year” (Ferro). 

The problem is that Lyme disease just doesn’t make sense.

Lyme disease was “discovered” in 1976, when the investigation into mysterious cases of arthritis and juvenile arthritis as well as other inexplicable symptoms throughout several towns in Connecticut culminated in the naming of Lyme as the culprit by the Connecticut State Department of Health and Yale School of Medicine . This study also suggested ticks to be a vector, or method of spreading the disease. Although 1976 was the first date in modern medicine when professionals took notice of the random, inexplicably unconnected symptoms experienced by patients, Lyme has a history in North America: “[c]olonists and visitors to North America in the 17^th and 18^th centuries wrote about the prevalence of ticks in forested areas of the Northeast as well as people suffering Lyme-like symptoms” (https://igenex.com/tick-talk/the-history-of-lyme-disease/). For a long time, it was thought that Lyme Disease was confined to the East Coast and open spaces in the Midwest. But in 2017, the Yale School of Public Health sequenced the DNA of the Lyme disease bacterium, aka Borrelia, and traced its presence in North America at least 60,000 years.

In contrast to the given Lyme Disease rhetoric, Borrelia burgdorferi sensu stricto has been present in North America since long before Europeans arrived on the continent and possibly longer then humans arrived on the continent. “The researchers concluded that the bacterium most likely spread from the northeast U.S. to the south and west to California. This confirms that in the U.S. today, Lyme disease is not limited to New England but is in fact present in all 50 states” (https://igenex.com/tick-talk/the-history-of-lyme-disease/).

One would think that, after all this time, medical professionals would recognize seemingly unconnected symptoms without a clear cause as potential Lyme Disease.

But like I said above, Western medicine schools of thought–so, basically, any accredited medical college in the United States–says if you are experiencing arthritis, you have arthritis. We give you pain killers, maybe sterioids to reduce inflammation, physical therapy to encourage better joint movement and therapy to help you accept the fact that you have arthritis. If you are experiencing depression, you have chronic depression: pills, therapy, maybe a vacation. If you are experiencing constipation, you need to eat more fiber and take over the counter laxatives.

None of these things can possibly be connected. And even if they are, if you actually come in within the crucial two weeks after getting bitten by a tick because you were either aware you were bitten or discovered the bulls-eye rash, antibiotics will certainly kill the little buggers who are trying to set up shop in your weakest organ system, whichever that might be for you. Antibiotics are the nuclear weapons of modern medicine.

The problem is, sometimes people are aware they were bitten by a tick and get antibiotics quickly and are fine. Others are fine for awhile and then start to experience Lyme disease symptoms, even though the antibiotics should have killed all the borellia. Still others have no idea they were every bitten by a tick–the majority of people actually don’t develop the classic bulls eye rash we are told to look out for–and will go throughout their lives actually having Lyme disease but not experiencing any symptoms. And others will be crippled by Borellia creating summer homes along their digestive tract and eventually subletting their nervous system.

Some people will go into remission for their entire lives after effective treatment. Others will spend their entire lives looking for effective treatment, just to feel a momentary relief.

And others will kill themselves because they are so tired of the pain and the fatigue and brain fog and lack of understanding by the medical community and, often, their friends and family.

Lyme disease isn’t cancer, which may not effect everyone along the same timeline, but almost always supports the same symptoms. It’s not Alzheimer’s, which for the most part presents along a very definite timeline, although specific mental capacity may be different for every person. It’s not really anything that can be tested for because, depending on the person, depending on the duration of their illness, depending on where they got the tick bite and what time of year and what kind of tick it was, lab tests for Lyme can be positive, negative, or false positive/negative or all of the above.

Even the CDC, “which recommends that only a specific pattern of antibodies, agreed on by experts in 1994, be considered indicative of a positive test—suggests that, when needed, doctors should use their judgment to make what’s called a “clinical diagnosis,” based on symptoms and likelihood of exposure, along with the lab tests” (O’Rourke).

In Autumn’s case, the medical community’s insistence that Lyme doesn’t “exist” in the part of the country where we lived, added in with a heaping pile of sexism and ageism, prevented them from actually hearing us when I began suggesting her various multiple–and multiplying–symptoms were Lyme.

“Do you hike alot?” one doctor asked me.

“Not a lot, but we’ve been hiking–“

“Have you ever noticed a bulls eye rash on her?”

“No, but I could have missed it. She might have seen it and not told me. She’s never liked coming to the doctor. She would totally hide that from me.”

“If you never saw the rash, then she can’t have Lyme.”

“Is it possible that she had the rash and we missed it? Is it possible she’s weirdo and just never got the rash?”

“No. You’re not making being logical.” That doctor, as many who followed would be, was adamant that without the rash, there was no Lyme. “Diseases have rules,” they said. “Lyme doesn’t make sense for what is going on with your daughter.”

In actuality, as we were to find out, it is Lyme disease itself that doesn’t make sense.

Maybe someday, Autumn’s story will make it’s way back to those doctors who told us a Lyme diagnosis wasn’t logical, and they’ll realize it was they that were full of nonsense.

References

Ferro, John. “Suicide: Lyme Disease’s Less Understood Outcome, a New Study Says.” Poughkeepsie Journal, Poughkeepsie Journal, 7 Aug. 2017, http://www.poughkeepsiejournal.com/story/news/health/lyme-disease/2017/07/19/lyme-disease-suicide-bransfield-study/483959001/.

Jackson , Aaron J. “When Doctors Don’t Listen.” SAPIENS, Michelle Jones/SAPIENS, 13 June 2018, http://www.sapiens.org/biology/chronic-lyme-disease-treatment/.

O’Rourke, Meghan. “Lyme Disease Is Baffling, Even to Experts.” The Atlantic, Atlantic Media Company, 6 Nov. 2019, http://www.theatlantic.com/magazine/archive/2019/09/life-with-lyme/594736/.

Schwartz AM, Hinckley AF, Mead PS, Hook SA, Kugeler KJ. Surveillance for Lyme Disease — United States, 2008–2015. MMWR Surveill Summ 2017;66(No. SS-22):1–12. DOI: http://dx.doi.org/10.15585/mmwr.ss6622a1external icon.

“The History of Lyme Disease.” IGeneX, 15 Apr. 2020, igenex.com/tick-talk/the-history-of-lyme-disease/.

Adventures with Lyme

It has been a horrible day, fraught with rage and tears and fear and anxiety, filled with noise that I want to run from, conflict that shatters my soul. And yet, in the here and now, lying on the couch half asleep while my son chatters in Japanese about memes and my daughter browses candles on Bath and Bodyworks, I don’t want to be anywhere else. I don’t want to leave tomorrow. I don’t want to have to wake up and do it all over again – take my daughter two states and twelve hours away from the only home she knows for medical treatment we fought for in our home state for over four years, medical treatment that isn’t all that revolutionary or even risky- just not taught or widely researched, so the majority of medical professionals don’t understand it and choose ignorance over education.

Three months before, finally reaching a wall we could not scale in our home state, and with my daughter at a peak of desperate need for medical treatment, we left home to live in a rental house in San Francisco. We spun it as an adventure, a chance to live somewhere different, to experience new surroundings, maybe even to meet new people, if that was possible in the midst of a pandemic that had most states under social distancing advisories. My son stayed behind. As much as I wanted him to go with us, at twenty, he has his own life, and he never liked travelling anyway. We had spent the year before in a rental fifteen minutes away from our home because of a housefire. My son had longed for the day we would return home and, now we were there, he wasn’t budging. Besides, as he pointed out, then I wouldn’t have to pay to board the two cats.

Often, my teaching him to think logically and critically from the time he was a toddler backfires on me.

My daughter and I had been gone since October. It was now “Winter Break,” and she had desperately wanted to come home. But once we got there……all the things she had been and done “before” came rushing back the moment we reached our home. She had fooled herself into thinking she was “better” then when we had left. She was, in comparison to what she had been that previous summer. But not in comparison to the highly spirited, energetic, firecracker of a person she’d been before she got sick. And that girl–she was everywhere in our home, everywhere in our town. Much like when I hadn’t realized how much cigarette smoke hung over my childhood home until I’d lived smoke-free for three months in my college dorm, she hadn’t realized how much she’d been living with a ghost until she’d lived free of that ghost.

And that was when she broke.

When I break, I crawl under a blanket with a tumbler of vodka and soda, watch movies about hopeless situations until I cry and then sleep for fifteen hours. I project inward. My daughter projects outward. She would not be the one ensuring everyone got off the Titanic before her. She would be the one making sure everyone went down with her.

That was how it had been from the moment she was born. Her brother and I loved her dearly, as one loves an amazing fireworks show. But we’d long known the ramifications of what happens when too many fireworks are lit at once. And you are also standing within arm’s reach of the fireworks….

It had been a long couple of weeks. We were leaving for San Francisco earlier then we had planned. It was best for everyone. I knew that. But in this moment, when everything was calm and for just a long second I could pretend our lives were exactly as I had envisioned them once–peaceful, calm, consistent–I didn’t want to do what was best for everyone. I wanted to do what was best for ME. Even if I wasn’t quite certain what that was.

My son stopped his rambling in Japanese to glance at me. “You OK, Mom?” he said.

I met his gaze. “I wish we didn’t have to leave you.”

He nodded. “I know. I wish I could come with you. But it’s better for you two and for me this way.”

“Yeah,” I reply. “I know.”

“Mommy is the best mommy in the entire world!” my daughter says without looking up from her online browsing.

“I’m any mommy,” I say, as I’ve done a thousand times before. “What else would I be doing?”

“True,” my son, the rational one, says.

“Having the wild sex,” my daughter, the firecracker, says. “Going out every night and getting drunk and dancing.”

My son is laughing. My daughter is dead serious. It’s totally what she would be doing if she were a healthy 17 year old. She has always been very clear about that. One of her favorite games with her best friend as a 4th grader was “Sneaking Out,” in which they had me sit in the living room or the kitchen while they tried to find ways to get past me to the front door quietly. “Practicing for when we are teenagers,” they both said.

At least Lyme disease has relieved me of that particular stress…

“Believe it or not,”I tell her, “there is nowhere I’d rather be.”

It’s not always true, for her or me or any of us, and she knows that.

But in that moment it is, and she knows that, too. They both do.

And in this life that is wholly unlike anything I ever envisioned or imagined or expected, every moment counts.

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Ready, Set….Disengage….

Disengaging from what I love doing is harder than I thought it would be.

I also truly believe I can do everything, so even while I am disengaging, there is a voice in the back of my head saying, “You didn’t have to take this time off….you could have managed.”

The last time I fully disengaged from anything of any sort, I was 20, and my boyfriend paid for my expenses that summer so I could just….read. And write. And not work for the first time since I was twelve. It was a gift of the likes that no one had ever given me before, and while he continued to give me gifts of that sort, he started to have expectations of gifts in return. His “gifts” became no longer freely given, but conditions that we swore we’d never put on each other.

But that summer….I was just free. It was scary, trusting someone to pay for your rent and your utilities and your food and your tuition. For your LIFE. Without anything expected in return. And it was weird, not having to BE anywhere that summer. Not having any expectations of me except those I put on myself. Not having to think of anything that I didn’t want to think about. Reading every book I could get my hands on in a single day and then still having time to write.

I left the “world” again when my then-husband and I moved to Seattle from Chicago, but that wasn’t quite the same. I was actively shopping for houses, and then setting up the house, and then being a stay-at-home mother. It wasn’t so much that I had “disengaged” so much as gone from being a paid Corporate Headhunter/Human Resources Administrator to an unpaid CEO of Present and Future Goals.

Since being a mother and wife, and then mother and ex-wife, and then mother and single working parent, I can’t say I’ve ever truly disengaged from….anything.

There’s a voice in my head–I call her Pompous Patty–that has, until now, not allowed me to disengage.

Last Wednesday, I left my classroom to start a four week leave that would, with Winter Break, basically be six weeks. I walked out missing “my” kids and our nerdy History fun already, but knowing this break was needed. My family and I had a fire in our house earlier that month, and then my daughter, already in precarious health due to abdominal pains in part caused by her autoimmune thyroiditis and the medication she was on (we didn’t know that then), spiraled down to a point beyond self-help, and I admitted her to the hospital.

Living in two hotels in two weeks while trying to find a rental house and driving back and forth to the city to stay with my daughter every night while teaching full time and still trying to make sure my son didn’t feel neglected or lost in the shuffle drained me of every last bit of energy I had. And that’s saying a lot, given usually when my bones feel like jelly I just need a day-long nap to restore what even I admit is sometimes a scarily boundless source of energy.

I signed my Request for Leave papers without hesitation. Even if my daughter was released from the hospital earlier than we all expected at that point, she was going to need home care. Some of her spiral had happened because she was alone so much during all the mess. And while her dad did fly up from San Francisco to help while she was in the hospital, and he did offer to stay in Seattle as long as was needed, he had just started a job he’d been wanting for years. I was here. I had leave. And I’d been selfish before when it came to my daughter: when her dad and I had first started down the path to divorce, I wasn’t there for her in the way she needed me to be. I’ve forgiven myself–I was honestly doing the best I could do; my family of origin took from me as much as they gave, and my two best friends who I would ordinarily seek support from had their own issues and wanted nothing to do with mine. I was alone, suddenly and very, very much so, and it was all I could do to NOT just run.

This was my chance to do the RIGHT thing for my daughter.  Not the thing I could make work–because, yeah, I could keep working full time and find a way to give her what she needed. I always do. But I’ve failed her in giving her what she’s WANTED.

Then my students started emailing me. They wanted to know how to get access to the textbook online for the “test” the next day. They wanted to know why they were having a test when I promised them they wouldn’t be having tests while I was out. They wanted to tell me the sub was letting so and so sit next to each other when we as a class had agreed that was a bad idea for everyone–even so and so. They wanted the sub to stop telling them what they already knew. They wanted the sub to let them teach, as we’d been doing in class lately–and they were good at, and they loved it. They just wanted me BACK.

And that voice kicked on in my head: “You could have made this work. Autumn is FIINEEEE. Liam will be home starting next week. You abandoned them. You could have made this work without hurting anyone.”

Which is a lie, and always has been a lie generated by Pompous Patty.

The problem with Pompous Patty is she doesn’t look out for ME or MY kids  She looks out for other people, because she’s super concerned with how we “look” to the world, and what people think of us. She’s pompous AND insecure. It’s annoying.

She was there when I disengaged some thirty years ago and sat around all summer letting my boyfriend pay my way. She called me a whore and a loser and a lazyass. I went back to work early because I didn’t want to listen to her anymore.

She was there when I left work 19 years ago to be a mother, and she pretty much ruled me after I went off my anti-depressants through the point where I screwed up post-divorce when it comes to caring for my kids.

My regular yoga practice keeps a handle on her as do my anti-depressants, which I happily take every day now. But times like these, Pompous Patty really tries to rule me again. She always wants me to think of others before MINE.

Last night, Pompous Patty and I had a little talk. Well, I talked, and then I stuffed her in a mental box with a heavy chain lock.

I don’t need her. I don’t need to worry about the world or what it is thinking about me. I don’t need to worry about the sub–she is experienced and creative and probably cannot roll her eyes back as much as I can, because I am one with my 8th graders–they are my people, after all–but that’s not necessarily a bad thing.  It wouldn’t do my students any harm to have a grown up teaching them for a little while.

I need to take care of my family.

 

 

 

 

 

 

 

The Truth Is

for my daughter, the bravest person I know, and for JP, also braver than me, who told me to

This is the reality of chronic pain: you are in pain all the time, all day long, to the point where sometimes you aren’t even sure if you are still in pain.  The pain has become part of you, like a limb, if that limb had its own agenda and didn’t pay any attention to your brain’s attempts to control it. You want so badly to NOT be in pain, you are willing to pretend you aren’t.  You are willing to paste a smile on your face and talk to your friends and when they ask, “How are you,” you say, “Fine,” without a moment’s thought.  Because you WANT to be fine. You want to be OK. You want to be “normal” and just go about your days laughing at stupid memes and worrying about homework and having the worst part of your day, the absolute worst part, be that you think someone was judging you. Because in your journey along this path of all the time every where pain, you have met people who absolutely judge you.  Who make no attempt to hide the fact that they think you are faking your issues. That your issues aren’t really what you say they are but something else. They see you crumpled up in a desk at school and ask you how you are and you say fine because of course you are going to say fine; you are fifteen; and you want to BE fine; and you are tired of saying you are not fine; so of course, you say you are fine, but inside, not even deep inside anymore, you wish someone would look past your pasted on smile and your attempts to be “fine” and just give you an ounce of solace. Just a hand on your arm to let you know they may not understand, they may not know what to do, but they know you are not fine. Just someone who will sit next to you, not to say anything at all or try to “fix” you because no one has that magic, but just to not AVOID you.  Just to not stare at you across the classroom and then look away when you meet their eyes and turn to someone else and start joking around and laughing.  Oh, God, how you want someone to turn to you so the two of you can laugh. And not turn away.  Not whisper about you in the halls.  Do they think you don’t hear it?  Do they think the rumors and the gossip don’t get back to you?  The reality of chronic pain is you need so much, but want so little.  And the world—YOUR world, the people you’ve only known for a year or a month or the people you’ve known since kindergarten, the people who should KNOW you, KNOW if you are letting them see your face in pain, it’s no joke, because you were the one who flew off a horse at ten and kept going, you were the one who broke her thumb in flag football but still took your opponent down and dealt with the pain later, that world, who should KNOW you—that world can’t or won’t or doesn’t see that you need so much but want so little.  That world thinks it’s the other way around.

And the reality of chronic pain is that…you want so very much to be out there, in that world, despite the fact that you now know all the people in that world are cowards. The reality of chronic pain is you would do almost anything to be a coward with them.

Except be in pain.

Life is in the Details

My daughter has been officially withdrawn from high school part-time. This is a GREAT thing and happened wayyyyy faster than we expected. Shout out to our home high school!!! She’s not keeping the weight on and hasn’t been able to physically make any period after 3rd for weeks. Yes, she went to Homecoming: understand she had to rest for two days prior (not go to school at all) and she was in pain for three days after. She doesn’t regret at all, but it’s not an easy path. From where I stand, she can go to school and make up credits any time. She can’t make up the social memories, and she can’t do any of it if she’s dead. So, we figure out best case scenario so she can live the best life SHE wants to live. I’d rather have her have amazing friends then get a high school diploma or go to college on time. Life, as the three of us learned five years ago, doesn’t always follow a straight line, and turns out, that’s usually better than OK.

She has asked me to put this out here because she (and I) are realizing there is not a lot of understanding of what is going on with her. She skips school but goes to homecoming….We get how it looks. She’s been doing some cool things on her Instagram account to get her followers to feel comfortable asking her questions–and she’s had some really cool conversations with some amazing teens out there; I am grateful to them and their parents for raising them with such love!!

She has an autoimmune disease that will probably settle down once she is through adolescence–we hope–but it’s not being nice to her right now. Some have suggested to me if I’ve considered if she is bipolar. The answer is YES, SHE TOTALLY IS. But not the way you think. She has great days and HORRIBLE days, totally dependent on the TSH, T3, T4 and Reverse T3 hormones infiltrating her body–yeah, all those hormones and your body’s ability to digest them totally control you, more than you know–AND how much her own white blood cells are attacking her because of the above hormones or, you know, just because. Sometimes she has amazing MOMENTS and the next moment she’s on the floor in pain. She can’t eat the way she needs to because her body is basically attacking her stomach, too, so eating is scary pain to her. She and I and her doctors also suspect she has IBS, but we can’t prove that and get meds for it until she is 16 and can get a colonoscopy (unless she starts to bleed cuz, you know, forget preventive medicine at all).

She needs to eat tiny bits and pieces all throughout the day, and WEIRD stuff, which doesn’t work so well when you’re at school all day, AND stay stress free as much as possible, because stress is not helpful to her condition.

She can walk the dog in the afternoon with a smile on her face and joy in her heart, but that doesn’t mean she is not struggling.  It just means she is LIVING and making the choice to LIVE as best she can.

She is not “fixed.” That’s something else she’s been getting. “When will you be fixed already?” And I’ve been asked, too, “So, you’ve found a cure?”

No. There is no “fixing” here. No “cure.” There are meds, which she is on, and she will get them increased as things progress. She will continue to improve. But it will be slow. More slowly than I can stand, sometimes, because I’m her mom, and I have this same disease except it’s nice to me, and I wish for anything we could trade.

But no matter how much she improves–and I have decided one day she will surpass my own good health–she will always have to be healthy, and get the right amount of exercise, and take medication, and watch her mental state. Which isn’t a bad thing at all. And what I’ve had to do for twenty five years. Just being aware and respectful of your own body isn’t really an American thing….🙂

Thank you to everyone who has already given us so much love and hugs, whether they are in person or via social media. It means so much to her (and me). ❤

Just Right

With my son graduating and all his friends we’ve known for so long doing the same, I’ve been hearing a lot from friends that “it goes so fast!”

 

And I’ve been pondering that phrase, “It goes so fast.” Because, honestly, I don’t feel that it has. And me, being me, I’ve been wondering if I am just cold-hearted and clueless or bad or….I always go for the negatives. But….there is this conviction at the bottom of my soul when I am alone with myself that I’m not any of those things.

 

It hasn’t gone fast. The years, that is. Raising children. My kids, going from in the womb to needing showers and having swearing contests with me and driving me home after I’ve had a margarita at dinner.

 

It’s gone just right. I know how we got here.

 

There are a few days, months, moments, of course, that are blank. But…I really don’t feel like “it” has gone fast at all. I don’t feel like I “blinked.” I feel like I’ve had many, many blinks, and….where they are now…it’s RIGHT. Like, this is of course where we are after 18 years. It makes SENSE. Just like me going from 2 to 6 to 12 to 18 to 25 to 35 to 49 makes SENSE. I’ve LIVED all those years.

 

My beautiful baby boy has grown into a beautiful man, and I can tell you exactly when and exactly how. I can trace every key moment –and many not-key moments–from the day he was born to the now. Same with my beautiful baby girl who is now a beautiful young woman.

 

And yes, I’m tired. A between the shoulder blades weariness that sort of settles into my bones when I stop moving for long enough. And I’ve totally lost a lot of my mind. But I don’t think I needed those pieces anyway. I’ve grown so many NEW pieces to my mind, I often don’t recognize bits of me, and I welcome that shiny newness of it all.

 

The weariness is not like that of those of people I’ve lost or that of my divorce or even the more recent weariness dealing with my girl’s chronic pain. It’s a weariness wrapped in quiet reflection, soft joys and wild chaos that remind me why I’m so tired.

 

It’s a weariness that, in the quiet moments, brings such elation to my heart and mind and soul that I cannot contain it and sometimes laugh out loud.

 

I DESERVE this weariness. I’ve LIVED.

 

We had our grimy, chubby hand holding time. We had our time playing Star Wars and Thomas the Train for long, LONG hours in an afternoon. We had our time, even, when my son spit fire at me for two years and said nothing more than “I’m fine. Leave me alone” if he said anything at all. I’m now in this time with my daughter that…isn’t great. She is spitting knives and bullets, not just the fire, and alternately crying tiny creaking sobs because just crying hard makes her hurt. I don’t like it. But I’m in it. And I’m not looking ahead, later tonight or tomorrow or ever. Because tonight might be it, for all of us.

 

You never know when the zombies might come. Or Trump, I guess, in today’s world. Same diff.

 

So, no, it hasn’t gone fast. It’s gone exactly right. And in the dark every night, on the brink of sleep, I whisper prayers that it will remain so.

Relativity

My kids (otherwise known as The Teenagers) and I are in a new place.  As a parent, you are technically in a “new place” every day: whatever worked one day in regards to motivation, instruction, discipline, management, etc., certainly will not hold the next day.  Especially if you think to yourself, “There.  I figured him/her/it out.  Problem solved.”

Don’t ever think that.

Right now, I often literally do not know who either of The Teenagers are from one day to the next.  My daughter, especially, but my son is joining the fun in his own more quiet but no less mood-shifting manner.

It’s nothing personal.  They have no idea who they are from one day to the next, either.

For the first time in their lives, the Teenagers cannot predict what they will be doing even six months from now: my son will be a senior in the college program through his high school, but what classes will he be taking?  Will he still be interested in becoming a linguist?  Will he still be interested in the University of Washington?  Will he have the job he wants to get, which is interning with a travel service that works with Japanese exchange students?  Will his mother have managed to work with him to get him signed up for his ACT and SAT tests in a timely manner?

My daughter will be an 8th grader at her home middle school, but she is quitting band at the end of this year.  Will she lose the friendships she’s made over the last 4 years?  Will one of her besties have moved, as is a possibility?  Will I be one of her teachers next fall?  Will she have grown any taller at all? Will she and her longtime crush still be friends? Will a high schooler ask her to high school homecoming (the answer to will her mother let her GO to high school homecoming would be NO, but that’s for another day).

When your kid is 3 or 5 or even 8, you know, for the most part, where they are going: to school of one form or another.  Their friends are mostly approved and encouraged by you, often because you are friends with the parents.  You may volunteer in their school, so you know everything about their life in and out of school. They may have friends over all the time, but you and the other parents talk and you know what they do, even if they aren’t at your house. You know they will choose a hotdog over a double cheeseburger, because they don’t eat cheese.

They do not, usually, surprise you by ordering both the hotdog AND the double cheeseburger with extra bacon.  Because, just yesterday, they still made gagging noises whenever you offer them a cheeseburger.  Much less a double one, because they cannot eat enough.  Oh, and they also need two orders of fries and, as it turns out, your order of fries, too.  And a milkshake. No.  When they are 5 or 8 or even 10, they eat off the kids’ menu and usually don’t finish it.

When they are 8, you know they would rather spend their time with you on Spring Break, especially when you are offering them a large FroYo with unlimited toppings.

They do not choose to go talk to their online friends about the bombing in Syria because they just need “serious talk with people who know more about history then you.  Sorry, Mom.”

They do not ask you nicely to not go shopping with them because they are embarrassed to be seen with you at the town center where all the teens hang out. They are, in fact, happy to hang around with you and your adult friends, and even hold your hand in public and not roll their eyes whenever you speak and mutter, “PLEASE STOPPPPP BEING EMBARRASSING….”

They do not ask you to take them to Target and then “go away,” and then get into trouble with a security guard because they were climbing shelves. If they do this, at 2 or 9 or 11, you are probably with them, and YOU are rolling your eyes and muttering, “PLEASE STOPPPPP BEING EMBARRASSING…..”

When they are 1 or 7 or 9, they will not drive you crazy because they use your towel and your toothpaste and eat the red velvet cake slice you bought for just you or steal your jeans or eat all the oranges or never clean their dishes or fill the garbage way past the fill one so that when you finally take it out (after you realize your strike isn’t working), the bag rips and falls apart.

But they will also not be able to control themselves when they melt down because the dog ate their retainer.  They will melt down for hours, if not days, and you will have to cancel your lunch with friends, instead of just getting there five minutes late.

They will also not tell you to rest when you have a migraine.  They will not make dinner if you ask them to, or assure you they can “forage” with their friends and be just fine.

When they are 6 or 8 or even 12, they may not pour you a glass of wine after you’ve had a long day.  They probably won’t tell you to go out with your friends to see a concert and assure you they can get themselves dinner and to bed on time and everything will be “fine.”

They probably won’t give back to you as much as you give to them, freely, and increasingly less as little needy squirrels and more as equals. As people. As people who you may not know from one day to the next very well right now, and as people who often drive you nuts because they are like stoned roommates much of the time right now.  Still….they are people you know you are proud of.

After you have taken many deep breaths, practiced yoga, ate half a chocolate bar and poured a glass of wine and promised yourself, “Still better than the potty training phase.”

 

The Blessings of Boredom

“My son is so bored in school.”

“She shouldn’t be bored.  She should be excited to learn!”

“Every day she complains of being bored.  I’ve asked her teacher if we can give her more challenges, but I don’t think I’m getting through.”

“I don’t want my kids to be bored at school.  I want them to be engaged and passionate!”

Those are all quotes from friends, acquaintances or even parents of my own students.

I’m not that parent.  I’m the parent who refused to put my son into the Gifted Program during his school career, even though he was bored to tears every single day throughout elementary, middle and high school.

Now in Running Start, a program where he can take college level courses and graduate with an Associates’ Degree at the same time he gets his High School Diploma, he’s still bored.  He’s going to double up on classes starting Winter Quarter so he can graduate a year early and start college early.  And I will bet anyone all my Buffy the Vampire Slayer comic books that he’ll be bored doing that, too.

In fact, the kid will be bored until he’s translating ancient Sumerian texts full time or writing historical fiction while teaching himself Mandarin.  Yes, he does those things–he’ll probably be hired out of college by the FBI or CIA or NSA to translate obscure Turkish dialects.  And to be perfectly honest, he’ll probably be “bored” doing that, at least some of the time.  Boredom to him means it doesn’t take a lot of work.  But that’s OK.

He is challenged every day by the other aspects of life.  Like making friends.  And knowing what to do with them.  Or not walking away in the middle of unloading the dishwasher or cleaning the bathroom because an idea popped into his head or he suddenly understood a phrase of Latin he read.

My daughter has been bored from day one, too.  But she has found solace in the social aspect of school.  She is the opposite of her brother: she is my wildly creative hummingbird who flits from one project to another.  At any moment she may be trying out a new recipe or creating her own method for painting nails or sculpting adorable creatures out of clay.  She has a fabulous squad of tightknit friends, and many more waiting in the wings.

School bores her because it is hard: thinking in such structured methods and sitting down all day, listening to her teachers, not being able to run out in the rain whenever she wants…that’s boring.

It’s been suggested to me that I put her in an artsy private school or one of our district’s Choice schools. But she’d be bored there, too.

A lot of times, “boredom” to a kid means they aren’t getting to do exactly what they want.  Doesn’t it mean that for adults, too?

I was bored in school.  I don’t know many of us adults who weren’t.  And I’m not sure when we all started deciding school was supposed to be amazingly exciting and constantly passionate.  School is SCHOOL.  It’s to learn, and to learn how to learn, and hopefully not be traumatized.

Can we have fun in school?  Most definitely.  Can we do more than just lecture and take notes?  Always. Can we try for some passion?  As a teacher, I do, every day.  But it’s not always successful: I currently teach US History.  There are some fascinating pieces to US History.  Pieces I can do improv with,  or mock debates, or in depth group projects that encourage the kids to really dig deep into a topic.

Then there are the pieces that are really boring and, to paraphrase my kids, stupid.

And yet, often, at the quiet, boring, stupid pieces of US History, my students and I have the best times.  Even better times then when we are all excited and passionate.  Because we are bored, and our minds are quiet, and unfocused, and open.  We find peace in the boring, stupid pieces.  We find discussions that may be slightly off topic but teach us who we are.  We find laughter.

When I worked in the Chicago corporate office of an Engineering/Architectural firm, I had a lot of super boring, stupid days.  The meetings were insane.  I do not like meetings.  Still don’t.  Serious waste of time.  Right?  At least in terms of the business end of things, which honestly could be reviewed or communicated in ten minutes flat.  But I had to get through them, and because I did, I learned about my boss and my colleagues: how they interacted with the rest of us, with the world.  I learned about myself, even though it wasn’t always in the moment that I realized I was learning about myself.

I made really great friends that I still have, even though a lot of the actual knowledge or what I even did in school or most of my jobs is gone.

I learned how to LIVE. And living is sometimes boring.

What are we teaching our children if we are telling them that life should always be passionate, engaging, and exciting?

 

 

 

 

 

Summer Time

Last summer, I blogged about my sweet children driving me insane.  We spend a lot of time together, and a year ago, I didn’t even have work to separate us.

I remember that feeling of, “OMG CAN I READ TWO PAGES OF MY BOOK WITHOUT YOU NEEDING SOMETHING?”  But I also remember taking deep breaths and, for the most part, keeping my swearing only to myself because I knew someday it would change.

Someday, they would have lives.

That day has arrived.

This summer, my son is teaching himself Latin, in addition to continuing his own Japanese language studies.  He spends a lot of time translating Japanese poems and Latin books he finds online.  Starting in a week, he’s working at the UW a couple days a week helping Japanese students.  He’s heavily involved in BloodBourne and Dark Souls , and he’s also watching a lot of Japanese anime, with and without the captions, as part of his Japanese self-studies.  He speaks a lot of Japanese to me, and I either reply in stilted German or bad Spanish.  Not that I know what he’s saying.  But then he doesn’t know what I’m saying, either, so we usually end up laughing.

He walks about 20 miles a week, and he comes out of karate rolling on laughter about inside jokes that he happily tells me, and sometimes I even laugh, but I’m removed from it all.  We used to walk together, and he would tell me all his story ideas and goals for the future.

He used to cry if I left the dojo before his practice was over.

Meanwhile, my daughter has discovered a social life and social media.  She texts her friend travelling in Italy and takes solo bike rides around town. She makes music videos on an app called Music.ally, which is pronounced musically, not Music Ally, OMG.  The music videos are complete with outfit changes, scene changes, sound and video mixing, and sometimes, the dogs’ participations (not necessarily willingly).  I’m horrible at memorizing lyrics. I tend to make up my own.  My daughter remembers everything after hearing it once, and she wants to “help” me learn the real words. But it’s rapid fire, and I am left behind, like I was for years when I would have sworn it was “Amber rain” and not “I’m all right.”

She goes into her room and talks to her friends or stays up until 1 am reading or makes music videos or creates amazing animals out of clay while listening to Rachel Patten, who is her most favorite singer ever.

She still tells me everything she and her friends do together, or what they texted or said and shows me her videos and theirs.  She talks to me about her books in depth and lets me read them and asks me questions that are echoes of questions I have asked her about books down through the years.

Bu she closes her bedroom door when she goes into her room to do anything.

This summer, I am find myself longing for still moment when we can all just sit in the same room for more than 30 minutes.  I find myself wanting to hang out with them and listen to their silly jokes about sex and “out of the mouths of babes” reactions to news, politics, life.

They still annoy me with their lack of understanding for how to put toilet paper on the toilet paper roll or take the garbage bag out of the garbag can before it is so full, it literally explodes when I try to take it out.  They still need me to buy food for them, apparnently, because several independent expeditions I have sent them on have resulted in a lot of not-what-I-asked-for. And they still need me to be there for them when they need me, and tell them everything is going to be OK when they don’t think it is.

They don’t like it when I’m gone too much in one day or too many times in one week.  They miss me when I take a weekend.  They talk to me all the time, and we spend a lot of time together, still, especially given that they are 16 and almost-13.

But.

Last summer, I was still parenting children.

This summer, I would say I am more of a mentor–much loved, I know this– to two amazing people.

And, I hesitate to say this because of all the “DON’T BE YOUR CHILDRENS’ FRIEND” articles out there, but…they are my friends.  Young friends, still.  I still need my own friends, and always will. I still get to make them do things and I have no problem calling them on their stuff.

But…I like them.  As people, as kids…the toilet paper and garbage bag issues aside….I like them.

 

I will be honored if, someday, they choose to call me their friend in return.